Life of a Furnace Mother

MRI

2011-07-28T07:13:00.000-07:00

Whew.

It was a very long day.

It started out with Z throwing up twice (we think it was his stratterra on an empty stomach). We got the hospital fine at the correct time and proceeded to sit and wait for almost 2 hours. I realize places like this have to be flexible, but man, it sucked. Eventually, I went up to the admitting person and asked how much longer because Z was getting antsy. I told her he was autistic and would be calmer if I could give him a time. That I knew they didn't know exactly, but even a worst case scenario would give me something to work with him on.

Those words were like magic. She got on the phone and a Child Life Specialist (someone who is there to help kids like Z) came out with some sensory stuff and a visual story about the MRI. They took us straight back and found us a room with a DVD player. She also went to find people to make sure things kept moving.

I wish I would have said something about his autism sooner! On the other hand, I'm always amazed that someone didn't flag his file somehow to let them know he had autism. I'm sure Mr mentioned it (though he may have assumed they already knew like I had). Apparently, Hasbro has programs and social stories and the like in place to bring the kids in before their test to help them prepare. I would have loved to have known that ahead of time!

Anyway, after another hour (it's now close to 1:00 pm, we got there at 10:00), and two more nurse conversations (one of which explained everything to us beautifully), they finally came in to give Z versed (up the nose, which he hated). Within 5 minutes, the kid was OUT. Not entirely asleep, I could see/feel he was aware of things but unable/unwilling to move or anything.

They came back to start his IV. And foolish woman that I am, I watched. I was holding his arm (he was aware enough to start jerking away from the IV placement-they did put the numbing cream on first) and watched them place the needle. Now, I have a needle thing (I think most do) and watching them move that needle around under his skin placing it about had me either puke or pass out. When they left, I started crying and Mr and to tell me to pull it together.

Mr had to carry Z to the MRI (Z was that out of it) and we had to stand and wait for the doctor to come in. Mr got a real workout! 66 lbs of dead weight. Z was semi-awake, groggy and out of it but with it enough to try and peel away the stuff holding his IV and trying to take off his ID bracelet. I was trying to keep his hands still and not jostle him too much lest Mr lose his grip.

Doctor shows up, we put him on the table and they start to give him the iv drugs. First one was lidocaine to numb the veins. Z did ok with that. Then the sedative (which I guess burns going in) and Z started fighting us. The 2 techs and I had to hold him down and keep him from ripping out the iv. it was kind of funny to watch, one minute he was fighting like we were trying to skin him alive and a second later he was out for the count.

The MRI took about an hour. Mr and I got to stay in the room with him the whole time, not that he woke up or anything (damn but it's loud in there). The Tech initially asked if we wanted to try for him to stay away (but maybe on versed) but we looked at her as if she were insane. We definitely made the right choice, no way would Z have made it through the noise and stayed still.

Afterward, he slept for about an hour or so. He would wake up, then doze off again. Mr said the first words out of Z's mouth would be "mommy". I said it would be "library". I won

Z was groggy and a bit of a drunkard for another 1/2 hour or so. We left about 4:00 (we had been there since 10:00) and he still hadn't eaten much. By the time we got to the first library, he was pretty alert. By the second library, he was wide awake and active and by the time we got home (about 6:30) he was back to himself, though a bit on the hyper side (we suspect he didn't get a full dose of his stratterra that morning).

He eventually fell asleep around 11:00 that night and slept until almost 7:00 this morning (his normal time). He was hungry, awake, playing and ready to go back to camp.

Tonight, Mr and I are going to see harry potter as a treat to us (and to Z, since his aide is going to sit with him and he adores her).

We get the results on Monday. I'm glad it's over and don't want to do it again if I can help it!

The Latest IEP

2011-06-10T11:44:00.000-07:00

And things are going fine. I'm constantly amazed at how wonderful this school is. Nothing is perfect, but they work with us, which is awesome.

Z's moving on to 2nd grade next year. We have a tentative placement for him, which can change but I think they will try very hard with getting him in with this teacher. They seemed to be preparing us for the changes-Z is going to be going at a different pace with different lessons (though still in the classroom). It sounds like the differences between him and his classmates are going to be growing in the coming years. It's tough to think about, and I'm sure it is going to be even tougher to face but that's the way things go.

They think he may need some PT since he can't bend over and touch his toes; teacher/aide think his back/stomach muscles are tight and he needs some sort of stretching routine. He had core strength issues when he was younger, but I had thought he was caught up by now. It's not as difficult to hear some of this stuff as it use to be. I'm either numb or getting accustomed to it or just too damn tired (I'm on the road again and am hoping to be home later).

On the bittersweet side, his ST is pretty happy about some progress he has made with respect to emotions. I'm not sure what the technique is called, but she has him draw pictures of faces with emotions and then has him write how he is feeling and why. Either today or yesterday he told her he was mad because mom was gone. So, two thumbs up for communication, two shots of tequila for mom to deal with the guilt. I hope travel for work goes down soon (three trips in 2 weeks). I know traveling is part of my job, but I want to stay local for a month or so if I can (except for that vacation trip, of course since he will be with me).

His new meds seem to be going well, but we still haven't gotten anywhere near full dosage, so we wouldn't expect to see any changes anytime soon.

Thanks for reading! Go get yourself a cookie for your effort

What's going on with us....

2011-06-10T11:21:00.000-07:00

I've been horrible about keeping things up here. I would like to blame my being busy (and I am), but I think it's more laziness than anything.

A lot's been happening in the past few months. Back in January/February, Monster's teacher and aide noticed some troubling behavior. It seemed that he was spacing out (for want of a better word) and they couldn't regain his attention as usual. Once or twice, the aide was very concerned since after Monster "woke up" he seemed disoriented and tired. They did some googling, and seemed to think these episodes were like absence seizures. So they talked to us, we talked to his pediatrician (and some folks around here) and eventually found a pediatric neurologist in Massachusetts. We went in April for a visit and exam (Monster did great)and scheduled an EEG.

The EEG was a bit of a challenge for all of us. First off, Monster doesn't like things on his head. He's gotten a lot better and will wear hats occasionally and knows he must wear his helmet to ride a horse or his bicycle. But he hates having his hair washed or any goop in hair. Getting all of the wires hooked up was anything but fun. Mr and I had to hold his hands, his legs and hold him down (with the aid of a technician or nurse). I must say, however, the lady that wired him up was FAST!

The EEG took about 20 or so minutes. Since Monster wanted to immediately rip his wires off (they were stuck on with a glue-like gummy substance), we had to hold his hands, or at least keep them from being able to reach his head. One thing that really helped was having a timer on so he knew exactly how long he had to keep the wires glued to his noggin. I warned the tech that he wouldn't tolerate the wires 1 second beyond the timer, so we settled upon 30 minutes on the timer to give her plenty of time.

Monster got to play with Mr's phone, while I got to hold the timer. Monster checked that timer about every second or so, but it kept him mostly calm.

The EEG itself was interesting. He just sat there and played for a while (most of the time actually). But they also tried to induce whatever by having him blow a pinwheel. He got tired of that pretty fast, but hung in there and did what he needed. Then they flashed strobe lights around him. He really seemed to enjoy looking at the strobe lights a lot. And, voila, it was over and he got to rip off the wires. His hair looked pretty wacky afterwards, though ;) (and you can tell how thrilled he was).

About two or three weeks later, we got the results back. It seems as though Monster has increased electrical activity in the back, right part of his brain. According to his neurologist, this is the part that deals with his cognitive function and attention/focus. The Doc said that they use to not treat for this, but with the possible regression noted by Monster's teachers, he recommended that we start Z on anti-convulsants. Scary for the parents, but it is what it is, right? Right? The medication is Lamictal (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000957/). We won't be at full dosage for a while and we likely won't be able to determine if it has any impact until the fall.

In addition, the Doc wants to do an MRI to check for any structural abnormalities. Ok, another test, we can do this. However, we need to pull Monster's spacers out. Spacers that need to be there to prevent his needing braces when he gets older because of the teeth we had to pull (why do I feel like we are being punished for not getting him to the dentist sooner?). So we had the spacers yanked (actually, Z had removed 2 of them on his own, so they only had to remove 2 of them), which was also tough on Z since he had a spacer thingie used to keep his mouth open. He was a bit freaked out by the whole thing. His dentist wants to try and put them back in next fall (without the surgery part this time). YIKES!

Well, that's it for the amazingly electrical brain of the Monster. Next up, his latest IEP meeting (next post).

Swimming

2010-11-28T08:10:00.000-08:00

There have been lots and lots going on since the last blog entry, but I'm not ready to really blog about it (nothing bad, just a lot for me to process).

So I've decided to just post a bunch of swimming videos ;)

Enjoy!

Autism Unit at School

2010-10-19T15:39:00.000-07:00

I should have written this blog immediately after we got home last week, but I think I've been processing it. Now, I've forgotten half of what happened!

Last week, Z's teacher arranged to have us and one other mother (whose son also has autism and is in Z's class) to come speak to the class. They put together a whole unit on autism.

First, Z's special ed teacher read a book on autism (can't recall which one, now, but I liked it). Then we (the parents, Mr, I and the other mom) sat down and just answered questions. The questions I remember are:

Why does Z cry in school? This was news to me and I need to ask teacher about it.

How do they communicate?

What does he do on the computer?

How does he go to bed? I thought this was a funny question.

Besides the computer, what does Z really love?

How does he play?

What does he do when he gets angry?

The other mom also did an exercise with the kids that was really cool. She wrote up a bunch of random things and told the kids to play the game-with no further instructions. It was to demonstrate how difficult it was for kids with autism who don't understand the "rules" or understand what is expected of them. To show the kids how frustrating it could be.

A kid also said something I really love, that kids like Z can't speak because they can't find their words in their mouths.

After the question and answer period, there were 4 activities.

(1) listen to instructions to do something while also listening to a story. I really liked this one because it shows how difficult it could be for our kids to focus or filter out background noise.

(2) stringing beads while wearing gloves. Another good one to show the difficulty of fine motor skills.

(3) Writing sentence while wearing goggles smeared with vaseline. While not directly applicable to autism, per se, it did demonstrate how difficult it was to write when you couldn't focus on the lines to guide you.

(4) walking forward and backwards on a tape line while looking through the wrong end of binoculars. While not obviously or directly related to autism, per se, it does demonstrate the difficult for anyone who can have difficulty with depth perception or spatial problems.

It was wrapped up with a few more questions and then the school day ended.

All-in-all, it was pretty cool and I was very appreciative of the school making an effort to help the kids get a better understanding of what autism is and the challenges our kids face. Of course, this meant I had to agree with the school revealing Z's diagnosis. I understand that can be a very difficult step for some parents, especially those parents of children who aren't overtly autistic. However, since Z already has an aide, it is pretty obvious that something is different with him, so it was an easy decision for us to give them a name and context for what that is.

I love my school. They aren't perfect, but they do try hard.

Guess What? Monster has autism.

2010-09-26T10:09:00.000-07:00

I admit, I couldn't think of a good title.

There are some characteristics that are associated with autism spectrum disorders.

1. Lack of social awareness
2. Difficulty communicating
3. Requiring rigid routines
4. Concrete thinking

Yeah, there are more, but those are the ones I think of as fairly common across the spectrum.

Monster was unofficially diagnoses with autism when he was 4 months passed his 2nd birthday. He got the official diagnosis when he was 3 and his diagnosis was confirmed when he was about 3 1/2. However, because he lacked the ability to communicate effectively with us, it was always hard to determine how he viewed the world. In the past few years, his language has improved so much. Even more, he has gotten better and better about expressing his emotions. A few weeks ago, he asked me for a magic wand. since he watches a lot of Disney movies, I'm sure he has a good idea what a magic wand is. Anyway, I got a stick off the ground and gave it to him and he proceeded to wave it around for a while (it really was cute to watch).

Last night, I picked up a stick and told him "look, a magic wand". I had pointed it at him and started signing "bippity boppity boop", but he got very scared and wanted me to point the wand somewhere else. I'm sure he thought the wand really was magic and I was going to turn him into something. I then had a discussion about him regarding pretend vs. real, of which I'm not sure how much he understood since he kept giving my stick a wary look.

So another check off of the list-Monster is a concrete thinker, though coupled with a rich and amazing imagination.

So, yup, Monster has autism ;)

Our first day of school Odyssey

2010-09-02T07:35:00.000-07:00

Well, we managed to miss the bus this morning-not an easy thing to do when they are picking up your child AT YOUR HOUSE (and no, I don't mean a bus stop that happens to be at our house, they actually came to our house to pick him up).

The school secretary told me 8:00, same bus driver, aide on board. The bus showed up at 7:45, new driver/monitor and no aide. We aren't the type of folks to be ready early, so after oversleeping this morning (and having only been awake for 15 minutes), we hit the high gear and I tried to set a speed record for Z to be dressed. Mr just went and told the bus driver, sorry we thought it was 8:00, we'll drive him.

Anyway, Monster fell asleep without a problem last night (I was expecting a full out war) and seemed happy this morning. When I was getting him dressed because "the bus is here", he said "Camp", and when I said no camp, school, I got the customary "No school", but his heart wasn't in it. He was just testing boundaries. We got him medicated, washed, brushed and dressed (sorry, no pictures). When it was time to go outside, he didn't even detour to the swing or bubbles, just straight to the car and got in h is seat.

On the way to school, we asked him what he says when he gets to school and he responded "Good Morning, Miss V"-and we hadn't prompted him before this, he just remembered from last year! When we got there, his aide had us pull around the way the bus would (to get him into his routine somewhat, we had texted her about the bus kerfuffle) and let him out at the bus stop. He got right out (after putting his shoes back on), grabbed hold of V's arm and started rubbing his forehead on her arm-kind of like putting his scent on her Wink.

He seemed eager for his overly emotional, hovering mom to leave, so Mr and I said good bye and headed back home.

I told Mr I didn't think Monster would last past lunch; Mr thinks V can coax him to stay until the end of the day. I suspect Mr is right.

Not a bad beginning.

Bedtime Battles-Part 4 (will this ever end?)

2010-08-17T21:13:00.000-07:00

Well, I had a brief glimpse of the promised land earlier this summer. For a long while, Monster was going to bed, in his bed, with little or no fuss. We even had stretches of DAYS where he went to sleep on his own.

A big part was summer camp. He loved camp and would come home so bloody exhausted, he wouldn't have any problems sleeping. Finally, something that provided enough sensory input and fun that he was comfortable. I think the kid really is a whale-or has the soul of one. Keep him in water all damn day, and he is comfortable and happy.

Alas, nothing lasts forever.

It all started when I started traveling a bit more for work. I've done occasional trips in the past, but over the last 4 weeks, I've been gone about 7 nights-and the first trip I was gone for three nights in a row. One night, he started crying in that heart-wrenching way as if his best friend had died. After that trip, he was a bit more clingy than he had been, but he was still in camp. Then I went away again, just for 2 nights. His clinginess got worse. I wasn't allowed to sit in the next room, but had to be in his room with him. I would have to tell him where i was going (to the kitchen to cook, to the bathroom) and even then, he would come and check to see I was there every few minutes.

Then the surgery (see last post). For a few nights, I had to reassure him that he wasn't going to the doctor's the next day several times until he would go to sleep. He also has been telling me "no school", now that camp is over.

And now I'm, once again, gone. Mr texted me tonight that Monster just wasn't going to sleep, he wanted his mommy.

So it feels as if we are back to square 1, with the added torture of knowing what a "normal" bedtime is like.

In so many ways, it was so much easier when he was living in his own world. He didn't notice or wasn't interested in the rest of the world. That's not really correct, though, is it? He just couldn't express himself then, the way he can now. I wish I didn't have to travel without him and Mr. But seeing as we need my salary, and this job allows us to live in the school district of my dreams, we'll just have to find a way to get through it all.

Dental Surgery

2010-08-12T05:43:00.000-07:00

It has always been a struggle to get Monster to let anyone look in his mouth. When he was younger, the danger was him biting anything (especially fingers) that came between his teeth. He's gotten a lot better with time and maturity. He will open his mouth for the doctor to look in his throat, let us brush his teeth and look in his mouth, things that.

A few months ago, it looked as if some of his teeth were chipped or broken. We made an appointment with a pediatric dentist (who was awesome-did the whole examination in about 5 minutes and started out with "No guilt is allowed, you are here now") who said his four primary molars were rotted and had to be removed, and that his secondary molars had cavities that needed to be filled. He advised we have Z put under to have the extraction completed-given his autism. A next option would be for an oral surgeon to do it with gas or the ped could do it in the office (no pain meds). We started with the "putting him under" option. The pediatric dentist sent us to a clinic in Providence. Our appointment there was a few weeks ago. That dentist got Z to allow him to look with the mirror doohickey (first dentist didn't use one at all) and agreed with the extractions but said the secondary molars would likely need crowns. We went ahead and scheduled the surgery.

Today was the big day.

Monster didn't want to go to bed last night. He was more clingy than usual. Since I've been traveling a bit the last few weeks, he has not wanted me out of his sight. He follows me to the bathroom or the kitchen. He'll check up on me if I'm in another room every few minutes and yesterday when I got home, he came out of his room and said "mommy, in here". He didn't want me to let the dog out and I was suppose to stay in his room with him. Bedtime was tough, we think he had a headache. He wanted "4-mommy and daddy and zachery and diego". Which is a tight fit on a queen sized futon.

He did sleep all night-which is not normal-in his own bed. I had to wake him up at 5:30 this morning. Why is it that on weekends, he is up 4-5 am but the morning we need him up he decides to sleep in? Waking him up isn't easy. He has too much of me in him. We get him up and to the car. Now we are running late (which is typical) and Mr figures he needs to speed the whole time to get there at 6:30 (as if they are going to start without us). This freaks me out, so I spend most of the drive trying not to panic and scream at him.

The hospital is great (Our lady of Fatima in N. Providence) and they have experience with children with autism.

Once we got there, the lady behind the desk was wonderful as I went slightly panicky-couldn't fine insurance card, etc. She kept saying "don't worry, no rush". Finally got the paperwork finished and were ushered back (took a bout 5 minutes, it just seemed longer to me). When we got there, Z apparently didn't like the little TV w/ VCR they had. He wanted to leave. He asked for a "new TV". Eventually, he calmed down. We brought his portable DVD player (which he generally isn't allowed away from home).

They had the hospital pj's waiting, but they said if he wouldn't wear them, no big deal. He was a trooper and put them on. He even put on the slipper socks. He let them take his temp, his O2 levels, etc. He kept asking to leave, but we were able to re-direct him to his DVD player. All of the doctors came out and said hi, explained everything to us (even had a model of with teeth to show us what everything looked like). The anesthesiologist brought out the mask for us to play with-DH breathed through it, then me, then Z. We even got Z to hold the mask himself.

When we asked, Z asked for Mr to go back with him instead of me. Mr put on the lovely gown and hair net. Z did NOT like M wearing that "hat". However, I asked Z if he wanted to wear a "hat" and he said yes. Then he proceeded to amuse the doctors by pulling the hair net over his face, peaking out from under neath it and smiling-Z being charming.

He started to freak a bit when we moved the gurney to the OR, but they were cool about his bringing his DVD player into the OR (until he fell asleep). M told me that everything was fine until they put the mask on-M did the "daddy's turn, Zachery's turn"-but when it was Z's turn, the mask had to stay on. M said he held Z's hands, another doctor/nurse held his shoulders and Z glared at M (all of this according to M, since I was left in the waiting room).

So now we wait. Doc said they are going to first take x-rays, then clean his teeth. Likely 4 teeth pulled, 4 teeth crowned and 4 teeth sealed with 4 spacers cemented into place.

For your amusement, here are some pictures I took while we waited:

"Go this way"-out of pre-op

Chilling out waiting

Daddy's turn:

Z's turn:

Z got upset when DH had on the blue hair net, so I asked if he wanted one of his own. Here he is in his awesome blue hat.

The surgery took 4 hours. 4 very long hours for me. Doctor came out to talk to us and said Z was waking up fast. She told us it all went well and gave us the rundown on care and the next appointment. In the end, he did get the 4 molars pulled, plus one of his upper front ones (which was very, very, loose), 2 crowns, 4 spacers, 6 back teeth sealed.

Z was crying, with blood drooling from his mouth, watching a Disney movie and just looking pathetic overall. He started crying when he saw us and M picked him up and put him in my arms. Z sat there, curled up, dozing for about 30 minutes. Then he asked for his DVD player. Then for water. Then to change his shirt. Change his pants. Go home. It was a very trying final 10 minutes before we were cleared to go. In that time, he woke up enough to drink two glasses of water.

On the way home, we passed by a Golden Arches, so he asked for french fries. And soda. We let him have both. By the time we got home, he had drunk a medium diet coke from McD's and a medium order of fries. When we got home, he put on his shoes and ran to the door. He did (briefly) crawl into bed (for like 2 minutes) before moving his DVD player and the like to the corner closest to his DVD collection.

We've been home 5 hours now and he's eaten yogurt, veggie booty, veggie chips and another order of french fries. He's watched DVDs, Jumped on his trampoline, done flips and rolls, run around, taken a bath and is currently playing on his computer.

Little dude's a freak of nature, I tell ya!

Bedtime Battles Part 3

2010-07-15T08:32:00.000-07:00

I was right. A big part of the bedtime battles was his not wanting to go to school. Since school has been out, he has (for the most part) been able to fall asleep, in his bed, within 5-10 minutes of bedtime. Since camp started, bedtime has gotten a lot easier.

We did push his bedtime back a bit-mostly because he needs the room to be dark-but he is falling to sleep sooner. It's really the camp, though. He runs around and plays outside, in the heat and water, for 4 hours every day. Poor kid is exhausted when he comes home. The only downside has been that we tend to let him zone out more in the afternoon-stim on dvd's and the like.

Of course, we actually went puddle jumping together IN THE RAID the other day (and last night). Previously, Monster hated getting his feet wet. There were days we would have to carry him to the truck/school because he couldn't/wouldn't step on wet ground. He also doesn't like to get his hair wet (except when swimming) and hated going out in the rain. Two days ago, he was looking longingly out the door and I told him we could play outside in the rain and if wanted he could wear a hat (to protect his hair). He agreed to the hat (and wore one) and we went playing in the rain.

here are some pictures of him playing in the rain.

Bedtime Battles Part 2

2010-06-10T13:55:00.000-07:00

Ok, just a quick note on the bedtime wars.

New strategy.

Monster goes to bed with iPod/iPhone for 10 minutes.

Afterward, he can choose to stay by himself or have mommy/daddy in their bed while he is in his bed. He has to stay laying down with head on pillow, eyes closed.

So far (been doing this for 3 whole nights ;) ), he ends up in my bed, but only when he is ready to finally fall asleep.

Next step, leaving before he is totally asleep. The biggest hurdle is I'm pretty sure there is a sensory component that I'm missing. I think something like the weighted blanket or mummy bag (sleeping bag that is tight on your body) will work, but he has to consent and right now he isn't ready to want to go to sleep, yet.

2 more weeks of school (10 days total). We'll see if things get better then or if I've just been deluding myself!

Bedtime Battles

2010-06-04T13:29:00.000-07:00

Bedtime continues to be a major struggle.

The weighted blanket was a fail. If I put it down by his feet, it seems to help during sleep, something to press against, but he doesn't even want it on his bed.

On Monday, Memorial Day, Monster went to bed by himself and fell asleep by himself. Yea! But, alas, it was a fluke and has yet to be repeated. The best we can figure out, he doesn't want to go to school. He is very much done! (Not that I blame the little guy, it's been a long, tough year) So, in his mind, it seems like if he doesn't go to sleep, school won't ever happen. Being the mean and cruel parents we are, Mr and I always make him go to school the next day.

We changed up his bedtime, again, a few weeks ago. Instead of a movie at bedtime (after the 666th viewing of Escape to Witch Mountain), he gets to play with an iPhone/iPod Touch for 5-10 minutes in his bed (by himself). Afterwards, we say goodnight, turn out the light and let him try and go to sleep by himself. 3 weeks of no luck-we eventually have to go in and lay with him-we had a success on Memorial Day. I think it took him about 20 minutes or so, but Mr. had the resolve to let Monster work through things on his own. Every night since, Monster gets up and either starts jumping on the beds, sings, or just comes out looking for us. We end up in the room with him, again, and he proceeds to try everything he can think of to stay awake, including trying to provoke us to the point of yelling (something, I, unfortunately, with an embarrassing frequency).

He shouldn't have been able to fall asleep on Monday. We went to 6 Flags, got home late and he was amped and over-tired. Usually a recipe for a long night for Mr and I. So what was different? The only things I can think of are he got to spend a lot of time with me and Mr (all day at 6 flags) and he may have thought he was done with school (since it was Monday and he didn't go to school).

We have three more weeks of school, but we are going to try an experiment tonight by letting him know, emphatically, that tomorrow is a "home day" and there would be no school. Maybe that will be what it takes, or maybe not. Another thing that concerns me is that we praised him for being "a big boy". I think he doesn't want to be a big boy. He often tells me he is a baby. Can't blame him for that, growing up can be a big pain, especially if it means he has to be more in control with more responsibilities.

We aren't giving up, though. We will keep trying different things. Keep trying to let him work things out on his own and keep crossing our fingers.

The $15, no-sew weighted lap blanket

2010-05-16T06:57:00.000-07:00

Monster uses a weighted blanket at school. I've been toying with the idea of using one at home as well. The biggest stumbling block was the cost vs. his potential use. I don't mind spending what I have to get something that will help Monster and he'll use. We dropped a huge chunk of change on a loft bed with a slide that he loved to play on (even if he didn't actually sleep in it). The slide is now outside on his swing set and he is actually sleeping in the bed (part time anyway).

I looked up how to make one, and didn't see anything that I could do without sewing. I don't have a sewing machine and have only the most rudimentary sewing skills anyway (I can hem up something or patch a seam, but I'm not a seamstress). After a few stops and starts and alterations, I was able to make a 6lb lap blanket yesterday and Monster crawled under it during bedtime. I have no idea if it was the blanket or the super long bath, but he fell asleep quite nicely (for a change).

From my reading, the weight should be about 10% plus 1 pound. Monster is just under 60 lbs (he lost a smidge of weight), so I went with a 6 lb blanket.

I found all of the components at Ocean State Job Lot (similar to Big Lots) for just under $15.00. Most people suggest that you fill weighted blankets with poly pellets because they are washable. I chose to make the weighted inserts removable so the cover can be washed without the weight in them. If you substitute Poly Pellets, the cost will double or triple. You can also substitute aquarium rocks-which should be machine washable.

What you need:

Queen sized pillow covers (the kind with the zipper)
3 pairs of socks
6lbs of rice
stitch witch (a no-sew bonding material, you can find it at Walmart or any fabric store)
An iron
damp cloth (for the stitch witch)
smooth surface like an ironing board
some sort of scale (although 1 lb of rice is just over 2 cups)
Tape measure
pins

Fill each sock with 1 lb of rice. Each sock was sealed with stitch witch. Cut the stitch witch to fit the opening of the sock and follow the directions on its packaging.

Using the queen sized pillow, I found that placing the stitch witch at about 4 3/4" intervals evenly distributed the socks along the length of the pillow. You can place the socks in the pillow case first-they should lay (or is it lie?) across the width of the pillow-to find what you think is the best placement. Basically, we are going to make channels in the pillow case to hold the socks in place.

I would mark the location for the stitch witch with pins, insert the stitch witch between the two sides of the pillow case and iron it in place. The stitch witch was only about 3/4 the width of the pillow case so that I could still maneuver the weighted sock into the channel (and back out again as needed). Repeat 5 times so that you end up with 6 channels.

Insert the weighted sock into each channel and zip the case closed.

If you wish, you can also use a standard queen size pillow case to use as a cover.

The whole thing took me about an hour or so.

To Retain or not to Retain

2010-05-11T18:08:00.000-07:00

We had our second IEP for Monster today. It was kind of funny how we found out about it. I had emailed the Special Ed director for something else (and event) and she casually mentioned "see you this afternoon", to which I replied "for what?". Apparently there was an oops somewhere and we never got our notice. No big deal (at least not here). My boss is very flexible so I took a half day (not a hardship since I'm currently battling the spring cold).

I was once again struck by how different our IEPs are. Mr and I both feel like we are actually a part of a team. When the school recommends something, there is such a feeling of trust on our side-something that we never really had before. Partially because they have suggested things that we were trying to fight for previously.

Ok, back to today's IEP. It started out with the special ed director bringing up what is, generally, speaking, a very touchy subject. She wanted us to think about holding Monster back-having him repeat first grade. Mr and I had discussed holding him back and having him repeat kindergarten-so he could mature a bit more socially.

This is the same reason they want to hold him back-to allow him to mature a bit more socially. They made a very good argument. First off, his play skills have been emerging. Apparently in his speech and OT he is playing with different toys and interacting with people. Second, since he has been through first grade already, he would be more comfortable and be able to participate in the class more fully. They are also concerned that second grade has a lot less play involved and it may be even more overwhelming for him. The way I interpreted it is that holding him back will allow him to develop his social skills more and give him more confidence for when things get harder in second grade.

No decisions were made today. We need to think about everything and there is a lot to think about.

I have to admit that I'm feeling very resentful, for want of a better word, toward our old school. A big reason Monster is doing so well right now is because he has good peer models. One of his biggest motivations is seeing other kids doing things. Even though Mr did an awesome job of getting Monster out and about, he wasn't exposed to the same kids and the same routine on a consistent basis. He had no typical peer community to emulate and observe. I often wonder how much farther along he could be if he did have that when he was younger. That sort of thinking, however, doesn't get anyone anywhere and I really need to just let it go.

Looks like Mr and I have a lot of discussions and thinking to do.

First Grade Musical

2010-04-29T12:06:00.000-07:00

I haven't been blogging very much recently. Not that I don't have a lot to say, but I can't seem to find the words. A lot has been going on with our family, some good, some bad, some just life. Ok, mostly good and mostly just life, the bad is generally of our own making and related to our attitudes, which we are working on.

On the life/bad side, Monster's anxiety has really ratcheted up in recent weeks. If I were going to be melodramatic about it, I would say it is "completely out of hand" (which is what I originally wrote before editing). But it's not "out of hand" or out of control. It's just, well, more. He has a tough time not knowing where Mr or I are if we are at home. He seems to have to be able to see us on demand-so if he looks, he wants us to be where he thinks we should be. He has always not liked us taking showers around him, now our uttering the word "shower" can send him into a meltdown, or at least 5 minutes of him adamantly telling us no one is going to shower, which him only relenting when we agree, "no shower". One morning, when I was on my way to a water running class, Mr said something about me wearing my bathing suit (I had already put it on) and Monster had a fit. He was very scared or worried that I had my swimsuit on. I eventually got away from the house, but for the next few days he would constantly check to see if I had my swimsuit on.

Nights have gotten weird. With the time change, we have to face the problem with him not wanting to go to sleep with the sun still out. Then, a few weeks ago, Monster decided he needed both of us in bed with him. "Three", he tells us. Then, just in case we haven't learned "zachery speak", he will continue "Mommy and Daddy and Diego in the bed". On nights when we can't all be together, he will drive the attending parent a bit bonkers waiting for the other parent to get home. Once in bed, he is also very specific. He will say "Mommy here, Daddy there". Once asleep, we do put him back in his own bed. And every night, he climbs into the big bed at some point and becomes an octopus. If we haven't gone to bed yet, he'll come out looking for us.

In my more saner moments, I actually rejoice a bit in his behaviors. Instead of just having (what appears to be) random meltdowns and acting out that Mr and I have to try and figure out, he's telling us what he wants (though we still don't understand the why). When he has his crying tantrum over homework, I remind myself that he is telling us "no homework", "homework all-done". I do believe that his increased anxiety is related to him actually seeing the world around him and his trying to figure out his place in it.

Up until now, I've been able to ignore the social aspects of things. I've been so focused on him learning how to communicate, him having the right sensory experience, teaching him how to recognize when he needs certain things, etc. Now I'm finally starting to think about the future-those social parts I've been ignoring. How do I help him learn how to make friends? How am I going to answer him when asks about his differences? How am I going to deal with the fallout when he gets picked on? How am I going to know when he's feeling down or when he's having trouble? What happens when Mr and I aren't enough for him? We live in a fantastic community, but we don't have a local support system. We don't have people we can turn to for help, for comfort, for companionship. It takes time to develop those relationships under normal circumstances. When you have a special needs child, you seem to be even more isolated. When you are the newcomers, who live a very non-traditional lifestyle, well, things can be a bit more challenging. We've only been here 6 months, things take time.

:shudders:

Enough maudlin talk. We have a roof over our heads, food on the table. We live in a wonderful, beautiful town in an amazing state. I have a great job, which I enjoy and Monster is going to a school that is beyond whatever we could imagine for him in California-and it's a public school at that!

Monster was in his first school musical. It was the First Grade's tribute to music from around the world. Individual kids said a few words before each song and each of the classes were featured by standing in the front. Monster's class sang seventh with "Cockles and Muscles" (Which made me think of his grandmas). Monster got to play the xylaphone with some of the other children-up front and center. He missed some of his cues, played when he shouldn't have, but it sounded like heaven to me. He danced (and fell off the stands once-but got right back up), he sat when he was suppose to and stood when he was suppose to and clapped when he was suppose to (well sort of). It was magnificent.

It was a mid-morning performance and the house was packed. Many families were able to make it and you could see siblings, grandparent and parents all there. The program was 8 songs long (with one encore) and lasted about 35 minutes or so.

Monster stood with his classmates, on the end. We found out later that his aide was in the wings, next to him, but you couldn't tell during the performance. He was delightfully, wonderfully, happily average. Sometimes he paid attention, sometimes you could see him mentally wandering-as were other kids. He didn't always sit or stand immediately on cue, but neither did the other kids. He would dance, do the motions and not sing, as did other children.

When we were in the midst of the Great School District Battle, I never imagined that Monster would be standing on a stage with the other "normal" first graders, bouncing off-beat and having a great time. I felt so very "normal", except for the tears that wouldn't stop leaking from my eyes. We do have some video, though I'm not sure how good a quality it is. If it looks ok, I'll post some of it.

The challenges have gotten more difficult as he's "gotten better" (for want of a better phrase). I feel off-kilter, again, similarly to when we first started down this path. I think that's what is throwing me into a tailspin. After 5 years, I would expect to feel more in control, more capable, more competent. But I don't. I feel just as out of my element now as I did 5 years ago. Ok, that's a bit hyperbolic, isn't it? I'm older now, more mature, more educated on autism and I have a much thicker skin than I use to have. And I have my son, now. He's with me where he use to be in his own world.

Boy, do I need to keep remembering that. Things are going to be fine as long as my son is here, with me.

Weekend of Rapture

2010-03-07T17:21:00.000-08:00

We so rarely have a perfect day, let alone a perfect weekend. This weekend was as perfect as things get. Monster went skiing, skating and watched a movie in a theater. If that wasn't enough, he also slept through the night each night, was generally charming and kept Mr and I in stitches laughing all weekend.

Monster's aide, V, suggested we take him up to a ski resort to show him some skiing and try and get him to stomp around in ski boots. Mr and I had planned on getting him started skiing next winter, so we thought this was a good way to sort of introduce the subject. When we got up to Yawgoo Valley, Monster was so interested in trying things out. Mr. went to rent some boots and the like, when he spoke the manager and found out something wonderful. All of the ski instructors had just completed training for how to teach special needs persons. There was even one instructor who had had previous training. So we signed Monster up for a 30 minute lesson, fitted him for the equipment and crossed our fingers.

She (the instructor) was amazing. He was amazing!!! He went with her, without even looking back. Mr and I had to stay off the snow, down at the bottom. We stayed where Monster could see us, but he didn't check in with us very much. She put him in boots but he wanted to put on the skis. his instructor said she had to hustle to catch up with him when he put on his skis. He would take off his skis and wander around, and she would take her skis off and walk with him. She explained everything to him, what the different trucks were for, the tow line, the ski lift, everything. Their 30 minute session turned into an hour. During that time, they went up the tow line about 6 times (one shown in the video below, Mr was the camera man, so be warned, you may get a little motion sickness), ski around and even sat and watched the ski lift for a while. He really loved being with her and really listened to her. Unfortunately, it was probably the last weekend of the ski season (although we did sign him up for one more lesson next weekend if the snow holds out).

Monster after he put on his skis for the first time

going up the tow line with teacher:

But wait, we weren't done yet! After skiing for about an hour, Monster wanted to go ice skating! He has come so far in the few months we've been going each week. Since we bought him his own skates (and finally got him the right size), his skating has improved and he's skating more and more on his own.

This is my favorite video of him skating. it really shows how good he is getting. He gets going really fast next to the wall, just skimming his hand along. He also gets going pretty good away from the wall. We are now starting to work with him on stopping. He can get going pretty fast, then realizes he is going fast and can't stop. it is so funny to watch!

We got home after stopping for some food and Monster went straight to bath and bed.

Sunday was nearly as wonderful. We went ice skating again (ice skating is monster's latest obsession). Afterwards, we decided to go to the movies. We had great success with the Princess and the Frog on Christmas Day, but we've had little success with non-animated features. Regardless, we decided to go to see Alice in Wonderland. It was rated PG-13, and there may have been some things in there that a bit dark for a 7 year old, but he sat through the entire movie and except for the first 5 minutes and the last 5 minutes, he actually watched the movie.

All in all, a magical weekend.

Playing Sherlock Holmes

2010-02-07T17:13:00.001-08:00

Wow, it's been a while since I've blogged. Things have been very busy between home and work. On the work front, I got to spend a delightful, fun filled (not the sarcasm) week in the paradise of Iowa. It seemed like a nice place, but extremely cold and I spent most of that week outdoors in single digit weather.

"Playing Sherlock Holmes"

One of the things that any parent of a non-verbal child needs to learn is how to be a detective. Since your child can't speak, or doesn't know the right way to express him or herself, he or she can't say "Mom, my throat is scratchy" or "My tummy hurts". So you need to look for clues and deduce the problem.

Unfortunately for Monster, it seems I'm more like Dr. Watson than Mr. Holmes, but thems the breaks, kid.

The first thing that you notice is that he/she is acting out of the ordinary for them. For example, Monster had been going to sleep around 8 or 8:30 watching a movie. We then moved him to his own bed where he slept until about 4 or 5 in the morning when he crawled over to the big bed. He then slept until 6:30 or so the next morning. That has been the pattern for a few weeks, maybe since about mid January. Last week, however, he woke about midnight and didn't want to go back to sleep. He would then eventually fall asleep about 2 or 3 (or maybe later) in the morning.

Once you've established that something is off, you go searching for any and all clues. Monster has been having a problem focusing in class. He has been more resistant to activities he generally likes, he has had more meltdowns, he has been fixating on things more often and is more resistant to transitioning away from them, and he has been needing both Mom and Dad to be around in the morning this past weekend. Physically, he has been congested at night, he has had multiple cold sore outbreaks and his riding coach said he was leaning to one side on the horse (to her this suggested a potential ear infection or balance issue).

Ok, you now have a list of "symptoms" (sorry, I should mention I've been watching back episodes of House). Off to causes. What has been different? Have we switched up his routine? Did they start something new in school? Did he start eating a new food? Well, Mom was out of town for a week. That was a big thing so I'm sure that had some impact on the focus, sleep and meltdowns. We also have been reducing the amount of time he spends watching DVD sneak peaks and home videos of himself-both of these activities were very "relaxing" to him because he could "check out" when he did them. As we did that, we also increased the amount of time he spent playing-building things, playing board games, playing ball, reading, etc. This does require more focus, more interaction (which = more self control). We also eliminated a lot of the trips to the library (where he would check out his movies). Monster has been requesting Daddy for night time duty and I've forced my way in a few times to do the bedtime routine (even though he wanted Daddy). He had been swimming a lot, which reduced the amount of epsom salt baths he had per week (he showers at the pool rather than getting a bath at home). And he had a nasty, lingering cold over Christmas.

Now comes the hard part. How does the list of symptoms match with the list of changes? What change is causing what problem and how do we fix it? Mr and I are still trying to figure this part out at the moment. We've switched Monster to a sleeping bag with a heavy blanket to help keep him asleep longer (so far, mixed results, one night I put his pillow in the wrong spot, which caused him to wake up; another night I put the blanket up too high on his back). We've opened the door to his room a bit to reduce the temperature inside (another reason he was waking up). I do think getting a better night's sleep can reduce a lot of stuff. However, the focus problem can also be caused by the cold sores hurting. In addition, a lingering cold can turn into a sinus or ear infection. Unfortunately, Monster rarely presents with a fever, even when he has an infection. We rarely know about it until he hits the completely lethargic state. Of course, these days sinus and ear infections generally warrant a "wait and see" approach, rather than antibiotics (and I agree with this approach), so there wouldn't be much we could do anyway. Still, we may take him in just to eliminate this as a cause (or rule it in). Not something we really enjoy doing during flu season.

Of course, Mr. got a haircut, which can throw Monster off (because Mr. looks differently). Monster has been a lot more picky about my hair lately, so I know Mr's hair cut threw him off a bit. Plus we don't know if there were any small changes at school-a classmate being out or getting a haircut, a new unit in PE class, etc. Or he could just be gearing up for new breakthrough. He told his speech therapist he was "mad" spontaneously one day.

We'll figure it out eventually. Then we'll have a few days or even weeks of somewhat peace (or at least predictable routine) before the next great mystery arises.

Now, for the reward of schlepping through my ramblings. Monster ice skating :D

This is the first weekend we went:

This was this weekend

Monster flying solo:

Just Another Saturday

2010-01-10T16:40:00.000-08:00

Though we had a crazy week, the weekend was remarkably uneventful. Friday night we asked Monster if he wanted to go horseback riding on Saturday and he said yes, so we went to our normal time. He did ok, but got very upset rather quickly. First off, it was very cold and he wouldn't wear his hat or mittens, although he will normally wear them. More importantly, I don't think they do enough riding during his lessons. They do a lot of work with stretching and playing basketball, etc. (see previous blog on it). It seems to me that he really loves the actual riding part and he just doesn't get that much in this class. Mr. is going to try and find something else that let's Monster do more riding.

After riding, we decided to check out the Hartford Children's Museum. That was a lot of fun. It is the closest place I've seen to the Exploritorium in San Francisco that I've seen yet. He really enjoyed a lot of the activities there, including a really cool klaidiscope room (picture above). I know the video is dark, but Monster is making faces at himself in the mirror here:

Back to School Blues

2010-01-06T18:53:00.000-08:00

Monster went back to school this week, and man has it been tough. Everyday throughout the winter break, he would say "No School" each night. Eventually, one night we couldn't say "no", but instead said "School in the morning".

He had a very bad night that night. He woke up about 1:00 am and didn't go back to sleep until 6 am. He pushed every button that Mr. had. Since I had hurt my back recently, Mr tried to let me sleep, and I did (albeit not that well because of the pain). Eventually, I woke up to them fighting and brought Monster back into bed with me where I was able to get him to sleep. We tried to let him sleep as late as we could (rather we all tried to sleep as long as we could) and he was about an hour late for school, but we still made him go. We were concerned he would try to stay awake hoping to get out of school the next day.

Monday night rolls around, and after the movie, we go back into the bedroom. I asked him where he wanted to sleep (Mommy's bed or Z's bed) and he said his bed. However, he almost immediately asked for Mr to help him go to sleep. I think it took Monster about 15 minutes or so before he pushed Mr right over the edge. I intervened and Monster went to sleep relatively easily at that point. Unfortunately, Tuesday wasn't a great day at school-he bit and pinched his teacher. Nightime was also difficult (again). He wouldn't settle down during the movie and eventually I made him go to his room because he was winding himself up with the TV (I suspect all of this was to keep himself awake so he didn't have to go to school. Not that he connected the two, but he wasn't going to stop trying to get us to agree that he didn't have to go to school). Again, he wanted Daddy. (I told Mr. that Z broke him, and that Mr was the easier one to push over the edge than I was-which is a switch. When he doesn't want to go to sleep, Monster will try and anger me-or Mr in this case-so that he can feed off of our emotions). This time Mr. got him to sleep easier-although in the "big bed" and not Z's bed.

Apparently, Monster was better behaved (though more distracted) at school today. However, he wanted to go home at 2:00 (school is out at 2:20). I suspect this is going to get worse this week and Monday is going to be hellish getting him back to school. I would expect that he is NOT going to want to sleep on Sunday night again.

Anyway, since I like to end on a high note, here are some videos of Monster and Mommy sledding. As a bit of backstory, I hurt my back on Wednesday last week. It was slowly getting better until on Sunday, I felt fairly good and mobile. So mobile, I though for some weird reason it would be a good idea to go sledding with Z. Now, I was having no problems and didn't seem to have any pain during the entire time. Later, I realized I was fairly numb from the cold and when I defrosted, boy did my back hurt.

So here we are together, and Z alone, sledding.

Random Videos of Monster this Winter

2009-12-31T18:43:00.000-08:00

I thought it would be nice if I just posted a bunch of videos of Monster. I have blog entry summarizing the ups and downs of 2009 in my head, but it still needs some work.

Anyway, here he is flying his new helicopter. It took a while for him to have it stop when it started crashing into things, but he got it!

Here he is at his favorite bounce house place:

Playing in the snow at the bounce house on New Year's Eve:

Pushing a car up the ramp, preparing for take off.

And now he is going down the ramp. Check out the luge-like start!

Video Games

Opening Presents

Conversations, Part 2

2009-12-29T14:22:00.001-08:00

I know I should blog about Christmas, but I just don’t have it in me. Christmas is, personally, a very challenging and depressing time for me. It is that time of the year that I feel Zach’s challenges and differentness most acutely and grieve for the childhood we will never experience together.

Instead, I would love to share some of the recent conversations he and I have had. Our conversations are unique. He doesn’t volunteer opinions. In fact, he doesn’t really answer open ended questions very well yet, so I ask him yes/no questions and he answers. I have to try very hard to keep my voice neutral and not indicate to him how I wish he would answer, but all-in-all, it’s a blast. I’ve learned so much from our little Q &A sessions. Some of it is sad, some precious, some outright hilarious.

Last night, I was asking him if he liked mommy and daddy and diego (the dog). Apparently he does (whew!). He was also sad that it was bedtime, but not scared of the dark. He likes it when I sing Scar’s parts (from Lion King), but gets’ very upset if I sing Simba’s part. Oh well.

One night while watching Snow White, he said that Snow White was nice and pretty. Mommy was nice and pretty. Zachery was nice and pretty (or rather handsome) but Daddy was not nice and not pretty. Apparently, Mr. and Monster went a few rounds and Mr. wouldn’t let him something. One night he was scared of me (after we fought the night before) and very recently I was kicked out of the room (he wanted mommy to go away, not stay).

I try to talk to him every night-ask him what happened during the day (Did you do X or Y?) what he likes, what he fears. One night he was afraid of the dark and the next night he wanted the light off. What a contrary little man he can be!
I’ll try to add some video and pictures from Christmas. Monster got a remote controlled helicopter that Mr and I enjoy a lot. Zach loves to watch it fly around and thinks it is hilarious when we can’t control it!

Babysitting, Blizzards and Birthday Presents

2009-12-21T18:22:00.000-08:00

They called in the Winter Wallop on TV. It was the same night as my company's Christmas Party and the first time we have left Monster with someone since we moved. Through a group to which I belong, we found a great high school student to watch Monster. None of us realized that her shift was going to last as long as it did and that we would be waking up her parents at 1:00 am in order to pick her up.

She came by the night before for a walk through and to say hi to Monster. She was very impressive. She had a list of questions, some were things Mr and I hadn't yet thought of! We took Monster to his favorite bounce house the day of, and had him all ready for bed when she got here. When we got home, she said he watched a few movies and eventually fell asleep. Apparently, he woke up briefly, then when back to school. From the state of the house, he seemed to have moved from the futon (where he lays-or is it lies?-down watching his movies) to the bedroom and back again. He woke up when we got home (which was after midnight thanks to the storm-see picture above) and started crying. He grabbed my hand and said "mommy", when I answered I was there, he said "daddy" and wouldn't calm down until Mr. came in and held his hand. It was so sad and so sweet at the same time.

The snow was coming down really bad by that point and we couldn't get either the car or the truck out of our driveway, so S had to call her dad to have him pick her up. We were a bit embarrassed, but oh well. S did say she would be willing to babysit again, so it couldn't have been too horrible. Monster seemed to have come through the whole thing ok.

We woke the next morning to everything being covered in snow. The news said that Newport (the island to the east of us) got 20", so I imagine we got something near that. The car was buried and the wind was high. It was absolutely beautiful. Mr. got quite a workout shoveling us out. Monster really enjoyed playing in the snow.

Since his birthday party last weekend, we've been having him open his presents, one or so each night. This was a monster truck jump that he really liked.

The Party at Last

2009-12-13T14:51:00.000-08:00

Wow.

We survived.

Monster's party is finally over and, man, was it a blast! I have no idea how many kids eventually showed up; I have 5 gift bags (out of 20) left, so at least 15 kids were there (and I counted 15 presents). Because of the weather and time of the year, there were also a lot of siblings at the party as well, which both added to the chaos and the fun! I suspect that, all told, there were about 20.

The day started with a twist. One of Monster's classmate's dad was ill and her mom needed to be with him at the hospital. So I had her drop the girl off before the party so she could hang with us-which was a lot of fun and a lot of work (for me). The little girl, A, was a chatterbox-she talked nearly non-stop the entire time she was with us. She was beyond polite, with great manners, but she either asked questions or talked the entire time. When she got here, Mr had just gotten himself put together and was getting ready to take off with the food and decorations. By prior arrangement, Mr was going to go over first with the stuff and I was going to show up a bit later with Monster, so Monster didn't get too wound up (well, best laid plans and all that).

I was pretty impressed with how Monster handled the entire day. When A got here, Monster was playing with his DVDs (i.e. watching the sneak peaks and selected scenes from Disney movies. A wanted to do whatever he was doing, which was cool, but he has a really hard time sharing his DVDs, so I tried to interest A in coloring or drawing. She wasn't that interested in that but saw Monster's computer and wanted to watch some of his videos (videos of him doing things). That's another thing he wasn't good at sharing (and I eventually had to put the computer away). Then she wanted to actually watch one of his DVDs, another bad thing (for Monsters. So now, I'm getting very worried that Monster is going to pushed beyond his limits before we ever got to the party. Eventually, A played on Monster's bicycle (a Smart Cycle). Monster hovered a bit, watching her, but let her play without any problem. Monster would either jump on his trampoline or walk on the treadmill. By this point, Monster had already had more 1:1 interaction with a child than he normally gets over the entire weekend.

The weather was absolutely horrific. Cold, wet, gusty winds made walking anywhere difficult. When we got there and trudged through the puddles and up the stairs to the Beach Bounce, I found Mr surrounded by several wonderful ladies, who decorated and blew up balloons while Mr charmed everyone around him.

The parents who had showed up were very wonderful about pitching in and helping us get going. Which was fortunate, because after Mr took off (to get coffee for everyone), Monster really needed help for the first 30 minutes or so. Since we had been going to this place for the past few months, Monster could do fairly well for himself and didn't need us to hover too much. At his party, he was quite insecure for the first half hour or so. He would check in with me (look for me to make sure I was watching him) every minute or so, and would come over for hugs every 5 or 10 minutes. But he played and played and played-like all the kids did.

After about 45 minutes, he needed a break, so he asked me for his iPod and played with that for about 10 minutes. One of his friends (backstory: there were two little boys that Monster knows from the sensory room at school, N and C. We were told that Monster calls them "friends" so we sent invites to them and they both showed up), N, was watching Monster play on his iPod and when Monster was done, he let N play with it-and NO ONE touches Monster's iPod! The pattern of finding me, getting his iPod (or Dad's iPhone) repeated about 2 more times. Now, I bet parents of typical kids would think it was rude of their child to go off by him/herself during her/his birthday party, but for me, I couldn't have been prouder! It was one of the first times I had seen him recognize, in himself, that he needed a break and seeking out that break and then return to the activity. In the past, he has signaled being done with a task or area (no matter how preferred an activity it was), but when he was done he was done. Sunday, he would take a little break, have some water and then go back.

Eventually, it was time to sing Happy Birthday and blow out the candles. Forgive my horrific singing voice, but this is him blowing out his candle. Mr had worked with him all week blowing out a candle after we sang to him. He was so exhausted at this point that he mainly laid down either in the jump houses or on the floor (in everyone's way).

Toward the end of his party, he had asked to go go the library, so we (Monster, his classmate A and I) did. By the time we got home, all of us were exhausted and A's mom was done for the day and came to pick her up. I think they played well together, and although she was exhausting, it was nice to have A around.

All-in-all, the day went really well. Mr and I got to get to know some of the parents. Hopefully we can hook up with some folks for playdates. However, I noticed something I hadn't noticed before. Throughout the entire day, it seemed to me that there was a hint of sadness in Monster's eyes. To me, it seemed like he really felt his different-ness, which he doesn't seem to notice or think about most of the time. It was almost as if there was an invisible barrier between him and the other kids (except, surprisingly enough, between him and N, who was also special needs) that he wanted to cross but either didn't know how or thought he couldn't.

Maybe I'm projecting too much; I'm horribly shy and have problems in social situations as well, but I really don't think I am. One of the things I'm noticing is that it was easier on him, and us, when he lived in his own world. In there, things were safe and comforting. Out here, it is weird and scary and stressful. I understand that fear quite well; I just don't know how to help him handle it. I can't tell him that kids all think he's wonderful, because that's just not how things work. At this age, sure, kids are fairly accepting. But as he gets older, or around people who just don't know him, I can't guarantee he won't be made fun of, or pushed around-he's already experienced a kid trying to keep him from playing in a public place (other kids were trying to dominate one piece of equipment)-not all kids are nice or polite or follow the same social rules and he needs to know that I'm going to be honest and real with him (which is probably a whole 'nother blog entry).

Intellectually, I know that time, patience and self-confidence are what he needs to get through this and given how far he has already come, and the wonderful support he is getting, I'm confident that he will get there. He really is a wonderful, brave, charming little boy (well, big boy now).

We had a t-shirt available for the kids to decorate for him and I thought I would end this post with a picture of his decorated t-shirt:

Monster's First Report Card

2009-12-12T05:46:00.000-08:00

1=begining to develop standard
2=working and progressing towards the standard
3=Meeting the grade level standard
4=exceeding grade level standard

At our Parent Teacher Conference last week, the teachers told us it is typical for kids to have 1's and 2's at the beginning of the year.

Ok, here goes:

Learning Attitudes and behaviors
Respects others 2
Follows classroom and school rules 2
Works Independent 2
Works cooperatively with peers 2
Listens Effectively 1 (Joanie-sound familiar?)
Is responsible for homework 3 (yea, mom and dad!)
Manages transitions 2 (Thank you, Ms. V)
Is organized and prepared to learn 2
Shows persistence effort 1
Takes responsibility for own actions 2
Communications skills 2 (yea!!!!!!)

Guided Reading
1. Applies Appropriate reading strategies:
Visual cues 1
Phonics 2
Contextual clues 1
Self-corrects 1 (though I've noticed he just started doing this a little bit)

2. Reads with understanding
-Responds to literature 2
-Re-tells a story 1 (actually, he does do this, just in his own time frame and way. He'll tell us stories later, but we don't always understand them.)
Participates in group discussion 1

3. Fluency
-Demonstrates fluency and expression in oral reading 1

Self Selected Reading
Chooses appropriate literature 3
Attends to text during independent reading times 3
Reads with understanding 2

Working with Words
Uses known word parts and patterns to spell new words 1
Applies word building skills and spelling strategies independently 1

Writing
Generates ideas independently 2 (yea!!!!)
Communicates thoughts and information effectively 2 (yea!!!!!!!!!)
Uses grade appropriate capitalization and punctuation 1
Writes legibly 1

Mathematical Numbers & Operations
Counts fluently 2
Skip-counts fluently 1 (we just started doing this with him, he seems to sort of get it)
Reads and writes 2-digit numbers
Identifies and calculates value of coins 2
Addition 3
Subtraction 3

Mathematical Concepts
Shows evidence of mathematical reasoning 2
Identifies and uses number patterns 1
Understands geometric concepts 2

Science
Process Skills 3
Understands concepts 3
Applies concepts in written work 3

(it does this Engineer's heart proud over the Science score!!)

Social Studies
Understands/applies concepts 3
Understands/applies concepts in writing 3

There are a few more things, but that is the bulk of his report card. Now this is our first report card, and we are pretty happy about it!

Monster has not been wanting to go to school. When I ask him if school is Happy or sad, he often says sad, but I think that just means he isn't getting his way as much. He, by no means, seems to hate going nor does he seem to have any problems once we get him dressed and out of the door.

I wonder how much is related to him being different, or not fitting in. I know he knows he's different, just as I know he wants to be around other kids. I suspect he is scared a lot-unsure how to get to where he wants to be (playing with the other kids). It takes time, and he has never been very patient.

5 RSVPs and Counting-Monster's B-Day Party Saga, Part 1

2009-12-08T08:57:00.000-08:00

I'm a total nervous Nellie, so just ignore me, but I need to rant/vent, etc. Feel free to skip this entire post. But if you do read it, feel free to let me know what I'm missing.

We have had a total of 5 kids RSVP yes, and 2 for no.

Mr. and I had decided to prepare for all of the kids/parents, which, when we sat down and counted, was 23 kids (if 1 parent per child shows up, that's 46 people plus us-I think we are insane). So the 2 noes were welcome (though they will be missed).

We took Monster back to the bounce place last weekend, and he played there for about 90 minutes, which is good and means he will have endurance for his own party (it was fairly busy, so it was a good mimic for his bday). There was even 1 or 2 bullies trying to get him to NOT play some places that he (and well, I) dealt with. Mr. was funny, after I grumbled in his ear. He said "Do you really think he cares what those other kids say?". Unfortunately (or fortunately?), Monster did care, and would follow a direct instruction (for about 30 seconds). Finally, I, another child and the kid's mother all told him that ds was allowed to play there and that he needed to share (to be clear, I and another child both told him that Monster wasn't in his way-he wasn't-and to just play around him, his mom told him he needed to share).

I still need to put his giftbags together, I'm stressing that they aren't "cool" enough. I tried to stick to things Monster likes to play with-a moldable eraser, a gummy pencil grip (on a pencil), one of the sticks that makes noises when you turn them upside down, super bouncy ball, a pack of Monster's favorite gum, some stickers and a balloon. I'm sure (logically) that they are fine, but there is that social anxiety rearing its ugly head.

The menu is set-pizza (with me making a special one for ds and one other girl who is also gf/cf), carrot sticks, raisins, chips and juice/water, coffee and soda for the parents. Mr didn't want to serve any soda, but I told him I *would* be drinking some (I don't drink coffee, he does) so it would be rude to not offer any to the parents. Monster's "cake" is GF/CF brownies and chocolate chip cookies.

We decided to go with the No. 7 candle (instead of 7 candles) and Mr is going to work with Monster this week to teach him to blow it out. We are planning on having all the kids "help" him blow it out.

Presents have been a tough one for us. On the one hand, we don't expect anyone to give him anything-times are tight and we are of the "your presence is the present" mindset. On the other hand, Mr thinks this is a great opportunity for us to see what other kids are playing with (Monster just does DVD sneak peaks, internet and his bike games) to see if they are interesting to him. When asked, I originally said "books or cars", since he does enjoy cars occasionally, but Mr suggested we ask the parents (who ask our opinion) to bring something their child likes to play with-a favorite book or whatnot. Partially so we can have something they enjoy for future (hopefully) playdates.

Also, since Monster isn't the best at opening presents, we decided to have the child help him open his/her present to him.

Finally, we bought a t-shirt from the bounce place and I'm going to ask the kids to decorate it with sharpie markers for Monster (then he can wear it to school, or use it for show-tell).

I was also going to use the time to see if parents want to exchange contact info with each other ( a sign-up type of sheet that I would pass to the other parents with the thank you cards). I've been toying with the idea of a yahoo group, but think that may be too much.

Well, if you made it this far, you get a cookie-a gluten/casein/dye/nut-free cookie!

And, yes, I do realize I'm worrying way too much. It's genetic.

Our First Parent-Teacher Conference

2009-12-04T16:15:00.000-08:00

I have videos that I'll upload later, showing Monster reading and cutting and the like, but I wanted to put down an account of Mr. and I's first parent teacher conference while it is still relatively fresh in my memory.

Our previous school was somewhat special, it only included (for the most part) children with special needs. Thus, we didn't really have things like open house and parent teacher conferences. Then, we would consider our annual IEP as the parent-teacher conference with multiple off-the-cuff meetings whenever parents and service providers/teachers managed to find time.

So today was a new experience for us, and with all of our new experiences, it was both wonderful and emotional. Of course, I had a difficult time not crying (and in fact did shed some tears but Mr. says it wasn't noticeable). I found out something I never knew about Monster, and given the degree to which Mr and I know him (which is quite extensive as we have had to infer emotions/moods likes/dislikes given his previously limited verbal skills), it was a unique and blessed surprise to find out that he likes to write. Not just copy letter or words (which he really doesn't seem to enjoy, or rather rushes through most of the time we work with him) but to put down thoughts and feelings.

When we first found out he was keeping a journal at school, as a class assignment, I naturally assumed he was just copying something that someone else wrote or told him to write (To the wonderful women of his school, my deepest apologies for such an ignorant assumption). Not so. Not so at all. He writes (in his very poor handwriting, rushing too much, I'm sure) about what he sees in pictures, what he draws (he does quite a wonderful self portrait ;)), what he likes. His teacher told us that he will often keep writing beyond the simple statements they expect and they are even incorporating his writing down of requests. It may seem odd to the parent of a typical child to find out that their kid likes chocolate chip cookies-their kids have probably told them many times, both directly and indirectly, of their affection for them. I knew that Monster was partial to cookies since he will ask for them, but for the first time I saw, in his own hand, that he likes chocolate chip cookies (even the gluten/casein free ones we give him). He, apparently, also enjoys playing heads up, seven up, which was a personal favorite of mine growing up, and has raised his hand in class.

And we all marveld at how wonderful Monster's aide is and it just reinforces what we've known all along, Monster can do this if he has the right support.

And he's smart. I'm sure the teachers had no idea how much it meant to Mr and I to hear an educational professional say he was smart. Once upon a time in an alternate universe, Monster's IQ was measured at 58. There was no discussion about the relevance or how kids with autism had issues with IQ tests, yet it was implied that he had cognitive delays. It really wouldn't have mattered to us if he did have cognitive delays, but given the inaccuracies of the testing, we had no idea if he did indeed have more challenges to face. It may not be a wise or good thing to do, but I do have expectations about Monster's future and the not-knowing was worrisome, at least to me (I think Mr. has always had faith). Being told he was smart, along with his enjoyment of wanting to be around other kids does a lot to put my mind at ease.

All-in-all, a very wonderful (if also emotional) experience and one I would gladly repeat!

Today's videos include Monster reading with his dad-it is a PEC book where he matches the icon (an illustrated word to finish a sentence-a cool way to learn vocabulary, especially for a visual learner like Monster).One is him cutting out a shape (actually I decided to go with him doing math) and one is him at horseback riding. I'll post them in a bit.

Halloween

2009-11-12T11:27:00.000-08:00

Finally, I get around to blogging about Monster’s Halloween. Better late than never, right?

We had bought him a Pirate costume, since he had taken to saying “Ahoy Matey” and playing on boats (around these parts, boats play a big part in play structures). We tried to get him to wear it to the birthday party he attended a while back (with no success) and we again had no success on Halloween. I got him into the pants (over his sweats) and they lasted just under 2 minutes (which is about a minute longer than the first time he put them on). So we went with our backup plan-Spiderman PJ’s with Monster being Spiderman.

In the past, Monster would last about 2 houses around Grandmas’ neighborhood, so we didn’t really expect to go trick or treating. Our town, however, had a great even planned at the firehouse. They built this big “foam pit” filled with white soap-like foam. This thing was huge! At the deepest parts, it would have been about 3-4 feet deep. I half expected kids to get lost in the stuff.

At first, Monster was very tentative about going in the stuff. He has always been sensory defensive to tactile sensations such as foam and shaving cream. He dislikes having his hair wet and rarely wears hats (except when it's raining, I guess a hat is preferable to wet hair).

He was so cute. The first thing he did after getting really into the stuff was to take off his socks and shoes (thank Mother it was a warm night). He then would hold up his pants legs (like picking up a skirt). At one point he had the pants up high enough to look like he was wearing underwear briefs! Eventually, Mr was able to convince him to drop the pants. And man, once he took the plunge, did he ever take the plunge. Mr had told him it was the last time and then we were leaving (We had been there about an hour). Up until now, he would go in, hang out a bit, come out of the foam, run around, then back into the foam. He knew that when he left the foam this time, we were going to go home.

All in all, it was a great Halloween. We got to see some classmates and one of his teachers there. It is very nice living in a small community.

Answering Questions

2009-10-23T20:22:00.000-07:00

"did you go to school today?"

"no"

"did you go to the doctor today?"

"yes"

"Are you happy or sad?"

"Happy"

"Where do you go with Mommy?"

"The zoo and playground"

Not quite spontaneous, but, Ladies and Gentlemen, that's a conversation.

:)

Monster's first big boy b-day party

2009-10-18T18:20:00.000-07:00

Monster has been to a few birthday parties in the past. Some of them at typical birthday party places, or at people's houses. This time, however, the party was more like the parties I remember as a child-games, prizes, etc; and Monster didn't ask to leave early.

A co-worker's son turned 5 and he kindly asked if Monster would like to come. We agreed. It's always nice to get out and find new places, meet other parents. The party was at one of these playhouse-type place. It had a Pirate ship slide area, a huge (open) inflatable jump houses (in the picture to the right), toys, etc. Previously, these places were "play in structure 45 minutes, move out for the next party". This place, was different. The party was a mixture of open play, organized games, eating, etc. We first got there and it was open play. Monster did laps in the jumpy place, ran to the slides (though he wouldn't actually slide for the first hour or so), climbed up and down. It was pretty much chaos, with about 10 5-7 year olds running around. Then they called to all the kids to sit down, for the first activity. I sat with Monster, giving him some hand squeezes, some body hugs (pulling his knees up to his chest), pushing down on his head, other sensory mamas understand what I mean.

The first activity was to go on a treasure hunt-not a follow the clues type of thing, but a literal treasure hunt. Plastic gold coins were strewn throughout the play areas-in the jump place, on the slides (I think), the floor, etc. After the wonderful young woman (she was awesome with the kids), finished explaining the game, the kids took off. Monster went back to the jump house for more laps, while the other kids were scrambling for the coins. After they left, taking the coins they could see with them, Monster started poking around the seams, finding 2 coins. I don't know if he chose to look for the coins, or if he was looking for pressure on his hands, and found something that felt weird. Regardless, he brought them to me and walked with me to the pot, like we were suppose to. He put the coins in and went back to jumping in the house. The two women leading the game, kept dumping out the coins in the bucket, so the kids would continually be looking for more coins, very ingenious! After all the coins were finally picked up, we sat together (like circle time) and counted them. Monster didn't really count with the group, but he and I counted up to 20 while we waiting. After the counting, each kid got 1 piece of candy (Monster declined his piece, which is good since he's not allowed to eat most candy due to artificial dyes).

This activity was followed by pizza-the jump place was closed for 5 minutes, guaranteeing the kids will have to sit down and eat something. We put 5 minutes on my visual timer (it's an iPhone app, it costs $0.99 and it works just like a Time Timer with the added benefit of having the colors pulse, an alarm, etc.) and tried to get Monster to eat something (or drink some water). When that was done he got to go back to the jumpy-thing. Then it was time to play musical chairs (or rather, musical foam puzzle pieces). We again gathered in the same place (those play mats that are cushioned) and I again had Monster on my lap, providing deep pressure in his joints. He said he wanted to play the game, I led him around in the circle, actually, it was more like him leading me. He stopped and found a foam when the music stopped, and made it through 3 or 4 rounds before he decided he was done and I pulled him off. After he was done with the game, he went back to the jumpy-thing and watched the other kids finish. This time, he said he wanted the candy, so we got in line and he chose a piece when it was his turn. I promptly traded him 2 pieces of his favorite gum for his Swedish fish.

For the remainder of the day, he would follow the other kids jumping/sliding for a while, then take himself somewhere quiet-one or the other of the slides, at the top, or lying (or is that laying?) down in the jump house. The kids would swarm from one to the other, so he couldn't really be alone for very long. When he was at the top of this one slide, where it was dark and a bit quieter, Mr sat with him and talked with the other kids. Monster really enjoyed watching the kids and almost came down the slide (an enclosed twisty one, and he never goes down things where he can't see the end alone) a few times.

Then it was time when they party folks brought in balloon swords. Monster said he wanted one (he's gotten them before), so I got one for him (a little girl came and either returned it to me at one point, or gave me another one-saying it was for Zach, I can't remember which, but it made me think "Why does he always end up with a girl taking care of him?" since Monster has always found some female peer (or older, but still a child) that adores and dotes on him-since his first day of daycare where the older girls would treat him like a living doll. I played swords with some of the kids, Monster and I played swords, it was a blast to be had by all! He eventually even slid down the slide by himself (without dad pushing and mom pulling).

All of the kids were great. They weren't too pushy when waiting and there didn't seem to be a single fight between anyone-they were all sharing and taking turns but in a very high energy, chaotic way! The parents were nice. Mr and I both got a chance to chat with people. Mr told me that one of the parents said he just thought Monster was shy (and we were a bit overprotective-j/k). Honestly, looking back, there was very little outward difference between Monster and the other kids. Sure, *I* knew he wasn't really chasing the other kids (and often would leave after a few minutes) and I had to hold his hand during musical puzzle pieces. But, in his own way, he was choosing to interact in socially appropriate ways (aka playing). We even made it through the entire party; by the time he said "all done, go home", other kids were getting ready to leave.

Not only was the party a great part of the day, the day actually started out really cool with Mr. doing homework with Monster. Mr would put a time on the visual timer for when Monster would start his school work, he would only have to work for a pre-set time limit (5 minutes), after which he was allowed to play (computer/DVD player). Repeat for (1)math, (2) writing/cutting, (3) sight word matching. He didn't give us any grief or tantrums before doing them (which can happen during the week). After the party, and then dinner, he played in the tub a long time, reading to me, and didn't give Mr. a hard time before falling asleep (Mr. kindly/demonically relieved me of my nighttime duties so I could endure the Bears game). All-in-all a magical fall day (despite the frigid temperatures and pouring rain).

Here is Monster working his way to actually sliding down the slide. This sucker was fairly steep and slick. Kids were flying down it before crashing into a cushioned mat.

So that's what an IEP is suppose to be

2009-10-13T19:48:00.000-07:00

We had our first IEP at the new school this morning.

It was as different from what we were use to as can be, except for one thing-we still didn't get any information before hand (this is universal, isn't it?). The meeting was only about an hour long, they had another IEP scheduled, however it was a very productive hour.

The teachers spoke about where Monster was, how he was doing. They did say that, for the most part, the goals the old school wrote were pretty on target for him, but that he blew threw them. They really hadn't written any goals yet, but we did go through what they thought he should be working on and we agreed to those in principle, now they will write the goals for us to review before agreeing. We spoke about generalizing everything to the home so we are all on the same page. The social stories, the picture strips, how they handle things. I'm continually blown away by the resources they have and the way they use them to integrate Monster into the school. For example, his special ed teacher is making a story board for PE so he can follow the games with this peers. His aide works with him to walk up and down stairs so he doesn't fling himself down them (they go through his social story, practice, prompt, etc). All the teachers have PECs attached to their belts so they can use them when needed. All the doors for activities have PECS on the outside.

But the single, most important (to me) tool, is his aide. She is an angel. We got word today that she is no longer temporary but will be hired as his aide. She can read him and help prevent problems before they happen because she is with him all the time. He is able to go to Music, art, PE and recess with his typical peers because he has someone who can help remind him how to act, read his moods and get him to where he needs to be. If ever I had a doubt (and, honestly, I never did) of what a properly trained paraprofessional can do, seeing what Ms. V can do for Monster has erased it.

Some people say that having an aide is restricting to a student, and I agree with that if the aide is not trained properly, or if the student does not trust them. But having an aide has opened so many doors for Monster. She is going to help him line up and walk in with his peers, she is going to help him eat lunch in the cafeteria with the other kids, she helps him play with other kids on the playground. How can this be more restrictive? She doesn't do things for him; she doesn't teach him directly, or act for him with other people. She is a talented, beautiful tool who helps Monster learn how he is suppose to act and gives him the confidence to try.

The ultimate goal is for Monster to NOT need her forever. To provide him with the tools and confidence to do things for himself. But sometimes, having training wheels really can help someone learn to ride a bike. Eventually, those training wheels come off.

I love my new school. But I absolutely must send out a great big internet kudos to those at my old school. Monster wouldn't be doing so well now if he hadn't had the foundation laid then/there. They may not know how to take the next step to embracing inclusion (and with the way schools are treated in CA, financially speaking, I'm sure it is a tough step), but they have talented staff who can do a lot with the little they are given (resource wise). For Monster, they wrote some good goals!

Monster is still autistic. He still has challenges, but he has a great group of people at school who are going to help us help him be the most he can be.

Now on to a few notables (both bad and good).

Good: Monster is learning to swing himself (pump his legs/arms). He is so cute pushing off of the ground, swinging his legs and then, his newest trick (learned, I'm sure at school watching other kids) jumping off the swing.

Good: Monster is reading more at home. He uses his finger and reads the books teacher sends home. I'll try and grab some video (which may be a bit wonky, since he reads during bath time :p) of him. He is cute (needs work with his articulation).

Good: He was playing outside by himself earlier. Mr. was cooking and keeping an eye on him, but he was playing on his swing, etc. So very reminiscent of what a typical child would do. It's the little things, isn't it, that are so special.

Good: He will use up/down, left/right to show us which video he wants from his collection.

Bad: He has bitten two kids at school-both on days that rained. The school has been very good about responding to both incidents. Apparently, there was some frustration with the rain preventing him from doing what he would normally do. The school is working on social stories to help him understand what will happen when it rains (indoor play days). On a positive note, it seems like the little girl he bit the first time came up and hugged him, so no hard feelings.

Bad: his fingers are extremely red and swollen. he has been biting them often. This wasn't unexpected, given the amount of work he has to do all the time now. Poor kids rarely ever gets a break. He has to work at everything (meaning, speak, follow rules, etc) and I bet it's exhausting to keep in control of himself all the time.

Good: his eye contact is amazing. All of his teachers/therapists commented on how he looks you in the eye. He is on the verge of something, I can feel it.

Good: Mr. is having him do chores (ok, this may be bad for him :)). He helps put clothes into the dryer, rakes leaves, feeds the dog, helps put away things.

Good: He is getting so much better at brushing his own teeth. he actually can do the front surface of his front teeth, and will hold his mouth open (with a gazillion prompts) so we can get the back ones done.

Well, this is getting long winded, as usual, but I hadn't blogged in a while and wanted to get some of this down so I don't forget the good stuff next time I want to pull out my own hair.

It's not related, but I'll end with a picture of autumn, the most beautiful time of year in New England.

Open House

2009-09-23T20:00:00.000-07:00

So tonight was open house at Monster's new school. We had never had one before. His last school never did anything like that.

We didn't have any child care, so Monster went with us (School said they preferred the kids stay home, but they preferred we were there with him than not there). he had a very busy afternoon: first trip to a new pediatrician, horseback riding and only about 10 minutes downtime before open house.

In preparation for open house, we put together a poster about Monster-pictures of the family, what he liked eating, favorite color, etc. He did about 50% of it himself, which was pretty good for him. I was concerned it would be too plain compared to the other kids, but when we saw them all together, it worked well; it fit right in with the others (one wouldn't be able to tell it was from a disabled kid--I should take a picture of it when we get it back).

Monster didn't last more than 2 minutes at the begininng of the open house, when everyone was in the gym. It was fairly loud, and hot, so I don't blame him for wanting to leave. Actually, he did really great all around, even though he didn't even want to be there. I think he was worried he would be asked to work ;)

After the initial talk, we all broke out to go to our kids' class. I found Mr and Monster and we decided to start in the library. Mr hadn't met the librarian (who happens to be my boss's wife) yet. After that, we went looking for Monster's class and stopped by his speech therapists (to ask for directions ;)). she is a wonderful lady, who is also new to the school. We chatted for a few minutes. She told us that Monster had really moved beyond PECS (picture exchange communication systems). I still remember at the beginning of this journey, the pitying look on the speech therapists face as she explained that PECS may be the only way Monster would be able to communicate with people. Don't get me wrong, PECS is an amazing and awesome way for non-verbal people to communicate with the world. I'm just amazed that someone would nearly "condemn" a child of 3 to a lifetime of using it without even trying to help him find his own voice. I doubt Monster will ever be a chatty kid, or adult, but he can speak if he needs to. It's so very sad that some people give up on these kids. I think it is a combination of low expectations (maybe they saw Rainman too many times) or just being overwhelmed. These kids aren't easy.

Back to Open House...

Monster's new SLP is awesome and seems willing to work with us to find ways to get Monster to work for her. She has a very good approach and is keen to read his cues and keep things fun enough that he'll keep working. Which is the key to working with our kids. I don't have experience with typical kids, so this may seem quite obvious to any parent. Kids on the spectrum can escape into their own heads. In fact, I would say they often prefer their own heads to our world since it is under their control and not overwhelming to them, that's why so many of us wonder if our kids have hearing problems at first. With Monster, especially when he was younger, once he "checked out", that was it--he was gone. He knew we were there, that the world was around him, but he didn't want anything to do with us. Over the last few years, he has being in this world with us, but he will still check out if he's too anything (too overwhelmed, too tired, too pissed off, too much food he shouldn't have). If you want him to work, it is a delicate balancing act of keeping him engaged and pushing him to do more. She seems to really get that.

Heck, the whole school seems to really get that.

After the Speech therapist, we went down to one of his two classrooms. Monster splits his day between 1:1 teacher time (in a "quiet" room, where he does his academics) and his homeroom class room, where he does group activities (calender time, PE, art, music). First we stopped off in his quiet room. Oh my! I saw his schedule and there must be something like 20 icons on there (Monster has what is known as a visual schedule, where his day is laid out in a series of pictures that he can pull off when he has completed his task. it tells him what is coming up and what he needs to do). He is kept moving all day, not a lot of times where he has "free play" or "free time" which is good since that's when he generally gets into trouble (bored, fixates on things). Now I know why he is so tired at the end of the day!

His special ed teacher has a lot of fantastic ideas. She seems to understand him fairly well-that he learns better when he can keep moving, she uses white boards a lot with him, doesn't make him sit down too much. She told us today that they are going to start increasing his time in the homeroom class starting Monday-they think he can start doing some of his table work in the class room with his peers. In her classroom, they have a trampoline, basketball hoop, a pit for jumping/crashing. It's really good for him.

Finally, we made it to his classroom. Unfortunately, Monster was beyond at the end of his rope. He had started asking to go home when we got to the library! We did get to chat with his teachers a little bit. During calender time, the teachers will try to ask him questions directly, and he will generally answer them correctly. According to one of his teachers, the other kids are actually amazed at how smart he is. I got the impression, they (the other kids in his class) thought he was one of the smartest in the class. We did meet a parent of one of the kids in his class. When she found out he was the Zachery, she told us that her son talks about him a lot. Apparently, her son likes to "talk with Zach". WOW.

As keeps happening to Mr and I, we spent most of the night fighting back tears (happy ones) as we spoke to everyone.

Losing my job wasn't fun, but this place is good for us.

Two steps forward, one step back (the redux)

2009-09-21T20:12:00.000-07:00

It always happens, doesn't it? We leap forward a few steps then slide back down a bit.

Monster is still doing ok, but he's finally realized that school is WORK. Last week, he asked to stay home, and as always, we let him. I was fighting a bad cold, so Mr thought Monster wasn't feeling well. Mr asked Monster "are you ok?" he replied "Zach not ok", which Mr took to mean he wasn't feeling well. Of course, then Monster spent the rest of the day having fun, with no evidence of feeling poorly at all.

Both Thursday and Friday, Monster put up a fuss about getting out of the car and going to school. Today, he also put up a bit of a fuss. All three days, though, the fuss was getting less and he did go to school. After speaking to the principal, it sounds like they are really pushing him to spend more and more time in the classroom and less time either at sensory breaks or in private teacher time. This is tough work for him, I know that and finally he knows that. I finally get a taste of what moms of typical kids have to deal with ;)

Since I like to over analyze and think things to death, this challenge makes me look back on our journey with a wry smile. Mr and I get so hyper-focused on one thing, we seem to forget that that one thing isn't going to fix all the problems. Call it our own version of denial. For the longest time, it was getting Monster to interact with us. Then it was getting him to speak. Then it was getting him into an integrated program.

We've come a long way, but we still have such a long way to go. It sounds like I'm being pessimistic, but I'm not. I'm just so goal oriented, I often forget that reaching the goal is the beginning, not the end.

Teacher's Note

2009-09-11T18:46:00.000-07:00

Since I wasn't there, and I didn't actually see or hear anything, I just thought I would just copy what was written in Monster's communication book from today at school:

Watched PE in gym-said "soccer" and wanted to play! Z had a great teacher time. He attended calender in class, for a full 15 minutes. The teacher asked him to complete the pattern and he told her and the class the answer...Z sat at his desk and wrote his name (hand over hand) and drew a triangle and a circle. At recess, Z's friend, K, asked him to play. [and according to his aide, he did go and play with her].

:D

He seems to like school so far.

School-Week 2

2009-09-09T21:55:00.000-07:00

No pictures, sorry!

Day 2 (and beyond) was actually better than day 1, though it had a rocky start. We did find out that he spent a lot of Day 1 on teacher's (sped teacher in his classroom) lap, bestowing upon her many hugs and kisses. Before you say "ahhh....", know he fully realizes how cute he is and does this to get his way. We generally warn his teachers about it. Not at all an emotionless robot!

We got to school and took Monster down to his class. However, he really wanted to play on the playground. Parents were no longer allowed on the playground (that was just the first day) and anyway, the whistle blew and it was time for class. He was really working himself into a nice tantrum, when we got to the classroom. Standing outside was the principal, et. al., and she suggested we have our meeting outside so Monster could play while we spoke.

At our IEPs back in Fog City, it was very difficult to find a date/time that would allow everyone to attend. Budget cuts increased work loads and the number of meetings required for each professional. So color me surprised when our little informal meeting was attended by Monster's sped teacher, the sped teacher for second grade, the OT, the SLP, the principal, the Sped director, the social worker and a, drumroll please, a 1:1 aide that the principal called that morning for Monster. All arranged in less than 24 hrs.

The Sped director was very sweet, asking if we minded if Zach had a personal aide (without a lawsuit, even). They hadn't put together a system for him, but we went through what we thought would work, such as allowing him to go to a quiet room for individualized instruction, including him in group activities and more structured times, OT interventions, how he does things, setting up a PECS system and the like.

He made it through the entire day that second day, as well as all the days since. They put together a nice little schedule for him, including sensory breaks (did I mention they have a squeeze machine? basically rollers that provide deep input while he crawls through it), 1:1 time with the sped teacher, etc. They are still figuring out what he can do, and I think they aren't setting the bar too high right now, that will come, I'm sure. He does spend a majority of his day in individual instruction, but it's early yet; I would imagine it will take a while for him to get comfortable.

However, by all of our key parameters, he loves being in school. He has always enjoyed school, and now is no different. His sleep is ok; he has a difficulty winding down sometimes (Epsom salts are really helping, nights he doesn't have them in his bath-because we ran out and there aren't any nearby stores-he's more wired), but he is being chatty (mostly) during those times. We don't understand him, but a lot of the time, there are words. Mr. thinks Monster is going over things he saw and is processing things, and he's likely right. He willingly gets ready for school, and easily goes out to the car for class. He will say he's happy (when asked if he is happy or sad). The only downside so far, is increased hand biting.

Monster's language is doing great. He continues to be fairly adamant in trying to control all of us, but I don't mind too much. His latest is saying "I love you" when he wants to play on the computer and I want him to answer questions. OK, it sounds like "I yuy oo", but I know what he means-"I'm cute, so let me have my way".

I know we have a lot of work ahead of us. As we challenge him, things will get rockier. But for the first time since we started down this road, I finally feel like he has a chance to really reach however high he will. In some ways, it's scary. It's time to walk the walk that my mouth has been talking over the last few years.

Time to see if I was right.

First Day of School

2009-09-02T16:11:00.000-07:00

Boy, am I glad the first day is over. I can finally stop obsessing about it.

Today was Monster's first day of first grade. It was also his first day at his new school, his first full day of school, his first day in a mainstream classroom and his first day having to eat lunch in a cafeteria (well, sort of).

Overall, I give the experience two thumbs up. I'm fairly exhausted (I didn't sleep much last night) so I may not make a lot of sense and ramble ;)

Before today, Mr had been taking Monster to the school in the morning and walking him down to his classroom. They hit the jackpot yesterday and managed to hook up with Monster's teachers. Mr and the teachers got to chat for a bit in Monster's new classroom while Monster got to chill out playing on his iPod (Note: if you have a child with autism, I highly urge you to get an iPod touch or iPhone for him/her, it is a very versatile, useful). Mr. said that Monster gave one of his teachers a hug before they left.

Mr and I got up at 6:00 to make sure we got everything ready. We didn't need to be at school until 8 and we were actually rushing a bit at the end. Don't ask me why, but we were so stressed and bit insane that we couldn't hit a grove. Monster woke up about 6:30 and started getting whiny because Sesame street wasn't on yet (Note to self, set up DVR for Sesame Street). He wanted to start on the DVDs, but we didn't want that since it makes it more difficult to get him out the door when he starts (he will focus and obsess with watching the transition to sneak peeks on his Disney DVDs, he doesn't actually watch the movies once he starts, he doesn't like to be told to stop and this can initiate a major meltdown, especially if he was tired). We managed to get all of his various meds (supplements, etc) down him along with some corn puffs (his breakfast) and apple juice. One or two minor whines, but all-in-all it went fairly well. When I had him put on his backpack and go out of the house, he did so with a giggle and a smile.

Even though we were rushing, we got to school fairly early so he could play in the play yard. The school folks told us that, in general, the kids play for a bit after the buses get there before they line up for class. He was excited about being there (he had played there several times already), but everything had a coating of dew on it (Monster hates wet clothes, shoes, etc) so he didn't get to swing or anything. He seemed to be having fun, though.

During this time, I was able to meet with Monster's teachers. For background, Monster's new school has a different approach to special ed. Instead of a special day class, they use a co-teaching model. The class has one general and one special education teacher along with at least one aide. The special needs child is in the general education environment and integrated into the class as much as appropriate. It exposes the neurotypical children to neurodiversity and it allows the special needs child to learn and practice social interactions. For Monster, this is ideal because he seems to crave other kids. He doesn't know how to interact with them which causes him anxiety. It takes him a while to try new things and he prefers to observe something for a long time before trying it. This situation should give him the opportunity to observe other kids and get comfortable enough to start to interact with them (that's the idea, anyway ;)).

Back to the first day...other kids starting showing up, and eventually the yard got extremely chaotic. Still, Monster stayed in the middle of it fairly well for a while. I was playing with some of the other kids, trying to show him kids are cool. Eventually, he walked off by himself to lay down on a bench in a quiet corner of the yard. I was pretty happy about that, it showed he knew he needed some down time and found it.

During the chaos, I learned that the procedure for school is the student put his/her backpack in the line that corresponded to his class. Monster's line was No. 13, which for us is a lucky number (long story for another blog) so we took that as a good omen. Once I learned this, we had Monster walk his backpack to his spot in line, drop his backpack and go back to playing.

We cuddled for a few minutes in the quiet place before the whistle blew and my nerves really ratcheted up. Mr and I each took a hand and we started walking to wait in line. Monster resisted a bit, saying playground, but I think he was just pushing boundaries-he didn't try to break away and we were able to direct him to the line fairly easily. He didn't do that well in the line, however. There were a lot of kids and parents (the kid in front of him was crying in his mom's arms, poor baby) with his stuff in the middle of it. It reminded me of a semi-controlled mosh pit. Monster was wide eyed and I could feel his anxiety start to climb (up until now, he was getting overstimulated, but he wasn't really anxious that I could tell). He was very good about telling us he wanted his backpack off. Very adamant! He did keep it on, though, so I think he was pushing his boundaries again. We chose to bring him to the back of the line, where it was less crowded and waited until it was time for him to go in. After a few minutes, teacher started to take his class in. The special ed teacher came up and took his hand to lead him in and, with a sad little look over his shoulder and a shouted "I love you, Baby" from mom, away he went.

Mr was given permission by the teacher to peek in the window, so he did and caught Monster chilling in the bean bag (Monster also caught Mr peeking). No screaming, no crying, no meltdown (not even me). Phase one was complete, separation was achieved with Mommy having a tougher time than Monster.

About 2 hours after school started, I got a call from the school nurse. Everything was fine, but Monster bit off an swallowed part of a toy. Fortunately, that was the worst of the day.

Before school started, we had set up a system with the school for Monster if he started having problems. He would be given the option of talking to mom or dad on the phone, and if he wanted to go home he could. At lunch time, 3 hrs after he was led away from us and 3 hours before school would be out, Mr got the call. It was lunch time and Monster was asking for Daddy. Because lunch was going to be in the cafeteria, which could be loud and crazy, it was decided that Mr would pick him up and the day would end there on a positive note.

While picking Monster up, Mr got to talk to the principal and teachers again. The plan for tomorrow is for Mr and I to walk Monster down to his classroom, rather than have him line up. Afterward, we are suppose to meet with the "team" (we think the SLP, OT, Sped teacher, etc) for a bit. Mr is going to eat lunch with Monster to help him get through that tough place. After lunch, Monster will have the choice to stay for the remainder of the day. I think he will likely stay if he can get through lunch.

I must say I'm completely impressed with the school and the staff and have high hopes for the upcoming school year.

6 Flags Fun

2009-08-23T20:03:00.000-07:00

Because of Hurricane Bill, the weather is very hot and very humid here on the coast. Saturday, we went to the beach to enjoy the wonderful surf (see previous blog). Sunday, we decided we needed to find something cool and indoors, so of course we decide to go to 6 flags (Note: neither cool, nor indoors). We have passes from 6 Flags in CA, where Monster enjoyed many, many action packed days. These passes are good at all 6 flags (including our parking pass) so we decided to schlep up to Massachusetts to visit 6 Flags, New England.

The trip up was relatively uneventful, but as soon as we got there, it started to rain. Summer showers in the midwest and east coast can be fairly heavy and warm. That was the case on Sunday. Since Monster despises his shoes or hair wet, I was fairly nervous he would have a total meltdown. As keeps happening these days, he amazed us. He let us put a hat on him and instead of freaking out over the wet shoes, he actually decided to play in the puddles.

As is typical with summer storms, it was over before the end of the first Thomas the Tank Engine ride and the day got hot and steamy. We found rides he had ridden in the past and because of the rain, he could get on them really easy. We let him pretty much decide where he wanted to go most of the day (with some guidance from us when he was too overwhelmed.

This 6 flags was also a water park, so we eventually headed out that way to cool off. Off course, he was fascinated by the water slides (but didn't want to try them). One thing he totally loved, was a water obstacle course (for want of a better way to phrase it). I've posted a video below of his final crossing. The first attempt was by himself, and he ended up in the water almost immediately. Mr asked if he could help in, and they said sure.

The day was hot, humid and exhausting. But fun (and it only cost us the money for gas since we bring our own food ;))

The Happy Parts of a Hurricane

2009-08-22T16:25:00.000-07:00

As a child of CA, especially one in college during the 1990's where many of us had a deep philosophical connection to the zen-like Patrick Swayze in Point Break, I knew that hurricanes produced amazing waves; excellent surfing conditions (though dangerous). Seeing as I was a Valley Girl, not a surfer, I didn't really grasp what that meant. Until to today.

Today was the first annual beach festival in Newport, RI. It was at Easton beach, a small spit of land between the ocean and Easton pond. The festival featured free slides on the water slide and reduced cost bumper boats along with great food (that we missed because Monster was ready to leave before the food was ready to be bought, oh well, next year) and of course, the beach. Because of Hurricane Bill, there was no swimming allowed on the beach. The waves were not only huge, but very strong with a powerful undertow. I don't think I've ever seen waves as high nor an ocean as turbulent as that. I realize that many others have seen the seas in even more dramatic conditions, but this was MY first.

We decided to look around a bit before playing in the ocean. Since there was no swimming, we didn't think we would get very wet and wanted to see what else there was. Walking around, we stopped by the nice playground, the blow up water slide (just an inflatable slide about 18' in the air with flowing water, the slide didn't end in any pool) and the bumper boats ( a handful of blow up boats with small motors in a pool about 25' across and about 2 feet deep). Monster was curious about both of these. First, he watched some kids go down the slide and then wanted to go on the boats. Ok, he didn't actually want to go on the boats, he wanted to go swimming in the "pool". The awesome ride operator let us see if Monster would get on before we bought a ticket (rather than waste the money). As expected, Monster wouldn't get on the boat.

He also wanted to go on the water slide. It was so steep, I didn't think he would, but the wonderful ride operator let Mr. walk Monster up the ladder to see if he would try it and kept the other kids off when Monster and Mr climbed back down the ladder. Even though Monster didn't go down, I was impressed that he would go up and try. If it was a little less steep, I bet he would have even gone down!

After try something new (and failing, in his eyes), he wanted to go into the water. Mr and I didn't change into our suits, thinking we wouldn't go in that deep (we were idiots), but made Monster change. At first Monster would hold up his trunks, like a skirt, so it wouldn't get wet. He was fairly timid, considering he and Mr had gone to the beach several times with much success. It is so funny how he will do anything to avoid getting wait and then throwing himself completely into the water when he finally does get wet! We hung out in the water for a while (with me finally getting my swimsuit on and Mr. giving up and swimming in his shorts ;)) before Monster decided he wanted to try something new again. It was as if he had been thinking about things and finally came to a decision, but he suddenly took off toward the bumper boats.

Mr and I eventually caught up to him and he indicated he wanted to go on the ride. I got down and made him look into my eyes and asked him if he wanted to go into the water or the boat and he said "Water", so I assumed he wanted to go swimming in the "pool". He was quite insistent, and after a while he did say he wanted in the boat (when presented between the boat and water), so Mr went to get tickets while Monster and I got in line. There were several kids ahead of us, and Monster was quite patient. Every time I asked "Boat or water" he would answer boat, so we stayed in line. Finally it was our turn. Monster climbed the metal steps and got to the edge. the very nice ride operator held the inflated boat steady and, shock of shocks, Monster tentatively stepped onto the boat. He gingerly climbed in, and after some help, sat down and was off. He didn't seem too keen on actually steering the thing, but he stayed seated for the duration of the ride and got off without any meltdowns, tantrums or problems. I was so very, very proud of him! The entire experience couldn't have been easy and he did great.

But damn, what a time to be without the camera! We had it but I had put it in the car when i put my suit on since I didn't want to get it wet.

Soon after the boats, we packed up and went home. Monster has a problem with wet clothes, and did have a bit of a meltdown when I wouldn't change out of my suit fast enough for him. All-in-all, though, it was a really fun day. I'm so proud of the little guy. I know the entire move has been tough on him, but he's been a real trooper about everything. Part of me wonders the move made him feel so powerless that he decided (consciously or not) to become more assertive and forceful about getting his own way, along with being a bit more fearful-wanting to control everything around him, even Mr and I.

Anyway, here are some pictures of Monster enjoying the surf:

You can see how rough the surf is from some of the pictures. The amazing part is the photo of Monster sitting in the water with the tide rushing out. You can see how fast the water is rushing around him.

Angels on Horseback

2009-08-15T19:29:00.000-07:00

While we lived in Pacifica, Mr. found a great place to take Monster horseback riding (http://www.halleckcreekranch.org/). I've posted a video from there. The folks there were awesome as were the horses. Monster enjoyed it and during his time there he learned how to wear a helmut and started wearing goggle while swimming. The price was perfect (free).

So one of the things we needed to find when we moved out here was a new place to take Monster riding. Mr hit one out of the ball park with this one.

He found a fantastic facility in Exeter called Angels on Horseback. This place was amazing.

It was a hot/humid day, and Monster was already a bit cranky. When we got there, there was a simulator (The call it an Equicizer, from their website: "The Equicizer, named Oreo, is a mechanical horse which perfectly simulates riding a live horse) That Monster got right on. While on this thing, we put a safety belt on Monster (this dohickey that went around his waist that the volunteers could hang on to to prevent him falling) which he had never worn before and which he wasn't very happy to wear. On top of that, we tried to put on his helmet. He hadn't been on a horse in a few weeks, but we had been taking him bike riding to keep him use to wearing a helmet. Even so, Monster wouldn't let me put the helmet on him for more than a few seconds (literally 2 seconds and then he would push it off). I was getting pretty apprehensive about things at this point; I mean, he has had a lot of changes in his life and he hasn't really gotten his sea legs, so to speak. However, this is when Mr. really shines, in my opinion. He has such a good feeling for how far we can push Monster. I'm a lot more skittish than he is and will back off faster.

If we had followed my instincts, we would have missed a fantastic experience today. I doubt I can fully describe what a wonderful place and experience this was for us. Both Mr and I were fighting back tears, the good kind.

But I'm getting ahead of myself, a bit. From the start, he was trying to take his helmet off. He really didn't want his helmet on. He really, really, REALLY didn't want his helmet on. He was crying, biting his hand, trying to take the thing off while we got him set up on the horse. The volunteers were absolutely fantastic about re-directing his hands back to the handles on his saddle. So his first ride began with him being lead tearfully off on Taz.

At Halleck Creek, a volunteer would lead Monster around the grounds a bit. A pleasant afternoon ride. Angels seems, to me, the next step. This ride is not around beautiful ranch grounds, but through a series of activities. First, they took Monster to a mailbox where he opened up the box and took out a magazine which he then carried to the next mail box, where he put it in (and raised the little flag thingie). Next, he got to play basketball from the horses back (see above), weave through poles, placing hula hoops around them, threw bean bags, etc. It was a complete therapy session! He had to reach, stretch, speak (answer questions), use different textured balls-OT, ST and hippotherapy all in one.

And this was all volunteers! Wonderful, knowledgeable, patient volunteers.

This will sound trite and cliched, but they really were Angels!

Bad Mommy-I go back to work

2009-08-12T20:37:00.000-07:00

Since the move, Monster has had two huge problems.

1. He hates to go to bed. We've had sleep issues in the past, really horrific battles at bedtime, which have gotten much better recently (before the move). Some days are better than others, but it's no where near as good as it was before the move. He tries to be charming, he gets very wired. He does whale song (a series of vocalizations he knows makes me crazy). I watched him the other night start whale song every time he would doze off a bit. I suspect it is a fear of going to sleep not knowing what changes will result when he wakes. Some of it is the weather (hot/humid, loud air conditioning); Some of it is just the strangeness of a new place.

2. Clinginess and staying home. He has always been fairly well traveled-it was nothing for us to drive an hour and a half for him to go to 6 flags; heck his horseback riding was an hour+ from our house, no sweat. Since we've been here, he doesn't like to leave the house much. I suspect this is because he is still scared that we are going to uproot him again. He is both trying to stick to what he considers known and his as well as preventing another upheaval by not leaving. Before the move, he was sleeping part of the night in his own bed and even after he climbed into mine, he would sleep a part from me. now, he is back to my bed completely and attached to me like iron on magnetite (geek reference). The clinginess is tough for me. After over 6 years of it, I'm extremely touched out. I'm tired of sleeping with him on top of me. I have pinched nerves in both of my shoulders that result in me waking up with numb hands, my back is always out of wack.

In addition to the move anxiety, I started back to work. After having Mommy home for the past 4-5 weeks, Mommy is gone all day (leaves before he gets up and gets home an hour before bedtime). Tonight, he wouldn't even look me in the eye. We sat for about 15 minutes, me holding him on my lap asking him to look at me (which usually gets him to look me in the eye) before he would look up and he only did that because I told him he couldn't play on the computer until he did. I should have known that was coming, he turned his back on me when I took over his bath time.

This is increasing both the bedtime problems and the clinginess. When he was much younger, he would make me sit on the couch (if I got up, he would lead me back and push me down or meltdown if I didn't) and then stand in front of me with his back turned when I would get home from work. He has never liked me working, but we've always liked to eat and sleep under a roof, so off to work I go (not to mention I love my work).

All of this also makes Mr's job harder-in addition to him dealing with setting things up here regarding services, school, activities, etc.

His language, for the most part, still remains pretty good. He is now telling us when he has a bad tummy or an owie (which he has many of these days because of rough play). He even asked for owie medicine tonight (though he wouldn't take it). I try to hold on to the fact that though he may retreat more often than we would like into his Cartoon world, he reciting things out loud to us, which suggests a confidence in his own speaking ability.

Things are going to get worse, before they get better, but I have to believe they are going to get better.

How does one learn patience?

The Move, Part 3

2009-08-09T18:43:00.000-07:00

Sorry for the interruption, but we only have one real computer (it's pretty tough to blog from the iPhone, though I've done it in the past) at the moment and Monster is having a blast playing games on it.

We had thought we had a place all set up for us in RI before we ever left CA. However, the owner decided he didn't want a dog on the property and Mr. had the un-enviable job of finding us a new place to live in little to no time. He did spectacularly-he found us a rather quirky place not to far from the water. It has a finished basement (with kitchen and spare bedroom), a huge deck and a beautiful open backyard that came with a tree swing and swing set (that we have added a slide to since moving in).

Move-in day was extremely hot and humid. We started out late; both the owner and the moving van was here before us. Monster was a trooper-playing in the house and deciding on the downstairs as "his" place for the day. He also fell in love with the outside swing. IN fact, he has tried to sneak out several times (and succeeded a few heartstopping instances) in order to get back there and play. We seem to spend a lot of time back there in the mornings rather than his playing with DVDs.

Since moving in, Monster has had a difficult time of things. As usual, it manifests in his bedtime routine and sleeping habits. He has never been an easy kid when it came to going to bed. He and I have had some epic battles in the past when it has come to sleep. Recently (as in before the move) his nighttime problems seem to have subsided quite a bit. However, the move seemed to have instilled a whole new host of problems.

One thing Monster has been doing lately, which is both pretty remarkable and difficult to deal with. Monster has taken to reciting entire Go Diego Go episodes. I realize that in the scheme of Autism, that's fairly typical, but for Monster, he hasn't done this before (partially because he couldn't or wouldn't speak) and it is pretty cool to hear him utter entire sentences, even if he is just is reciting something. On the other hand, this is just another way for him to tune out the world. He seems to start reciting things when he is either upset, or overwhelmed or doesn't want to listen to us, which these days is often.

I realize that set backs are going to happen, especially when I've completely turned his world upside down. So I'm trying to look on the bright side of things. He has found another way to check out from us, but at least he is speaking when he does it.

Hopefully he will settle in more and get more comfortable with the new place and we can build on this.

The Move, Part 2

2009-08-08T08:05:00.000-07:00

When we landed after the traumatic flight, Monster was VERY happy to see Mr. He tried to run the entire way to baggage claim; I tried to prevent this since I was hobbling with a bad back.

He ran right into Mr.'s arms and I went to find the luggage while Mr. tried to get Monster to drink some water (flying is so dehydrating, isn't it?). Ok, got luggage, found car (where the 4 legged monster was waiting for us, I missed that mutt!). It's after midnight, local time, but internally for Monster and I it's just past 9:00, near his bedtime but not really past it. Monster had a tough time settling down, but eventually went to sleep.

Unfortunately, the next few days weren't that much fun for Monster and I know it pushed him to the limits of his control. All-in-all, he did great. Saturday was our first full day in Rhode Island and Monster was in a strange place-that luckily had a pool. We got up, went out for coffee and a trip to Whole Foods for Monster's food followed by a drive around the island that was to be our new home. It was very hot, very humid. I was having flashbacks to that first miserable summer I spent in Pittsburgh before graduate school (not a pleasant memory for me).

The Island is quite beautiful. We chose this place because of the wonderful things we had heard about the school district in addition to the attraction of living in a small town where people would be able to really get to know us, and Monster. One of the more difficult things for a family dealing with Autism is the isolation. Even though we lived in a fairly populous place, Bay area of California, it was very difficult to really get to know people. We learned fairly early on after Monster's diagnosis that his behavior deteriorates when I spent long hours away from home, so free time wasn't available to follow outside interests. Because Mr was the stay at home parent, it was harder to connect with other families-there is still a large prejudice against stay at home dads-more so than there is against women in engineering these days. Our main circle of friends (our wonderful, caring, supportive, funny circle of friends) were families with children who had special needs. Which, on the one hand, is great because they understand you, what's going on with you, and to some extent your child (no awkward explanations, no weird staring, no uncomfortable silences as someone tries to figure out if you are someone to be pitied or just a bad parent). On the other hand, they have the same restrictions (or the same type of restrictions) on time, money and finding a baby-sitter, so nights out without the kids were few and far between and nearly always filled with discussions on our fight against the District or State.

This isolation is why we, foolishly or not (only time will tell), chose to move somewhere where there was a tradition of, if not acceptance and tolerance, but of knowing your neighbors. The kids we hope to run into at the playground, should be the same ones he will go to school with. His education will no longer be segregated to a campus where he won't meet neuro-typical peers, etc. etc. etc. etc.

Sorry for the side trip, back to the move story.

The first day we visited the Island, Monster was already at his limit-we had gone to the store (his least favorite place) and denied him his DVD player (we don't allow it in the car except on long trips because he tends to fixate and not notice anything else around him)-maybe we were wrong, who knows. We parked to drop off flowers for someone who had helped us look for a place. He didn't like sitting around while we spoke to folks at the real estate office (which was fun because not only were they all really nice, let 4-legged monster into the office with us, but one was the PTO president of what will be Monster's new school), he didn't like sitting around while Mr and I got something to eat. After all, he was having fun at a playground before we dragged him to lunch. He also wanted to go to the library for his daily DVD checkout (which we couldn't do since we didn't have a card or any proof we lived in RI) and he managed to delete his Go! Diego, Go! episodes off his iPod (a truly useful device). Eventually, we got him back to the hotel where he was able to swim before we went out in search of dinner.

Oops-Monster just got back from playing outside (I know I haven't mentioned it, but our new house has a swing attached to a tree outside and Monster adores playing outside there). I'll finish up more later.

The move is finally over (sort of)

2009-08-06T18:53:00.000-07:00

Whew.

We finally got internet access yesterday so I finally get to re-connect with the rest of the world. We are mostly moved in, but still have a few boxes to clear out and some things to organize. I wonder if I'll get everything unpacked this time. When I was packing up the last place to move here, I found several boxes that I hadn't gotten around to unpacking-two boxes of clothes, several boxes of knick-knacks and 1 box of just candles.

Anyway, it's done, the move that is. I start the new job on Monday but until then, I'm just trying to acclimate myself to life here on the island. It is quite different from anywhere else I've lived. Everything closes by about 9:00 or so and there are few take out options. Both Mr and I are looking forward to more home cooked meals and quiet time together.

So, the burning question on the minds of my imaginary blog readers-how did Monster deal with the move. In many ways he has exceeded our expectations-asserting himself in many ways and communicating his wants and needs with language. In other ways, he has had a very difficult time.

The moving van showed up two weeks ago today. That morning, Monster had a speech therapy appointment-his last one for a while. His sleep habits had gotten a bit weird before we moved. I imagine it was related to the packing, Mom being home and the different schedule at school. That last day, he had a difficult time in speech. He couldn't settle down and was biting his hand more than usual. His therapist, as wonderful as she is, couldn't get him to settle down much. It's tough that his last therapy appointment was so rough. The whole day he was off. He didn't want to go to the playground. I tried to prepare him for when we got home-that the place would be empty. When we finally got home that day, he ran around a bit, going from room to room while I finished the last of the packing. It's hard to explain but I could almost feel his anxiety increasing bit by bit.

We left that night-made it all the way to Bakersfield before we stopped for the night. Monster fell asleep for a bit while on the road, but he didn't sleep long. Finally, we found a room and all of us got a decent night's sleep before continuing on to my folk's place. Up until now, Monster was doing ok knowing he was going to Nonny and Poppy's house. He likes it there; they spoil him ;)

Mr spent a day or so with us before taking off with the mutt and driving across country. Monster and I hung out with my parents, which was fun. Monster got to go swimming everyday and we even got a library card (FYI, Las Vegas gives library cards to non-residents) so he could check out DVDs everyday. We went bowling one time and he would put his fingers in the holes and carry the ball up (I'll try to upload some video when I find the right cables).

All in all, the week went by very fast and fairly easily. Monster went to bed with little problems; we worked on his writing, reading and math each day. I was a bit concerned about the airport, but not the flight.

Silly me.

I pretty much did everything wrong the day we left Las Vegas. When the car came to pick us up, I put Monster's iPod and gum in the trunk. He started crying in the car. He wanted to go back to Nonny and Poppy's house. He was great in the airport, at first. He went through the security line with little incident. He listened pretty well to me and followed directions with respect to taking off his shoes and walking through the metal detector. I found a place that I could plug in his DVD player and thought things were going smoothly.

But we were in the airport a bit too long. The noises and lights of the slot machines, the crowds of people; it was like a ball gathering momentum when going down hill. He started getting overloaded, which upped the anxiety, which overloaded him, so on and so forth. He ran off once, and a very nice lady snagged him while I ran after him. He was adamant at this point that he "wanted to go home". I couldn't get him to calm down too much and he tried two more break aways. Finally it was our turn to board, and he decided to have a massive melt down. He was screaming and crying "Won't go" he screamed over and over. He pinched me, hit me, broke away running out of the gang way-all in front of the people waiting to board the plane. A very nice lady rolled my carry on stuff for me and another nice flight attendant put our stuff in an overhead bin while I struggled with the Monster.

I took him to the very last seats on the plane. The entire time, he was trying to grab a hold of the seats while I literally dragged him up the aisle. I have never been so mortified, or terrified. When we got to the last row, he wouldn't sit down and held himself rigid, still screaming and crying. I was just finally getting him to settle a bit down, when I buckled him into his seat and he started up all over again. "Seatbelt off" "won't go" his language was doing pretty good at the moment; there was no doubt what he wanted (or rather what he didn't want). The pilot came back to talk to us. He tried to talk to Monster. Started out asking Monster's name (funny story below about this) and when I told him he tried talking to Monster (who didn't want to talk to a stranger). I explained that Monster had Autism and that he would calm down when we go into the air and I could turn his DVD player. THe pilot told me to go ahead and give it to him, which I did, and Monster did calm down. The pilot came back in a while and I could tell he was preparing to ask us to leave if Monster had not calmed down. The only thought going through my head was that if Monster got off that plane, he would never EVER get back on another plane, which would have made moving fairly difficult since I didn't have a car and Mr. was already in Rhode Island.

Monster did great, given how the flight started. I kept up a constant stream of words, telling him we were going to go see Daddy and we had to fly there to see Daddy. He kept crying for Daddy and I kept telling him we were going to see Daddy. Poor baby eventually cried himself to sleep after take off. It was ironic, between a poor night's sleep, swimming that morning and the energy it took to fight and cry for so long, Monster may have slept through the entire flight had the flight attendant not made an announcement that we could turn on our electronic devices. At this point, Monster woke up. However, he was much calmer. We took out his DVD player and he watched his DVDs the rest of the flight, while being fascinated with the sights outside the plane. He was just getting restless again when we landed. I was so fortunate to have had a direct flight. I wonder if I could have gotten Monster back on another plane had we needed to make a connection. I'm glad I didn't have to find out!

As I got up from our seats, my back started to spasm. I was sitting in an awkward position, not to mention extremely stressed and tense, for a long time. Having sever back pain, made moving difficult, but at least we were here.

Well, it's late and we have another big day tomorrow. I'll write more about the new house and his adapting to the island.

Edited to add:

One thing Monster's therapist had been working on was him knowing and saying his name as well as his age, my name and Mr's name. So when the pilot asked his name, and I re-asked him "What's your name?" He said it, all the while hiccupping and crying, but he said it. First and last name. I know he only did so because he was motivated by thinking I would let himeout of the plane if he did what I asked, but still, he did it. Later on (a few days later, as I'll talk about in another blog) a little boy asked him his age, and with some prompting, he answered 6 years old. So if his ST from Mill's is reading-he did it!!!

A Big Horse for a Big Boy

2009-07-18T19:40:00.000-07:00

Monster upgraded from a pony to a big boy horse. We've tried it a few times over the past few months but he either hadn't wanted to get on or stay on the larger horse (about twice as tall).

This past Wednesday, on an extremely hot afternoon, the ranch where we go riding decided to try a bigger horse again since Monster's usual ride was sufferring from unrequited love (he seems to have been upset that his new female stall mate was taken out for a ride without him or something like that). We think Monster may have been showing off for mom (since I'm rarely there) and he actually got on, although he rode for a much shorter period of time than he usually does.

Here is a video of him and bandera:

We'll try the larger horse again next week; his last riding until we find a new place in RI. Monster is doing so many new things these days. I know he is going to regress during the move, but it will be tough to see.

Perceptions and Assumptions

2009-07-12T11:33:00.000-07:00

One of the biggest challenges parents of children on the spectrum face, in my opinion, are the judgments and assumptions by other people who have little or no clue. Most of our children appear "normal". They don't use a wheelchair or have any characteristic physical features that say "disabled". So when Monster has a meltdown, we are just as likely to get the stink eye from passers by as the parents who can't control their spoiled little brat as we are the pitying look.

For the most part, I can ignore it, assuming I even notice anymore. As a self-defense mechanism, I tend to hyper focus on monster (probably too much so) when he starts a meltdown in public, maybe exaggerating what I do to calm him down to show that he is not "normal". I also try to give other parents the kind, understanding, look when other kids get out of hand, after all, I don't know what challenges that family may have been experiencing that day.

All in all, I consider myself fairly accepting and a bit Pollyanna-ish (just ask my friends at ihmmb).

Which is why I'm having a tough time with what I saw (and felt) yesterday.

We were at 6-flags again, indulging Monster in one of his favorite activities-go carts. One of the single drivers, a young man in his late teens/early 20's by my estimate, spun out and crashed hard into the track edge. No biggie, it happens. Not long after he got righted, he did it again. Then a third time-for which he was kicked off the course. I totally understand the need to get him off the track, an out of control driver is dangerous. As he was pushed off the course, he steered a fourth time into the wall and the crowd cheered as he was kicked out. Many were annoyed, some were mocking. My first thought was "what a twit for driving faster than he could do so safely". I admit, I get very annoyed and pissed off at the little punks who race each, cutting folks off and yelling at slow pokes (like me, which is why Mr takes Monster out).

As the race ended, I walked over to the exit to help get Monster away before he melts down for not being able to ride again. I noticed the same young man who was kicked off the ride. He was walking in circles, mumbling, and flapping his hands. As his friends go off the ride, one of which was another young man who I noticed was driving slow and having a hard time controlling the car, he spoke in a slow awkward way that was reminiscent (to me) of someone who has difficulty speaking.

I have no idea what special needs this young man had, nor those of at least one of his friends who I also suspect was developmentally disabled, though I'm sure at least one, if not both of them were disabled. My first thought was of shame-how can I, of all people, get caught in that judgmental trap of just assuming that a person is "normal" but acting like a jerk? After all my preachiness online about seeing past the obvious and trying to be more understanding, there I was being a judgmental bitch who silently agreed with the jeering crowd-that this young man was deserving of public humiliation. Even if he wasn't disabled, why had I jumped on the annoyance bandwagon? There was nothing overt in his behavior or demeanor that suggested he was deliberately trying to be a jerk by losing control. In fact, at the time I wondered if he just didn't understand English enough to figure out the signals and rules. Not everyone is good at driving those cars-I'm certainly not (which is why I try not to drive them). What a hypocrite I was to preach at others to look past the obvious and yet there I was doing that exact thing.

My second thought was that that kid could easily be Monster in about 10 or so years. Heck, to some extent, it's Monster now. It reminds me that in addition to teaching him how to try and find his way in this world, that everyone is different and it's ok to be different or to have struggles, but that he must also be patient with those who don't get that. Not only does he have to accept himself for who and what he is, but he has to accept (and ignore) that there are others who won't accept him no matter what; that he may be laughed at or mocked just because he is different. I remember how tough it was for an overweight geeky girl to do that in high school, and I was smart enough to understand, at least to some extent, that those people didn't really matter, nor did their opinions of me.

The thought is overwhelming. Sometimes I wonder why I'm fighting so hard for him to have an opportunity at a "normal" life when that path is so much more dangerous to him, in the long run. Not that I have a choice, this is the world in which we live and I need to prepare him to live in it. But am I setting him up for failure or success by trying to integrate him as fully as possible with the rest of the world? To tell him he can try to do and be anything he wishes-even if he fails at it.

If I can be as judgmental as I was yesterday, how can I ask the rest of the world to be accepting of him?

I can only hope that I can work past my own assumptions and perceptions and "become the change that I wish to see".

Go Diego Go

2009-07-08T22:56:00.000-07:00

As I am home full time now, thanks to my current job ending and my next one not yet beginning, I'm getting to spend a lot of time with Monster. He is being pretty accommodating by developing new skills while I am actually around to see them (for a change).

His latest talents have been intimately linked to Noggin's Go Diego Go. One morning, by happenstance, Mr. turned on Noggin while this show was on. Monster use to love to watch both Dora and Diego episodes, a few years ago, before he "graduated" onto Disney. This time, he was different. He actually watched them. It started with the episode about condors when he would watch and then say "condors, condors, condors" and started singing the theme song, with his version of Spanish.

Go, Go Diego.

Bamose, Bamose, Diego.

I want Condors again, pease [sic]

Then he got interested in the rainforrest race episode, where he told us about the armadillo, pumas, bears and monkeys. He had this story in one of his beginner reading books and would point everything out to us while he was "reading" it. The big difference, though, with his watching the tv, he started doing the actions with the characters and shouting out the words at the correct interval. In technical terms, he interacted with the show in an age appropriate way.

Mr and I sat there stunned. We looked at each other and were nearly bawling our eyes out.

Wonders upon wonders, he seems to have linked the TV show episode to both the book he reads and to the Smart Cycle (electronic toy that hooks up to the TV) Diego game that he plays.

In technical terms, he generalized.

In emotional terms, he connected a few dots.

As with everything, it is a blessing and curse. He wants to obsess on these episodes over and over again and surfs on the edge of a meltdown when he has to do something else. But I'll take that, thank you very much.

His therapists and teachers have been telling us how well he has been doing, even if his behaviors at home are a bit moody. I hope we can keep this going during the move.

Sparkler's red yellow and green glare

2009-07-04T22:23:00.000-07:00

First off, this is being posted from my iPhone, which is pretty cool.

Today is the 4th of July, time of celebration and remembrance of the founding of the United States. Americans celebrate our declaration of indepence from what they view as the tyranny of britian and King George. I suspect that the British government of the time likely viewed this differently, but as the saying goes, history is told by the victors. Given that nearly everything that could have gone wrong during the revolution, did, it is hard not to think it was destiny that this country ever broke free from their parent And survived it's infancy. Whether we survive our adescence has yet to be determined, though I'm hopeful.

But this entry really isn't about my esoteric ramblings on the state of the US.

I want to share what has been an amazing day for Monster and a blesed day for his parents. As those of you with sensory challenged children know, dya like today can be a miixture of grief (Because you can't share the joy and fun of fireworks), terror (of when the inevitable meltdown will take place), frustraton (at the never ending loud and bright noises keep your child awake or reawkens them) and exhaustion (after dealing with an overstimulated and out of control child all day). At least, that's always been our day until today.

We decided to take the chance of goin to the zoo, hoping more folks chose to go on to a BBQ than the zoo on tis beautiful day; a gamble that was correct. We bought some sparklers (fireworks are legal in our town) and stopped by grandmas' (Mr's moms) house on the way home. Dinner was uneventful and as the sun started to fall, I decided to try the sparklers. Monster was enthralled. Rather than shying away, as I thought he would, he was more ready to grab one and play with it. More ready than I was!

He waved his sparklers wildly (and a bit scarily), quickly getting bored with his mother's extreme caution. As soon as one burned out, he asked for more. He jumped and screamed in excitement at the fireworks going off around us ( we live on a hill overlooking several culd-a-sacs, where many blocks would shoot off their fireworks), looking around eagerly for the next bang and flash.

He suffered no fear.

No wild running around out of control.

No hand biting.

No tantrum when our meager supply of sparklers were gone.

When the last glare ended, he followed me inside and laid down on the sofa, where he fell asleep 10 minutes later.

An amazing and memorable day for me and one I hadn't counted on having. The type of day the feeds into my delusons of normalcy.

Happy Independance Day!

Bad Night-My fault? School?

2009-06-30T11:08:00.001-07:00

Bedtime last night was horrible. It started out ok. I got home and he was talking to the computer. I worked in the garage, going through old toys and clothes-what gets donated, what gets tossed. He went downstairs without a problem. Was a bit hyper during Thomas, but not in a bad mood.

Then bedtime.

Oy.

He kept asking to go upstairs, screaming when I reminded him that it was bedtime. I could tell he was exhausted, poor baby. Mondays are especially tough on him and Sunday night, we left him to sleep in his own room, in his own bed. He woke up about midnight and seemed to be chatting to himself happily. We moved him back to our room and finished out the night, not too bad. When I dropped him off at school, he didn't want to go initially, but when we got to the classroom, he said he wanted to stay. One of the behaviorists, who had worked with him a lot in ABA, was one of the classroom aides, along with the two other aides (one of which I knew, but the other I did not, which doesn't mean much, I only drop him off on Mondays). The day seemed to go well. He had OT, a change it's usually on Thursday, and one moving company came by to estimate the upcoming move-another change. Mr. said Monster didn't want to go to the beach to play airplanes, which is odd.

All-in-all, not that out of the ordinary.

But bedtime, yikes! Mr and I both had to hold him down to keep him from either biting his own hands, or us. We both got pinched several times, I got it on the underside of my arm (ouch!). Monster was manaical. He was alternating trying to play and laugh with a screaming mimi fit. Song didn't do it, speaking calmly didn't do it, in fact that seemed to set him off more. Finally, I had him in a body hug and told him Goldilocks and the three bears (mommy style). He fell asleep between the too-soft mama-bear chair and the broken baby-bear chair. Mr. fell asleep during the porridge portion.

Total bedtime, 1 1/2 hours of wrestling.

Total sleeptime: 7 hours.

Monster woke at 4:30. Mr tried to get him back to sleep. I went down about an hour later (Monster actually stole my covers and kicked me out of bed) to see if I could help, but Monster was up and forcing me to hold to my promise of the night before "First sleep then up the stairs". He did his portion-sleep, now I had to hold to mine-up the stairs. Mr went up so I could try and catch a few more hours of sleep (I had gotten to bed about 1:30 after playing in the garage some more), but I could hear Monster starting to tantrum again. Very picky about how everything was suppose to be. I couldn't sleep with that, so I sent Mr. down for sleep and stayed with Monster, who settled down with Mommy around. I was able to cat nap for a few hours while he alternated playing on the computer and on his bicycle (a doohicky that connects to the TV). He was chatty, informing me he was saving pumas, armidillos and the like, cute and charming.

Finally, time came to get him ready for school, albeit a wee bit behind schedule since I was dragging so badly. We got to school and he was still fairly riled up. His favorite computer was taken. Sigh, at least he wanted to stay which means Mr can get things done.

I've been trying to think of the cause of this behavior. My initial thought was I kept telling different people how well he was doing, so Murphy's law kicked in to knock me back. On the logical side, it could be the gluten we pulled from his diet working its way out. It could be he senses the anxiety and excitement Mr and I have about the move. We haven't told him much, just that we are going on an adventure and he would be going to a new school, but he knows something's up. It could be the new schedule at school-it's ESY now and it doesn't seem to be very structured. They have the schedules up but haven't populated them with the student's icons. Monster looked a bit baffled and then decided he gets to do what he wants (yikes! Poor teachers). It could be having his old behaviorist in the room, and having to share him. It could be because he woke up in a different room without mom or dad on Sunday night.

The list is endless. More complicated than my blurry brain can deal with today. Mr is also a bit concerned about school right now, but he has so much to do. Losing that 3 hours everyday would make it tough for him to get what needs done, done. So we are taking a wait and see approach. Monster is going to have to do without school for a considerable period as it is, while we move and settle in, I don't want him to miss even more now.

Damn you, Murphy!

The Never-ending Wait

2009-06-28T13:15:00.000-07:00

As we prepare for our move, the wait is really getting to me. I want to get on the road, to start the next journey. Most of my trepidation centers around leaving family, but even in that I look forward to the distance from the drama. My mother is very hurt and upset that we are leaving the west coast yet again. My head knows that this is because she cannot visit us after we move, indeed to do financial and health related issues, she cannot visit us where we currently live, but I know in her heart she longs to be in the Bay area. She has always loved San Francisco and if she could not live here herself, she could live here through us. Rationally, she knows this move is the best for us. I doubt she realizes how perfect of a fit it possibly is. Now that she knows it is definite, her response to remind me of how alone I will be out there-with no friends or family. Three days ago, she was comforting me on how we would do well. Today, she wanted to fill me with fear of what is to come. Oh well, this is not the first time we've danced this dance together. For self-centered reasons, we've always done what we thought was best for our little family-first just Mr and I and now with Monster. We've always walked our own path. Rarely doing what is expected or traditional. Why should this next phase be any different?

I harbor no illusions that my new job will be a cake walk. Indeed, I don't want it to be. I relish the possibility to start fresh, in a place that I already feel is home doing what I know, in my more arrogant and conceited moments, I'm good at. That old feeling of ambition has reared its head again in my soul. Those feelings that were, as I refer to them, pre-autism. The desire to show others what I know, to push my mind and knowledge to the limit to expand it. To solve problems, to investigate the truth-to find out what really happened; how things really work and are made, and why the break. I wonder if I'm setting myself up again-the way I set myself up where I currently (for 4 more days) work. I find myself reflecting again, on what could have been, what may have been, had Monster turned out to "normal".

I find myself almost grateful that he has the challenges he has, though. Not that I wish these struggles, either his or Mr and mine, on anyone. I don't. But because I know that I would have become a person obsessed with my own fame and success-as much as happens in my line of work-or at least my delusion of it. I would have eagerly sacrificed the relationship with Monster to feed my career. I never got that chance, or rather I never felt like I had that chance. In retrospect, I could have buried my head into the sand, kept on my path with the thought it was "all for the best" and lost out on what has become the most important relationship I have ever, or will ever, have. Perhaps I did make a choice, unconscious though it was. I've resented it, resented giving up that other dream and blamed it on autism, on Monster on Mr. In the end, I guess it really was my decision. And one, though I regret much of what I did, I don't regret.

And that's the unknown reward, the silver lining on this journey of Autism. The fact that you, as a parent, are forced to accept your child for who they truly are so early on in their life. Not who you wish them to be, or who you dream them to be, but who they are. The dreams, the delusions, don't have the chance to root and grow. Challenges, quirks, difficulties, triumphs, love, anger, rage and pain-each is a gift that I would have never been given had he been "normal". I know my son in ways that I had never imagined. I can read his moods, his mind, his happiness and fears, in ways that I would never have been able to do had I not been "forced" to become the Sherlock Holmes I've become (though I feel more like Watson most days).

So with my new-found self-indulgent insights, my impatience grows. I want to be on the road. I want to escape the drama of prolonged good byes, hide away from the pain of losing that which I've built here. It's time to start fresh, to see if I truly have learned from my mistakes and grow into the person I hope I can become.

I look at Monster, playing loudly next me. Giggling at who can guess what, at Mr. who is devastated at the US loss to Brazil (or what we think is a loss, Monster switched on his computer game before we saw the end of the match) and I just want to get on with it already.

Patience has never been a virtue that I possessed!

Back to school, for now

2009-06-22T21:47:00.000-07:00

Monster started ESY (extended school year) today. He missed most of the last week of school because of a foolish parental error. Commencement was on a Wednesday, which we skipped because Monster doesn't generally do well at them and he was having sleeping issues that week. We assumed that commencement was the last day of the school year, so we didn't bother to go back to school either Thursday or Friday.

On Friday, the school nurse called to ask if Monster was still sick. Um, yeah, sure.

Oops.

So Monster has had a week and a half off from school, a decent break for him. In that time he has been to six flags about 3 times, and a ton of what always sounded like a lot of fun to me in between Speech and occupational therapy. I know last Wednesday they took in a Giants game (too bad the giants lost) coupled with a bart and muni-metro ride.

Anyway, today, back to school (cue the snapping of a whip). Monster was one happy little guy. Most kids would moan and groan, but Monster didn't even whine all that much when I told him he couldn't bring his bag of DVDs. I was worried; at the end of last term he wasn't that happy about going. Today, he seemed eager to go and had a great day. Mr told me that Monster was a regular chatter monkey. By the time I got home, however, he was quite tired.

His sleeping hasn't been that great. Ever since we went gluten free, he has been waking up in the middle of the night for a while. He generally won't settle down until both Mr and I are in bed with him. Cute, but cramped (at least it is when the dog joins us). Other than this sleep thing, a few days of increased hunger (as he chose not to eat some things) and some increased crankiness (which seems to be abating), taking the gluten out this time hasn't been as difficult as the first time.

So for now, things are going ok. I know in the next few weeks things are going to get pretty crazy. I don't have an exact date yet, but this job ends a week from Thursday and I definitely need to start work by August 1st so we have continual health insurance (not to mention our rainy day fund is quite dry). So I'm hoping to get everything packed up and on the road the first week of July. Currently, we are waiting for the relocation people to help us set things up, so who knows how fast any of this can be done. I'm completely overwhelmed with the idea that we are going to have to pack everything again and move it across the country. On the other hand, we have a great opportunity to really take a critical eye to the mounds of crap we have and only take that which we really need. I know that I won't actually being doing most of packing (thank the gods), but I will have to do most of the cleaning on this place, which is also a scary prospect. A hyperactive child and dog in close quarters with too much crap does not lend itself to a spotless house, and I'm not a great housekeeper to begin with!

For no good reason, I thought I would include a Monster and I in a very, uber brief duet of Hakuna Matata, one of Monster's favorite songs. I keep trying to get him on tape, but he is being uncharacteristically shy about singing for the camera.

Monster's response to pain

2009-06-18T22:19:00.000-07:00

A month or so ago (I blogged about it, but can't remember when) Monster had an ear infection. We figured it out fairly easily-he pointed to his ear and screamed himself to sleep.

Tonight, he was pointing to his ear again when asked if he had an owie, said yes-but instead of screaming, he was giggling. Normally, I wouldn't blog about something like this, but a message board post made me reflect upon how my son handles pain-and shows the world he is hurting.

Years ago, after we first got the diagnosis, I went to a lot of conferences, read a lot of books. I read, often, about how autistic kids had a higher than normal threshold to pain. I remember hearing stories about kids who had broken limbs but didn't react to them, kids who had severe ear infections and never complained. I wasn't there; these weren't my children so maybe they did indeed have a high threshold for pain.

However, I disagree with the general statement that people with autism have a higher threshold. I think they just express those feelings in a different way. They may not process "pain" the same way neuro-typical people do, but they do indeed know something is not right-something is off or different or, yes, even "hurts". Pondering this always leads me to the same rhetorical question, What is pain? If someone from another planet (who happened to speak english) came to Earth, how would I explain what "hurting" or "pain" is? What words could I use? I'm not clever enough, or intelligent enough, or wise enough, to come up with a way. You just know, don't you?

When my son was younger, and less verbal than he is today, he would express overwhelming emotion by biting-mainly me. He would bit me when he was very happy as well as when he was very mad, very scared or very excited. He wasn't trying to be mean (or rather, he wasn't always trying to be mean), he was just trying to release excess emotion. To this day, his default setting (when he is too overwhelmed or too tired) is to bite himself-not just in anger or frustration but when he is very pleased and excited.

With our kids, ok, at least with my kid, the obvious is not always that obvious. Giggling can be the sign of pain and biting can be the sign of happiness.

Never a dull moment in the life of a furnace mom ;)

OK, Don' worrties

2009-06-17T23:35:00.000-07:00

Monster's favorite phrase these days is "OK, don' worrties", his version of saying "don't worry" or "no worries", not sure which.

We've only been gluten free for the past 4 days, so I wouldn't think his recent chattiness is due to that, but we have been doing the cod liver oil, calcium/mag supplements and a digestive enzyme for about a month or so, and they may be having an impact. The largest impact I've seen has been in his sleep. Except for the past few nights, which may be because of the gluten removal, he has not been fighting me or sleep nearly as much as he use to. Rather than bedtime taking hours (and resulting in tears, bruises and/or blood), it takes about 5-10 minutes after his movie is done, and for those nights we watch Cars, he's asleep before the end of the movie.

I'm not sure which is the biggest impact on his sleep, treatment wise, but it is definitely related to his GI problems diminishing. In general, his bad nights corresponded to tummy problems-gas, bloating, cramps. We made one change to his diet (besides the gluten free this past saturday/sunday) and that was the removal of all artificial preservatives and colors (sodium/potassium benzoates, nitrates, etc.). Basically, nothing we can't pronounce or identify. The major problem was cutting sodas-Monster loved his diet coke (yes, that's my fault).

Since he is doing fairly well, and it seems like we are definitely on the right tract to treating a lot of his physical issues, I'm now turning my worry to the upcoming move. We've been in this house since Monster's diagnosis-the past 5 years. He knows this area, these people. I'm not sure how he is going to deal with a new location, a new house, new climate. He was going to be starting a new school this fall anyway, and maybe even a new teacher, so that challenge was going to happen regardless of our living location. I sincerely hope this new school is 1/2 of what we are hoping for. Given California's budget crisis, things around here are going to get even worse. More kids, more needs, fewer people.

Gettin More Organized

2009-06-15T12:03:00.000-07:00

You would think that after 4 years I would be more organized than I am, but I'm not. I have a theory that since the entropy of the universe is constantly increasing, every time one of you out in the world get organized, I get less organized so the universe is kept in balance (you can thank me later).

Anyway, with the move coming up (whoa, was that weird to say) and us playing around with Monster's diet, I've put together a food/behavior diary. Now I started one a few weeks ago, but it was more or less just me and Mr. jotting down what we noticed in a free-form way with Teacher filling out what Monster got into at school (his food at home is fairly constant).

I've started McCarthy's new book and she had a really good suggestion for what to keep track of. Being the engineer I pretend to be, I put together a MS Word document and put it in a binder (I swear, I have a million binders breeding in my garage!). Here it is (well, not formatted but you get the idea of what it says, I can email it to anyone who wants a copy, just let me know either by comment or email/PM me):

Date:

1. BM(bowel Movement): Yes/No Size (1=small to 5=large) Difficulty?

2. Supplements: What Dosage AM PM

3. Sleep: Amount Quality (1=good to 4=restless) Number of wakings Problems (explain)?

4. Rashes: Color Size Location Onset/duration Antecedent

5. Evenness of Temperament: (1=even to 3=typical to 5=swinging)
Comments:

6. Irritability: (1=pleasant to 3=typical to 5=cranky)
Comments:

7. Checking out: Type (fixation, staring into space, other-explain)
Frequency/Duration
Comments:

8. Flexibility v. Rigidity: (1=rolls with things to 3=typical to 5=must get own way)
Comments:

9. Self-Injurious behavior:Type (bite/pinch/other) Severity (1=light to 5=severe)Duration (1=several seconds/can distract to 5=several minutes cannot distract) Antecedent(if known)
Comments:

10. Food Diary:What Amount New? Reaction (if any)

We'll see how well this works and how well we can keep it up. Monster is on Day 2 of no gluten and so far so good. He has been very particular (and vocal) about what he wants to do and a bit whiny. I keep telling myself that as his behavior gets a bit grumpier, that's a good sign that the gluten was affecting him and now it is working it's working its way out of his system.

So out goes Gluten

2009-06-13T23:09:00.000-07:00

A few years ago, Right before Monster was 4, we decided to try a gluten free/casein free diet*. From my reading it states that it may take up to a year before all the gluten is out and to see results. Monster had all the signs-inexplicable rashes, rosaitia, red ears, an almost addiction to Milk (he was drinking about 48 oz of cow's milk a day), no speech, hyperactivity, etc. etc. etc. It was pretty bad from every perspective.

First, finding alternatives for dairy-yogurt was his main source of protein along with the milk-milk, pudding, cheese. Finding alternatives for gluten-cereal, bread, fish sticks, playdough. Getting his grandmothers on board enough to follow through. :shudders: To this day, Monster won't touch any form of "fake" milk. He went totally to water and nothing else. We saw a nutritionist to help us identify what we could do to help with protein and fat (side note: after spending my entire adult life cutting fat out of my diet, it was very weird to look for ways to add it into Monster's).

Second, I was in the midst of a huge case at work. I was easily putting in 80+ hours a week while dealing (i.e. fighting) with the school district (that year we started the IEP process in December and finished it in June, when we signed with reservations).

Third, his behavior tanked big time (explanation below). He was biting someone nearly every day, with me being the main target. I looked like and abused woman, with bite marks up and down my neck and shoulders. I often wondered if anyone at work noticed.

We made it about 5 months when one day he got some casein. Ok, I admit, I gave it to him. For some reason, it didn't strike me until after he ate it that buttered flavored popcorn would have butter in it. Casein is a milk protein, and is found in butter. The reaction was immediate-his ears got red, his eyes got glassy and he "checked out", meaning he was shut inside himself-we stopped existing, as did the world we live in. The final kicker was when he literally started bouncing off the walls. For those who haven't had the pleasure of seeing this, picture a small bundle of energy-about 3 feet tall, running full speed with arms stretched in front if it, until the arms come into contact with a wall. In a nearly fluid motion, the arms, acting like shock absorbers, flex at the elbow, then push back off the wall while the body pivots and runs full speed at the opposing wall. This went on for about 5 minutes, and only stopped because we picked him up and started throwing him (literally tossing him through the air) onto the opened futon. The entire time, Monster was giggling maniacally.

So we knew that casein had a huge effect on him. However, when he snuck (aka grandma gave it to him) a piece of pizza crust, no effect. So we cut out casein and allowed gluten back in.

We were able to trace a similar reaction back to artificial dyes (you know those things labeled "Dye No.") and cut those out (f'ed up side note, did you know that marshmellows have blue dye in them to make them white? WTF is up with that?).

Recently, we started to notice another inexplicable rash, with reddened ears, so on and so forth. We have been keeping track and found that some soy products were causing problems (not sure if it is a specific ingredient or cross contamination) and today we had a full fledged reaction to some pita chips. These chips had pretty much nothing in them but sea salt, enriched wheat four and some vegetable oil (they were an organic product). So, we've decided to pull gluten entirely, again.

Sigh. Since his main dinners are pizza (no cheese) and pasta, this should be fun.

Wish us luck!

**************

GF/CF Diets

There are a lot of good resources about GF/CF diets (good website http://gfcf-diet.talkaboutcuringautism.org/index.htm) and autism. I'm not sure I completely understand this whole thing, but since I learn best by trying to teach others (even if they are just in my own mind) here's what I think I know. Research shows that autistic individuals have a lot of gastrointestinal (GI) issues and a large percentage suffer from intestinal distress-including inflammation. It is hypothosized that either an auto-immune response, or some other cause, prevents these people from being able to break down the gluten and casein proteins. In addition, the chemicals that act like gates to seal off the gut are not present (or present in insufficient amounts) allowing these proteins to pass from the gut into the blood stream. These proteins then attach (or react, again, I'm not clear on this) with the neuro-receptors in the brain that receive opioids (like heroine). In essence, if I understand it correctly, these people get strung out on milk and wheat, and they become addicted to it.

Thus, when removing gluten and casein (and I've read soy acts the same way, but I haven't seen that as widely discussed as gluten and casein), the person goes through a withdrawal. This is why it is suggested that this is done slowly. Of course, not really understanding everything and wanting to "cure" Monster, we completely cut him off from all casein and gluten cold turkey. His behavior was atrocious! He was completely out of control for several months.

If one is interested, there are several good references I would recommend. First, for those with a biology/medical background (or the truly geeky among us), I highly reccomend "Changing the Course of Autism" (http://books.google.com/books?id=BP86uPB3bi8C&printsec=frontcover&dq=changing+the+course+of+autism&lr=). I'm also reading "Children with Starving Brains" which seems to be a bit easier to understand. I've heard great things about Jenny McCarthy's new book "Healing and Preventing Autism", but I haven't read it yet (it's next).

These types of diets do not "cure" people with autism, in my opinion. What they do is treat the physiological aspect of autism (which mainstream medicine is just starting to recognize).

Bye-Bye Bay Area???

2009-06-12T15:12:00.000-07:00

I recently received a job offer from the Rhode Island firm. A very nice offer-not slam dunk, but nothing to sneeze at. While thinking it through, I contacted a place closer to home who was a definite maybe, and they turned out to be a definite maybe in a few months. Since this gig ends in 3 short weeks, we can't really afford to wait a few months.

So with one last card to play, it looks like Rhode Island or bust for the Steel clan. Not that this offer is a consolation prize by any stretch. It's actually fairly awesome and a dream come true in many aspects. I even love the location and it seems like the school system is more conducive to Monster's needs. The job is a dream. The co-workers quirky and fun. The work extremely interesting and awesome. In another world, there would be no question, this would be it.

And yet, it pains my heart to have to leave California again. Having moved away once, I was able to gain a true appreciation of the quirky state I live in. By nature, I'm a fighter. Seeing what my state is going through, I want to fight for it. I want to fight to make this state what it once was-to deliver on the promise on what it can be. It feels cowardly, to some extent, to bail when the times are so tough. As much as we fight our school, I have a sense of accomplishment here-I'm known and know people. I've grown close to amazing group of women (and men ;)) who are all fighting with me-my sisters in arms. I've learned so much about what I'm made of, about what I can do and about what my son is capable of. I've learned to not accept any limitation, neither for myself nor for Monster.

The thought of starting over, yet again, is terrifying. I'm not sure what Mr. thinks, honestly. He is close to native in this area and I remember how he withered when last he tried to transplant. Family, mine and his, are close and my mother's health is quite bad. She won't like our moving at all.

Then again, I like food and roof over my head. I feel ungrateful for not being happier about the opportunity. No, that's not right. It's more like I feel guilty for being happy about it. I wonder if I'm strong enough to pull this off again. Last time, I was too naive to understand how different it would be across the country. Now I know better and have more challenges.

Of course, now, I have more tricks up my sleeve and know how very much I can survive.

So Rhode Island, look out. The Steel clan may be invading!

The Need for Speed

2009-06-08T21:19:00.000-07:00

Mr and I have what may be construed as an odd approach to Monster. We believe that to an autistic brain, this world is a terrifying place. Monster's senses are under a constant assault. Either the sights and sounds overwhelm him or he cannot sense where his body is. Until recently, rarely did he feel comfortable in his body or in this world. Unlike neural typical (AKA "normal") kids, he could not exercise any measure of control over his own life. To some extent he could not understand, to a greater extent he could not express his wishes, fears, anxieties or joys.

Because he has so little control over his life, a life that has been filled with doctor's appointments, evaluations, classes and therapies, Mr. and I decided to give him as much control as we can. Whenever we can, we allow him to choose whether nor not to take medication when he feels poorly. We ask him if he wishes to go to the doctor when he feels ill. He gets to decide what we do on our free days, who he sleeps with (Mr. or me), what's for his dinner (within his diet) and which movies to rent or watch. One other freedom we give him is the decision of when to go to school.

Many times, on Monday mostly, he has a bit of a meltdown about going to school. We require that he goes to school to say hi to teacher. If he still wishes to leave, we will say goodbye and come home. In general, he gets to school and asks to stay. Before this morning, he has only chosen to leave once. And that day was a horrific first day of summer school in a new place with an unprepared teacher; leaving was a good choice! This morning, he didn't want to go to school. In the car, he said "go home". At school he said "go home" and when it came time to say hi to teacher, he said "hi" and "bye". And away we went home.

I have no idea why, Mr. thinks Monster is suffering Spring Fever-he's tired of school.

Instead of school, the boys went go-carting, Monster's newest love.

Here they are at 6 flags over the weekend. Mr. is telling Monster "All Done" and Monster is saying, "That way, dad"

Go, Go Speed Racer!

I think something is working

2009-06-04T14:59:00.000-07:00

Monster had been incredibly more talkative lately. Mr. and I are keeping a very detailed food diary (Monster's teachers are filling it in for us from school) and have started a daily behavior diary. Mainly keeping track of any meltdowns, pains, problems, and bathroom schedule (:rolls eyes:). I've got that itch in the back of my head getting stronger. I really feel like we are on the right road, at least for some things. After his bath (yea! we got him back in the tub), he pointed at the water and said "get the ball".

Now, some would say I'm a pushover for reaching over and getting the ball, but he rarely ever has spontaneous speech and I don't think I've ever heard him use a pronoun without prompting.

So something is working, I'm just not sure what. I'm so annoyed that I'm trapped by my finances. I wish I could afford the testing we need to show what areas Monster needs supplementation and what areas he has too much of whatever. I'm mostly flying blind and terrified of making things worse.

Between what my mom's going through (she has cancer, it sucks when an anti-depressant becomes optional due to finances) and the fact that autism testing is not covered, I think out health care system really sucks.

The Good, the Bad and the Scary

2009-06-01T22:21:00.000-07:00

I went on another interview last week, this time across the country. While on the plane, I decided to not bring fluffy, relaxing reading but rather Jepson's book "Changing the Course of Autism". From what I can tell, this book really details all of the studies that have been done regarding treating autism not just as a neurological condition, but as a disease that can result (or cause?) issues with the gastrointestinal, immune and neurological systems. To my laywoman's eyes, it appeared to be rather comprehensive (Dr. Jepson has a child on the spectrum) review, but ("Dammit Jim, I'm a metallurgist, not a biochemist", as Bones would say)I got very little of what he said.

To put it as succinctly as I can, some types of autism either is the result or cause of metabolic issues that result not just in what we view as autism (social issues, lack of eye contact, sensory processing problems) but also in tummy problems, immune system deficiencies and poor nutrition. I agree with this idea, which is why we've started Monster on supplements and dietary changes, I just wish I understood it more. I feel like I'm back in school again (heck, I was taking notes while reading the book). It did impress upon me the importance of some of the things we are doing and is a good guide for what we can and cannot do on our own (without a DAN! Doctor).

Onto the this blog's title...

THE GOOD

My being out of town is always tough on Monster. He misses me, which throws off his schedule somewhat, followed by being pretty upset with me for leaving. This time wasn't really any different, but the impact was much milder than I've seen in the past. And this time he was also battling an ear infection.

Mr. and Monster went to 6 flags on Saturday. Mr stated that Monster did very well, and even rode some of the child rides. On Sunday, we decided to go back again (we have season passes) since the weather was so nice. In the past, going to 6 Flags was a reminder to me of what I didn't have. A child who would/could ride things that I always dreamed of riding with my child. A child who was prone to attacking other children when he felt threatened or crowded (a guarantee at these places).

But not this time. Because Mr. and Monster rode some rides on Saturday, I decided to find out what accommodations 6 Flags made for special needs kids. To my utter delight, they give you a pass that allows you to enter through the exit, thereby reducing one's wait (and the likelihood of a meltdown)--just go to the guess services inside the park and tell them you have a child with autism, you can also bring in food if he/she is on a special diet, just tell the security folks at the gate.

Since Monster rarely actually goes on rides his first time seeing them upclose, this was a great way for him to get comfortable with the rides.

He had a blast riding the go carts (see below) the train, the spinning balloons (which got me a bit sick) among other things. He even rode a small roller coaster.

THE BAD

Success always has its price with our kids. The price we paid on Sunday was Monster's latest trick, holding his breath, followed by a screaming fit. Poor baby was so very tired. The breath holding bit is terrifying. He use to have sleep apnea and memories nights staring blindly at the ceiling counting his breaths are still vivid.

Mr. let Monster use his portable DVD player a bit too much while I was gone (a necessary tool so Mr. could get some time to do other things). His DVD player is like an addiction we have to break all over again whenever we try to reduce how much he uses it. Currently, Monster must have at least one bag of DVDs (about 10-15) with him at all times. He can't play them in the car (usually he isn't allowed his dvd player in the car), but he likes to organize them and read the back covers.

THE SCARY

We gave him his bath, and forced a hair washing (the only way his hair gets cleaned anymore). Mr. said he did ok by the end of his bath. However, tonight when we mentioned bathtime, Monster's face got red (as it does when he has dairy or is over heated), he started crying hysterically. To try and calm him down, I got into his bath and asked him to join me. Oy, you would have thought I was sitting in a vat of acid and was trying to push him under. He was hysterical. On the plus side, his language was doing very well. I clearly heard him tell me to get out of the bathtub and put my shirt on. So now he is not only afraid of baths/showers, but he is scared for us to bathe/shower. I'm not sure where this came from, or how to break him of it. Epson salts are very important for both the relaxing for bedtime but also for the transdermal absorption of sulfate to help detox and correct sulfate deficiencies.

All in all, though, his brief regression into his own head seems to be over. As I wrote in the blog, it does serve as a great reminder to how far he's come.

.

Grab the kleenex

2009-05-31T10:56:00.000-07:00

I know this is making the rounds on the internet, but it really is powerful to watch.

There's so many of us out there.

Keep fighting, sisters.

Mood: Exhausted Cynicism

2009-05-26T21:47:00.000-07:00

I know I started this blog to keep track of Monster's behavior, but it seems to be more a therapy tool for me than for him. Ahh, Steel being self-centered as usual ;)

***Warning: Extreme self-pity ahead, read at own risk. Likely side-effects: one way ticket to downer's ville***

Today was a very tough and mentally grueling day. Monster's ear infection seems to be going ok, he fell asleep fairly easily last night and slept fairly well. He woke up a wee bit early (6 am), but he also fell asleep a wee bit earlier (around 9).

The day started out well enough; I was exhausted but I don't actually remember the last time I didn't feel that way. Exhaustion seems to be norm, not the exception. Poor me. I went to bed at a decent time, but spent way too much time imagining the perfect post, the perfect blog entry, the entry that would change the world. In a way, I went to sleep on a note of exhausted optimism. I woke with the same feeling. It's sad, when that's the best you feel all day.

Mr. called me on my way to a meeting (for which I thought I was prepared but for the wrong thing) to tell me about the upcoming CA court decision about Gay marriage and a happy-happy story involving a horse named Autism Awareness (http://sports.espn.go.com/sports/horse/triplecrown08/news/story?id=3284238). Both made me smile. The last real smile of the day.

By the time I sat down to see what my great state had done about the fate of Prop 8, it was later in the day. My state again let me down. The court pulled some fucked up mixed message decision, legalizing discrimination doesn't rise to the level of "major revision" to our State Constitution, but it's ok to have a few thousand couples live against that same constitution. This leaves what many view as the most liberal state lagging the likes of Iowa in the realm of equality. Gay marraige doesn't really touch my life in but the most cursory way. My in-laws have no use for a judge to tell them they are a family. My marraige, though not religous in anyway, is deemed acceptable, even if we live our life throwing the "tradition" of marraige on its head with Mr. giving up his career to stay home and raise Monster and me going out to earn the capital needed to do so. For me, as a woman, it makes me wonder what's next. How far does "traditional" go in the hearts and minds of my fellow Californians? As the mother of a disabled child, it is almost a physical blow. If Californians find that a loving home is harmful to children because the parents share a gender, what are they going to think of a man who may lash out when his senses overcome his reason? It sounds disjointed, I'm sure, but very real to me. Both situations draw a line in the sand as to how accepting people will be to differences. And my family is anything but typical.

The horse story is nice though.

The day was rounded out with a meeting with the school district. I know the District feels like they are making good progress. But to me, it seems like we are saying the same things over and over again. Perhaps we need to in order for the message to get out, but the glacial pace of change, when juxtoposed with the lightening speed of childhood, is frustrating and terrifying. I realize that this is the case with all pioneers; our struggles do not benefit us but those who come down the trail we have blazed. I know I've benefited from the brave women who came before me and I shouldn't chafe at giving back by blazing the next trail. But I'm a selfish bitch. I resent the time I spend on things that won't benefit me or mine. Tonight I do, anyway.

On the Monster front, things took a bad turn today. We aren't sure of exactly what happened, but when Mr. picked him up from school, Monster was red cheeked with a nasty rash. He still had it by the time I came home from work, which means it must have been something awful. Things are consistent with him getting into dairy/casein. He slipped away from us today, back to that world in which only he lives. Logically, I know two steps forward, one step back. Emotionally, it's like watching him slip into a coma. He left me. He left all of us, today. His speech therapist said it was a 180 from where he usually is. It's a sickening reminder that the clock is ticking for him. We are running out of time to pull him through the window (as Jenny McCarthy would say); the window got smaller.

Sure, I know, logically, that he has an ear infection; he's been pumped up with dyes the past few days. Whatever he ate or came in contact with at school was just enough to send him over. That's how delicate the balance is. A painful reminder that things are more precarious than I want to admit. That I can't control his environment to the extent I want and he can't assist us or even tell us when those who are suppose to protect him fail in their duty. I want to blame the teacher, the aides, but I know they do the best they can and these things happen. Truly, I know that. Moving forward (that's for Joyce), all we can do is close the loophole and do our best to prevent it from happening again.

Still, it's a punch in the gut to see him this way. When I get past this funk, when I can close off the emotions, I'll be able to objectively use this as a measure of how far he's come. All I have to do is push the panic into that dark closet in my head and bar the door.

But the horse story was nice.

ChARM and Ear Infections

2009-05-25T15:20:00.000-07:00

Those are actually two separate topics, but it looks interesting put together, doesn't it?

So, Monster has an ear infection. Doc had a very tough time finding anything, but he did see some puss in Monster's ear (ewwwww). Last night Monster had a major, screaming-meamy fit (Sorry you had to listen to that, Jim). I guess the little dude's ear was really hurting. By the time we got some tylenol down his throat, he litteraly fell asleep mid-wail. Luckily, he slept very soundly all night. He was very protective about his ear and didn't want the doctor to come near him. I don't know if the fill in pediatrician was just really cool or if he was trained to deal with autistic children, but he pretty much did everything right, which isn't that common for mainstream practices. Perhaps it is the incidence rate in the bay area, perhaps it was because he was a young doctor (heck, I didn't think he was old enough to be out of high school-when did I get so freaking old?), but he asked if he could touch Monster's head, was fast and got away from Monster as soon as possible in a nice way.

Something else intereting was he actually gave us the option to use anti-biotics or not. we have the Rx for it, but he said anti-biotics would only reduce the illness by about 1 day and suggested that since Monster wasn't presenting a fever or other symptoms (just the pain in the ear) that we waig until Wed/Thursday before trying anti-biotics. Since we've been working on the bio-med treatment stuff for Monster's autism, I was very pleased with how he explained the whole matter to us and let us make the final decision. We have chosen to wait to see how things go; regardless if one believes/doesn't believe in the effect of candida overgrowth on people with autism, anti-biotics can mess with one's stomach and I don't relish dealing with a puking/runny monster who also has pain in his ear. We aren't going to torture the poor baby, but if he can kick this without it severely impacting his life (meaning it doesn't really get that much worse) without anti-biotics, we feel it is worth a try. Trick is gettting Monster to take the tylenol/ibuprofin enough to keep the pain under control. So far, so good. Dyes are going to take their usual toll on his behavior, but in our experience, that's easier to deal with than the tummy problems that result for anti-biotics (not to mention Mr. is allergric and as the person who will be giving Monster the meds, the one most likely to be spit up on if Monster is being onery).

Now onto the ChARM portion of the title. Someone posted about an online tool to track bio-med treatments on one of the yahoo groups to which I belong. I have the paper products (composition book, spiral notebook, etc) to keep track of stuff, but I admit, I'm more comfortable having things stored online somewhere where I can't lose it. I've registered there (http://www.charmtracker.com) but haven't started using it. It seems to me, from their website, that someone will be looking at the data the families put in. That's cool with me. Maybe someone can actually get a good handle on this aspect of autism.

I realize that some people think that this aspect of autism is nothing more than schmarmy con-persons taking advantage of desperate people. I'm sure there are those out there. However, to me, I know enough people (in real life, not just on the internet) who have seen some success. Our children are still autistic, but the autism seems to ease off a bit, or perhaps it's more appropriate to say the symptoms are lessoned. As a scientist (or at least a former one in that galaxy far, far, away) I want to do controled experimentation where I can test my hypotheses from different perspectives and compare them to a control group. That's not going to happen. So we do the best we can.

And this leads me to one of my biggest dilemnas and pet peeves. "Curing" autism. You see, to me, autism isn't like cancer, a disease that needs to be erradicated. To me, autism is a description of symptoms/behaviors. When one reads about autism and what it means, you can read about "concrete thinkers", "single minded focus", "near perfect memory (in preferred areas)" in addition to missed social cues and difficulty speaking. So what does "curing" autism really mean? I, personally, don't want to "cure" Monster's autism, I want to eliminate those aspects that separate him from the world-the sensory integration issues that make this world a continual assault on his senses, to reduce his anxiety in delaing with a place that moves too fast, is too bright/loud, to help him communicate his feelings/needs/thoughts. I don't want to change those thoughts. Maybe I would feel differently if my child was higher functioning or had asperger's syndrome.

So what is a "cure"? To me, a "cure" is something that is going allow his physical system to function appropriately-his mouth can form the words it needs to speak, his hands should be able to touch slimy things, his ears should be able to hear the words of others through the static, his eyes are not distracted by background. I don't want to change his sense of humor, his charming smile, his joy while swinging and flipping upside.

It is heartening that so many people are getting on board with autism-meaning they are researching, talking and asking about it. But as with any "Cause celeb" the picture being painted is fairly 1-dimensional. Autism is an epidemic and we need to find a cure. The reality of autism is actually 5 or more dimensions (if that is possible). Yes, these kids have serious challenges (sensory integration, communication, attention) but they have incredible talents. It seems like their biggest "symptom" is not being able to fit into a pre-determined, one-size-fits-all social-education system. They don't color within the lines. so to speak. I wonder if that's their biggest problems, that they don't fit in.

I am curious, for those who read this blog (if any), what do you see as a "cure" for autism? All opinions are welcome. It takes a whole hell of a lot to piss me off and even more to actually offend me. I may be an arrogant, conceited bitch sometimes, but I do admit that my opinons are not the final say in anything (just don't tell Mr, ok?).

What is a "cure"?

Monster at gymnastics

Additions to the current Treatment plan

2009-05-23T01:01:00.000-07:00

I started this blog almost a week ago with the purpose of discussing Monster's treatment. This week has been both exciting and costly. Mr. went to a nutrition talk and came back with a renewed interest in addressing Monster's diet. So in addition to what we had been doing-Casein free, dye free, mag/calcium supplements, digestive enzymes, we also removed all artificial colors/preservatives/flavors (or "anything we couldn't pronounce or recognize") and added fish oil and a multivitamin to the mix.

Is it working? who knows. His language continues to be good. He is singing often now and talking to himself if not us. He rode some rides at 6 flags and got over his cold pretty quickly these week.

We are also going to start keeping a food journal. A big problem with Monster's eating is he doesn't eat a meal, per se, but rather eats almost continually. I attribute it to his perpetual motion and lack of any complex proteins in his diet (he's a vegetarian by his choice, not mine).

Of course now Mr. wants to try to cut out corn (yikes!) and soy (double yikes!). That leaves us with Rice or Coconut Milk yogurt which is twice as expensive than the soy stuff he currently eats and makes me concerned that he will stop eating again (what he did when we went casein/gluten free).

Oh the joys! We are also working on getting an appointment with a DAN! doctor, but how we are going to afford that, I don't know. It's $300/hr for either the doctor or nutritionist (at least initially) and I don't even want to think about the tests we would have to pay out of pocket (and these pockets are lighter and lighter with the looming job loss).

We'll figure something out. We have no choice. How can we let a silly little 'ole thing like money get in the way of helping Monster? Long term, if we can get things under control, is Monster can be independant (maybe) one day. And that's the best chance for him long term.

I hope what we're doing helps, even as the cost scares me.

4 more weeks

2009-05-22T20:54:00.000-07:00

I have four more weeks and I lose my job. I'm quite terrified as I have not found a replacement yet. A lot of interviews, which is nice, but no one coming through with an offer. It seems like the best chance is across the country. A daunting prospect, to say the least, but also a tempting one. Sort of a brand new, clean start, in a way. But way too far from family. I'm it for money coming into the house. The only other revenue stream is the state of California (respite, IHSS) and they aren't very reliable right now. We expect to lose what little support they provide soon enough. We're just glad that Monster is on Medi-cal for health insurance (disability) and Mr. is covered under IHSS (as Monster's aide). The only one who won't be covered is me, but I'm also the only one who doesn't take Rx meds everyday.

On a happier note, Monster and Mr. Steel went to 6 flags today and Monster rode a few rides, one of them by himself (and he did that twice, according to the Mr.). Tomorrow is a sensory friendly film at AMC. Night at the Museum 2, we'll see how long Monster lasts.

Swimming

2009-05-22T10:48:00.001-07:00

Nothing really to say today, but I was looking through some videos and thought I would share a cool one of the Monster swimming.

The Boy is Growing Up

2009-05-20T21:16:00.000-07:00

Well, as time marches on for all of us. Just as wrinkles, I mean laugh lines, are forming around my eyes and mouth, Monster is growing and changing as well. Tonight, he pointed to his mouth and said "tooth". I think his first tooth is loose.

Now for most parents, this is a time of joy and nostalgia. Their baby is growing up. Somewhere, I'm sure I feel that as well. But the overwhelming feeling I have is panic and fear. Panic that he's going to freak out, fear that he's going to regress as he attempts to absorb a new change within his body; yet something else that becomes out of his control. It's possible that I'm just over-reacting. I'm prone to that, I know. I'm constantly on the look out for the next trauma, the next stumbling block, the next unexpected, overwhelming occurrence that can send him back into himself.

Which is the greatest fear of us all. We spent so long looking at this beautiful, charming little creature live within his own little world. We were spectators, the audience watching a performance spoken in another language, missing the joke, not being able to read the subtitles. Then, slowly, bit by bit, we learned the language. Not fluent enough to get the joke, but enough to be able to anticipate what's next in the plot. Some of us stop here, having to learn to speak their language, to watch the performance.

But some of us, some very fortunate blessed us, are invited into the performance. We get the joke.

And sometimes the performance bleeds out into our world. He steps off that stage and into the audience. Not only do we get the joke, but he gets our jokes. This can happen all of a sudden, or so I've read elsewhere. For Monster, it was more gradual. A series of brief, tentative forays off that stage and into the audience. Maybe a word here, or a phrase there, but nothing fluid, not at first. His visitations in this world became longer and longer, his retreats back into his shorter and shorter, until he decided, one day for whatever reason, to move here. Into our world.

Like many who leave a world that is comfortable and familiar, he still visits that other place in his head, especially when this world is too hard, too confusing, too uncomfortable. And each time he leaves us, the panic sets in. The fear that it is actually our world that is the vacation house, that his permanent residence is in that other place, the comfortable place in his head.

And so, with this natural, normal progression of his development, this sign that he is slowly leaving childhood behind-just a first step down the road to adulthood, and a minor meaningless one at that-I worry, I panic.

So often, in the past year or so, my worry may be proven unfounded. He continually astounds and surprises me with his abilities to cope (which I swear are better than my own, truth be told). I hope this is one of those cases.

My baby is growing up. I hope I can survive it.

California Special Elections

2009-05-20T00:12:00.000-07:00

I have no idea what the future holds, but in a rare move of solidarity, the voters of my state rejected all budget measures deemed "necessary" by our guvonator and passed the one that limits legislative salaries.

So we called Arnie's bluff, now let's see what the legislature does in response. Times are going to get much worse in the Golden State before things get better. Those who can least afford it will end up paying the price, long term, including our children. With me losing my job soon, any cuts in services are going to have an even bigger impact on Monster. How could we afford to cover what we currently pay for his services, food, supplements? How can we afford not to?

It's gonna get worse, before it gets better, I hope to the gods it gets better soon.

Croupy kid

2009-05-19T00:12:00.000-07:00

Well, he's coming down with something. The barking continues and seems a little worse.

Well, damn. At least I got the decongestant in early enough so he is sleeping much better. Unfortunately, the dyes are going to hurt his behavior in school. And he was doing so well since he started back (he was homeschooled over the fall).

He's being mainstreamed 3 times a week with mixed success; this won't help his anxiety any or his focus in the general ed class, poor baby.

My Barking Boy of Steel

2009-05-18T16:23:00.000-07:00

Well, we had another bad night, but for different reasons. First off, we went to grandma's for dinner which means we get to choose between following the regular bedtime routine, and being up way, way late (reducing the amount of sleep) or skipping all those pesky relaxation parts, but having a decent shot at a good night's sleep. Second off, he was having breathing issues which woudln't allow him to stay asleep.

I chose bed time option B in the hopes that short term struggle will provide the best long term gain. Sort of like quitting smoking cold turkey rather than tapering down.

Since we were at my mothers-in-law's house, he didn't get to play on the internet, hang from teh trapeze (did I mention we have a trapeze in the living room?) jump on his trampoline or play his DVDs. He also didn't get to eat what he wanted, but rather what little he could/would eat. He was so over tired and over stimulated that he couldn't calm down at all. He needed new shirt, that one didn't feel right, he needed a different pillow (or rather, just lay on top of mom), he had to spin or clap during all the Lion King songs, he had to watch Lion King in the mirror, rather than on the TV itself, he wanted to watch the light pattern on the wall/ceiling.

I, of course, can't give in to many of these-the clothes part is fine, as is laying on top of me (except for the pesky problem of breathing with a 60 lb weight on my chest). else he gets farther out of control. It's a fine line between using stems to self-regulate and using stems to self-stimulate. The staring into the mirror, spinning in his swing and clapping/jumping (if one can jump while sitting down) will just amp him up further.

We manage to make it to the scene Monster always stops at (Pumba yelling "She's going to eat me") and head over to the other room. Here he can't get comfortable, or calm down. Tossing, turning, snuggle up to Mom, push mom away, run toes down mom's leg (Note to self: Trim Monster's toenails) Eventually, Whale song begins. Sigh.

Whale song is a series of vocalizations that he does for a variety for reasons, auditory sensory input, keeping himself awake, torturing his mother. High pitched, loud and grating to *my* senses. He knows this and will routinely do this when he thinks I'm being mean and not letting him get his way. Sometimes, like last night, he does it because he just needs more sensory input than the quiet, dark room can provide. Usually, I can sing to him in place of his whale song, but he only wanted me to sing songs he could sing with me, another way for him to keep himself awake.

We wrestled, while I tried not to lose my mind at his sounds. Hubbie came down once when an inadvertant elbow poked hit me somewhere sensitive. I tried to keep him from scraping his toe nails down my bare legs. It was a rough 30-40 minutes, but we both survived relatively uninjured and he fell asleep. Unfortunately, the Boy of Steel didn't have a full quiet night of restorative sleep. Instead, he started barking.

For those who don't know, barking is that sound a child makes when he/she coughs when she/he has croup. So far, Monster doesn't seem to have croup, but something is draining into his throat (sorry, TMI) interupting his breathing and causing him to bark from time to time. His barking would wake him from the sound sleep into that quasi-sleep state, where he wants to snuggle Mommy or Daddy. Eventually we gave him decongestant and he was able to fall into a somewhat deep sleep.

Now the reason we don't give him decongestant sooner is the only one he will take has the dreaded dyes in them. If we force another type on him, he wakes completely up, having gotten just enough sleep to prevent him from falling asleep again for several, long hours. If we can avoid them, we will. Dyes can cause him to develop a rash, tummy problems and lack of focus. Then again, so can sleep deprivation. Our own rock/hard place decision.

As usual, he woke up at the crack of the freaking dawn (I hate long summer days). He was very cute in his own snuggly/cranky way. Eventually, he got dressed and ready for school. The only two bad times were when I wouldn't let him bring all his DVDs to school (He has 3 Whole Foods bags of about 10-15 DVDs each) and when he wanted to ride in Daddy's truck, not Mommy's car. I think he was happy to be going to school, even if it was to just get away from me!

Hopefully everything will be more on track tonight. I already know Tuesday and Wednesday nights are going to be tough-I have a meeting at school and Hubbie is going to a nutrition class. Like a recovering addict, we take one day at a time.

Woo-freaking-hoo!

Bad Night for the Boy of Steel

2009-05-17T00:11:00.000-07:00

Monster didn't fall asleep until nearly 11:00, when bedtime is usually 9:00.

I wasn't there. I was playing around here, on twitter and at a message board I use to live at and Mikey thought he would give me a break by putting the monster down. over 2 hours later, they both fell collapsed from exhaustion. With me, he generally falls asleep about 10 minutes after we turn off Lion King (at least since we started the new night time regime, see below). I'm also sure hubbie didn't do the night time routine quite right (and why would he, we aren't interchangeable). Who knows which is worse, my not being there or his not doing things the same way.

Part of me wants to feel guilty. The other part of me really enjoyed the Guillermo Del Torro movie I watched (Devil's Backbone for those interested).

Such is the way most of the time. Relaxation comes at a price for all of us. I can wrap up these nights in self-important rhetoric-he needs to learn to be more flexible (uh, hello, he's autistic), it's an opportunity for him to learn to handle insecurity, blah, blah, blah. I can wrap these nights up in self-righteous entitlement. To be honest, comparatively speaking, this isn't anything compared to the way things were. No one was bitten, no one is bruised or bleeding. There was a time when bedtime was a full contact sport that took 2-3 hours on a bad night. Now monster tries to drive me insane with his whale song. Hubbie is deaf to the whale song torture, frustrates the little one horribly.

Doesn't matter, in the end. Sometimes I need to recharge my batteries and some times I'm just a self-centered Twit (or is that Tweet?). Sometimes I want to show Hubbie how hard it is to deal with Monster's bedtime routine, and have to laugh at my own martyrdom when hubbie falls asleep before monster.

And sometimes, like tonight, it's all of the above.

I know three blog entries in one night is likely excessive (or at least, narcissistic), and I doubt I'll be as prolific in the future.

Boy of Steel (AKA the Monster) Bedtime Routine (this week, anyway).

First, Warm bath with 2 cups of epson salts and about 1-2 tablespoons of lavender oil. I let Zach tell me what words to write on the wall (bathtub crayons, wonderful toy) and which toys we are going to play with).

Second, vigorous drying with warm towel. I let Monster decide which clothes to put on when.

Third, swinging during the sneak peak portion of the night's movie-which has been Lion King lately.

Fourth, after sneak peaks, it's time to climb into the TV room bed-just a twin mattress on the floor.

Fifth-lavender oil massage, starting at the feet. Deep pressure up and down first legs, then arms. Gently pulling on his legs/arms. He really likes his toes done.

Sixth, joint compressions, ankles/knees/hips, wrists/elbows/shoulders

Seventh, brushing legs/arms

Eight (if I get this far) lavender oil massage of his back, followed by brushing.

Nine, watch movie until Monster decides he's done and then go to bed.

Total time is about an 60-90 minutes. So far, it's working well (6/7 nights successful, just this night was bad)

The Current Treatment Strategy

2009-05-16T19:55:00.000-07:00

Since I started this blog to keep track of what we are doing for monster's autism, the place to start should be what we have done to date. Maybe when I get around to dealing with the rest, I'll even blog about the beginning of the journey. Then again, maybe not.

Currently, we are looking into what is called bio-medical treatment. There seems to be as many theories as to the cause of autism as there are children who are diagnosed with it. Some say their brains are wired wrong; some say it is an autoimmune response triggered by vaccines; some say it is a response to our environment; or genetic or all of the above, or none of the above. These may be the next leap of human evolution or not (as rockmom so patiently explained to me).

My son can't wait for the experts to figure out the why part, which means we don't have a clear idea of what to do next. So rather than listen to, and follow, what the "experts" say, my husband and I have decided to take a cost/benefit approach to treatments.

Meaning, we look investigate any and all treatments out there in the world (both real, imaginary and internet), evaluate what the risks are to Monster (physically, mentally), the cost to us as a family (monetary, time, effort) compared to what the supposed treatment claims. We get a fair amount of flack for this approach, but we've never really cared that much about that; we are use to walking our own obscure, illogical, odd path.

To this end, we have tried gluten free/casein free diets (and are currently casein free), dye free diets (and still are dye free), hyperbaric oxygen therapy (may work, but at over $300 a pop, out of our price range), a variety of behavior strategies (RDI, floortime, ABA, all of which we still use), Sensory diet, massage and our current approach, bio medical.

The bio-medical approach is based on the idea that autism is the result (in whole or part) of our children's inability to breakdown and handle their physical environment (i.e. toxins, foods, etc). That their immune system is run amok because of some sort of trauma (such as vaccines) or deficiency. I'm making a muck of the explanation. Basically, autism is either an immune response or an allergic response or a response to nutritional lack or all of the above.

We dipped our toe into this lake when we went gluten/casein free. Monster was drinking 48-64 oz of milk at about 3 years of age. We knew he should be drinking less, but that constituted the bulk of where he got his calories and we were hesitant to restrict/reduce it (some would call us permissive parents in this, oh well). He also would get rashes at odd times, that weren't related to anything. I wish I could say we carefully researched this and applied our considerable intellect (ha!) when coming to this decision, but the reality was a family we knew tried this and their son started talking. At this point, monster had ZERO speech and we were desperate. So to Whole Paycheck (i.e Whole Foods) we went and out came the casein and gluten. His diet shrunk immensely. His behavior got worse, but we plodded through. Suddenly, one day, I didn't realize that buttered popcorn would have butter in it, and gave some to monster. He flipped out. The rash came back full force and he literally bounced off the wall. A similar reaction did not happen when he stole some bread one day, so we allowed gluten back and kept dairy out.

Now we are dipping the whole foot in. We can't afford to do the whole DAN! doctor thing, so we have applied our cost/benefit analysis and came up with the following:

A digestive enzyme (he has tummy problems)
Epson salt baths (detoxifying and soothing)
Lavender oil massage (soothing)
Calcium/Mg supplement
Omega 3 fish oil supplement.

We are also going to see a pediatric gastero-something or other and an allergist.

Who knows where this is going to end, but so far, the evidence is cautiously not pessimistic.

Inaugural Entry

2009-05-16T19:32:00.000-07:00

My first blog.

Mostly.

Who knows how it will go.

So I guess I should start by introducing myself to the faceless imaginary people I suppose will be reading this. I'm a mother to a spectrum child. In other words, I have a son with autism. Often times I refer to him as "the monster", not because of his autism, but because he can be a real character. A charming, cute, manipulative little pain in the ass.

Once upon a time in a galaxy far, far away, I would have started with "I'm an engineer" or "I'm a consultant" but that time has passed. In an alternative universe, I was an ambitious rat who was going to rule the world, ala Pinky, but I was forced off that treadmill by what some call the new epidemic. I'm the tragic heroine of my own Lifetime TV movie of the week (and a bad one at that). Currently, I have no identity. I have no ambition beyond continuing breathing and waking up in the morning.

Cheerful, aren't I? I want to be that strong, exemplar figure to whom people look for wisdom and inspiration.

Uh-uh. Ain't gonna happen. That takes way too much energy and drive. I have little of either. I seem to have left both back on that treadmill I got pushed off of. Instead, I've turned into that whiny, pathetic drama queen who wants to do nothing more than sit on my ever spreading ass, forever lamenting my lot in life and waiting for someone to hand me the solution to all of my problems, or at least the money I can use to drown them.

Ok, that's not me either. I guess the real me is somewhere in between the TV heroine and the societal leper.

And with an introduction like that, who wouldn't want to follow my blog?

I'm just a mom of a child who has a condition for which we don't know the cause, the course, the cure or the treatment. This blog is mostly to keep track of our (as in my and my husband's) current answer to each of those. If someone is interested, cool. If not, well, that's ok too.

The title of the blog is in reference to two things. (1) that Autism use to be blamed on "Refridgerator mom's", women who were unable to connect with their children, thus dooming the children to a life of Rainman, which describes not a single mom I know with a child on the spectrum; and (2) as a nod to what I use to do for a living, make steel (as in melt down scrap in a big furnace and pour it into molds).

So, Hi there! Nice to meet you. Welcome to the exciting, nonstop, never ending ride of a Furnace Mom's Life.

A video, just because