Remember the first time?

I'm in the process of starting up a Jewish "Sunday" school for kids with ASD. This will be a partnership between my Synagogue, Beth Emeth, and a great ASD therapy center, Puzzle Pieces. More on this another time.

While meeting with the Rabbi and Director of Puzzle Pieces, the Director related the story about the first time(s) she met J. She said "The first time I met J he was the most charming and sweetest little boy you could imagine. The second time he was stark naked in the corner throwing his shoes at me." 

I assured both of them that J does that less often now.

Can't argue with that

J and S were sitting on (opposite ends of ) the couch watching TV. Out of no where, J gets up, walks over to S and punches him in the head.

After dealing with the situation, we ask J why he did it. He said he wanted to watch TV alone, and if he punched S, then S wouldn't like him anymore and would not want to watch TV with him. And it worked.

The logic is sound, but I can't help but wonder if there is an easier way to achieve the same result.

Best day of camp, ever!

Overall, J had a solid first week at the new camp. Some hitting, he broke a mug (sort of by accident), but he did most of the activites and generally enjoyed it.

But today, was something special. I picked him up at the end of the day and he ran to me with a big hug, beaming from ear to ear telling me how it was a perfect day- PERFECT. The counselor filled in the details. No hitting, bad language, anger or aggression of any sort. He participated in every activity. Played ball with other kids at recess. And even are some of his lunch (I think combined for the whole school year, he ate less than the equivalent of 1 sandwich).

What a great way to end the week!

New Camp

J starts a new camp this week - a social skills camp from kids with ASD.

J really enjoyed the last camp, but he spent the entire day sitting with his 1-1 worker, colouring. And even then, he ended up hitting kids or counselors more days than not. It was a great camp, but it really highlighted that he needs more direct teaching of social skills - so this new camp is perfect.

It's funny how I can tell withing 10 seconds of meeting a counselors, teacher, babysitter... if they'll work for J. It's the tone of voice, energy level, how they say hello to him. Can't pin point it, but it's so clear to me if someone "gets" aspergers or not. These people clearly do!

Of course, J tested them a bit today, there was a bit of hitting and swearing - but it as par for the course for them. They handled it perfectly, and despite the behaviour, they got him to participate in just about every activity.

I think this camp will work out well.

This was a doozy

This weekend we decided to modify J's medication. He'd been on adderall for a while, but it's completely killed what little appetite he had before. He's gained almost no weight for the past 2 years. We had heard good things about strattera and decided to try him on that. For the past 6 week's he's been on both, and doing really well. The only hard parts of the day were the 15 minutes right after we gave it to him, and the 30 minutes, 11 hours later, when the adderall wears off. After those 30 minutes he's perfect. Our thinking was that the strattera (which is a 24 hour effectiveness) was working and the adderall was messing with his system. So we decided it was time to get rid of the adderall.

Saturday went OK, he was certainly less focused, couldn't sit still, but was very manageable. We thought out plan was working. We again didn't give him the adderall on Sunday, and that's when the fun started. He woke up OK, even slept in a bit longer than usual. The first 30-45 minutes after waking up were fine, then the fun began. 

I don't even remember what set it off, but he went completely out of control for 3 hours straight - despite our best efforts to calm him down. He destroyed his room. Tried to throw everything from his room over the banister down to the basement (successfully getting a lot down). Broke his door (more broke then it was before, from previous meltdowns). Tore everything off his walls. Stripped his bed. Emptied his closet. 

It wasn't even near lunch time yet.

He's back on adderall now. We'll try again in a few months*.

*Strattera build up in your system, meaning the longer you're on it, the better it works - often it takes up to 6 months to reach optimal effectiveness.

Is this "blame the parent for autism" month?

For the second time in 2 weeks, we've had someone blame us for J's behaviour.

Today, J was playing at the splash pad at our local park. He slipped and banged his face on the cement - banged him self up pretty badly - his cheek is all scraped and has a huge bruise. In typical J style, he reacted badly to the injury and threw some sand at a mother. Not a good choice of behaviour, and he knows it, but understandable for any 7 year old, especially one with Aspergers.

Well, the mother freaks, grabs him by the arm and says is he ever does that again she's going to spank him on his bum. Luckily I wan't there, because I don't know why I would have done. But my wife was, and after apologizing for the sand, my wife tells this mother that J's on the spectrum. The lady goes on a rant about how her kid has autism too (no idea if that's true), and that we need to get him into ABA because behaviour like that is not acceptable, and it's our job to prevent it.

While nothing she said was technically incorrect, I find it shocking that anyone familiar with children on the spectrum would accost a parent like that. Anyone parenting a child with autism has been in my wife's shoes, having to apologize for some behaviour. You'd think a little sympathy would be in order, not threatening to hit our kid, then blaming the parents.

Needless to say, my wife is a bit shaken up today. It still amazes us how much intolerance of ASD there is out there.

A great week at a great camp

Well, the first week went really well.

He says he's enjoying camp, which is something he's never said before - ever. The first few days had a few outbursts, nothing major, all for obvious reasons, like losing his favourite hat (which we luckily found); but the camp handled it perfectly - as a camp open to special needs kids should.

Our challenge now will be to get J actually participating. You see, he's spent most of the first week sitting in a gazebo, colouring with his 1-1 worker. Not that I mind him colouring, but I do want him to do some socializing.

After what happened at his old camp, I don't think I've seen his confidence so low in a very long time. It's amazing to see his confidence get back up there.

Next week, once he's settled, we'll need to start encouraging more participation. But for now, we're so proud of our little guy for having such a great week!

What a difference a day makes

After the night we had yesterday, we were due for a turn around, and what a turn around it was.

Let me be clear, my children are, individually, the most delicious children in the world. But when you have a night when  both of their deliciousness is out in full bloom, it's something special.

From the moment we all got home from camp/work, until they finally got into bed, it was pure joy - then it got better from there.

Each was in their room, then J said he wanted to kiss S goodnight, so he went into S's room and they gave each other a great hug and goodnight kiss. Then, S wanted to give J a kiss, and on it went wishing each other "sweet dream", "sleep tight", "I love you J", "I love you S" on and one. Of course, I did nothing to stop it and get them to bed. Finally, after a dozen or so visits, they both settled and went right to sleep.

I need to make sure I etch this one in my mind, and focus on it the next time we have a rough night.

5 total melt downs in 2.5 hours, and he's finally asleep

We haven't had an evening like this in a long time. Now I can process what has been quite a day.

Have we met? My wife and I are blessed with two wonderful boys. S, 5 and J, 7. J was diagnosed with Aspergers almost 2 years ago.

Today was J's first day at his new camp. I'll get to talking about why he's no longer at his old camp some other time - but rest assured, it has something to do with Aspergers. It was a pretty good day, J tells me there were a few hitting incidents (which the camp didn't tell me about - not sure I like that). We're currently struggling with managing J's anger. This hasn't been such a problem for most of the past academic year, but ever since May, J's been doing a lot of hitting and kicking. Sometimes out of anger, sometimes, frustration, sometimes anxiety. It's causing no end of anxiety for me - I can handle a day full out meltdowns, screaming and just about anything else. But having a skinny, but freakishly strong, 7 year old kicking people in the eye won't do.

All in all, we were reasonably happy with his first day; he actually had fun, which potentially bodes well for the rest of the summer, and he acknowledges he needs to work on the hitting. He even came up with something he can use to calm down. I found his trick fascinating, I'll have to talk to one of his many therapists about it. It boils down to using some random number generator (he suggested writing numbers in clank on the sidewalk, and throwing a marble to land on one number) to pick a number between 1 and 30, and then he hits and kicks the air that many times. Certainly better than hitting and kicking people that many times. But he stressed that he can't pick the number - it's not an indication of how mad he is. The number has to be out of his control - that, is his mind, is the key to this working.

Psychologically, I think that's fascinating. When he feels out of control, he needs something out of his control to help calm him down. I'm sure there's a deeper meaning in there, but I'm not up to digging into it right now.

Two of his melt downs happened just before, and at a therapy sessions, with a wonderful therapist. I feel bad saying it, but I'm glad she got to see it. Because for the first 6 months of us going there, he's always been the most cooperative boy. It's hard to provide therapy when you never see the behaviours we're trying to work on. When he was starting to calm down she said something to J about how she's here to help him figure out how to manage his feelings. J responded "No one can help me." That just about broke my heart. He really feels like this is something he needs to solve himself, and in a way he's right. But J , if you read this some day please know that I love you with all my heart and will always to everything in my power to help you and make your life easier.

So much more to talk about, but it will have to wait for another day.