So much has happened in the past several months with Jake. I'm not sure where to start. And I have huge issues with sharing much about him online, so I'm always tortured about what to post here. I've been feeling ambivalent about continuing this blog, so I apologize for how scattered it often is.
The iPad. We're coming up on a year of having it. It's been a huge boon for Jake in so many ways. We use Pictello to create social stories for everything from hanging up the towels in the bathroom to not shredding paper, and to share experiences with school. For example, we went to an awesome new indoor water park and I snapped some photos with my iPhone. Thanks to Photo Stream, they were on the iPad immediately, and I made up a little book in Pictello in less than five minutes. Emailed the code to his para, and he got to share about the trip at school. He also likes to explore the photos on his own. He will navigate through his Photo Stream to look at things that interest him, too, and to request things (I've taken photos for his communication app with the iPhone or iPad, so they're all there in the stream). He uses Proloquo2Go when prompted, if he is dysregulated and having a hard time telling us what's going on.
YouTube has also been a powerful tool. Jake loves drums, so I found some videos of someone playing a djembe - the clips get right into the rhythm, right into the playing, no talking. He goes back to the clips over and over again to watch. Then plays his djembe. It's really neat.
Those have been the most powerful parts of the iPad for him. And yes, he uses it to watch his favorite videos. A lot. I let him self-regulate this, and it's one of very few leisure activities for him. I've heard people criticize the iPad for being just a glorified babysitter, but you know what? I think most people with a challenging kid on the spectrum would agree that anything that occupies their child that isn't destructive is a welcome respite from the 24/7 care we give. I'm okay with him using it to watch videos.
We're working on branching him out into different apps. He has used many of them with prompting and in structured sessions with me, but not on his own. So, eventually.
His difficult behaviors - dumping stuff (including garbage) into piles, flushing inappropriate things, and shredding paper - have abated somewhat. We had our school team's autism consultant come to the house several times to help us put more structure into his world. She helped with social stories about not touching other people's things, and we gave him a "shred zone" where the behavior was okay. We're using a visual schedule and we've organized his toys and pared them down. The next step is working on keeping the room clean and helping him learn to put his toys away after he's done playing. Interestingly, the shred zone led to an almost complete disappearance of the shredding after about a month. Just on its own. So that's pretty neat.
We've still had mysterious, out-of-the-blue meltdowns - inconsolable crying, inappropriate laughing. We saw a neurologist in January and he recommended a video EEG. He'll be admitted to the pediatric floor in the afternoon, we'll somehow glue electrodes to his scalp, then wrap it all up in gauze and he'll magically keep all that on for 24 hours (the wires go to a chest pack). We'll sleep there overnight and be done the next afternoon. It sounds like a nightmare. It was supposed to be a few weeks ago but I rescheduled because I couldn't handle the preparations and I didn't want him in the hospital during flu season. So that will happen in March. He also wants to do a brain MRI which I still have to call to schedule. That will be sedated, and we've done sedation a couple times and it's gone very well. The Dartmouth Pain Free Clinic is amazing with this and it's always been a smooth ride to sleep for Jake. Waking up is harder, and we'll need to reserve a hotel room for after we leave. Last time he stripped naked in the car, threw CapriSuns at Matt's head while he was driving, and tried to claw his sister's face in the backseat. He was *so* out of it. So being able to go to a hotel instead of driving two hours home will be key.
I'll update about school next year soon. We're in the process of his transition to middle school.
