Simon graduated from his Early Intervention program today. Early Intervention typically on goes up until age 3 and Simon’s birthday is next month; today was their yearly graduation ceremony for all the kids who age out during the year. Simon had his last autism class on Tuesday and will only be having one more speech session and one more OT session, since the EI organization has Summer Break the last two weeks of August.
It was very bittersweet at his last class on Tuesday. He has made such progress in the 3-1/2 months that he’s been there that it was hard to say goodbye to his teachers. He had been on the waiting list for nearly 6 months before a spot opened up and I really, really wish we could have gotten him in sooner. His teachers all loved him and were sad to see him go. And, on a bit of a selfish note, I had really come to enjoy the 2 hours twice a week I got to spend in the cool, dark observation room, reading and listening to music. I’m gonna miss that.
So, today was Graduation – cue trumpets – Ta-Da! And I can say it was pretty much a disaster. Adam wasn’t able to go because of work obligations, so he stayed at home with George. (Have I mentioned lately how incredibly awesome it is to have a spouse who telecommutes? I couldn’t make through all this without him around.) Eleanor was begging to go, so about an hour before the start time, I loaded her and Simon up and we got going. Normally, it takes me around 45 mins to get there, sometimes as little as 30, depending on the traffic. We only left half an hour later than normal, so I was expecting the drive to be the same. WRONG! It was so horribly backed up, it took us an hour to get there and I was completely frazzled. I had a bitch of a time finding a parking spot (seriously, people, can you make sure you’re actually in the lines of your space? On the line does not count!)
We got there just after everything started and one of Simon’s teachers saw us and gave us a program. There were probably close to 200 people there, so it was a bit overwhelming for me (I don’t do well in crowds typically). I’m not sure what I was expecting the graduation to consist of, but I thought it would at least involve a reading of the names of the kids graduating. No, it was just a pep rally kind of thing; speeches, songs, etc. Simon was okay for the first little bit, but then he started getting antsy and wanting to run. After the whole ceremony thing, they had an area set up with outdoor games, and food, and inside there was an art table and face painting, a kind of fair, I guess. Eleanor was very excited, but Simon was starting to lose it. While walking to the fair, Simon broke away from me and took off running across the park towards the road, which resulted in me chasing him down while Eleanor stood by herself in a crowd of strange people. I grabbed him, collected Eleanor, and we continued on our way to the fair. Then Simon took off again, this time heading for a stand of trees on the backside of the park. Again, I had to chase him down. Now, I’m no gazelle, people. I’m heavy, and awkward, and was running full tilt across soggy ground in flip-flops. I should charge money for providing entertainment.
I got him corralled again and, once again, we dove into the crowd of people. They had a trampoline set up and bouncing always calms Simon down, so I got him in line for it. Apparently, other parents didn’t notice that we were waiting or simply didn’t care, even with me telling Simon (loudly) that he would get to go next. I finally got him on there and he bounced for a minute then wanted off, so Eleanor had a turn. At this point, one of the family counselors caught up with me. I’ve met with her several times before, mainly dealing with my anxiety and guilt issues, but also for some problems Eleanor was having. She was after me a few months ago to meet with her on a regular basis, but I’ve been avoiding her, so, damn it, now I’m on her radar again. *sigh* Anyway, she suggested that maybe Simon would be more comfortable inside with the art room, etc. Okay, cool. We go in and he runs to his usual classroom. It was locked, but Eleanor got to peek in. We looked for the art room, but Simon had decided he had had enough and broke away again and took off out the doors into the crowd of people. Now, he’s little and really fast and can maneuver around people better than I can, so it took me a few minutes to catch up with him. Then I had to find Eleanor. At this point, I had sweat pouring off of me and Simon was quickly heading toward a meltdown, so it was time to leave. Eleanor started bitching about wanting some cake, so I had her do that quickly. Then she pouted about not getting her face painted. Then she wanted grapes. The whole time, Simon is struggling against me and crying. We start walking out and stopped briefly to say ‘thank you’ to his teachers and to talk with his SLP. Then back in the car and then home. Longest 45 minutes of my life.
It was not easy being Simon’s mom this morning.
In my last post, I was talking about George and his recent evaluation, and I mentioned that I had been at the Autism Center for three Wednesdays in a row. The first two Wednesdays were for Simon; one was a follow-up with his Developmental Pediatrician and the other was with the Communications Specialist.
His Developmental Pediatrician was very pleased with his progress since the last time she saw him in December. He’s more regulated and has some words now (2 consistently, others come and go) and about 12-15 signs. He stacked some blocks while we were there and fed a bottle to a doll (yay for pretend play!). She encouraged us to keep him in as much therapy as we can (no shit) and was very pleased to hear that he’ll be going to developmental preschool next month. She also said, (please take this with a grain of salt, these are her words not mine), that of children his age that receive intensive therapy when they’re young, that by the time they’re 8 years old, 20% wouldn’t meet the ASD criteria anymore and another 20% would be considered Very High Functioning, and that, at this point, she expects Simon to fall into that 40% somewhere. I’m not quite sure I buy into that, though, and am reserving judgement. He’s not yet 3 and a lot can change in the next few years.
His other appointment was with the Communications Specialist, whom we had never met before. She spent some time talking with us and then working with Simon. She was using an iPad and software called ProLoQuo2Go. This is communication software for people with no or limited verbal ability. I only got to see a few areas of it during our visit, so I strongly recommend you check it out for yourself if you think it might be helpful. What Dr. H had Simon doing was, she would ask him a question and show him a screen that had a big green ‘YES’ and a big red ‘No’ on it, and he would select the answer. He had some problems with that. For the second part, she had given him an iPad to play with and then she would take it from him. (side note: as obsessed as Simon is with screens and how hard transitions can be with him, he handled it surprisingly well. I was amazed, actually.) She would then show him her iPad that had 4 pictures on it: an iPad, a juice box, a cookie, and Cheetos, and she would ask him what he wanted. And, of course, he picked the iPad, so she gave that back to him. They went through several rounds of that and she noticed that he was making a choice based on location on the screen, not what the image was. For example, in the first round, the picture of the iPad was in the top left corner. Well, in the second round the iPad picture was in the bottom right, but he still picked top left even though he wanted the iPad. Make sense? So, he had some difficulty but she still thinks that he would benefit from having his own iPad with the ProLoQuo2Go software. It’s all very expensive, of course, but there is a grant fund here in Washington (Ben’s Fund) that can provide money to autism families to be used for therapy related items. Dr H helped us apply and if we get the grant, Simon will be getting his own iPad and software. I must confess, though, that I am somewhat apprehensive about giving him his own tablet. I know how much he can retreat into himself when he has access to a screen, so I worry that giving him his own may be overload for him. We’ll see how it goes, though.
Dr. H also had a couple of interesting insights. When I told her that Simon can verbally identify the letters ‘S’, ‘M’, ‘N’, and sometimes ‘O’, she just looked at me and said, “Well, yeah, he’s spelling his name.” Simon’s SLP had mentioned the same thing, too, but, to be honest, I didn’t take her seriously. Still, it’s an interesting thought. Dr. H also asked me if he was reading, which I answered with my usual “How would I know? He doesn’t talk, so how do I know if he’s reading?” She agreed that makes it difficult, but she is of the opinion that he most likely is reading, which is what his developmental pediatrician said back in December (hyperlexia).
Dr H also gave Simon a new diagnosis of Childhood Apraxia of Speech (or just Apraxia). Basically, the signals from his brain aren’t getting to his mouth correctly and it makes pronouncing certain things difficult or impossible. This is why he over enunciates his letters (“ahen” with his mouth open really wide for ‘N’) and why he’s using the word ‘ow’ to say ‘want’. Side story: We first thought ‘ow’ meant water since he was using it in conjunction with his water sign, but then in the car, he dropped his toy and starting gesturing to it and saying ‘ow’, so now we think it means ‘want’. Either way, it’s something we have to explain to people: if he’s hitting the side of his face and saying ‘ow’, he didn’t hurt his face, he just wants water. Geez, this kid. Anyway, so he’s got the Apraxia diagnosis now, too.
She offered us 10 speech session at the Autism Center which I would love to do, but the scheduling is proving very problematic. I’m working on getting him into private speech therapy and if I can pull that off then I may not need to worry about the Autism Center appointments.
It’s going to be a long month without therapy or class until he starts preschool.