June 2013

almost as much as I hate posting! But I know I’ll want to remember this later, and my memory is crap….so….here goes.

The DT was the only therapist to recommend ESY (summer school/extended school year). I made sure that one out of three therapists was enough to get him into ESY. It took weeks for the public school to verify that they would see him, I assume because J wasn’t a PS student already. So anyway, we met his teacher Diane S, last Monday. It was kinda awkward! Tj dropped J and me off at the front door because I thought J was saying he had to go poop. We made a beeline for the restroom (where nothing happened btw). Tj and Max parked and went into the classroom where Diane assumed Max was Jack! Either she didn’t know J has DS (so she didn’t read his file 24 hours before she was going to teach him??) or Max looks like he has DS? Anyway, after that we showed up and got things moving. She seemed fine with J but a little awkward with us. I’ve since met two people who know her and recommend her, one of whom is Sara Lu. Overall it was a little awkward but fine.

So that afternoon I got a call from WDM to let me know that J wasn’t approved for therapy! I said that’s funny, we just met his teacher this morning and the school bus is coming to pick him up tomorrow morning at 7:30! She hemmed and hawed, and said that no therapist could recommend him for ESY, I told her the DT did, and that I’d already talked to Special Programs and we’d set up his IEP and gotten everything in order, so she said well, I guess that’s that then. Heh.

So Tuesday morning we were out there waiting, taking pictures, waiting. Nothing. When it was really too late to get him to school on time Tj said I should just call and find out what was going on…he had to get to work. I assumed it was just first day madness, but called. At first they couldn’t find J’s name on the transportation list, then they found it. Then they said they were having transportation issues so I could take him or just wait around for the bus. After I got us all in and buckled Tj called to say on his way out of the subdivision he saw the bus. I waited a few minutes and then just took him to school.

When we walked into school my heart sank. I saw 10 or so special needs teenagers (or thereabouts) who were walking with extremely unsteady gaits, almost all unable to communicate clearly, several were grunting. My heart broke. I know Jack has special needs. He’s 6 and you can’t have a conversation with him. You can’t ask him if he had a good day, or where his shoes are, or who his friends are. You can ask things he’s worked on (his name, age, brother and a few other things), but you can’t talk to him like you can talk to a typical 3-year-0ld. I’m not sad about that at all, that’s who Jack is. I honestly think he’ll be able to converse fine when he’s older, though I won’t be surprised if he’s hard to understand to people who don’t know him very well. But to think of my little Jack in a room with those kids just made me want to cry. He’s still got potential, he’s still moving (relatively) quickly forward, and I’m worried about other people (teachers/therapists/volunteers) giving up on him and allowing him (or encouraging him) to just go play in the corner. If we do that his learning will slow and eventually stop. We need to keep pushing him for now. Not crazy fast, not 10 hours a day of learning, but a reasonable amount for his mental age. All of that went through my head when I saw those kids. I hate that that was my first thought. But it was.

We walked down to his room and I was relieved to see that he was the one with the most ‘special needs’ in his room. The teacher had him sit at a table of around 12-15 kids and she was asking each of them their name and what they’d been up to so far that summer. They all answered both questions except Jack. Honestly I’d never seen him behave so rebelliously! He was fighting to get out of his chair, not constantly, but enough that a teacher had to stand near him. I hope that he’s old enough now to watch those kids and want to behave like them. And I hope his teachers will work with him to keep him in line. Time will tell.

I don’t think I’ve mentioned the big hoopla about going into his classroom yet. At the IEP meeting I was told that I couldn’t go check in on Jack while he was in school for fear that I would see other kids with special needs (oh the horror!!). Due to privacy issues I could only see him in his classroom if I made an appointment with his teacher while all the other kids were out of the room. I didn’t think about it at the time, but Jack can’t tell me if anything questionable is going on in his classroom. I really didn’t like that rule, not to mention that I think it’s stupid. Having special needs isn’t something I think we need to be ashamed of, but I do see that I may feel differently since J’s diagnosis is written on his face for everyone to see. We can’t hide it, and don’t see any need to, either! I talked to several people, and finally thought to post it as a question on Buddy Talk (our DS FB group). Several people agreed the rule was dumb, and one woman whose kid already goes to his school said she could go check in on him, but had to agree not to talk about the other children there. It seems like the administrators have different standards than the teachers. Guess I’ll just be discrete when I’m there.

So J came home from his first day on the bus. But it stopped at the end of the street. I told the bus driver that I’d been told they’d pull up to our driveway and she said so you want me to come to your driveway? Heck yeah I do! I bet all parents do, but we’re the lucky ones :-) So that’s what they do now. The second day they didn’t send home his bag. The third day I sent him with a ziploc bag of diapers to keep at school and they sent his bag and the ziploc bag home. Oh well, we’ll figure it out eventually.

I got a call from his teacher at the end of the second day to tell me how it was going. She said she’d had a big talk with Jack about how he needed to sit on his carpet square (which made me roll my eyes…Jack usually can’t be talked into doing something), but she said when it came time to sit he went right to his square and sat down. Hurray! She was also worried about him putting things in his mouth and waving things around. I told her those were things he often did and that we were working on getting him to stop. She started crying and told me that she’d lost her 18-mo nephew when he swallowed a ball bearing and they couldn’t get it out in time! And her cousin (don’t know what age) was hit in the head with a hose and now it’s as if she’s had a stroke! I hope Jack won’t give her a heart attack with all his shenanigans!

All in all I’m excited to see what change PS will bring about in Jack. I really hope he’s not there long, and maybe going there this early will start him on the right path.

We’re having VBS this week, so he went there today, but ESY is tue/wed/thur so he’ll go to PS those days and back to VBS Friday. Greg H is his special buddy there :-)

Potty training: About what I should expect, I guess. I just need to slow down. He seems to really get it for a few days, then it all goes to pot. I have to keep reminding myself that his learning is not linear. Some days I’m convinced he’s playing me, and then other days I’m convinced the opposite is true. Sunday I put him on the little toilet when he was still dry 1/2 an hour after his nap. I know he had to go, so I made him sit there w/o the iPad to concentrate on how to start peeing. Nothing happened so I put his diaper back on. I told him about every minute to not potty in his diaper but put it in the toilet and get some chocolate. After no more than 10 minutes he said ‘potty in diaper’ and I immediately checked his diaper and it was completely full. I was convinced in that moment that he doesn’t know how to start peeing. That he sits there with toys and when his mind is distracted he pees. I think he sometimes knows when he’s going, but might not catch it right when it starts. We’ll see how long I feel this way.