This being Dar’s final week of his second kindergarten, each day is “themed” – Monday was bad hair/hat day, Tuesday was dress-alike day, today is Pajama Day. I don’t mind dressing Dar with themes, when I think of it, though he doesn’t seem to notice or care. This is how I dressed him today. He got many compliments.
We started him in summer swim classes at the Berkeley YMCA and they’re going horribly. Last summer he did the same class, uh, swimmingly. It may be that Dar vibes well with that instructor, and now that that man has moved on, Dar hasn’t clicked with the new people. I’m feeling embarrassed because for the first 15 minutes of our 30-minute class, Dar has been refusing to get in the water – this from a kid who two months ago happily played in every hotel pool we visited from Washington DC to Savannah GA. Then he gets used to it, then a few minutes pass, then he objects as I try to get him out of the pool. Fun.
We’ve been working for months to assure that Dar would have coverage from our ABA provider during summer mornings. Until yesterday, three days before his start of summer, we didn’t have 100% confirmation that this would actually happen. Quickest possible explanation: Dar qualifies for at least 25 hours a week of in-home, one-on-one therapy, but we typically use only ten of those hours weekly, because after the (exhausting?) five-hour school day we have found that pushing him for any more than two more hours is a bridge too far. When summer rolls around we have to decide between summer school, summer camp, and ABA for 5 hours a day. The problem is that everyone wants a commitment from us months in advance without assuring us that it will actually happen. We just kinda closed our eyes and said no to summer school hoping/praying that our ABA provider would come through, and lo and behold, yesterday she calls me and says “The person will start on Monday.” Then an hour later she calls and says “I know we talked about when the person would start and we weren’t sure, and it turns out she’s going to start on Tuesday.” I’m about to say, “Uh, who wasn’t sure?” but I leave it. We owe that agency, because we’re taking a trip around the time of the Fourth of July, and they were fine starting a person one week only to have them sub for large parts of the following two weeks.
Dar has had the same 1-on-1 aide at school for two years now, but I’d never been in a meeting with her until Monday. Well, I’ve seen her almost every day, when I drop off and/or pick up Dar. She helps another kid in the afternoon and has consequently never been able to attend any of the IEP meetings. Instead, her boss comes, but her boss barely sees Dar during a normal school week. A month ago, we learned that her third-party agency (contracted through the BUSD) doesn’t cover kids after kindergarten (!) so we knew we wouldn’t be getting this aide, nor her boss, in first grade. Knowing I wouldn’t be seeing this particular aide after this Friday, I asked to meet with her, just in case she wanted to personally share any wisdom obtained after two years with my son.
She’s a great person, but didn’t offer much I didn’t know. She wondered how potty-training is going at home; badly, I reported back. She said he’s gotten much better at just about everything: playing with others, paying attention for long periods, counting to ten, certain vocabulary, not hitting himself. I asked about being taken out of class, and that’s still happening, but she felt the frequency had been significantly reduced. They can’t even say how much they love his “talker,” a.k.a. the iPad with the Proloquo2Go app, and they encourage me to take him to the next level, with the app’s new “trial user program” that includes 24 buttons on his main page instead of the 15 I’m currently using. Hmmm…okay, probably.
Also attending the Monday meeting was Dar’s school’s special-needs coordinator, who was there to follow up on the previous week’s IEP. My first question was why last week’s IEP cut off after only 90 minutes. She said that was because it wasn’t a proper IEP, because his annual IEP is the proper one, and that’s in September. I was like, I thought my wife and I could call a “proper” IEP any time, and besides we’ve had years of IEP meetings at various months on the calendar – most of them before this woman got her current job – and they all lasted at least two-and-a-half hours, usually three. She was like, well, here I am now, any questions?
The truth is that my main question, never quite relevant to school employees, is: if Dar is doing so well at school, why don’t we see it at home?
Cherished reader, no doubt the next step is obvious to you: at home we need to test on him the things they say he does in school. And yes, we will. Of course we also have to fight off our desire to be easy on him, and his desire not to work. What will he be working on with us, then? Something like these lines from the latest report:
“Dar is able to use his AAC device to label school activities, places, and items. He is now working in a trial user program to include conversational turns during peer and adult interactions (e.g. my turn, your turn, I like that!, that’s fun!, and all done).”
“When presented with a photograph, Dar is able to label the 2-word phrase verbally with minimal assistance. He continued to struggle with clarity of sounds and syllables, but is independent for the approximations for the following phrases: open book, pour water, squeeze dough, my turn, wipe board, drink water, shake bell, and push soap.”
“Dar will copy a vertical and horizontal line. He is beginning to work on ‘X.’ He struggles with cross, as he will draw only one of the lines (horizontal or vertical) instead of both.”
“Dar is participating in agility/follow-the-leader games for 4 minute periods. Dar will march, side-step, walk backwards, stand on one foot with handheld assistance, turn in a circle or reach up and down with verbal, visual, or tactile cues, jump forward 22 inches to colored dots, run and kick a ball on the grass, climb up and down the large risers with emphasis on working the left foot in 6/10 trials.”
“When given the prompt of ‘let’s count’ Dar able to independently count up 5 clearly 6-9 is unclear but he is able to vocalize 10.”
“Dar is able to match upper case and lower case [of all 26 letters] in a field of two.”
Okay, then, let’s do this like Brutus cause we always knew this.