Leelo Flash!

Leelo Flash!

Three notable Leeloisms for today:

1) He has entered another compulsive eating phase. He can't stop eating until his belly is sticking-out-taut full. If we deny him, he has fits and sneaks around grabbing food from other peoples' plates or from what we thought were secure hiding places. It is a sensory issue, not a hunger issue. Leelo is several inches shorter than Iz yet weighs the same.

2) We have a new stimmy vocalization! This one is a real keeper--he sounds like a humpback whale getting strangled during a Tuvan throat-singing lesson. It's been an all-day thing. Given its throaty and vibratory nature, it has to be a sensory issue as well.

3) Leelo had some good, in context responses to questions today. Even though his overall language and responses are off. His phrasing is still not entirely correct, but I don't think anyone would have had problem understanding the following two exchanges:

"Leelo, who has your bread?"
"Mommy has you bread." (Is "you" closer to "my" than the usual "your"?)

"Leelo, where is your stick?" (green plastic swizzle, current favorite fidget)
"The stick fell down." (i.e.,"Even though that stick is at this moment my favorite object in the entire world, I purposefully dropped it off the side of the deck or down the stairs so as to create drama.")

Actual conversations like these, rather than echolalic exchanges, have been rare lately, and so were appreciated. Also his receptive language was very very good today; he listened a lot and did as asked--most of the time.

More good news: Supervisor M has been granted her NPA, which means that she is now an official non-public-agency, and can do the public school contracting dance! Even if we have to supplement her and by extension Therapist L, we may be able to not only keep our own after-school ABA program in place, but have it partially paid for. We will try to hammer all this out during Leelo's programming and goals IEP on 8/23.

Bad news: Leelo's kindergarten is not the ideal class I'd anticipated. It is nothing like the wonderful district preschool class I'd observed last year, and from which it was supposed to take root. It has too few aides, no visuals, no structure, and the teacher does not have any behavioral experience with this age group. According to Babysitter A, today was complete chaos. I keep telling myself and anyone who'll listen that the entire Special Ed dept. is in chaos, that this class is currently experiencing the miasma state, and that like the universe it will take on its shape shortly.

When Babysitter A first started telling me how inappropriate and underprepared the classroom environment was for my boy, my first reaction was to cry, and my second was to grab my phone to call ALSO (his former therapeutic preschool) and ask if there was still room in their kindergarten. I didn't make the call, though. I figure that there are going to be a bunch of really smart, really informed parents (including me) who will fight for the resources to make this a great class for all the kids, and to set a standard for the future. Someone get me a hanky...

While Leelo and Iz and all the other Deadwood district kids were at school, Sage's lovely friend B hosted a mimosa morning for local special needs moms. I hooked up with some people I hadn't seen in a while, and had a pleasant though brief visit with some of my other favorite people.

I mimosa'd for a while with an acquaintance, D, about how some people don't get that special needs parenting puts extra demands on a person's life. We don't require a passing around of the sympathy tip jar, and we certainly don't think of ourselves as heroic*, but we also do not like other parents giving us shit when we set boundaries on school volunteering and community involvement. (D actually had a parent tell her--while she was at a PTA meeting, which is about five steps farther than I'm willing to go--that "everybody is busy," implying that D should be willing to put in time beyond that required by her role as PTA fundraising chair.)

Anyhow. No matter how crappy Leelo's class is right now, it can only get better. Regardless, he still has a fantastic afternoon program at our house. And he's still making strides, even if for a long time they've been modest ones. And our lives are total and complete cake complete with icing and three shiny cherries. Yes, I know that.

*I frequently suspect that Karen Montague-Reyes of the comic strip Clear Blue Water has my family under surveillance.

Technorati Tags: , , , , , , , , , ,

No comments:

Post a Comment

Respectful disagreement encouraged.