Oh my sweet heavens. If the weather over the past week is any indication of what summer’s going to be like here, I’m never leaving my house. I know I really shouldn’t complain because A) last summer was so mild which made the end stages of my pregnancy bearable & B) at least we don’t live in New Orleans, but come ON. I can handle the heat. I don’t love it, but I can handle it. It’s the humidity I cannot abide. My asthma is worse in humidity & I feel like I’m being smothered in a wet wool blanket that weighs 50 pounds. It literally makes me want to die. So, please, God. Turn it down.
Today was also Henry’s IEP. I truly cannot tell you how much I dislike these meetings. Yes, it’s nice to hear that he’s made some progress, but it’s inevitably not enough. And I know that a lot of it is due to what I haven’t done/am not doing with him. But I literally cannot do anything more than what I’m already doing for these 4 kids. I have 2 things I’m doing for myself- going to therapy & trying to walk/exercise. Oh, and napping when I can so I don’t fall asleep while driving. Everything else is taking kids to activities, therapies, school and participating with school activities as I’m able. Already, Steven is resentful of the time spent on Henry’s needs and has no qualms with telling me that he’s sick of it & wants Henry out of the family. So, let’s spend more time giving Henry more attention & hope Steven doesn’t just smother him in his sleep. Sheesh.
So, the basic thrust of the meeting is that pretty much every aspect of Henry’s development falls in the 2.5-3 year old range. For a 6, nearly 7, year old. And I have to just sit there smiling & nodding, as if it doesn’t upset the hell out of me. I HATE this. Especially when I know other kids with Down Syndrome who are already leaps & bounds ahead of him. Who are potty trained. Who are able to participate in games & family outing instead of having to figure out how to do something without him because he simply cannot be a part of it without causing complete chaos. Kids who are part of school programs & church programs & play Wii with their siblings. Who won’t start screaming or throwing stuff or hitting people or simply wander off on their own agenda. I know he’ll get there, I really do. It’s just that right now is hard. It’s difficult to sit and hear what he’s NOT doing (though it is great to hear what he IS doing) and feel the guilt building and building and building.
They did give him this test about whether or not it’s likely that he has Asperger’s Syndrome (because they can’t diagnose it, just use this test to rate him from “very unlikely” to “very likely”. He turned out in the middle of “likely”. So THAT’S awesome. His receptive language is at about a 2.5 year level but his expressive language is at about 5.5 years. That was a really bright spot. He does a fantastic job matching, labeling and sorting, but can’t yet use that knowledge functionally. For example, he recognizes and says all his numbers 1-10, but if you tell him to give you 2 crayons, he doesn’t know what that means.
Oh, and let me dispel a misconception about people with Down Syndrome. Most people would say that people with DS are accommodating and laid-back and even pliant. Those people need to spend a day with Henry. Cuz dude is so very, very NOT. The main problem they had in their testing & assessments of him was that if Henry wasn’t in the mood to cooperate, he wouldn’t. Period. Nothing would change his mind and if you tried to push it, he’d push right back through throwing the testing materials or physically assaulting the tester. At this point, Henry is completely unable to understand that he is not the center of the universe. He knows what he wants and if he doesn’t get it he will wear you down until you are a nerve-exposed nub. If he wants to watch Little Bear and Steven happens to want to sing his video game music at the same time, Henry will scream for Steven to shut up (“STOP IT!!” “QUIET!!” “GO AWAY!”) until he gets what he wants. If we’re in the car, he expects that everyone wants to listen to what he wants and NO ONE BETTER TALK OVER MICKEY MOUSE, CONSARN IT. Unless you want to spend 2 hours in the car listening to him shout, “MUSIC! MUSIC! MUSIC!” until you rip off your turn signal stalk and stab it into your ear; you’d better put his music on. It’s a horrifying, repetitive circle of doom.
Anyway. We’re set up for next year. He’ll be moving into the Life Skills 2 class with 1st-5th graders. There are 3 girls with Down Syndrome and a boy who I can’t remember much about and should be 2 new kids in there as well. I think it’s going to be great for him to have kids that are more advanced modeling behavior for him. I have very high hopes for next year. Let’s just hope that Henry decides to cooperate.
Major change of topic. I got this fun app for my iPhone for Glee. You can record yourself karaoking the Glee songs and upload them. I played with it tonight and recorded 3 songs. Unfortunately, my headphone microphone is AWFUL and I sound like I’m in a box underwater calling on an old-fashioned long-distance line. But it’s fun to play and upload your songs and then hear stuff from other people all over the world. You can then “gleek” people and when you get a certain number of “gleeks”, you can get free song downloads. I really want Bad Romance, but I need 100 gleeks before I can do it. If you want to hear my awful recordings, here are the links. Alone is here, Somebody to Love is here and You Keep Me Hanging On is here. If you like them, click on the yellow star to give me a gleek!Tweet