Alphabet soup

Wherein we must get input from the TSS and the BSC as well as the MD before we meet with the LEA about the IEP to make sure we get FAPE in an LRE for our K-I-D.


That’s after you hit school years.

Before that, for those with early diagnosis, you have to travel to the SLP or the PhD to distinguish the NT from the PDD or the ASD, or perhaps the less awkward ADD. Then you have to decide between ABA and DAN and RDI and GFCF.

Confused yet?

Pathetic. Isn’t it hard enough for parents to bring themselves to the conclusion there might be something not quite right with Johnny or Susie without having to venture into a land of foreign language, too? Makes you want PECS.

Years ago, before I had these delightful choices in my own life, I would attend court hearings for people involved in such things, and as far as I was concerned, it sounded like an evening in the Soviet Union. People coming into parents’ homes, dictating their child care, telling them how to communicate with the children, hours upon hours spent at medical and therapeutic facilities; it’s no wonder that in these situations one parent often has the full-time job of managing the special care/education.

Once our household was “diagnosed,” we had Occupational Therapy (OT) one hour per week per child, and one hour per week of speech therapy (ST) and Early Intervention (EI) from the Intermediate Unit (IU5) three hours a week for Little Miss. Within a year or so, they moved into wraparound services; then our previously fairly private house was invaded by Therapeutic Staff Support (TSS) women from the minute school was out until dinnertime, though usually we had to hold dinner because they were late. (The one actually suggested she used to eat dinner and go on vacations with her previous family, as if it was her entitlement. We convinced her that would change.) This went on till last summer. We’re temporarily done.

It IS overwhelming. There is so much to learn. Websites like Autismlink give a good basic grounding in what you need to know. The site is a labor of love of Cindy Waeltermann, whose hands-on learning from her own sons’ diagnosis has turned into a massive outreach helping others, all over the country. She took things step by step, found out what was available, what she needed to know, and then went after it. I did, when it was our turn. So can you.

Take small bites. It’s a big buffet. You’ll have plenty of time to try all the different flavors, and various ones will appeal to you as your tastes/needs change.

Meantime, check these sites for translation of your new alphabet vocabulary. Print out what you need and carry it like a Frommer’s or Baedeker’s. Don’t be shy about using it at meetings; that’s what it’s for. It’ll answer your FAQ, PDQ.

Acronym Definition Primer
Acronyms and Special Education
Autism FAQ
Autism Acronym list of Macomb-St.Clair County


Great Expectations–not the Dickens kind

As school ramps up again, post-holidays, I consider my dreams for my youngest daughter.

I’ve raised five girls already, all wonderful individuals with relevant priorities and heads on straight. They work, they raise children, they contribute.

And then there’s this one. The A-word hovers over her. I debate with my other daughter who’s studying special ed the appropriateness of the label. The label gets her a medical card to pay for wrap services, speech, and physical therapy, as well as expensive, intensive services at school that she could never get struggling along on her own. I want the label. I want her to be the best she can be.

She has come miles and miles on this journey out of her brain into our world. When she was a baby, she would stare at the ceiling fan for hours. She didn’t talk. She didn’t interact. As she got older, she would leave the sensory buffet of the dinner table and spin around the kitchen for half an hour till everything made sense again. She couldn’t listen to music; then she moved into listening, but that was all she could do–no dancing, no singing. Too much. The school lunchroom?? Have you ever BEEN in a school lunchroom? Total overload of the brain, people talking, fans, dishes clanking…forget it. She didn’t do letters, she didn’t understand language or the purpose of language or even have a sense of time.

They started her in the autistic support classroom right off, no attempt to mainstream. I was devastated. I mean, sure she wasn’t like everyone else, but she could try, right? You’d let her try? Innocent until proven guilty, or something? Ah, that pesky label.

But it got better. She could have art, music, gym, with the regular class, for socialization. Then with a gentle prod, the school agreed to attempt more, and she started first grade in a 50-50 mode, half autistic support, half regular. The first couple six weeks were fine, but the work started getting harder and she fell behind. It broke my heart. I had hoped she’d do better, because at home we saw flashes of understanding as her therapist worked with her. Her conversation was improving, she was developing empathy, she finally noticed when we left, and reacted to it–this was good, wasn’t it? We could expect great things?

By the end of second grade, she was doing her math and reading in AS. Everything else in the regular class. I felt like we’d lost ground, but now that I look back at what she GOT instead of what I thought she’d LOST, it’s clear that she went from a class with a ratio of 20 kids to one teacher to a class where it was 2 kids per adult. She was essentially getting tutored with some very special education and teachers who understood. She learned to read. We continued that trend, pushing her to read billboards and store signs and words on the TV, everything we could. We ended therapy. She was emotionally a normal child for her age–at last.

Now it’s third grade and a little harder. She still does reading and math with her AS teachers, but she does science and social studies in regular class. She loves space. (maybe it’s that planet she’s from. 🙂 ) Some things she does very well and some she still wavers, almost always on the point of language. Next year– well. We know fourth grade is bad. We won’t worry about that yet. She’s a year behind in language development, and we’ll concentrate on cleaning that up between now and September.

But we keep pushing. We try to keep her up to grade level when we can, even when the teachers would let her slide by with less. We still have those great expectations. They may not be realized in full for another year, or two, or five. But she’s moved so far, we just know she’ll outgrow that label. She doesn’t have to be president of the United States. She can be a wonderful individual with relevant priorities and her head on straight.

Well, maybe off-kilter a little–but that’s okay. It’s interesting.

And if you’ll excuse me, I need to go sing songs from Wicked along with the stereo and the child. Oh, and yes, we’ll dance, too. Some dreams come true a little sooner than others.