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.

Whew.

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

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12 thoughts on “Alphabet soup

  1. Thanks for the links. I SO need them. Actually, I think I just need any bit of advice and help I can get. Every time I get off the phone after talking about my son, be it the doctors, the schools, the therapists, I’m more overwhelmed and completely confused.

  2. LOL – it is so true – it’s an entirely new language to learn. I just sat in on a meeting like that today and could barely keep up! Thanks for the chuckle, coupled with the sound advice and information.

  3. I’m going to be passing these links on to my cousin’s wife, thanks. Their oldest boy is being tested for Autism Spectrum disorders now. I can’t say I’m surprised, since these things run in families. My cousin, although never officially diagnosed with anything, showed all the classic symptoms as a child. He tried to set me on fire once when I was a toddler. Back in those days, he was just “hyper-active” and was given drugs.

    My little sister, who was diagnosed with ADHD officially, since the whole system was a bit more refined by then, and her husband are thinking about children now. (Ok, to be technical, her husband told her that if he doesn’t get a boy in the first year they’re married, he’s leaving her. Yeah, he’s a real winner.) Hopefully, she won’t have to go through all this when they do have children.

  4. Isn’t it amazing how these acronyms become such a part of our life, we tend to almost use them out loud, not just outline? We just had the tri-enn IEP, getting APE, OT, RSP, SS (social skills: did I make that acronym up, or is it real?) and talking about the OCD and anxiety. Rhymes, acronyms…all part of the world of being a special-needs parent! Enjoyed your blog, I’ll be back!

  5. Yeah, I can totally relate to all these acronyms and trying to figure out what they are. As the parent of a fairly newly diagnosed little guy, I’ve already experienced quite a few of these.

    1in150.wordpress.com

  6. Pingback: If you can’t stand the heat… « What We Need

  7. Ha! I recently posted on the use of acronyms in signatures and one creative Mom’s acronym (JACK) so she could include her NT kid…

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