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.
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.