Wednesday, June 27, 2012

Formal Diagnosis, and with it...decisions

We saw the developmental pediatrician at CARD (Center for Autism and Related Disorders) last week and he did a very thorough assessment of Dan. When he was five our geneticist wrote that he "fits the behaviors consistent with autism". We didn't really run with that, though. Now we have a formal autism diagnosis from a specialist in that area.

What now?

For years I've struggled with the school system over communication services for Daniel. In 2004 I attended workshops that the school SLP suggested to learn Every Move Counts, a program for kids with severe disabilities. I was on board. It's a long somewhat tedious story, but in the end, the school was not able to implement the program (the SLP who originally suggested it nixed it shortly after being the one to get me interested. Thanks.)  Every year I've had the same conversations, the same fruitless efforts to have his daily school life include hard hitting communication work.

So, now he has a diagnosis that's characterized as a language disorder. Me thinks they must step up to the plate.

Is a setting that's geared towards autism going to work for him? ABA is the gold standard. I've thought about the rewards that motivate Daniel. He doesn't like food. Praise? Sort of. Plus I've read a lot of books over the years by people with autism who are not happy with their early ABA training.

I tend to be attracted to the methods that aren't mainstream. Facilitated communication is one of them. I've been helping Daniel at home with a letter board and his ipad by supporting his arm so that he can point effectively. It's slow going, but it's working. I saw a documentary and read the book on Rapid Prompting, and I like the ideas the author presents. I don't do the paper tearing, but I present Daniel with two objects, tell him what they are, then ask him to point to the appropriate answer. Example: "This is an orange. This is a pencil. Now, show me the pencil." You get the idea. I just want to know how well he can answer correctly. I don't want to insult or bore him, though, and I've told him as much.

In August I'll meet with "The Team." Teachers, therapists, psychologist, etc. I have to be clear and sure about what I want for Daniel, and I'm not there yet. I'm using this time when both of us are off for the summer to get clear...or at least clearer.

Yesterday my daughter worked with him on identifying letters. He responds well to her because she's stricter with him than I am (she wants to be a teacher, and she's the granddaughter of a very good one. I think she has the touch.). The choice of teacher in the new year is going to be critical, but I don't know how much control I have over that.

So, I'm praying and musing and working with him to get an idea, a vision for what's possible. That's where we are right now.

Autism is a world. That's what the title of the movie says, anyway. Time to open up Daniel's world a little (or a lot) more.




3 comments:

Elizabeth said...

I wish you much courage and strength as you move forward with this "new" information. Your quest to provide better communication opportunities is so important, Carolyn! I went through many of the same things with Sophie when she was younger -- we even made a trip to Texas and saw Soma! While rapid prompting didn't turn out to be what we'd hoped for her, much was learned -- I think it's so important to do and try anything within reason and work, above all, outside of the box and the bureaucracy.

Phil Dzialo said...

Information is always of great value to us as we evaluate and explore options. Alternatives are the lifeblood of our journey and you never appear to stop looking at those options which is so highly commendable. Daniel is lucky to have such a great mom, Mom is equally fortunate. Looking forward to more tales from your journey....

stagerat said...

Don't be afraid to 'politely' kick a few educational shins (that's what shins are for, ask Dude) if you're not getting what you think you need. A lot of things in the system are only available if you ask for them. Thinking the system sideways often comes up with solutions that no one ever associated with your 'problem' before. After all 'Bureaucrat' is from the Latin, meaning: Mind in rut, fueled by paper. Ok, it really doesn't mean that, but it might as well.