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.

Tuesday, June 19, 2012

Beautiful Connections

We are back from the conference. We spent three days and nights among the disability community. It's surprising how much your focus can change in such a short span of time.

Where do I start? In hopes of not sounding too Pollyanna with my resuscitated optimism, I'll begin with the bad. It was raining when we got there. Pouring. Lightning. Melody and I are doing a version of the Atkins diet (a slightly high fasting blood sugar of mine resulted in doctors orders for a low carb summer). We'd exhausted our supply of road food and needed a meal, so we ate an overpriced Hilton restaurant salad and tried to make the best of it. Not easy. We were still hungry at meals end.

When it looked like the four of us would be trapped in the hotel room indefinitely due to storms, she complained that she wanted to go home. I kinda lost it at that point. I slammed a drawer and told everyone that I was trying my best to make sure we all had a good time, but dammit, I'm here for the conference! Maybe I should have come alone! They all got cheerier after my outburst.

We sat in the hot tub outside while the cool rain sprinkled down on us (it was really nice, refreshing, until more lightning flashed and we had to run inside). We ate the nuts I packed, and watched a movie until we fell asleep.

The rain cleared. We swam and ate less expensive food outside by the pool. We calmed down and went with the flow a little bit more. We found our groove.

Saturday afternoon while I was waiting for a session to start (something about balancing the hemispheres of the brain) a woman struck up a conversation. I thought she was a presenter because she was alone and not dressed in shorts. Turns out, she's a disability attorney, former ESE teacher, and mother of 3 kids with disabilities.

Her words, observations, suggestions and support altered my thinking in important ways. She was shocked that in Florida he's denied speech services because of his low cognitive level.

"How do they KNOW what his cognitive level is?" She was pissed. Remember, she's an attorney AND a former special ed teacher.

I told her that after listening to the last workshop on autism, I'm thinking of transferring him to a private school that will give him better communication tools. She gave me a step by step plan for keeping him in public school but in a placement that works  for him. She said it's obvious to her after a short time of being with Daniel that he's "on the spectrum."

I knew that, but I've always been hesitant to move him from a classroom where they work so hard on physical skills and into one where there are kids who have behavior issues. Daniel can't jump up and defend himself. I'm rethinking that. I don't want him to one day be able to express what he's thinking/feeling and hear that he hated school. That he felt trapped. He's thirteen, and his remaining time in school is limited.

I met a man with autism who gave a presentation that day. I'd already talked to him in the expo hall and bought one of his books. The talk was comprised of stories. He called it "Autism Across America" and he shared some of his experiences with other autistic people that he's encountered around the country.

The next day when Daniel and I were sitting by the pool in the little cabana restaurant, he sat down with us. At one point, Dan was covering his ears.

"What's wrong? Is the music bothering you?" I asked.
"It's the wind," our friend offered.
Daniel looked up, smiled and clapped as if to say, "YES! He got it! Someone who speaks my language!"

"To an autistic person the sound of eyes blinking can be painful."
I laughed.
He said, "I wasn't trying to be funny. Although, I do have several jokes I can tell."
He went on to share a few of his "adapted jokes". Some former blonde jokes with just enough details changed so that they applied to autism. Funny guy, and very smart.

When I asked him if he knew of William Stillman, a man with Aspergers who writes and lectures, he said, "There are a lot of people who do what I do. I know some of them, but I don't know all of them."
I felt stupid.

Then I said, "One of the things I learned from Stillman is to alway presume intellect."
He thought for a split second and said, "I would disagree with that. I'd have to say that I presume nothing."
Touche. Again, this man was on his intellectual toes. (Although I still maintain that presuming intellect with a non-verbal person is much better than the opposite, which we encounter all of the time).

Daniel and I weren't the only ones making friends. My sixteen year old met a teenager whose brother has Down Syndrome. We saw them in the pool together the first morning there. That afternoon, they hung out and he even convinced her to go down the slide (she's always had a fear of them). From then on, they were friends.

Saturday night we danced. Daniel wanted to sit and dance, but I was able to keep him on his feet for a few good numbers. I don't know line dances, but we swayed to Electric Slide. The other teenagers talked to him; they genuinely enjoyed having him out on the dance floor. He loved it (he might not have loved mom as dance partner, but he seemed to dig the music and other teens).

Right up until our hotel check-out there were unexpected conversations, connections and a general feeling of community. Before loading the van, I sat and talked with a woman, her disabled son and his grandmother. That brief conversation helped us both. It reminded me of how important it is to be out there making friends, finding other people who are living this life. It was good. Very good.

Wednesday, June 13, 2012

What We Love

We're kicking off summer with a trip to Orlando for the Family Cafe on Disabilities. There'll be pools and people and hopefully not a lot of rain. Cheers!