Dropping A-Bombs

The Autism label is a hot "button" for me because of everything we went through trying to get appropriate services for FMO at school. When we took him to Vanderbilt and he got his Auditory Processing Disorder diagnosis, the SLP & PhD team that evaluated him told us that many therapies used to treat symptoms of Autism would not be right for him, and likely cause him to retreat inside his "own world." Many kids with language disorders as severe as his are in very tough shape, even violent or self-injurious with such high levels of frustration. He was in excellent emotional health considering his circumstances. They said it was largely due to the approach we'd taken to that point and the strategies they recommended expanded on what we were doing.

We saw the effects of the opposite after first putting him in preschool for 3 weeks. He went from happy to anxious in that short time. We pulled him out and didn't go back until that Summer. My nephew was living with us and got expelled from Junior High. The Assistant District Supervisor handled his expulsion and recognized our last name. She said the school was disappointed FMO wasn't at the program and asked what we needed to put him back in. We requested I attend with him until he got adjusted. Still his 1:1 7 years later...

The Speech therapy he got back then and in his next school was terrible. He never got what he needed until I did it myself. Eventually we got a good school program and after multiple speech therapists we got a good one, then a good OT, now a good behavioral therapist, and after 3 years of process, he finally got an ASL teacher. Autism is a hot word for me, it is a useless basket to toss in a group of people exhibiting similar symptoms, but it doesn't help teachers and therapists and parents look deeper. We have had to do that on our own.

Almost all FMO's "non-typical" behavior can be linked to the holes in his language. Social behavior is based on language. It is easy to see how culturally different Deaf people can be. They have their own language if they are lucky to get ASL or other manual language from an early age. FMO only had some verbal and some ASL until recently. So we try to address it from that perspective. Reading, ASL, cued speech, visual supports, tactile learning approaches have all had maximum success. Anything he has worked on with OT, he's made improvement on - cursive writing, cutting with scissors, shoelace tying, touch typing, etc. He went from pre-K sight reading less than 200 words to phonics de-coding and first grade reading level just since the beginning of this school year. He is bright, it's just that learning by listening for him is like if I tried to learning trigonometry through smelling. I have had to think far outside my verbally-dominated box and find the approaches that reach him.

A friend of ours has a grown son with APD and he says he can't understand what people are saying if he looks directly at them. The eye-contact misconception. He learned to spell with refrigerator magnets, had to touch the letters. I got some to try it out and low-and-behold, that worked amazingly well. FMO went from spelling nothing correctly at the beginning of the year, to getting 50% correct independently on a 2 20-word spelling tests. That might seem like a "failing grade," but the percentage of improvement is how I measure his progress. Now he is starting to sound out words while he types.

I am not saying Autistic people are not smart or capable. On the contrary, many people with that diagnosis are highly intelligent and even gifted. I think success to a large degree can depend on the ability of helpers to find the ways to teach and reach a differently learning mind. Maybe people who have trouble with communication are in need of people to understand and help break the barriers. I have been trying, searching, working to get him anything and everything FMO needs to obtain language not just to express his needs, which he does, but to help him find his way toward sharing ideas and asking questions about the world. These are the ways Language is our Humanity. Without some complete system of communication, we are not fully socialized, and social interaction is a human need.

Each weekday we do home study plus 2 kinds of therapy. I talk and sign and cue simultaneously when I interact with both kids through the majority of the day. While other families went on vacation, I spent last summer writing the next year's curriculum, researching CA audiologists that specialize in APD, learning Cued Speech, and teaching my kids more sign language. In ten years, I have been on exactly 10 dates and seen 3 movies in the theater without my kids. For over eight years I rise early, give everything I have and some more I don't, fall down exhausted at night, only to lie and worry about what my son's future will be. I attend all his therapies with him except therapeutic horseback riding. Now the one hour I had off in the school week is gone since the neurologist said he isn't medically cleared to ride. What little freedom and independence FMO has gained is gone now, since he needs constant supervision again until we see proof his seizures are under control. He is showing evidence of night seizures, so now we are on round the clock vigilance so he doesn't choke on his vomit. Even our best days can be gut-wrenching and heart-breaking.

I don't need any recognition, sympathy, or assistance. I just hope everyone will keep FMO in their best thoughts, and understand, I am a bit broken. I do expect to hear Autism thrown around for possibly the rest of my life, in print, on Facebook, Oprah, and from every curious kid or well-meaning grandmother at the park. I don't expect a great shift in awareness in that time. It will probably take a generation or more before any real breakthroughs are made. Meanwhile, I quit reading books and articles about the kid cured through diet, or what it's like to be the mom of a kid with a disability, or inspiring stories of the young person overcoming his challenges who went to college and got a girlfriend. We are writing that story day by day.

Every moment of every day feels like precious time, sands slipping through the hourglass counting down to an impending deadline to produce A Functional Well-Adjusted Adult. Every time my "A-word button" gets pushed my stomach does a little clench. I take a breath and calmly interact for moment, and a precious moment is gone, wasted. If time could be bought, I'd rob a bank.