It also hurts to find out that this family had been suffering a long time before making the painful decision to divorce.
Unfortunately, for a lot of families on the spectrum, you don’t have many options to turn to for help and consolation. Most families keep it all inside, not out of shame but out of the fact not too many people understand, including counselors. Unless you’ve been in the situation, you don’t understand the guilt that you deal with, on top of the stressors from having a child with a disability-and no real game plan.
If you have a child with Downs or CP, there are pretty concrete treatment plans. You see x specialist for this, you have this type of PT or OT or ST. You have a wealth of knowledge, research and options.
Autism doesn’t have that. I joke and say that autistic kids are like snowflakes-every one is different. It is true, and that’s what makes it so insidious to deal with. Add to it the fact that autism is the fastest growing disability, and there are a whole host of issues to contend with. There is a lot of gray areas in terms of treatment.
Gluten free diet or not?
ABA therapy?
Son Rise therapy?
All sorts of decisions to be made, add to it the fact that there are a whole host of what the medical community call co-morbidities. In my son’s case there are issues with chronic ear infections and chronic strep throat. He has issues with strasbismus (he was born with 2 lazy eyes which have been corrected with surgery, but one eye still drifts from time to time-especially when he is tired)He has had ear tubes put in and this summer will have a T&A. He has chronic sleep issues. As he has gotten older, he has gotten better about tooth brushing & flossing, especially when he had to have dental surgery to correct problems. In the grand scheme of things, this isn’t as bad as how some folks I know have it.
And that’s the rub. He’s too autistic to be considered normal or neurotypical, but not autistic enough for some more specialized care and treatment. For example, there is a miracle league baseball team here in town, and I thought that might be better for him to play on instead of a regular team (much less pressure, able to work on skills and being part of a team vs. winning and competitive). However, he wasn’t autistic enough to play since he doesn’t have an aide or certain adaptive needs on his IEP. Yet, the league thought it would not be a good fit for him to be on a regular team because of his disability.
Or the fact that he’s smarter than most other kids his age. He tested for the gifted & talented program, but because he was ill at ease with the tester and had some language deficits-he didn’t make it in. That’s the definition of autism in a nutshell. So, he’s not getting enough challenge in school unless I am constantly on top of things with the teacher-who this year basically told me its HER classroom and SHE knows best.
These are the little, every day things that over time build up. I cry in the bathroom some days because no one can hear me in the shower. My son has exceeded all expectations set for him originally, mainly because they set the bar pretty low and he’s a bright kid. He can do a lot more than he gets credit for, and he’s learned how to coast already.
Ive heard from other moms walking my path that it is a struggle. Every day presents new challenges, and new issues. Right now, my son doesn’t want to go to school, and it’s a struggle to get him up and going every day. He takes his time to the point when WE HAVE TO LEAVE, and he’s still not ready. So… I wind up screaming. If not, he doesn’t get motivated and then I am seriously late to work. Then I feel awful because I am screaming at my kid, who does not deserve a banshee for a mother.
However the commonalities, we are all snowflakes ourselves. It is I, Alone.
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