Lowering That Bar Again

I've mentioned this before a while ago in a previous post......you know when you have a baby and you can see his/her future a certain way for them....you set your bar high and have all these expectations for them....college graduate, marriage, family, great job....then you find out he has a disability. You have to lower that bar a little bit and revamp your expectations. Maybe he won't be a doctor or scientist, and may not get that PhD. But he'll still do fine, right? Then a few more years go by and test scores indicate he doesn't have as high of an IQ as a typical child and you get a diagnosis: autism.  So you lower the bar again; lower your expectations. How many times can you lower that bar? Lower your expectations? So you hope for high school graduation, maybe some vocational school or general degree in college, and a good job--hope for marriage and grandkids someday. Year after year you come to the conclusions that none of your hopes and dreams for your child can ever come true. It breaks your heart each time you have to lower that bar. Now it is to the point where the child will graduate, but will no longer be in the academic classes that lead toward a college path. Now the best thing you can hope for is the career path. Forget Algebra, forget Trigonometry. Forget three years of the typical sciences of physics, chemistry, and biology. Put in their place "functional" math and "general" science. And the words that are hard to hear, "Basic Living Skills." The bar gets lowered. Now all to hope for is your child being as independent as possible. To live on his own and take care of himself with help, if needed. Maybe he'll never be the kindergarten teacher that he always wanted to be, but now will only be a classroom assistant. And forget about him being a veterinarian, but maybe he can clean cages at the local shelter. And if all else fails, maybe he can bag groceries at the local supermarket. And forget about those grandkids. But on the bright side, maybe he will be less anxious and stressed out, most definitely happier with regard to school work. But once he finds out that he's in the "remedial" classes, he'll get really upset and I don't know what I'll do if that happens. I don't want to disappoint my child and shatter his dreams. How do I help him to reach his full potential and be incredibly happy in life?

Parenting an Autistic Child

I was doing some reading last week at work (of course after all my jobs were finished). I usually don't read Reader's Digest, but it was available and sometimes the jokes are pretty funny. In this edition was an article called "My Daughter, Myself" where a woman, Sallie Tisdale, talks about how it feels to care for a disabled child. I found some of the things she wrote relatable to my own situation.

Some of what I read was disheartening, some other was a kick in the butt:

"Ambivalence is a normal state for me. It is hard to articulate what I seem to have lost, because it is something I never had. Annie was never going to go to law school--we knew that. Eventually we knew she was not even going to drive a car. What I miss is something vague and dreamy about a daughter growing up. I have fantasies of high school girls giggling in a bedroom behind a closed door, of long phone calls. I feel grief for the past, for all that there was none of, and grief for the future, for what there may be none of yet to come. Every parent loses a child, several children, as each successive child passes into the next--the chrysalis of the infant becomes the toddler, the toddler gives way to the child, and the child to the youth, and finally the adult. This is one element of being a parent, of being alive, though there is an enduring sorrow in realizing not that the child has died but that the adult anticipated will never be born.

"I feel sad and sorry for myself or pissed off, and then I feel petty because I'm sad and sorry for myself, because I'm complaining when things could be so much worse. She's not aggressive or incontinent. She can walk and make herself a sandwich and sleep through the night. And we're lucky, because as late as it was in coming and as vague as it is in explaining things, we did eventually get a diagnosis.

"Long-term studies of people with autism are not reassuring. Very few go to college, are employed, or lead independent lives. The supports of school are remove, and nothing takes their place.

"Don't ever say to her, and don't say to yourself, that there is any tragedy in who she is. She is what she is."