"When will the general public open their eyes to realize that autism, in all it's forms, is a prison?"
If you've read some of my pieces at Detritus concerning my son, you'll see that I don't sugarcoat the difficulties inherent in dealing with more seriously impaired autism. I take the humor where I can get it, but I don't pretend that life with Bobby is all roses. He's not going anywhere and we face a future of knowing that he will either live with family or in a group home. Now, that's not tragic, although I get that some people who were making plans for their life after their children were grown, might consider that a child not achieving independence to be a tragedy. I see that perspective as a bit of a pity party. Tragedy is burying a child. Having the child a part of your daily life for the rest of your life is work, undoubtedly, but a personal choice as to whether it is a burden, a blessing, or a mix of the two.
Autism, like many things, is a prison only if you choose to see it so. Life is what you make of it, how you choose to see it, what you choose to do about it. Martyring oneself makes no sense, and looking at a child and seeing a prison says more about the person than it does about the child or the situation.
Yes, we want improved functioning, happiness, health, and a satisfying life for our children. We all as parents want the best for our children. We want them to be smart, pretty, nice, successful people. We want them to never stumble, to never suffer. We want our own versions of perfection.
And the none of us get our idealized dreams for ourselves or for our children. How we handle the inevitable obstacles and disappointments in our lives determines whether we see our lives as satisfying and fulfilling, worth the journey, or as bitter disappointments, tragedies heaped upon tragedies.
There is plenty about parenting children, special needs or no, that is heart-wrenching, gut-twisting, and awe-inspiring. It is a roller coaster ride that doesn't end until you do. You can either buckle up and be a willing participant on the ride or sit there huffy because you wanted the Ferris wheel.
You know what, my Bobby may never be able to hold a job, never leave home, but he isn't in prison and neither am I. I may feel anchored or tethered some days, but that's because I'm a parent and put my children first, not because of the autism itself.
It's okay to vent, to release those feelings and replace them with more positive ones, but if all you do is bitch, you aren't ever going to move into a more adaptive coping style. And your child, whether he hears it or not, will know at some level that you considered him and his unique challenges to be the prison walls.
And he will grow to see himself and the autism not as obstacles to be overcome or differences to be embraced, but instead as a part of himself that shackled you and him and kept him from being the best person he could be.
You consign him to maladaptive coping, to increased risk of depression, to low self esteem, to a whole host of burdens that he did not have to bear.
I will not look at this beautiful young man and see a prison. I will not look back over the last nearly 20 years and see a prison. His first nine years were often mind-numbingly difficult days I dragged myself through with sheer force of will; he was beyond difficult to deal with, so I'm not dismissing the degree of difficulty that severe autism has with it. Nine years to potty train. More shit than I cared to clean off of floors. Food on the ceiling. Sleepless nights followed by sleepless days. The last ten years, after his stroke, have been easier years, as he recovered from the stroke, finally began to sleep, fully potty-trained, really learned to talk (oh my), but they have not been easy years. The difference: the gratefulness that my child was still alive and still with me, having so nearly been taken away. The daily knowledge that the blood clotting disorder can take him (and his father, who passed it on to him) any day tempers any chance for pity parties.
Look at your children, see them, think of the person they will be in twenty years, and judge your actions today with them in light of the person they will be in the future. How will they feel about the decisions you made for them, how you saw them. How will your words impact them?
My boy, THE boy, never a prison, never a burden (and certainly not a tragedy), and always worth the changes I made in my life to help him be the best person he could be. Not sacrifices, because not a burden. Just different path taken. And, to paraphrase Frost, it has made all the difference.