I’ve had a busy morning. Today I visited the Vision’s Center, where my autistic son, Noah, will attend classes this fall. Since we live in Michigan, my son gets education services through the state until age 26. All other states stop providing services at age 21. Here he will learn some job skills–how to pack food in a back pack for children in need, how to cook simple meals, do some laundry, do simple tasks…all in preparation for entry into “real life” at age 26.
When we climbed into our car to drive Noah back to school, the local NPR station was playing. And the subject was autism, and aging out of the education system. I’m not making this up.
Dateline had an episode Sunday, April 12, titled “On the Brink” which discussed this very issue, and apparently this had struck a nerve with the public. No kidding, and talk about timing. As soon as I arrived home, I watched it. And I cried.
This show should be required viewing for every single person in the U.S. The show featured two mothers and their sons. One son was non verbal and the other son in the more moderate level of autism. Both were aging out of their programs and their mother’s were scrambling to try and find services to help them.
Because here is what happens. Autistic children will get some help until age 21 (age 26 in Michigan)–be it tutoring, physical or occupational or speech therapy and so on–and then oops! now you are that magic 21 (or 26) age and well, sucks to be you, but now you are no longer eligible for the very same services you received the day before.
This means that your adult child is now your full time responsibility. And, unless you have a shit ton of money and can afford a nice private place to send them for the day, or pay for an aide, private tutor, lessons, field trips and so on–you, my friend, will be the one tap dancing, teaching, bathing–setting up a daily schedule and following it minute by minute–for the rest. of. your. life.
Let that sink in.
I love my son. I have fought for him for 18 years. But, unless you also have a child with autism, or some other diagnosis that requires hands on, continuous care…I’m not sure that fatigue comes close to how I feel many days. It’s like having a toddler…one that throws tantrums, or vomits publicly, or yells, or runs away…except that they are 6′ 1″ tall and weighs 200 pounds.
And the thing is…as parents…we look to the horizon for hope. We know that, for example, when we have a newborn, that the 2am feedings don’t last forever, that the toddler years pass, and the pre school years begin, followed by the elementary years, then the pre teen then the dreaded teen, to the college years, young adult hood–we see hope on the horizon. We see an end point. We see a point where we can finally take a breath, sit down, relax, and enjoy life again–like we did before we had children (well for those of you that had that kind of life–I never did. I’ve been having one of those lives my entire existence).
But as the parent of an autistic child…we don’t get to rest. We are constantly on guard, constantly fighting for our kids, constantly waiting for the next shoe to drop. Because we know it will. Our kids only get these much needed services–the occupational therapy, the speech, physical therapies, the technology support, the psychology services–until age 21 in most states, and 26 in my state of Michigan. And then, just like that, a switch is pulled, and these children are handed back to us, we parents, already tired and overwhelmed, to deal with, on our own.
This leaves us to try and pay out of pocket for these services, or to try and find a system of payment. This leaves us to try and find a place to take our children during the day, so that they may continue to learn, to grow, to interact with their peers…don’t autistic people have rights too?? I guess they don’t…not after they age out. There are day programs..if you can find a good one…but they are few and far between.
And we are tired. We parents are so, so very tired. This leaves us to be the teacher, the therapist, the nurse, the everything…to our children…and leaves us staring blankly at the grocery store clerk when she asks us for our debit card, and we are so damn tired that we can’t even think straight, and cannot remember what pocket we put it in, and if one more person asks one more thing we will shatter right there.
We have no horizon. We have no end point. We have only please oh please let me make it to the end of the day. Except that’s when the worst thoughts creep in. It’s when we are in bed…trying desperately to sleep…they start. What happens to your son if you become ill? Old? Who cares for him then?? What happens if he blows up in public? Will the police understand? Will they taser him? What happens if your son gets sick when he is older? How will you know? How will you explain a heart attack or cancer to him?? I know–these are crazy thoughts. But, I’m a nurse and a mom, and well, this is what I think about.
Who will care for him when I can no longer do this? This is the monkey on my back, the albatross around my neck, the anchor to my soul.
With the rise of autism in this country…what is it, 1 in 60 or 68 children will be diagnosed with autism now. Don’t you think we could do better for our kids? Don’t they deserve better than just a few short years of help? They don’t stop being autistic when they turn 21 or 26. I think it was Ghandi who said you could judge the greatness of a nation by the way it treats its animals. I would throw down that we could judge the greatness of a nation by the way it treats its autistic children.
And we can start by continuing services for our autistic children for their entire life. Yeah, I just said that. With a straight face.
In the meantime, I will be here, caring for my son, my beautiful son, who I love more than words can adequately express. I will kiss his nose, nuzzle my nose in his hair, just like I did when he was a baby. I will take joy in his accomplishments, minor though they may be in comparison to neurotypical children. I will find joy.
And I will continue to fight for his right to thrive.