Aging out of autism

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.

Three Second Rule (or Parasites and Paradise)

I just want to share another vacation story…before I move on to everyday life again. There is this restaurant on Tybee Island called The Crab Shack and it purports to be the “best seafood on the island.” Well it being the week of Passover, and with us strictly observing the rules of the holiday..we promptly jumped into the Mighty Explorer (the proper name of my truck) and drove there for dinner one night.

This place is an event. It is a mini compound, comprised of several buildings. There is an area where the children can buy some sort of bait (I didn’t want to know what it was…) and feed the “pet” alligators with bamboo fishing poles. Because what could go wrong with that???? In fairness…these gators were on the smallish side, only about 3 or 4 feet long..There was another room with caged birds…I started laughing at the parrot cage and asked out loud if the bird was sleeping…alas, none of my children knew what I was laughing about…guess I will have to introduce them to Monty Python in the near future…

We were finally seated, outside, under a giant tree. Under our table was a trash can, and there was a hole cut in the top of the table so we could fling our garbage in there at will. Stray cats meandered in and out, between tables and legs…eating any stray seafood that wound up on the floor. The waitress arrived and we ordered up a ton of crab and shrimp, in keeping with the Passover holiday. (HEY–WHAT HAPPENS ON VACATION STAYS ON VACATION–DON’T JUDGE ME!!!! )

My sons were transfixed by all the animals..Noah especially so…he wanted one of the cats as a pet…he wanted all the birds…As we were eating dinner, my youngest son noticed a raccoon in the tree. I said oh, that’s just Rocky Raccoon…and we watched as the creature climbed down the tree, closer and closer. Other people took notice and began to get a bit nervous. The kids started to get excited..I said that there wasn’t much to worry about unless he was rabid…but I was almost certain Rocky wasn’t…he was probably just hungry for crab legs…still..I kept my eye on him as well..He finally jumped down to the ground and headed over to the boat that was pulled up on shore, as decoration, complete with skeleton pirates on it, for effect…making me wonder if Rocky had decided to run off and look for Jack Sparrow..

Meanwhile, my son Noah was eating away…again, we were outside, and the place was a bit…well, rustic? Somehow Noah dropped some food on the ground, and well this ground was so freaking filthy…you could almost see the filth waves emanating up..And well, being Noah, he just reached right down and grabbed his food up and popped it back into his mouth. I shrieked No!! but too late, and the guy at the next table, who witnessed the entire thing, convulsed into laughter. Noah apologized, I apologized for shrieking, but told he mustn’t ever do that again–especially in a place like that. Meanwhile, inside my head, a conversation took off and it went something like this: HOLY CRAP MY SON JUST ATE FOOD OFF THIS DISGUSTING FLOOR!!! HE IS GOING TO GET SOME HORRIBLE PARASITE AND GET TERRIBLY SICK AND END UP IN THE HOSPITAL!! PLEASE ANGELS DON’T LET HIM GET SICK!! STOP IT YOU STUPID IMAGINATION!! PEOPLE ALL OVER THE WORLD LIVE WITHOUT SOAP AND ANTI BACTERIAL AGENTS AND LIVE! STOP FREAKING YOURSELF OUT! (and finally) IF THAT GUY DOESN’T STOP LAUGHING….

Noah did not get sick, just for the record. And we decided that Sting Ray’s has better seafood on Tybee, and offers a far less chance of becoming ill after eating there, plus there are no potentially rabid creatures stalking you whilst you eat. A much better scene.

Another plus this vacation–no public vomiting by any family members. Awesome.

Gonna miss you Tybee–your palm trees, your beach, your warm sun–even Rocky.

Until next time.

They say I have a few issues….

I suppose I should start by saying hi. So, hi. Or, hey, if you’re like me and from the midwest. I’m living here in Michigan, the Great Lakes State. Cherry Capitol of the world. We like to say we don’t have an accent, but we do. Mine comes out more when I’m mad, and it’s different than the dialect here in the Detroit area.  But I digress. I do that a lot. Anyway, I’m 47 years old, and I am the mother of 4 children. Two girls and two boys. I would fight a bear for my kids but there are days….there are days I could just get into my car and just drive away…anywhere…just for a day…just to clear my head…for a minute of clarity….I never would, or I would have done it by now. A million and one times by now. My oldest daughter is a 25. She is a teacher and lives out of state. My 17 year old son is autistic. And not in the Rainman savant, so it’s really not that bad kind of way. He is autistic in the if he gets angry he can break some shit sort of way. I will write more on these two later. There is so much more to them. My autistic son is also my most affectionate child, so there’s that. I also have two more children that I adopted from Africa. Because, why wouldn’t I add more to my plate? My daughter is 17 and my son is 10. They were 14 and 10 when we were finally able to bring them home. Oh, yeah, did I mention I was going through treatment for breast cancer when we had to travel to get the children from Sierra Leone? Yeah, that was cool…or that I’m a registered nurse? With PTSD from an interesting childhood and life events? Or that I have some depression on occasion….no kidding… Yeah….so….I figure, I can only see my therapist once a week…and writing makes me feel better. I’ve got some shit to say. I’ve seen some things. I’ve learned a few lessons. I’m still learning them. So, I’m pulling up the laptop and tapping out some stuff here. Most of it should be funny, because I have a fairly disturbed, darkly twisted sense of humor. That happens when you’re raised by wolves in a small town. I have learned to see the humor in nearly every instance, as a means of survival. So, if you spin a little differently than the average bear; if you have a child with special needs; if you have a multi racial family; adoption issues; mother issues; abandonment issues; anger issues–stay tuned, buckle up, and enjoy the ride. This is about to get real.