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.

A dog lover by day..and semi racist by night

So I have this dog. Ok, well, I have two dogs. One is an eleven year old Cavalier King Charles, named Scrappy (as in Scrappy Doo). He is a tri color, just so you know. Then, in November, I got suckered into rescuing a Rottweiler mix. Her name is Harley (as in Harley Quinn, from Batman). She is about a year old, cute as hell, and obnoxious as all get out. I’m trying to train her. Wish me luck. She keeps escaping out of our yard, into the neighbor’s yard, to romp with their dog, a little fluff ball of a mutt…and when I go over to retrieve her, Harley laughs at me. She streaks past me, fire shooting out from her paws, daring me to try and catch her..she will stop..look at me, laughing, and then, just as I go to grab her collar, lurch out of my grasp and run in circles around me. Much cursing is heard, as my sailor vocabulary comes out, as well, I’m in the neighbor’s yard, and I’m pretty sure they aren’t too happy with the fact that my dog is tearing up their yard and chewing on their dog’s toys. And don’t even go into any bathroom issues. I’m gonna have to send over a clean up crew later. Sigh.

Suffice it to say that Invisible Fence is getting a STAT CALL later. And I want our fence put on MAXIMUM STUN. Hey, don’t hate me. I don’t want my dog hit by a car or terrorizing any neighbors. DON’T JUDGE ME PEOPLE.

Anyway. Today some men were in my yard, doing some spring clean up stuff for the neighbor behind me..they had to point their leaf blowers thru my fence. Miss Harley was out, but I was smart enough to put her out on a lead, so she wouldn’t be four miles away, at the local brewhouse, the minute I put her out. The guy in my backyard came up to play with her…and in an effort to make her less afraid of him, took off his leaf blower gear and laid down on the ground. Harley began sniffing him, then licking him a bit, and they wrestled a bit. Wow, I thought, that’s sort of cool…what  nice guy.

He explained that he had Bull Mastiff’s and that they were good to him but not to strangers..and we talked about our dogs..a nice conversation…and then he said it.

He said, “You know, I live in a neighborhood with lots of blacks in it, so I need my dogs. You just never know.” I was speechless. Me, the wordsmith, the person whose big mouth get’s her into trouble all the damn time–at a loss for words.

He said some more shit about how great his dogs were and then moved on with his yard gear and I went back into my house. Stunned.

If you don’t think we live in a racist nation, you’re kidding yourselves. I’m sure he doesn’t consider himself a racist. He was a nice guy. That’s the problem with racism…how hidden, how insidious it is.

I wanted to say…I wanted to say, how would your dogs react to my African children? I wanted to ask “Why does a neighborhood with lots of blacks in it, make it a bad neighborhood??” I wanted to ask “Why do we assume that a black person is bad but a white person is good?”  I knew that all of this would be denied…explained away…I’ve heard it before from my “non racist” racist white friends (no–I have black friends! I’m not a racist!)

This post may not win me any friends. Maybe it will.

All I know is that we need to have a real conversation about race in this country. And our reactions to it. And I could go on here but I won’t.

Right now I’m too busy spending time with my crazy dogs. And my children.

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.

Roadtrip 2015 (or why I may fly next time…)

I am back home from a week’s vacation with all four of my children. And it involved a road trip. Ten hours of driving the first day alone…four hours more the second. I’m still feeling a bit dizzy from the drive home this weekend. I managed to locate some of those car bingo cards we used to play with when I was a child and gave them to my son and daughter for the trip. And I watched them turn into competitive savages. I told them they had to fill in the entire board to win. And then I proceeded to drive and listen to them turn on each other in an attempt to win a game with no prize at the end. It was really kind of fun.

We made it to our rental house on Tybee Island, Georgia. Tybee is a very laid back kind of place..lots of colorful houses, palm trees, the ocean…so wonderful after our brutally cold Michigan winter. The flowers were blooming, and the pollen was so thick in the air, my white Explorer looked yellow. The kids went swimming in the ocean, reminiscing about their first trip to the ocean..back in Africa..when we went there to bring them home. They recalled how scared they had been (I remembered that they weren’t even aware that they lived near the ocean..) and we all remembered the long journey to the beach in Sierra Leone and the adventure we had that beach day. How far we have come since then.

Noah tried to catch a seagull, so he could “take it back with us for a pet.” Then he tried to find some buried pirate treasure on the beach, and finally sat on the bench swing, just relaxing. Swinging is one of his favorite things to do.

On Monday we drove four hours in to Atlanta, so Noah could go to the zoo and see all his favorite animals, and then went to the aquarium. The kids loved both places and we left the aquarium after the Disneyesque dolphin show ended–around 7 pm. We drove just outside of Atlanta and stopped for dinner..which was took some time, for some reason still unknown…and then, around 9 pm…just as the basketball game was about to begin, the television sets all lost cable. I made the comment that they must have satellite and it must be raining, and glanced outside. Sure enough, it was pouring and I thought, crap, we are going to get soaked running to the car. Famous. Last. Words.

I paid the bill and grabbed the kids and tried to run out to the Explorer. Except that Noah doesn’t run so quickly…I was pulling him…he was resisting…we were completely soaked in seconds. We jumped into the car and I quickly realized that being wet was the least of my worries.

I pulled out onto the freeway…a bit anxious, but wanting to get home. We still had a good 4 hours to drive..I got onto the freeway and the heavens opened. I mean, they freaking opened. This was Biblical proportions rain. This was hurricane, typhoon, wall of water, mother of god rain. I could not see a thing. There have only been a few times I have been this frightened driving in the rain. The last time was when I was 21 years old. I remember exactly where I was–that’s how scared I was.

I tried to not let the children see that I was terrified. In my mind I was thinking: HOLY SHIT HOW IN THE HELL AM I SUPPOSED TO DRIVE IN THIS SHIT?? DEAR HEAVENLY FATHER!! GUARDIAN ANGELS HELP ME SURVIVE!!! I HAVEN’T WRITTEN MY BOOK YET!! SAVE MY KIDS!! THEY DESERVE TO LIVE!!!

What I said instead was, Oh, I wonder if I should pull off? This seems a bit heavy. My oldest daughter said that there was no place to pull over, as it sort of looked like we were in a construction zone..so we just tried to zero in on the tail lights in front of us. Meanwhile, as we could not really determine where the lanes were, semi’s were passing us, missing us by mere inches.

We drove like that, on and off for about an hour…and I think it took about 3 days for my hands to unclench and my jaw to relax. After the Biblical rains stopped..I noticed that we had about 70 miles left on the gas gauge. I remarked that we would have to stop for gas..and we began scanning for exits with gas stations.

We began pulling off at exits, and lo and behold! the gas stations were closed. WTF??? How is this even possible??? This is a freeway people!!!! So we drove on, stopping–still closed. Let me fast forward–it is now freaking midnight, and I now have 2 miles to empty. My GPS and my phone cannot locate a gas station…I pulled off the freeway at the next exit. It was extremely dark out, and I pulled into this abandoned road side store. I called Ford Roadside Assistance and was trying to explain exactly where we were when a semi pulled up.

The driver got out and talked with my oldest daughter. She reported to me that she thought we were all going to be murdered right then and there. Sigh. Roadside Assistance sent somebody right out to help us and put two gallons into our gas tank. The semi driver had his girlfriend/wife? with him and they got out and talked with me and waited with us until the gasoline arrived. They were very nice people and not at all murderers. At least, as far as I could tell.

We made it to the next 24 hour gas station (let me just interject here and explain that apparently, along this particular stretch of highway in Georgia, the gas stations close at 10 pm, and the 24 hour stations are about 50 or so miles apart. Good to know now, and THANKS GARMIN GPS FOR TELLING ME THAT. And that was sarcasm, just so you know).  We finally rolled into Tybee around 230 am…making Monday officially a week long day. Officially.

We ate lots of seafood, and spent much time just hanging out. It was a glorious week. But alas, it ended and I had to begin the long drive home. Now, fourteen hours in a car with children is a lot for any parent. But fourteen hours in the car with my children?? Somebody needs to call Ellen Degeneres for me.

Let me explain a little bit what this is like. My kids don’t sleep in the car. Noah, my sweet autistic Noah, well…he likes to ask questions. Over and over and over. So it goes something like this : Mom. Mom. Mom. I want to be the Joker for Halloween. I want green hair and a red mouth. And the next Halloween I want to be Harley Quinn. And the next Halloween I want to be the Riddler and the next Halloween I want to be Scarecrow and the next Halloween I want to be Sandman and the next Halloween I want to be Penguin MOM WHO DO I WANT TO BE FOR HALLOWEEN???? except that I didn’t list out all 4o of the villains he really lists out and I am expected to remember. And then he switches to a different loop : Mom. Mom. Mom. I want to have polar bears as my pets. And meerkats. And golden barn owls and giant pandas and red pandas and lemurs and lions and tigers and (insert 300 other exotic animals here). MOM WHAT ANIMALS DO I WANT FOR MY PETS???  and then I have to repeat them back. And this goes on. And on. And on. And on. Without stopping. For hours. Sigh.

So just imagine that you’re a bit tired, and trying to navigate thru the hills of West Virginia, in the dark, and trying to answer all of that at exactly the same time.

Which is why I think I need a vacation to recover from my vacation. I’m exhausted.

Sigh.

Rainbows and unicorns

Ok, so I have two groups of friends. Well, I probably have more than that, but humor me. I have two groups of friends. I have those friends that have lovely lives. Their children are healthy. They have thoughtful spouses. They live in large, or even small, well organized houses, nicely decorated. They don’t bloat when they eat broccoli. Their children don’t vomit in public. They get free drinks, the light turns green when they drive down the road, their biggest worry is perhaps losing five pounds. Those are my rainbow and unicorn friends. I enjoy them. They remind me how much fun life is.

But I have my tornado friends. These are my more, well, real friends. These are my friends that have struggled with addiction. These are my friends that have a handicapped child. The friend that has lost not one, but two husbands. The friend that is raising her handicapped grandchild while she is watching her own husband die of cancer. My friends that know what the hell life is really about. They will throw down with you. They know what depression is. They know what pure joy is. And what truly little it takes to find that.

I need both sets of friends. They complement each other. They remind me to enjoy life and not to take it all so seriously. And to take it all so seriously. I need the tornadoes. But I need to see a rainbow once in awhile too.

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.