Friday, February 13, 2009

That post I've been meaning to write...

I have been a terrible, terrible blogger lately! Between Sierra's croup, Jaymes ear tube surgery, my own pneumonia and now stomach flu, the vet coming out yesterday, and Jaymes-School related issues... Well, I have not had the time or the desire to write anything. And of course the subject freaks me out... But for whatever reason I feel like it really does merit a blog post.

A friend of mine (<3 Fadey) sent me some links to articles written by a college professor with an autistic son. At first I was thinking, hmm, maybe this is a casual way of saying "You're being an idiot to use your real names online, look what happened to this person". Then I thought that it was something along the lines of "you're giving negative opinions about chelation therapy/not vaccinating and assorted quackery, look what happened to this person." Yeahhh... Not quite.

The first article she sent was this one. An article much like something I, Squid, Kelley, or any of you other autism bloggers might write. An article detailing the struggles, the things her son could or could not do, the annoying habits... An article that ends positively, with the author being able to appreciate her son's "trail of sparkles."

The second article is here. The author wishes for a conversation with her son, now 17, and wonders what it might be like. She comments that she is not sure that will ever happen, but that she'll continue to want it all the same. The articles goes on to talk about her son sky, about how all the little things that he finds joy in also give her joy. About that despite how isolating life with an autistic 17 year old is, it taught her to find her own joy- if only 17 seconds worth.

Now, at this point, I was feeling all warm and fuzzy, enjoying this look into these people's lives. Click on this one, and my heart sank. How horrible, and disturbing... Although this article gives one the impression that it could have been a home invasion, robbery, something else. Not necessarily her son.

Read on to the next article, this one. Still doesn't really accuse the son of being the assailant, though he did hurt a deputy at the scene. Now, I can't blame Sky for getting violent with the police. He was likely terrified and had no idea who they were or what was going on.

Here, the police are now charging Sky with his mother's beating. Attempted murder. Here we read that Steuernagel died of her injuries and that Sky was hauled into court in a wheelchair and a spit mask, thrashing and being generally agitated as he was held by two officers.

This is incredibly sad, in every possible way, for everyone involved. It's chilling to think that a child this woman devoted her entire life to, even as those of us with younger kids with autism now are, ended up killing her. It's heartbreaking to see the picture on Age of Autism of Sky in court. I can only imagine the terror he feels, not understanding where he is, why he's being treated this way, where his mother is, and just wanting his routine back.

I do not think Sky should be held accountable for this. I think he needs to be placed in an insitution that can offer him some quality of life, while still having the personnel and training to handle him if he gets violent. Putting an autistic person in jail is ridiculous. He doesn't understand it, and to be honest I would think it would put both him and the other inmates in a lot of danger. Sky doesn't need handcuffs and tasers and a locked cage- he needs medication, therapy, and to be somewhere where his needs acan be met properly.

One of the commenters on Age of Autism's story said "For those who say, "No treatment is necessary." I invite you to look at Sky Walker in his restraints. And his mother's gravestone."

I agree. While my opinions mostly lean toward the ND movement, I do not go so far as to believe that we should let our kids with autism do what they like, with no behavioral or therapeutic intervention. Jaymes would be a holy terror (and a serious danger when he's older) if we had not started all his therapies as soon as he was diagnosed. His meds help him function and concentrate. Risperdal and Clonidine are, for us, miracle drugs. Not to say it's gotten 100% better, but I'm good with 50% better. Leaving kids with autism to do what they like and run the family causes situations like this one. These people are rewarded with a TV show and free VERY expensive home based therapy for their daughter, while those of us who spend all our time with therapies, special diets, or whatever else just plod on through our daily lives. But that's another blog post for another time.

My point is that therapies and medications very much have their place in creating a better quality of life for people with autism. Risperdal, for Jaymes, calms him down enough to function. He's not happy when he's manic and screaming and he can't learn or play. The meds slow him down just enough that he can process things better, and enjoy life rather than being overwhelmed by it.

I was a little surprised to see a lot of finger pointing at the mother (on AOA). Comments about how she should have had him on a special diet, how one commenter is able to diagnose Sky with Lyme (not having seen him?), blaming the meds...

Not all the comments are like this though. (I don't agree with pieces of the following comments, but they are good comments all the same).

You can't have the American public (Canadian too) being told "do nothing. this is natural." all while the geneticists are working toward prenatal tests while young men like Sky Walker are going through hell. Parents will hear "autism." See Sky. And choose abortion. It's gross negligence. If a parent's goal is to manage the child until group home age, so be it. But don't tell the rest of us that's the best or the moral path. And certainly don't tell the world. The women you mention will be the driving force behind the "down syndrome cure" for autism. We at Age of Autism choose teach parents, "You CAN make your child's life better, healthier and safer."

I want young parents to hear "Autism" and think "Treatable" not "Abort." I want "Autism" to sound like "Prostate Cancer", not "Pancreatic Cancer." Both are cancers, but one implies survival and the other certain death"

"We can't possibly judge the poor mother. No way. We can try to help as many kids on the spectrum as possible though through education. Therapy, inside and out - love. And despite our best efforts, herculean efforts, that doesn't guarantee we can keep our kids safe.

It's a day to pray for Sky. Period."

"Our society has yet to realize that the more we spend on the kids when they are young and the more we spend on INCLUSION strategies and community supports the more we all win and we keep our families safe (not to mention the improvement in the lives of the people with autism). The cost savings will be in fewer incarcerationss, fewer criminal justice cases at taxpayer expense, fewer emergency room visits, fewer public welfare recipients and fewer tragic deaths. Wake up America!! The tidal wave is coming."

"Nobody knows what the future will hold for these kids. The sweet tempered, occasionally aggressive kid might decide to break off all human contact at a certain point in his existence. Nobody can really tell what that trigger might be. What particular event might throw an ASD child off the edge and cause him to murder the only person in the world who really loves him - his mom (ok, some dads too!).

Ultimately, there are limits to what parents can do, what therapies can do, and what treatment can do."

You just don't know what is going to happen. Doctors just shrug when I ask them "Will my son be normal when he's older, will he be like he is now, or somewhere in between? What can I expect?"

Nobody knows. I wish we could shift the focus from pushing awareness or advocating acceptance, or blaming vaccines and wasting time and money in vaccine court . Why not spend that effort on something that would actually help? A lot of the things we parents need for our kids just are not there.

Safety items: childproofing that goes beyond the baby aisle at Walmart. How does one childproof things for a 5 year old? A 10 year old? a 25 year old? Doctors don't know. Therapists don't know. Psych doesn't know.

Medicaid recently cut funding for necessary car safety items like the harnesses or specialized car seats and buckle covers. They'd rather pay the bills when my autistic son who will not stay in his car seat gets thrown through the windshielf, than spent a few hundred to keep him safe. It's nt entirely their fault, either. Look at these companies. Jaymes car harness was $400, plus another $200 for the strap that hooked to the car. The bolt that screwed into the car was $80-ish. We're talking some metal, and some nylon straps. It did not cost these companies $680 to make one harness, it probably cost them about $50 at most. As soon as you tack on the words "medical supply" to anything, it jumps in price. We need affordable and appropriate safety items available to us. What do i tell the cop who stops me and writes me a ticket for having an unrestrained child in the car? "Well officer, he started out buckled in, but he has autism and unbuckles. I can't control what he does in the back seat while I'm driving. Should I duct tape his hands?" It's unfair to punish people living with autism (be they parents or individuals with autism themselves) for things that we cannot control. Make the services and equipment available!

We need behavioral specialists. Not the ones who charge $200 an hour and don't take insurances. Not the ones we have to drive 4 hours to. We need them locally, we need more of them. We need them to take our insurances, and to have reasonable fees if they will not.

We need better trained teachers. We need to know that our kids teachers understand autism and pay enough attention to what parents tell them. We need to know we will not be reported for child abuse if our head banging child gets a bruise, or at the very least that the teacher will recall all the times self injurious behavior has been mentioned and contact the parent before the authorities. We need to know our autistic kid won't be voted out of class for being different, that we don't have to fear our kids being abused or (god forbid) killed at school because a teacher can't handle them or doesn't understand them.

We need more services. We need to not have 9 month waits for respite. We need to know that society cares about our kids, and we need help. If we can't get some of the things we so desperately need, there will be a lot more stories like Sky's.

Go hug your kids, forget this horrible story for awhile, and reflect on what makes it worth the struggle for you. If you blog, write a post about the good things, the little things that keep you sane and happy. Link to it here in the comments.


luvmycrazyboy said...

Wow. That one really made me think. I don't quite know how to feel. It sure does suck.

Denise said...

Oh my goodness. What a difficult story. You're right - more services are necessary. Good services are necessary.