Bristol clock; October, 2005. Taken by Dave. Orange sky added by me.
Why am I up at this hour? I can’t sleep and it’s past midnight. I lay awake in bed and think about autism, Aspergers, RDI, of why my husband has to snore like that, like a hippopotamus up to his nostrils in mud? Why did I take the plastic mattress cover off my son’s bed today when he is now sleeping on three towels because he wet the bed? Why didn’t I bring him to the toilet when he first woke up instead of taking him at his word when I asked him, do you have to pee honey? as his torso swayed in the air?
When I first started writing about Aspergers it was to keep myself from going over the edge. Not from the diagnosis. It wasn't only that my son had autism.
You see, a few weeks ago, the little Hungarian man in the woods said there is a new kind of child being born, the ‘self conscious child’ who turns into the disappointed child when he discovers his parents don’t understand him, don’t know how to give him what he needs.
I think I was turning into a disappointed adult, maybe from years of knowing what I needed but not how to give it to myself. I never felt disappointed growing up or in my early adulthood. I don’t mean in that small way like I’m disappointed they ran out of Everything bagels. I mean, in the larger, I’m disappointed with my life way, with missed opportunities and lost time, with not believing in myself enough not being willing to step out into it, the big abyss, to look way down there and jump. I love my husband and child and family. It’s wasn’t that. It was arriving at a point when the realness and the preciousness of this life felt piercingly loud and delicate and irretreivable. And that awoke a desperation in me. A rising tide of bitterness.
So I wrote to keep the bitterness at bay. I wrote because I said I always wanted to write, that I feel like a writer but I never wrote and the betrayal was finally more than I could bare. I wrote because I had to express what I was going through, the isolation of parenthood was surprise enough but the isolation of parenting my son on the spectrum had my face against the cold cement of the dark dank basement, the loneliness and apartness I was feeling and that I was also CHOOSING because I believed in my gut it was right for my son, even if it was the wrong thing for me. Because how could it be the wrong thing for me if it was the right thing for him? That has been a huge question for me throughout this year.
Now I know that part of what was hard about parenting was the autism. Not the obvious kind, not the he’s not verbal he’s not looking at me he’s hitting his head all day in the corner. Not to discount that as a painful, stressful, frightening thing for those families. But it wasn’t our story. It wasn’t my story. I just spent most of Fluffy’s life feeling inadequate, which was confusing since I saw myself giving it every thing I had and I thought what I had was pretty good, pretty playful and flexible, pretty tuned in and dedicated. But it didn’t work. We had no schedule. We never slept. We couldn’t make plans. I couldn’t talk to anyone when I was with my son and I was with him a lot. He was mostly happy, as I bent and twisted into a strudle, a high-strung, perplexed, exhausted strudle, but somehow even a happy one; I love being his mom-a mom, after years and years of infertility. It’s just that being his mom was ONE of the things I wanted to do with my 40s, not the ONLY thing.
I don’t get this preoccupation with the “labeling” of my child, of our children. What’s the concern? I’ve heard people say about my son’s Aspergers, how can anyone know, at his age? Be careful. Be careful with that diagnosis! Why? How is it going to change the way I am with him? It just explained a lot to me, that’s all. I’m not giving his care over to anyone else’s authority. They could say he has Doody Chin-itis and if the list of symptoms and behaviors and manifestations made sense to me, then fine, I’d walk around talking about Doody Chin-itis and try to raise awareness of Doody Chin-itis and slap a colorful Doody Chin-itis ribbon on my car. What does it matter? The stigma? No stigma as far as I’m concerned. Do they think I’m going to listen to the Doody Chin-iticians tell me what my son can and can’t have in this life as a result of their rx?
Listen, what of modern neurology? The brain is plastic, it learns, new neurons are made every day, pleuripotent ones, unassigned ones, if you will, that are called off to new locations and await further orders. And that’s where most cell death take place--when they are failed to be stimulated, when they aren’t challenged. And this ASD is a neurological disorder. So, let’s call it what it is as soon as we are able, and then dive in and give those cells something to do.
I hear of this heated debate, the biomedical approach versus those who petition for greater acceptance of these children, greater awarenes of autism, greater education. And I think, what am I missing? I do accept my son as he is. I embrace him and love him and will continue to work to allow for him to grow into his potential. If someone is chelating their child and pumping them with enzymes and intravenous glutathione and putting them the GFCF Feingold Failsafe all because they MUST get rid of the autism before they accept their child then that is quite sad. If someone is not exploring diet or supplements or alternative therapies because they feel to do so would be to not accept their child as they are, then I think that’s sad too. But isn’t this a gross oversimplification? I don't know scads of parents with autistic kids, but of the ones I talk to, and read about, all are passionately in love with their children, advocating for their children, accepting, loving, and learning from their children. Where is this debate taking place? And once you find out, please don't tell me because I don't want to join. I have limited energy. I can’t debate something like that because it doesn’t make sense to me. I’d have to walk by and wave my hand in the air, like I’m swatting away a cloud of pesky flies. I need to go over here where the air is clear and I can focus.
What if I said, let’s just accept children with cancer and not try to treat the cancer because then we’re sending the wrong message to the children about not accepting them for who they are. And I know I will be pounced in an instant for equating cancer with autism. Cancer = uncontrolled cell growth, genes turning themselves on and off with no regard to the body, eating away at healthy tissue, causing debilitation, devastation , and death. No. Not the same at all. What I’m saying is that autism takes the child on a deviant developmental pathway that begins and continues to cut them off from interaction with other people, themselves, and the world. This is not typical. This is not ‘normal’, normal meaning, what we are used to seeing. These kids have brains that are different than the typical brain. But these are brains that can learn, and change. Social development may return to the typical path and even catch up and then the child can interact with others, with themselves, with the world. What child wouldn’t want that chance?
Yes yes. There are some quirks about autism that bring a new perspective to this world, gifts, differences that are fascinating, valid, important. We need all kinds here but that’s always been the case. We aren’t going to remediate the autism until all autistic kids look like maryann and joe. Ask any parent, any professional that has treated autism. Put 100 ASD kids in the room, you’ve got 100 highly different kids. Remediate the autism, and you’ve still got 100 different kids. But maybe they can now deal with the sensory input of the scene, maybe they will feel safe, and will express themselves with the confidence and competence that is their birthright.
What I want for my son is what any mother wants for her child: for him to have a full, happy, independent life; to have meaningful work; to have meaningful relationships, to have a partner to share his life with and children if he wants; to feel a part of this world: successful, excited, engaged. Autism robs this from many people. That is not okay with me.
Although no one knows the cause, there is a growing consensus of what constitutes autism. Now that we know where the deficits lie, let’s treat them and turn down the static so we can hear what these kids are saying.
I, for one, am interested. I’m not trying to fix them. I’m trying to hear them.
i guess for me it's not about curing vs. changing vs. letting be--it's just about being a parent, acting from a place of love and responsibility, like with any child, spectrum or not. i don't get the puzzle: hmm, shall i cure my child of this disorder that has been addressed to varying degrees in other ASD kids and ended up relieving a lot of confusion and fear? or shall I change them, which is, of course, impossible? or shall I try to change the way they percieve and therefore feel and act, which is possible? or shall I jsut let them be. and what exactly, does that mean, to just let them be? i just can't wrap my mind around what that would look like.
parenting is all about providing for the child, to allow for their greatest freedom and happiness, in all areas. for me, the education, ie. academics is far less important than the social developmental. the academics will come. there are amazingly brilliant highly educated people out there on the spectrum who lead lonely frighenied, isolated, and painful lives. i might make us feel better to see verbal educated autistics out there but that doesn't necessarily reflect on their quality of life.
Posted by: kyra | October 23, 2005 at 04:21 PM
Whether to cure or change, or just let be--we all go through these questions every day, and not only in regard to biomedical "versus" other interventions. Even thinking through the right kind of education for our kids brings out a lot. Thanks for your post!
Posted by: kchew | October 23, 2005 at 01:42 PM
Very well said, indeed.
Posted by: Wade Rankin | October 23, 2005 at 12:09 PM
Kyra, When I read a post like this I realize just how far I am from being the kind of Mom you are. You are a pillar of strength, of clear-eyed and vigilant love backed up by astounding brilliance. I feel so *lucky* to know you.
Posted by: Felicity | October 23, 2005 at 10:15 AM
Kyra, I tagged you. You're it. Check out my latest post.
Posted by: Felicity | October 23, 2005 at 07:48 AM
I know I say it all the time, but my life would have been so much different if some people I know were even 1/10 of the mother you are.
Posted by: Kim | October 23, 2005 at 06:32 AM