I wrote this back in August 2012. It needed to sit a while to take the edge off. I couldn’t even read it to edit it.
I just watched the Seattle Children’s Hospital “Stronger” video. It took me a while to recover from the emotion of the first 41 seconds. I started crying at 35sec and then stopped the video a bit later. I just couldn’t take it at all.
It’s incredibly hard for me to watch that because some days I’m really worried about my son — what his day will be like, the next week, the summer, next year, maybe the first day after trying to transition to a mainstream class. I think about the things that no parent like me ever wants to say out loud, and I’m not sure I can even bring myself to write them down here, as if saying them gives them substance or makes them real, like a modern day version of “he who must not be named” from a Lovecraft novel or 18th century euphemisms for the devil.
But I’m going to try. The only thing that makes me think it’s okay to do this is that first, I’m writing this right now where it won’t even accidentally be seen (unless someone hacks the hell out of my dropbox) and second, even parents of kids on the spectrum don’t talk about these fears to each other, not in coffees, support groups, school meetings, or anywhere else. We’re all captured by the same fear. And part of this very quickly becomes recognizing that as much as I might feel one set of concerns for my child, there is a parent right next to me, of someone who goes to his school or that I’ve met elsewhere, who has the same fears or worse. It’s like a real-life version of Larry Sanders asking about the “good Hodgkins.” It all sucks. The bad just sucks worse.
So run down the list of fears:
I think about a friend’s neighbor, whose 30-something son wandered around the neighborhood all day, semi-literate, not capable of conversation or interaction beyond the most basic instructions. What was that guy aware of as he tromped around the block? Did he even know what state he was in, how perilous his life really was? What will happen to him when his mother dies? Will there be a kind aunt or uncle, or brother or sister to make a home for him? Or will he end up in the hellhole of some state institution, waiting everyday to see if he get punched, slapped, drugged into a stupor, or raped?
Yes, I’m writing about someone I barely have even seen. It’s way easier. I can’t put the names and faces of children I know into that scenario.
Will one of these kids be left on a bus to dehydrate and die? Will one be locked in a room, tied to a chair, left to piss his pants or shit her underwear? The same bastards who think keeping a terrorist awake all night is evil incarnate will be damned if they’ll see a teacher (only a teacher by technicality of course; those people aren’t deserving of the name) get fired for this abuse.
I wonder what goes on in Dylan’s head. Does he sense when things are hard for him? What does he think about that? Does he wonder why some answers are easy (spell kangaroo) and some are hard (why are you sad?)?
Dealing with it:
I’ve said for a long time that I’m okay with Dylan’s troubles for four reasons:
- He’s not going to die.
2. He’s not in pain.
3. He knows I love him.
4. I know he loves me.
Those came, selfishly, from thinking about someone I knew who had a little girl with CF. Even with advances in treatment, they expect that she might make it to 30. There’s a little girl with a whole lot of shit on the road ahead of her. I figured as bad as my son’s path might be, he wasn’t looking at that.
Economists tell us that you stay happy by looking down, not up. Don’t look at the $8m house on the hill, look at the $1500/month roach-infested walk-up in the East 140s and then evaluate your life. So I realized that if all I did was think about the kids who seemed to have no problems, I was destined to screw myself, and my son, out of that happiness. But at the same time, I feel guilty for looking at the kids in that video and thinking about how much better off my son is. I know, though, that there are plenty of parents with children who died, even as adults, and plenty of would-be parents out there who can’t have kids, and say to themselves that they would gladly have a sick child, or adopt one, if only given the chance. And then there are people who never quite get their life into the spot where they get the typical choices about kids. Maybe they regret those things; I don’t know.
But I do know that at least some portion of my tears comes from wishing that no child had to serve as the worse-off-than-my-son example. And I feel ashamed for even writing this down because I think of one little boy and his mother on the other side of the country who are fighting a much different fight than my son.
We’re all afraid of things. Some real – heart attacks; some distant – terrorists; some vague – the lizard brain’s resistance to change; some too real and terrible to ever really be acknowledged. This post is about that kind of fear.
Another parent (and here, “parent” is a term of art meaning a parent of a child on the spectrum) pointed me to this woman’s story of her son’s journey from diagnosis and early intervention to a special education preschool to transition to a general education environment.
I don’t know what your reaction will be. But I can bet. I will bet that if you just have kids, you’ll think it’s vaguely sad and worry instead about having to drive your kids to play dates and manage soccer games and basketball practice and where they learned those terrible words that you never say. And I will bet that if you’re a “parent,” you’ll cry at the end, especially if your child is younger than this 11-year old. I did.
Why write this? Because what parents of our kids think about seems so fundamentally unknowable to our friends and family. Because we seldom talk about it to each other, to their teachers, therapists, to their doctors and lawyers. Because this is the stuff that no one on Facebook wants to hear about (and those who mention a tough time — well, only the parents really understand that it’s never just a temper tantrum, that every little outburst or hiccup carries all this BAGGAGE – a bundle of fears stuffed inside.
When discussing the recent presidential campaign with two professors I know, one asked me who was more “favorable” when it came to autism. He assumed that I would probably support the Democrats because of their association with support of civil rights (IDEA and the ADA are civil rights statutes at their heart).
As I continued to consider that query and followed the debates and politicians’ jockeying around support of various autism legislation, I developed an idea for a political information website that recognized the primacy of autism in my life and the lives of so many families and extended families like ours. Do I vote Democrat? Do I vote Republican? No, “I vote Autism.”
I guess I’ve become a single-issue voter. And, at least for now, I see it as critical when confronting the actions and policies of other interest groups: doctors, teachers, auto union workers, post office employees, and frankly anyone else. It’s not any less legitimate for me, and every autism Dad and Mom, to speak for our children in the same voice as everyone else speaks for themselves.
- I will not claim to speak for any parents other than me, not even my ex-wife.
- There is little doubt that part of the quick rejection of vaccine causation for Dylan’s regressive ASD onset was my ex’s science background (she was a Ph.D. developmental biologist with a family history full of medical professionals) and my familiarity with epidemiological issues through my exposure to them in practicing product liability law.
I believe that all parents are, on a subjective basis, trying to help their kids, even when they choose unproven therapies or focus energies on vaccine and other unproven causes of ASD.
I sincerely wish that the cause of ASD were so easily tracked down that it could be MMR or other vaccines or the mere inclusion of wheat and milk in our children’s diets. Such simple causes would be easy to treat or address, and ASD would disappear. I really wish it were that simple.
I don’t know what causes ASD. It is indisputable that there is a strong genetic component that describes the vast majority of the risk, and thus genetic research to discover the underlying genetic mechanism is helpful and important. Once relevant genes, proteins, and pathways are discovered, the search for the non-genetic components of ASD can be far more tailored to likely candidates.
I know that if I could ascribe my son’s autism to vaccines, it would probably assuage most, if not all, of the guilt I feel at “missing” signs early on. I know that concerns (that in hindsight were symptoms) were raised with his pediatrician; I know that I was wholly ignorant of the notion that ASD is a spectrum disorder and relatedness to his family, developing language, and good vocabulary were MISLEADING signs about his underlying health; I know that even though I believe we acted reasonably, and even though we took additional steps to raise issues about him with the appropriate people, we still failed to get the “right” result. I know that I worry constantly that the months or years from when I “might have known” might turn out be the critical ones that may prevent him from making as much progress as he otherwise might.
So, what do I think about other parents? I think that many of them might feel guilty about not recognizing signs, about not pushing harder with pediatricians or other professionals. And all I can say is that I had to let go of most of that guilt so it wouldn’t interfere with helping my son. I could spend all my day arguing about vaccines, but in any case, he’s already autistic. The only relevant actions for him in his life are those that point towards treating and curing this disease.
Ed. note: This post was written quite a while ago, in response to this article asking for folks to ignore the media-tuned yammerings of Jenny McCarthy. This recent re-review that antigen exposure is not related to autism prompted me to finally publish it.]
Dylan was on CBS’s The Early Show last Thursday. Some additions: when he was in a home program, the total cost was $2k a week; now it’s $2k a month on top of what he gets at school.
Dylan attends REED Academy, a private nonprofit school focused on providing a science-based intervention for children on the autistic spectrum.
Besides wanting to see a greater variety of designs from different people rather than a number of variations on a theme from one person, I wanted to see how the original “thoughtstorm.com” might have functioned. My friends know that the genesis of “thoughtstorm” for me was a play on “brainstorm” as part of my C2B business idea.
So, please feel free to spread notice of the contest to folks who should design an entry. Also, you can vote on the entries yourselves at the project page.
If there are designers who want to improve the project pro bono but don’t like crowdSPRING or others on principle, send me a design (I obviously won’t use unless we agree to a deal), post a link here as a comment (and then everyone else may get to coment), or enter and you can agree to donate the money to REED Academy, Alpine Learning Group‘s Outreach Program, or Autism Speaks. If you agree to that and do it, I’ll match the donation myself.
NYC Area — Our friend and fellow REED parent Shelly Milstein will be on the Nightly News with Chuck Scarborough on NYC Nonstop tonight, LIVE at 7 PM Eastern. Oh, and Suzanne Wright of Autism Speaks will be there too. (Ok, I’m biased.) Here’s the place to find the right channel for your cable system.