You know all those times that your friend/brother/sister/daughter/son/perfect stranger with an autistic child made terrible decisions, set unreasonable goals, or held eternal hope for the future of their child and you just have to set them straight. You know, because, it's for their own good. They need to accept the fate that the Almighty has handed them (on a mercury and lead-plated platter) and stop all this silly behavior. It is your duty, no, your God-given right as the parent of a neurologically perfect child (or at least the gleam in the eye of one) to bring them down to earth and behave sensibly, i.e., understand that the sooner they institutionalize their autistic child, the sooner they can get on with their lives.
Well, don't do it.
Even if your critiques are just a shadow of those listed above, bite your tongue until it bleeds.
See, we've already fed ourselves through the ringer for nearly every decision we've made.. And I'm not talking about the big ones, like, should I mainstream my kids so he can peer-model, or will the chaos in his kindergarten class overstimulate him to the point that the only modeling he wants to do is pelting his classmates with clay.
No, the little ones as well, like, if I take Jonah to the grocery store today, will the flickering of the florescent lights cause him to meltdown in the cereal aisle when I still haven't made it through frozen foods, milk and eggs? You might wonder why my freezer is empty but my cupboards are full of oatmeal and pasta. Please refrain from commenting that this month's JAMA claims that autism is caused by calcium deficiency. BTW, last month it was zinc, the month before, magnesium. Welcome to the cause-of-the-month club.
So when I tell you that, after hours and hours of soulbearing, eyes red from web research, and genuine parental angst, that we have decided that we should in fact, for our children, and our family as a whole, embark on a wonderful and bonding adventure, even if you think remaining silent will land you a seat next to Lucifer in Hell, smile sweetly and tell us what a wonderful idea.
See, for every possible disaster you foresee, our own nightmare scenarios multiply exponentially. While you fret that we may not get to shower everyday, we google the annual number of child fatalities from poisonous snakebites. While you perserverate over whether we can start a portable a/c from a 1k watt generator, we price out personal GPS devices for Jonah (of course trying to figure out how to attach it to him, since he prefers being almost naked above all else.) While you worry if we can stay sane if we don't have waist-high cabinets and a microwave, we're plotting the location of every Whole Foods store nationwide, so we can make sure we have enough gluten-free food for Sam, or, in case of a drought of said stores, whether we can fit a propane freezer in the porta potti storage area (and where to move the porta potti.)
And despite the zillion of possible disaster scenarios, when applying and reapplying the risk/benefit ratio, the crazy plan comes out ahead every time. The breaking factors? Hope and belief. Belief in our kids, in our strength as a family, our ability as parents.
There are potentially millions of parents of neurologically typical kids who might benefit from your immense reservoir of knowledge on an entire array of subjects. They probably haven't lost hours of sleep worrying that their every move might unalterably change the fate of their children's lives.
Oh, yes, they're parents. Perhaps it's time to offer your drive-by advice on rec.pets. Or alt.rocks.
Posted by MB Williams at February 28, 2005 08:12 PM | TrackBackExcellent!
I read this only hours after being told by a professional that its institution time.
Posted by: djuggler at February 28, 2005 08:51 PMjust who is this person who supposedly knows more than MB and EBW? I don't believe such one exists!
Posted by: Peatey at February 28, 2005 09:32 PMWhen Bobby was little he was having a meltdown in the grovery store. The lights, the noise, the attractive displays, the waiting in line were just too much for him.
As I tried to get him up off the floor, keep him from yelling, unload the buggy, pay for the groceries, count the change, and keep my sanity, an older lady remarked that it was not the boy's fault. Some children just need more disciple misbehavior is the fault of the parents and not the child. It is hard to get much more aggravated than I was at that point.
Most comments are well intentioned if insensitive.
What I hate the most is the presumption that we have not thought things through and that we are willing to be frivolous about our kids and our life. Deb and I have been up at 3:00 am, worried sick, too many times for our decisions to have been made in haste or without thought.
Have a great trip. I am envious of you guys. Time spent with one's kids is precious and is never a waste. I wonder if there has every been a person on their death bed who wished he had spent more time in the office and less with his wife and kids.
Oh and BTW, if you figure out the GPS, let me know. Bobby will not wear things around his neck, on his wrist or ankle. We thought about putting one in the heel of his shoe but he also likes to go barefoot. Maybe in a treasured toy.
Perhaps we could tape it in the middle of his back where he can not reach but he would probably just rub it off like a bear scratching his back.
Bobby and Jonah are obviously conspiring behind our backs. Perhaps we need to check the IM logs of both our computers :-)
Posted by: MB at February 28, 2005 10:25 PMThink intermediate technology here guys. RF transmitters are there already. Now this is really dependent on how secure you want to be, but already they can attach similar devices to the molars of pets. I think Technology Review covered the tech here several times in recent years. But GPS is way to big just yet. RF can spot you for most of waht you need. And Mary Poppins as a nanny. Several of them. Unfortunately, she's no longer available at any price, and if she were, it would be expensive.
My hat is off to you though. I've been hearing of the struggles from Dwight and MB & E for awhile. I don't know anyone who has a severely affected child. I imagine it's like fighting your own private battles everyday, but for much of the differently abled community it's somewhat similar. Except for that nakkid part. You have to get older to get to experience that normally. At this age they'll at least look good streaking, right? ;>
Posted by: VJ at March 1, 2005 04:07 AMI forgot to add the wish to enjoy your trip, where ever it takes you. Also the above entry has a TalkLeft web page on RF tags in it. If I recall correctly, the range can be extended out to perhaps as much as 1000 yds or so. Even if it were half of this, it could cut down on a search time considerably, if you could get it to work in such a manner.
On Mercury: (again... )
I've included a link here from TAP (Am. Prospect) on the Repug. version of the science on Mercury. It's Lysenkoism pure and simple, the way the GOP likes all their information.[Title below]:
---------------------
On Another Planet
The GOP?s science on mercury is out of this world.
By Chris Mooney
Web Exclusive: 02.28.05
Chris Mooney also has an excellent blog covering such scientific issues, as he has for years:
[http://www.chriscmooney.com/blog.asp]
What an absolutely beautiful post.
Posted by: des at March 1, 2005 07:47 AMAs the older sister who traveled with an autistic boy and her parents, I have to say, it's the vacations I remember now, at 31, the most fondly.
Disneyworld when I was 13 and he was 10. My brother is non-verbal and then was labeled mildly retarded (now it's moderate to severe, and I think it's like clothes sizes, only backward). We went on "It's a Small World..." I'm sure that ride would drive half the autistic kids in the world utterly nuts. My brother laughed with unmitigated glee the whole way through. He hardly ever had those surprised, happy responses like that. (My mom cried while she was laughing. My dad smiled his quiet little secret smile.) I was, of course, half embarrassed and half overjoyed. I made myself not cry - too cool for that - but I watched him the whole time.
When I was 10 and he was 7 we drove to visit relatives in Kentucky. In Ohio we stopped to eat, at a sit down place. My brother, although he couldn't speak, communicated with us quite a bit with noises. Some rude old people asked to be moved.
At 10 I wasn't old enough yet to realize *I* was the one who was supposed to be embarrassed. I was a little militant against people I thought were rude. People who stared or asked to be moved. They *loudly* requested to be moved away from the "noise". I loudly told my parents, "How rude, you'd think old people would have better manners."
My mother told me that was impolite, and went to the bathroom. I thought she went there to cry - she did that a lot. I found out as a teenager she went to laugh because she was so glad I said that. To this day, she tells people that story, and laughs.
It's hard for the families. But discouraging people who think we should be hiding our autistic sibs and kids in our houses or putting them away somewhere need to realize that we're people too. Just like everyone else.
I guess I'm still a little militant about rude people. I always smile at parents out with autisic kids because I know how hard it is for them, and I still approach people who stare at them and ask if they know what they're staring at. And when I get the 'parents who don't know how to control their kid' answer, I explain just how wrong they are.
Have fun on vacation. I remember when my brother stripped down and ran around naked in Kentucky and how my Mammaw could just die and how he got some skin irritant and how fun that was - but now it's very funny, and when we show him pictures he seems to recognize them.
Posted by: LizT at March 1, 2005 04:36 PMHey Liz, I hear ya about militant! LOL I am the first one in line telling people to Byte Me.
That Boynton cup says it best: Don't Let the Turkeys Get You Down. ;D
Posted by: Moi ;) at March 2, 2005 03:40 PMI love this post!
Posted by: Cathy at March 6, 2005 10:07 AMGreat writing! Perfect, in fact. I think I love you.
Posted by: trisha at March 6, 2005 10:18 AM