The Parent Activist
August 5, 2008 by Kristina Chew, PhD
Filed under Health
Charlie’s lunchbox is all packed and ready to go, except that he’s got just over a month to wait before the yellow school bus pulls into our parking lot. Summer school was over last Thursday and now begins the period that suggests why, to rewrite that famous line of T.S. Eliot’s, August is the cruelest month. Therapists and teachers do have to go on vacation sometime, schools shut their doors (ours are undergoing school sonstruction), and the dog days of summer cometh—-and hot and long unstructured days, which have tended to mean not the easiest of times for Charlie, who prefers the orderliness of bus waiting time, school, getting off the bus, snacks, loafing around (yes, that’s a schedule item), homework (he doesn’t have too much, yet), cello or piano practice (both on energetic days), swimming, dinner, shower, hanging out, bed.
A busy life we lead here, oh yes.
Summer in general and August in particular, Charlie is with Jim and me more (and Jim for the better part of this week, as I’m still teaching summer school). After another day trip to the ocean, this morning’s activity was sleeping in (and helping me with the laundry). We’re out and about more than ever, which means we become, if I may use the term, more the activists than ever, inasmuch as, soon as we’re in a public place, people tend to get that nervous twitch that means, there’s someone different in our midst. Just the other day, Charlie ran ahead of me into the YMCA, where we go so often that he feels very comfortable; a woman I had not met before said, very relieved, “Oh, he’s with you.” I noted that Charlie was indeed my son and she said, “I was worried there was something wrong.”
In former days, when I tended to feel I had to be more of the “warrior mom” all the time, I would have said words to the effect of “there’s nothing wrong, he has autism” and reeled off the latest prevalence figure about how much more common autism is etc., etc.. I’ve gradually preferred a non-confrontational and peaceful response and simply said, “Charlie’s autistic” and told them how I appreciated that the pool seemed to be open more hours this summer, and then excused myself as Charlie was skipping off to swim.
Jim stood Charlie and me back to back this weekend and declared that Charlie has about 3 inches on me. I can’t deny it, he and I gets looks, and sometimes (as a parent) one feels that it’s just you and your body blocking off the negative energy of someone saying “what’s he doing in here?” about Charlie.
That’s parents of special needs or disabled kids “activism” to me at a very basic level. You’d like your child to do, in whatever way she or he can, the things that any one, many people, on this planet can, from playgrounds to supermarket aisles, to Chuck E Cheese (well, we have never really done that) to movie theaters, to malls, to wherever. You try your best and sometimes you just scoot out the door to the safety of the car as fast as possible.
Autism being something much talked about of late, the terms “autism activist” and “autism parent activist,” and “autism advocate,” and “autism parent advocate,” occur not infrequently in the newspaper and other media sources, as in this March New York Times article. Regrettably, there is a tendency to say that anyone who is quote vocal and on the loud side about their position of vaccines, mercury, thimerosal, et alia, and perhaps is an in-good-standing member of organizations that make very clear their views on vaccines and autism, is an “autism activist/advocate” and, indeed, an “autism parent activist/advocate.” But groups like Safe Minds, Generation Rescue, and the National Autism Association, advocate for a very specific platform of vaccine issues, and, especially, for the scientifically unproven hypothesis that vaccines or something in vaccines can be linked to autism. In the latest show that “we know better than the scientists, and the government, and most definitely the CDC,” Jenny McCarthy and the “Green Our Vaccines” rank and file are planning to rally/demonstrate/be loud/etc. at the Peninsula Hotel in New York, to put up a raucous show while the AAP launches a campaign about immunizations with the people the anti-vaccinationists/pro-vaccine-safetiers love to hate: “Amanda Peet, Rosalynn Carter, Betty Bumpers, the President of the American Academy of Pediatrics, Paul Offit (holder of several vaccine patents), and a mom of a child with autism!”
No, that “mom of a child with autism!” isn’t going to be me. While the Peninsula Hotel is a comfortable walk from my husband’s office, Charlie and I will be, as ever, hiding out in Jersey, most of all because he has an optometrist appointment and has been doing a lot of unexplained squinting. This optometrist specializes in special needs and disabled kids and we have been visiting her for several years, first when Charlie wore prism lenses and then because he was banging his head so much, we had to make sure his vision was ok.
Parent activism and advocacy are nothing splashy. No one gets on the evening news for sitting in doctors’ waiting rooms with an anxious child. But whether waving a sign at some eager-to-get-a-good-ratings-story-Manhattan-reporter or guiding a child through a gauntlet of puzzled looks, is your preferred kind of activism—whether you wish to chase a discounted theory or get on with it, and do the best you can today for the child you have today here, in front of you, now, activism is as activism does.
I’ll let you know how the eye appointment goes, after another full day out—aut—and about.
I’ve been reading your blog for a bit now, but had to comment tonight about the unstructeredness (I think I just made that word up, LOL) of summer and how it’s hard. My daughter is just 5, but already we are seeing how much better she does when she has the structure of school (even for the few hours she goes to preschool). Her extended year will end on Thursday and while I go to work, my dh will have to figure out how to keep her busy and (hopefully) mostly tantrum free until Sept 2.
Hope the eye appointment goes well.
“soon as we’re in a public place, people tend to get that nervous twitch that means, there’s someone different in our midst.”
Yup. That’s most days I go to school, the store, the bus, and walking around.
Nice one!
I prefer to be the ”aut” and about type of parent activist too.
And I suppose an advantage of home-education, when it works for your family and child, is that these difficult changes in routine are avoided.
just wanted to write and thank you for all the posts that you do, i really enjoy reading them. as a mom to a 7 year old son who is on the specturm, i find your posts very informative and relatable. best, b
“No one gets on the evening news for sitting in doctors’ waiting rooms with an anxious child. But whether waving a sign at some eager-to-get-a-good-ratings-story-Manhattan-reporter or guiding a child through a gauntlet of puzzled looks, is your preferred kind of activism—whether you wish to chase a discounted theory or get on with it, and do the best you can today for the child you have today here, in front of you, now, activism is as activism does.”
Bravo! This was a wonderful post!
Structure is everything. Summer days with no school have a different sort of structure; library visits, day trips, appointments, and more. No one gets on the news for it, either. Great post!
Everyone is SO paranoid these days about everything. It started with the current administratin and continues with our president saying just yesterday “we have to remain on the offense against our enemies” (sic) or something like that. People are jumpy for no practical reason. Odds are the terrorists are not lurking in the NJ pool you frequent.
Or lurking in the NJ Meadowlands……….
And surely parents can be active and advocate in more ways than making jejune graphics like this on Age of Autism.
Sharon, always love to follow your family on your various voyages!
Erin, So far Charlie is spending today asleep—it’s 10.30am and he’s still not up. Planning out the next two days for him and my husband already.
Just got back from vacation and grandma and grandpa’s cottage, and while there, we did notice that E seemed to be stimming a bit more, and that he’s been a bit more jumpy now that we’re back (but that could have been due to the loooong car ride!) With him, it’s always seemed to be the lack of activity rather than a lack of structure that he had trouble with, but maybe it’s one in the same- we’ll see how this week goes, now that he’s back in his therapy program.
Kristina, I guess I never thought of the everyday things we do with our child as activism on a small level. But it’s so true. Lately, I have become tired to trying to get Casey to stop stimming and talking to himself out in public (and he holds his ear while he does it, like an announcer) and I sorta just let him do it. I figure if anyone is curious, they can ask, because I get really sick of getting on my child to fit societies norms all the time! I guess that’s activism huh?
Activism to me implies action for societal change and community-building beyond that of simple “protesting”, which seems to be the commonly used synonym. Protesting is exciting and heady stuff but it doesn’t exhaust the possibilities. In relation to autism and disabilities, the vaccine protests and political action seem to be the most visible and media-worthy, but in the broad picture to me seem tangential.
Assume, for thought problem purposes, that their goal is achieved tomorrow. What will have changed in regards to implementation and funding of IDEA & ADA, effective education, dignified housing, competent and effective supports, community inclusion, civil rights, and societal understanding and acceptance of difference? If the answer is “nothing”, then that seems to tell me what is being overshadowed the longer that particular topic is the locus of so much interest.
I put Matt to bed every night at 7:15, give him his dose of meds at 5pm to get this accomplished, so this is similar to Charlie sleeping in till 10:30 am.
What time do you give Charlie his dose of Risperdal? Does he take 1 x a day or 2?
The Optometrist could not do a eye test on Matt and not sure what the next step is.
He lost another tooth today chewing on cheese puffs during the drive home from camp. It was on the floor of the van where he sits, so he must have spit it out. I got out a hand mirror and showed him his smile, he seemed to like it. Both openings are bottom teeth.
I hope the eye appointment goes well. Also, the time of unstructure. We are getting ready for homeschooling. I was really hoping the Autism Center would schedule something for M. Still no return of my calls. I really hope they will be a resource for us.
Charlie’s lost a couple of teeth this year—-the looseness and wriggling seem to drive him crazy and before I know it there is blood all over and something in his hand, and he’s looking happier.
We give him 2 pills when he wakes up and one pill around 3.30pm, even if he wakes up late. Seems to help to give him the doses in those amounts and at those times of day.
@babs, have to apologize it took so long to post your comment—-and, eve more, have to thank you for your kind and sustaining words! it’s knowig so many other parents and “sympathetic others” are out there that makes all the difference.
AOA has a blogpost on activism, and when I started reading, I thought I might learn something…that maybe it wasn’t all vaccination awareness.
Disappointed. Shucks.