More Thoughts on Recovery, Again While Grocery Shopping
December 18, 2008 by Kristina Chew, PhD
Filed under Health
So yesterday I wrote “what comes around, comes around.” Siliconmom commented about this sentence, the last one in the post:
Is that one of the stages of being an autistic parent – that at some point you realize and accept that life is what it is?
For me, I would say, yes, very much, and that, too, hope starts with acceptance.
Charlie was around 5 years old when I let go of feeling I had to save him from, and fight against, and do the warrior mom thing. I’m not saying I don’t have moments when a shadow of the old “fightin’ spirit” passes through me (pre-IEP meeting, for instance, or when you get The Stare-’n'-Shakes-Head Combo in the supermarket). Being Charlie’s mom is not about doing everything I can to “take the autism out of him,” but rather of loving him as he is, for who is, no matter what.
Just over a year ago I wrote down some thoughts on recovery while grocery shopping. Kev at Left Brain/Right Brain blogged recently about some claims on Age of Autism about “‘‘hundreds of case reports’ of recovered children’”; these children’s “recoveries” was said to have occurred thanks to doctors following the Defeat Autism Now! protocol.
I have a xerox of the original DAN! protocol in a box of files, a rather dusty box of files, as Charlie was 2 1/2 years old when we were “doing our research” about those sorts of biomedical treatments. (In fact, I was paging through that xerox of the original DAN! protocol—we’d given the original booklet to Charlie’s pediatrician in Minnesota, where we were living when Charlie was diagnosed—when I was seen sitting on the porch of our house on this show.) While numerous other diets, supplements, treatment practices have been suggested as methods to “defeat autism” since I sent away for the DAN! protocol in 1999, the motivation of parents today in using such treatments is, I would think, unchanged. We all just really, really, really want to help our children do their best in this life, especially in their life when we are not around to help them, that they can. Biomedical treatments hold out immediate, visible results; education and teaching plod along and produce small gains that can get lost in the data collection and then it’s back to square one as programs get put on hold.
And who doesn’t want to see the progress, to get it quick, not to have to see their child go to “more special ed” instead of “kindergarten without an aide”?
I mean, we do really rely too much on the microwave oven.
Middle school, self-contained classroom, all special ed and one-on-one with the teacher:student ratio: That’s not the scenario that parents get promised when they sign the contract for intensive in-home therapy for a just-diagnosed 2-year-old.
it is the scenario for Charlie, my middle school, self-contained classroom, all special ed, son. I started the week with a pained reflection on Charlie’s middle school blues. The week (and the school year) are not over but, after a Tuesday home visit and long conversation with Charlie’s teacher, the blue is looking more like blue sky blue. Why and how, I’ll go into more detail later—suffice it to say, figuring out Charlie’s learning style take trial and error, and time. Teaching Charlie requires adapting one’s teaching style to him and his way of learning.
What comes around, comes around.
Fitting, then, to end this post about recovery by noting a few more thoughts about the topic, also while in the grocery store. For a variety of reasons that involved a lot of hot- showering in a relatively short period of time, Charlie and I ended up at the grocery store as it was nearing 7.30pm, rather late. Charlie got a shopping basket and went to look for sushi and into the bakery section, and then I saw that he had stopped, and was leaning forward to examine a display of DVDs, one by one.
That is to examine the purple cases—purple, the New York Times informs us, being the new pink—of certain DVDs with great care. You guessed it: They were Barney DVDs. Charlie went through each one, and walked around the case, and ignored my requests to look for otheritems. He circled round to the front and sifted through the Pilates DVDs, just in case there was some hidden DVD treasure. And when he’d looked his full, walking away backwards, eyes still locked on those purple plastic cases—-he picked up the shopping basket and we continued our tour of the grocery store.
No fuss, no muss, just peaceful Wednesday evening shopping, Mom and Charlie-style, with a bit of Barney to boot.
Recovery from autism is something we shouldn’t be worrying about. My son is autistic and the good times that we have — no way can we let thoughts about irrealities distract us from the goodness of every day together.
good points Kristina, and I have to say that Casey is really going through a serious reimmersion into the whole Barney series (good or bad, it’s a new interest, which is always welcomed)
I am reading right now, per suggestion from Marla Baltes the book “Autism Life Skills” by Chantal Sicile-Kira. It’s not telling me too much so far that I haven’t already heard or discovered on my own, but has nice refresher moments. Having said that, it has a point in it that really hit me, that many of the adult Autistics the author interviewed for the book, of course did not have the therapies and knowledge available when they were young that we have today. However, they have learned, virtually on their own, how to cope with many of their issues! That really gave me much hope, and made the book worth the 12 bucks I spent on it, right there! If that doesn’t give us some hope, and a little respite from a lot of worries, I don’t know what does!
I’d want my children to function well in their environment, but aside from that, I don’t see where “recovery” from autism is a helpful idea.
Guess what?
Now that I’m homeschooling Elf and he isn’t in a class of 27 kids, he stays on task with almost no problem behaviours. Oh, and since we avoid crowded places, Elf hasn’t freaked out in a crowd in a long time! Must be that he’s totally “recovered from autism,” and instead of the magical diet/chelation or whatever, all I did was change his environment.
Doggone it though, those “more severe” autistic symptoms, such as I see in my other two on the spectrum, don’t go away so easily. Otherwise, do you know how rich I could be hawking my “cure?” Do ya? :]
Well, and as for the head-shaking, at least they’re not up and calling your kid a brat. Maybe that’s progress! Woo-hoo! :p
Hi Mrs. C -
I’d want my children to function well in their environment, but aside from that, I don’t see where “recovery” from autism is a helpful idea.
Now that I’m homeschooling Elf and he isn’t in a class of 27 kids, he stays on task with almost no problem behaviours. Oh, and since we avoid crowded places, Elf hasn’t freaked out in a crowd in a long time! Must be that he’s totally “recovered from autism,” and instead of the magical diet/chelation or whatever, all I did was change his environment.
Well, as long as you have confidence that you’ll be able to control their environment to the correct specifications, for forever, you are in great shape! The wonderful part about this solution is that I’m sure in ten, twenty, and thirty years keeping your children home all day and away from crowds will still be a straightforward solution. What a relief.
It’s a true curiosity why the AAP hasn’t just started telling people not to worry about autism any more and to just take up no nonsense solutions to pervasive developmental problems like you have. And why on Earth are we wasting dollars and researcher hours on understanding autism, much less recovering from it?
By the way, there are at least five studies showing that children with autism generate more robust inflammatory immune responses when exposed to wheat and diary proteins than their undiagnosed peers. I’m sure it’s just a complete coicidence that some parents notice changes in their children when those proteins are removed though.
Doggone it though, those “more severe” autistic symptoms, such as I see in my other two on the spectrum, don’t go away so easily. Otherwise, do you know how rich I could be hawking my “cure?” Do ya? :]
Well, at least you aren’t wasting any time worrying about addressing any of them; after all, I’m positive all the awareness we’ve been getting lately will lay the groundwork for a society that will take care of your childrens needs when they are fully grown. After all, society has been really good about that in the past; I’m sure more great services for adults are just around the corner once we get past this pesky financial crisis, and start working on the national debt, and pay for the boomers social security, and stop importing oil. Right after that, huge increases in social spending!
Now all that is left to do is crack jokes!
Good stuff.
- pD
“that many of the adult Autistics the author interviewed for the book, of course did not have the therapies and knowledge available when they were young that we have today. However, they have learned, virtually on their own, how to cope with many of their issues! That really gave me much hope”
Which I think is something we all have to remember, regardless of the severity of our children’s disability – they are all capable of much more than we probably give them credit for. And we need to relinquish control sometimes so that they can learn to be in control of themselves.
pD – My point was that, due to changing our environment, it APPEARS that Elf has “recovered.” You DO realize we’re homeschooling because my child was locked in a closet on several occasions?
You’d better believe I’m controlling the environment, considering the alternative. It sure would have been nice to have had some help in acclimating Elf to the “real world,” but it seems like public schools are all about locking children up and punishing them rather than giving them the tools they need to succeed in this life.
The point I was TRYING to make was that sometimes there is too much focus on cure or “recovery” when really, children are helped immensely by a change in the environment or some sort of help to deal with things. I’m not really a recluse or hermit, though reading my comment again it sounds kinda like that. I think there are many things out there that may help, including diet and therapies, but I don’t really believe in “recovery” or cures for autism. I mean, we can go to the park or pet store, but maybe the crowded concert hall can be skipped. It’s just too much right now.
Elf may at some point need some sort of transition services so that he is able to handle things like going to the grocery store without his mom. Right now he CANNOT do that. Even if the economy totally tanked and there were no money for these services, wouldn’t lessen his need for them later. I just don’t see how sending this child to public school NOW and dealing with the abuse is going to help. What were you suggesting? I’m not getting that.
And yeah, I was kidding about getting rich on easy “solutions” for autism. Sometimes you have to laugh or you’ll cry. And we are doing things for these other children that I didn’t write about, but I do wish there were other options out there.
It would be nice, anyway.
I think there are a lot of unknowns out there and the focus should NOT be on recovery. I think people who are autistic and/or care for people who fit that description should be working together to help find more therapies and things that will help.
Hi Mrs. C –
My point was that, due to changing our environment, it APPEARS that Elf has “recovered.” You DO realize we’re homeschooling because my child was locked in acloset on several occasions?
I had no idea; and I think that is absolutely horrible.
You’d better believe I’m controlling the environment, considering the alternative. It sure would have been nice to have had some help in acclimating Elf to the “real world,” but it seems like public schools are all about locking children up and punishing them rather than giving them the tools they need to succeed in this life.
We seem to be in agreement again in some respects; except your point concerning public school is precisely why I find it so insane to joke that the notion of recovery is a fools errand. I have very little faith in our public institutions getting measurably better in our children’s lifetimes; if we want them not to suffer similar fates in the future, when we are gone, recovery is, in my mind, the much more likely alternative; no matter how remote.
The point I was TRYING to make was that sometimes there is too much focus on cure or “recovery” when really, children are helped immensely by a change in the environment or some sort of help to deal with things
I certainly didn’t get that point from your post, my apologies. But likewise, there are other children that are helped immensely by treating the biological nature of autism. Making light of our growing knowledge in this area helps no one, and indeed, perpetuates the idea that autism is ‘all in the head’, when in fact, nothing could be farther from the truth. By way of example, imagine if I proclaimed that my son progressed, seemingly recovered, but it wasn’t because of idiotic notions of changing his environment? Not only would I likely be wrong, but I might convince another set of parents new to autism that taking actions to control their child’s environment was a poor mechanism for addressing their childs problems. How would this make you feel?
I think there are many things out there that may help, including diet and therapies, but I don’t really believe in “recovery” or cures for autism….What were you suggesting? I’m not getting that..
I am suggesting that making light of the possibility of recovering our children from autism is a bad idea; one with ideas I don’t think are benificial for a great many people who already don’t understand autism to hear from sets of parents. It ties directly towards your experiences with the school system and my concerns over our societies lack of ability to appropriately care for our children in the case that recovery does prove impossible. The more people out there that think parents don’t find recovery a laudable goal, the more idiots our children are likely to run into. They’re going to run into plenty as it is; we don’t need them running into folks that came to the belief that autism is no big deal because after all, their parents don’t even think recovering their children is important. I am suggesting that actively not trying to recover our children is a horrible idea, because the alternative; the kindness and competence of our society is a poor, poor substitute for being able to function effectively in whatever society is in their future.
However slim you might view the potential of recovery, do you honestly believe the likelyhood for our society to care for our children as we’d please is larger? If not, welcome on board.
Sometimes you have to laugh or you’ll cry.
We agree again!
Q: How many autistics does it take to change a lightbulb?
A: None. Autistics don’t like change.
- pD
AHHHH…. Pd, unfortunately, we’re very much on the same side (helping people on the spectrum) but had been talking “past” each other because words had different connotations to each of us.
I’d like to see more speech in my younger child, etc. I guess words like “recovery” set me on edge because the school staff seemed to feel that since Elf can speak and is “intelligent,” that he must have been manipulating and basically making the whole thing up.
It’s just been a hard road. And the story of the young man who died in the “recovery room” has been very hard for me this week. THAT COULD HAVE BEEN ELF, if I had left him in school.
So, I work toward more skills for my children, but also wish there were acceptance for my kids the way they ARE. :]
“[M]any of the adult Autistics the author interviewed for the book…”
Based on our own family’s experience, I think that one of the most strategic things for a family new to an autism diagnosis to do, is to get to know a wide variety of autistic adults — through reading and interactive contact. Doing so will help frame the future the family is moving into in terms of what can be, what should be, what should not be, and what is. And more importantly, the family will meet and come to appreciate a variety of exquisitely human acquaintances. Putting names and faces to “autism” makes it less of an amorphous bogeyman to be feared.