2/06/2011

Adding As: Acceptance, Accommodation, Appreciation and as important, Accountability

More than anything, I want my children to thrive, to grow, to achieve the level of independence they are capable of and to walk in the world.

We haven't gone too far down the woo trail to get there. We did start the GFCF diet after reading the compelling anecdotal story by Karyn Seroussi. Now, I have no problem with folks who have allergies using the diet. I have no problem with people deciding to restrict certain foods. I'd argue that it's important to make sure they eat a balanced diet, but beyond that I don't care what you eat or why. I say our journey of GFCF was woo-based because of the reasons it was implemented and that the research on whether gluten or casein turn into opiates in the bloodstream and that one can recover her child from autism by using the diet. **I'm not saying other people's use of GFCF is woo unless they think gluten and casein turn into opiates that drug their kids. I don't care what you feed your kids. Although, my thought is if you're going to take foods away from your kids on an idea, you ought to take them away from yourself, as well. True issues: not woo.**

Oh, and full confession, we once tried Ojibwa tea when I was in my herbal medicine phase. Nasty stuff. Umm, I also have some lovely crystals, too. :) And essential oils. The oils smell lovely. The crystals are pretty. I don't think they do anything other than enhance and improve mood because smelling the oils and looking at the pretty rocks make me happy. The Ojibwa I wouldn't even wish on my worst enemy. Ick and double ick.

At any rate, my point was that was as close as I got to woo for autism: the gfcf diet. That's it. And again, I'm not bashing anyone who's using it. More power to you. I hope you know that rice flour is the mortar holding the Great Wall of China together, though. Explained a lot about my baking. I loved baking. I did. Before GFCF, I made my own pasta. I baked my own breads and cakes. Ah, I loved it. Loved cooking. Four years of GFCF and baking things that no one really appreciated, things that made me think I had ALS because I couldn't swallow...I've never recovered. It's been 2 years and 40 plus pounds since we walked away from the  GFCF diet and we've enjoyed the hell out of ourselves. And there's been no regression. The kids are fine and continuing to progress and love the occasional treat of McDonalds.

Other parents go further into what I call woo; their need to do anything to help their kid certainly understandable. I can understand that need, that desire. But having started my woo with Ojibwa tea (which I drank with the boy), well, it was a bit of a deal breaker. No proof, just anecdote. And it could cure anything, including cancer. Once I got over my attraction to the thick packet of testimonials (they are convincing) and realized my aversion to the Ojibwa wasn't going to be overcome (and if I wouldn't drink it, no way was I making the boy drink it), I began to work on improving my critical thinking skills.

You could blame this all on Ojibwa tea, in a way. And rice flour.

My thought is, if you want to follow woo for your kid (or if it's more palatable to you, alternative treatment), if you're going to do it to your kid, you first have to do it to you. Chelation suppositories? First you do it for six months. Nicotine patches? You first. Restrictive diets based not on allergies or because of epilepsy? You first and you along with your child. Fecal transplants done at home and based on what you read on a yahoo group? You first.

In other words, accountability. Own your actions by owning them, living them. If it isn't standard of care, based on evidence, and you're ordering it off the internet or following it because you read a book, then do it to yourself first.

Parents need to take responsibility for the decisions they make for their children. They need to hold themselves accountable. And they need to think past their desperation to their responsibility to their children to not harm them. Parents ought to have compelling reasons beyond testimonials for the treatments they select. What are the risks? Who's selling the treatment? What claims are they making? If they're going to be paranoid about modern medicine, they ought to be doubly so about unregulated companies offering to cure their kids.

It occurs to me as I write about parents being held accountable, that the other As apply to them equally as they do to the autistic individuals we've argued deserve acceptance, accommodation, and appreciation. People's humanity, period, means they deserve to be accepted as caring, feeling individuals worthy of compassion. We've all got issues, and within our families, we tend to accommodate these issues. Our workplaces accommodate (some better than other) some of these issues, as well. Everyone deserves to be appreciated and cared for.

And all people should be held accountable, to the degree that they are capable of, for their actions. All people. Note, I said to the degree capable,. And I didn't say a word about laws. What I mean is this: my children have to learn what behaviors are acceptable and what behaviors are not. They don't get to go beat the crap out of people and blame autism. They don't get to treat people like crap and not  be held accountable.

No, they don't always get what the appropriate behavior for the situation is, but it's my job to teach them what is and help them practice it until they can comfortably engage in the appropriate behavior. While I'm doing that and they're working to master the skill, it's also my job to get them the accommodations while we work on that skill. And it means, that when they do something that isn't okay, they have to take responsibility for it. Even if no harm was intended, if harm was done, the attempt to make restitution must be made.

Now, they're on the spectrum. They do the best they can, but they don't blend. They don't do the socially acceptable behavior without a lot of prompting and a lot of work, and sometimes it can be interesting as hell to take them to town. They're not bad kids, though, and so their behaviors are more related to stims and the completely unavoidable honest blurtings and the occasional meltdown. And those I'd argue, if they aren't hurting anybody, are accommodations that can be made. If my Rosie wants to sing in Wal-mart, well, isn't that a treat for all? She's a happy girl who thinks she's living a musical. Deal with it. :)

Accountability is one of the most important lessons  I can teach my children. It isn't an easy lesson. It's one that we struggle with each day, but it's one I am determined they learn. They must own their actions, intentional or otherwise because the wider world is going to demand it. Autism can be an explanation and it's often a really good one that gets the accommodations needed, but it should never be an excuse.

We have an obligation to our children to explain to them why some things they do are not okay, and that's to all our children. That's parenting. Period. We're trying to instill civilized behavior into our children, regardless of any special needs or extra issues they might have.

We have to work with them to get them to temper their black and white thinking, which is not an autistic-specific trait and is widespread in neurotypical people, as well, and we have to teach them that while it's okay to believe strongly, it's not okay to trample over other people until those people capitulate. That is unacceptable behavior in anybody. That's the behavior of a bully. Harassing people, intimidating them, calling for other people to harass them until they believe the way you do is the behavior of a bully. And I don't care who you are and what your issues are.

Accommodations should be made, attempts to communicate how harmful and hurtful that behavior is should occur. But when those attempts are unsuccessful, when the behavior continues unabated, the person is accountable for his actions. It doesn't matter that the person believes strongly. It doesn't matter that the person thinks he's in the right. All bullies do. We all act out of the certainty that our position is the right one.

Accountability is necessary. If we respect people as equal, we hold them accountable for their actions. It's  the price that must be paid to be a fully participating member of society.

12 comments:

kathleen said...

Well said. Accountability is absolutely important. I don't want anyone ever to dismiss certain behavior from my kids simply because they are on the spectrum. As they get older-I don't want people to place them on some sort of disability pedestal saying-well they ARE on the spectrum..so therefore what they say and do can not be questioned...and instead is revered. THAT is not acceptance-it is NOT inclusion..it is not accommodation-it is disabelism..and it makes me very sad.
Right now-as a parent I teach them right from wrong. I teach them that if they want to be respected-they need to learn how to respect. These are not always easy concepts for them..but they are learning.

farmwifetwo said...

Well, I'm going to tell you that the reason GFCF works is b/c Ped's refuse to acknowledge that children with autism can have IBS too.

And that legitimate scientists in world renouned Universities are proving it http://www.psychology.uwo.ca/autism/index.htm I go to hear Dr MacFabe speak on Wed night. Also my alma mater just had an article in their alumni mag this month and they are doing the same. It's an aggie school, food research and a poop lab. http://www.cbc.ca/health/story/2007/09/27/autism-study.html

I have one that had cronic diahhrea - every day, more than once/day, rashes that bled. The same one had nightmares or terrors every night and terrors after most naps. EVERY DAY. I had one that when I took the dairy away it vanished in 48hrs. I had one that when we put a tiny bit of butter on a freezer pancake went insane for 24hrs. He sat in the playpen, the little one and I on the floor watching and screamed and slammed his head for the morning. Calmed, ate lunch, had a nap, terror, and went eerie calm. That evening he was on the front porch with his Dad, watched me through the kitchen door, leaned over the concrete stairs and slammed his head off of them - goose egg and bruise. He was 2.5yrs old. He was 9 before we spent a year weaning the dairy back into his diet and he still drinks soy milk and eats very little cheese.

You'll never convince me it's "WOO".

It never worked for the autistic one b/c he's never had the dietary issues of his older bro.

I've also lived by the rules "autism may be the reason but it is not the excuse". We work at it daily for both of them and the eldest is off to social skills camp for a week this summer to work on "making friends" skills so we'll get there one day.

I've also always held up my end of the school stuff. I don't have any use for those that post or say "why do I have to do it, they're the teachers". Excuse me?? You are the parent. You do wish to be part of the process?? Why should they bother if you won't?? The school's know it too... for a while they didn't like it, but now they have learned that I will compromise, that I don't expect miracles, and I am there to help not make things more difficult for them. We are a team... they respect that.

You want acceptance to happen you have to COMPROMISE. I am tired of those parents and adults with autism expecting society to cater to them. I am tired of professionals tossing up their hands saying "we can't". Problem is nobody wants to compromise... but I can tell you from experience without it you have and get nothing.

It's still not perfect, I still have things I dislike, the system still "sucks", but we have compromise and the children are happy, safe and learning... which is 9/10's of the battle.

KWombles said...

FW2, I'm not saying GFCF diet for legitimate reasons is woo. I said the reasons we tried it were based on woo reasons (if the people promoting the diet for those reasons, which were disproven, had altered their viewpoint on the diet and recovery from autism, it wouldn't be woo; just a debunked treatment--they continue to promote the diet and the failed science behind it).

There are foods I have to avoid unless I want to deal with serious IBS or GERD-related issues. Those aren't allergies and they aren't even the so-called intolerances that DAN! docs are claiming they can test for. It's like not saying one is allergic to broccoli or beans because those foods give one gas. No, they don't agree with the person. Totally different. Choosing to avoid foods that don't agree with a person's digestion process makes sense. Saying one can cure autism by avoiding the foods and cause autism again by ingestion of the foods is woo. :-) Hope that clarifies.

Yup, compromise is accommodation, which has to be a two way street. :-)

Sirenity said...

Lovely post Kim! Hopefully we can all teach our children to have that self awareness to be able to feel accountable for their choices.
Fat chance on any of us teaching other adults to be that self aware though-seems to me that when an adult lacks that sense of accountability they also lack that awareness-they lack the ability to understand that they can (and should) learn and grow.

farmwifetwo said...

Autism isn't cured by the removal of certain foods, but it can improve many of the symptoms. We never thought it would cure and we've never advocated it as a cure.

After we removed the dairy we realized that he had been litterally stoned. He leaned and didn't sit straight until he walked. He rolled only over his left shoulder for months - I had to turn him around at the wall so he could roll back. He face planted once into the fireplace and another time into the greenhouse forms... he never even tried to put his hands out. He head slammed daily and brutally hard. The moment dairy was gone he started "seeing" his environment and reacting "normally" to it. His severely autistic bro never did these things. He hit every milestone correctly and on time. He never head banged, his gross motor skills were all "normal", and until he was 3 all we knew was that he was non-verbal. Then the stimming, social withdrawl became noticable.

Now, saying that by no means has it cured. But, if you feel like crap all the time, if you feel woozy and uncertain, if you have difficulty focusing.... You cannot learn.

But we have spent hours of private speech therapy, homeschooling after school weekends/summer, parenting and rules, library programs, scouts, swimming etc and at 11 we "pass for normal"... At 2.5yrs old we were told to be prepared that he would always be disabled and unable to care for himself.... Now, he'll be able to live life as he wishes.

No brain transplants, no behaviour modifications except to teach the same skills that all children should learn, and education.

GFCF helped and until Dr's are willing to test non-normally developing children for IBS etc instead of telling parents "some children with autism are like that" (direct quote from our first Dev Ped) it'll remain "Woo" to those for whom it never helped. I will thank Karyn for writing her book since at the time it was one of 2 books in the entire autism section of our county library system. I've since requested many other autism books and thankfully the library system has bought most of them.

Life in the House That Asperger Built said...

Yup!

KWombles said...

Glad it helped for you, FW2. :) My kids don't have any gastrointestinal issues. The diet was a waste of four years for them and me. The only reason we lasted four years is because I made the false causal association between Bobby learning to read after the diet started instead of considering that seven years of work and the leapfrog reading system that was recently bought at about the same time might have had more to do with it.

Seroussi's opiate theory was tested and shown to be false. Doesn't mean that kids with IBS aren't going to feel better and behave better when they do so. Those are separate from autism. Doesn't mean her kid didn't improve, either. Sigh. But the fact that her disproved opiate theory continues to be used and may cause folks to do something that may not help (but mistakingly be believed to have) is bothersome.

I really wasn't trying to get into an argument about the value of GFCF diet for some folks. I tried to make that clear. And I'm fine with disagreeing about it. I tried to make it clear that I don't care what people feed their kids.

Amy Caraballo said...

What I find disturbing about generalizing the use of any dietary or medicinal treatment is that we've eliminated any possibility that these kids are individuals. We do call it a "spectrum."

Our son is on a Soy limited, Casein Limited and Gluten limited diet because his blood tests show he has IgE antibodies fighting those things. These are blood tests that our local Children's Hospital ran. Not some crazy lab in North Jabip. Not some back ally "cash only" quack. A real doctor, real hospital.

I think parents need to take a step back, put the conspiracy theories away for a bit, and get some scientific laboratory tests done. A blood test ain't nothin for our kids to go through compared to some of the other things people have tried (chelation, HBOT, etc.)

Science is not fail-proof. But it's certainly a lot more accurate than guesswork.

Amy Caraballo said...

Oh...and of course how can I forget...

Correlation does NOT equal causation. If a child's symptoms of anything appear different after dietary intervention, this is considered "correlation". And correlation is speculative at best.

And sorry for going OT here...I know this was about acceptance. I just need to counter some misinformation ;-)

farmwifetwo said...

Leapfrog spent many a year in our house. We went through umpteen pens and 2 readers. We had all the movies. Excellent materials.

I never bothered trying to figure out the chemistry... never cared either. What it did for us is give us a "duh" moment. We did dairy fulltime for 7yrs or so. Gluten we started after 3 months and it lasted a year. We did discover he had difficulty with chlorinated water when he started part time daycare. Another "duh" since I had dated another farm boy and he and his siblings all had different degrees of difficulty with it. He can handle it now too.

K- floortime lite mama said...

i love your writing
u r sooooooo right

Anonymous said...

Actually, I do chelate myself too, as well as my child, and I know other parents who do so also.