Saturday, February 25, 2006

Now THAT was uncalled for...

In a town not too far from where our family lives, there is a fellow autism mom who recently published her first book. As a result, she is rapidly achieving celebrity status, and her name and the message she is trying to get out are now surfacing everywhere, as are various pieces of her writing. I've read her book as well as her previous writings (which I very much enjoyed), and I've heard her speak and, while she makes no secret of which side of the Great Divide she stands on, she's always come across as being respectful of other parent's choices, even if those choices are very different from the ones she made for her son.

Imagine my shocked surprise when I came across the following writing. While a good part of the article does focus on describing how SHE lost sight for a while of her child as a child and only saw him as a collection of problems that needed to be fixed, and while her intent probably was to caution other parents of autistic children to not fall into that same trap, that intent was completely torpedoed by how she choose to raise this issue.

She started this piece with a reference to that unfortunately 5-year old boy, Abubakar Tariq Nadama, and implied that this poor child's parents fell 'prey to the desire to push their [child] toward perfection, to develop every possible edge so that they might have it all.' And while that is a rather sensationalist and speculative view at best of what Abubakar's parents where trying to achieve - as we simply don't know what they were trying to achieve-, I am really upset by the factual inaccuracies in that first sentence of the article. Abubakar did NOT die as a result of a treatment intended to cure his autism. He died as the result of an incredibly stupid mistake made by his treating physician - a mistake for which I sincerely hope this physician will be held accountable. Just like any physician that makes a mistake of this magnitude, regardless of whether the patient was autistic or not, should be held accountable. Secondly, the treatment this child underwent, chelation, was not intended to cure his autism. It was intended to address his heavy metal poisoning. The writer of this article is an intelligent and articulate person - one can't help but wonder what her underlying intent was of starting her writing with such an inflammatory, and inaccurate, statement.

But then it gets even 'better'. In the second paragraph of this article, she describes her observations as to how some parents of neurotypical children in her town will go to great lengths to push their children to the maximum achievement, potentially to the point of destroying something in the child or the parent. She then compares this type of behavior to those parents of autistic children that will go to great lengths to cure their children. Well, regardless of whether there is a cure for autism or not - and that is something parents of autistic children will have to decide for themselves based upon ALL information that is out there and not just the limited information force-fed to the (ignorant?) masses by the CDC, the NIH and the AAP - those of us that so-called 'treat' our children do not do this to get that dream child we thought we were going to get, but to address our children's very real medical problems (like the ones I listed in yesterday's post). And we certainly do not treat these medical problems in a desperate attempt to get the child into that preppy Music School or Tennis Program. I find that 'suggestion' very offensive, and I wonder if anybody would dare to make a similar statement about a parent of a neurotypical child, where the parent is attempting to treat similar health problems with a similar drive.

In the remainder of the article, she gives a very brief account of the trials and tribulations her family went through with her son. I respect her for her openness and honesty, just as I respect the choices that she ended up making for her son. But that's all there is to it - it's HER account of HER experiences and the decisions SHE made for HER son. They hold little bearing on the choices that another parent of another autistic child needs to make. And while the article ends with a very valid plea, that 'the tragedy is not autism, nor is it children who don't achieve external signs of greatness; the tragedy is children who are not allowed the chance to be children', what greatly troubles me is the (unspoken?) implication that those of us that are not satisfied with merely managing the most difficult aspects of autism are not allowing our children the chance to be children. Au contraire - actively treating those conditions that quite frequently directly contribute to our children's most difficult autistic behaviors is ALL ABOUT allowing our children the chance to be children. But it may be that my definition and the writer's definition of what 'allowing our children the chance to be children' entails are fundamentally very different. And the writer is entitled to forming her own definitions based on her particular circumstances, just like I am entitled to forming mine based on my circumstances.

But I can't help but wonder what the writer was truly trying to accomplish with the statements and comparisons made in the first two paragraphs of the article. Were these really necessary? And yes, in light of the message she carries out in her public appearances, I had expected more respect for choices that are different from her own.

9 Comments:

At 11:03 AM, February 26, 2006 , Anonymous Anonymous said...

Isn't it interesting how Neurodiverse psychotics jump all over the tragedy that befell Abubakar but clam up when the subject of babies dying of SIDS which is really mercury poisoning is brought up? They also don't have much to say when drugs used to control ADD cause kids to commit suicide.
Nice blog. I'm surprised the psycho's aren't here to criticize you.

 
At 8:53 PM, February 26, 2006 , Anonymous Anonymous said...

grow up petra. susan has a right to say what she wishes, a little jealous perhaps?

 
At 9:54 PM, February 26, 2006 , Blogger Susan Senator said...

You're right, Petra, I don't know what the parents were thinking, and I have no way of knowing what they were attempting to solve. But how can we know that he did have heavy metal poisoning? Certainly it is called for in some cases, but some parents chelate without even knowing. I can't help but wonder if this death could have been avoided. I know, it is easy for both sides to jump and I am sorry to have offended you and others. I do respect your choices even when they differ from mine.

 
At 10:41 PM, February 26, 2006 , Anonymous Anonymous said...

OMG It's comments like the first one which make bio med moms seem crazy. It actually makes all parents of autistic kids look unbalanced. I read all of your blog, your oldest seems to be doing so so well. It seems like you are making him sicker than he is.

 
At 7:03 AM, February 27, 2006 , Blogger Petra said...

Thanks Susan, and thanks for leaving by far the most grown-up commment. Yes, we will never know exactly what the parents were trying to address. And the poor child's death probably could have been avoided, considering that physician's stupidity.

You are right, some parents (not just 'biomed' I would say) will jump to treatments without even knowing exactly what is going on. And that is very, very unfortunate, and very bad parenting I would say.

 
At 7:50 AM, February 28, 2006 , Blogger Susan Senator said...

Also, in the end, what you say is true: this is just my opinion. I based my conclusions about Abubakar on different newspaper articles I had read, one of which I posted to Commonbonds because it made me so concerned. I truly do understand that you and others who are chelating are trying to make your children well, not perfect, and perhaps my analogy was a poor one. As you know by now, I do not view Nat as being sick or in need of intervention, and we differ on that, and I thank you for raising these important issues.

 
At 12:19 PM, March 01, 2006 , Blogger mysamiam said...

I hope that you are able to find a peace and serenity in your journey with your family and Asbergers. I hope that in that journey you will be able to curtail some of the anger that you have, as it sounded in your entry.

I am a mom that is moving farther away from the biomed community. I am surrounded by families with autism through our services and therapies. I have always felt like an outsider, and have sat back quietly. The reason being that I have been shocked at a community (autism) so divided. A community that needs to come together no matter what.

I am personally not on the mercury band wagon, but I support families and the cause. I am even supporting some families going to our state legislation next week to encourage a bill to eliminate mercury in all vaccines.

But, I am a mom who has done the Gluten/Casing, Cod liver oils, B-complex, therapies, etc...nothing worked miracles for my son as my moms doing the biomed have said. The biomed road to me is scary. There are moms who won't put doctor prescribed drugs in their children, but will seek out chiropractors and others to provide minerals and other things to chelate or treat their children. Things not FDA approved or for even longer term effects have been researched.

We can talk till we are blue in the face about what works, causes, treatments, the fact is, we need to learn to embrace, love and accept our children for who they are.

 
At 4:26 PM, March 01, 2006 , Blogger kristina said...

My understanding of chelation is that it is a choice of intervention--like so many others--that parents do not consider lightly. Not that parents who are making decisions about lessons in classical Greek and cello are making "light" decisions, but the choices we autism parents face can truly take on shades of life and death, independence and institutionalization.

Thanks for your good words!

 
At 12:34 AM, March 03, 2006 , Anonymous Anonymous said...

As a parent whose child has done very well on a GF/CF diet and with biomedical intervention (as well as intensive ABA which is crucial)I hope parents starting out are not influenced by people like this. Just because biomedical interventions were not effective for her child,it does not mean that they would not be of great help to another child.

Keep up the great blog.

 

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