Friday, January 09, 2009

Oy...

Stupid comment of the day (regarding treatment or recovery from autism)...

"Once upon a time, [name removed as I do NOT want to link to where this person gets to spout off] tried to recover [..] son from autism, through educational therapies and biomedical treatments. As he's gotten older, [person has] come to think that focusing on recovery distracted from truly helping and understanding him. "

Newsflash.. helping your child recover (I prefer the term heal) and "truly helping and understanding" are NOT mutually exclusive parts of parenting a child with an autism spectrum disorder (+ other stuff). They go TOGETHER.

At the risk of getting a little defensive (tongue in cheek here ...):
So the fact that I chose to put my child on a diet to address his Celiac Disease + long string of food sensitivities is 'distracting from truly helping and understanding him"

So the fact that I chose to get to the bottom of his metabolic/mitochondrial dysfunction and chose to treat those dysfunctions with a a variety of supplements is 'distracting from truly helping and understanding him."

So the fact that I chose to address his immune deficiencies so he wouldn't be sick and miserable all the time is 'distracting from truly helping and understanding him."

So the fact that I chose to address his pancreatic insufficiency, the associated horrible (in)digestion, the esophagitis, the inflamed bowels, so he could actually EAT, so that the projectile vomiting stopped, so that he could actually gain weight and grow is 'distracting from truly helping and understanding him."

So the fact that I chose a multitude of remedial sensory integration and educational therapies for him to address his extreme sensory disregulation and to help him overcome and/or develop strategies to deal with his LDs is 'distracting from truly helping and understanding him."

So the fact that I choose to help him through modeling, coaching, prompting, scaffolding, etc become more and more confident and proficient in his daily social interactions is 'distracting from truly helping and understanding him."

So the fact that I choose to teach him coping strategies for his anxiety, his mood swings, his angry and aggressive outbursts is 'distracting from truly helping and understanding him."

So the fact that I am currently am implementing and researching strategies to help him deal with his sleep dysfunction is 'distracting from truly helping and understanding him."

So the fact ...
etc., etc., etc.

BAH.. HUMBUG....

Proof is in the pudding (allergen free, if you please) as they say. Salamander has progressed LIGHT YEARS from where he was in Kindergarten. Sure, he grew out of 'it', or "that would have happened regardless of the various interventions".

Whatever....

4 Comments:

At 1:19 AM, January 10, 2009 , Anonymous navywifeandmom said...

Yeah, I know what you're talking about; I saw that also.@@

And I'll add to that -

I suppose the fact that my daughter began sleeping through the night and waking up fresh and rested every morning with a big smile instead of cranky and miserable after maybe 4-5 hours of fitful sleep the way she did for YEARS before we began antifungal treatments was all a "coincidence".

I suppose watching the big, puffy bags that she had under her eyes disappear after just a week on Nystatin and the SCD diet was just "placebo" (although it is the best placebo I have ever seen because you can see the difference in photographs.

I have no problem with people who don't think biomed is "for them" and I am well aware there are people who tries it and it fails. What upsets me is somewhere out there tonight is a mother like me who cannot see the light at the end of the tunnel because her hyperactive autistic preschooler cannot sleep more than 3-4 hours a night and she might read that and believe that there is nothing she CAN do to help her child.

And that is what makes ME lose sleep, even though my daughter now sleeps.

I'm off to have a glass of wine with my hubby now that ALL my kids are sleeping THANK YOU, oh "quack medicine", for giving my dh and I our evening alone time back. If this is "quackery" I'll waddle all the way to the pond.

 
At 6:11 AM, January 10, 2009 , Anonymous silk said...

If you're referring to who I think you are, I have to say that person pisses me off all the time but I keep reading her stuff in order to know my enemies, to know what I might have to say or do in order to counteract the lack of autism awareness that she spreads. What I don't get is if the one thing we can all agree on is that if you've met one child with autism, then you've only met one child with autism, then what the H is this person with supposedly a really good education doing going around telling everybody that because recovery didn't work for HER child, that it's a big crock for ALL of us? I guess advanced degrees don't keep the smartest of us from doing irrational things. I can't help but surmise it's all bitterness.

I love your blog Petra, I think you are doing a lot to counteract a lot of the misinformation that's out there, and I appreciate that. The only way they can win is to shut us up. I tell my story to every one that I can. Both my boys have autism, but only the one that was vaccinated got as sick as a dog. Thank goodness for him that I didn't listen to anybody who told me there was nothing I could do about it.

 
At 12:43 PM, January 10, 2009 , Blogger Petra said...

Navywife - well, didn't you know that all those improvements you are seeing (and that I've been seeing) are not really improvements at all? That they either just happened and that they would have happened without 'the voodoo'? Or that all those issues we claim we saw are all figments of our "Munchhausen By Proxy" infected brains?
Tongue in cheek, tongue in cheek...

You know what you know, I know what I know. And that's all there is to it. And you hit the nail right on the head as to where I have the problem. By this well known person spouting off [..] believes, the person may stop a 'freshly diagnosed' parent from seriously looking into the various biomed options, and have their HOPES taken away, and nobody, NOBODY has the right to take hope away from another parent.

Silk - thank you for your kind words. Heck, I'll keep writing about what goes on here, what matters to me. If people read it and get something out of it, that's good. If they decide that it's all 'poppy cock', no skin off my back either. It won't change my boys' story, it won't change what I do for and with them. And you are a bigger person than me for continuing to read that person's ramblings (and I agree, big fancy degrees do not for intelligence or common sense make). I just can't - I get so 'effin' pissed off that I burn up way too much emotional energy - energy that I need to fight off the 'enemies' I encounter here on a daily basis. And to clarify, autism (as per the DSM-IV definition) is not the enemy to me, it is simply a symptom of all the stuff that has (and still does) gone wrong in my kids' bodies, that continues to make them 'crash and burn' (although TG that happens a lot less than it used to). The underlying illnesses, disorders and dysfunctions that keep them from living life like regular kids can do without thinking about it, THOSE are the enemies (and I will keep battling those for as long as it's gonna take).

Ladies - keep fighting the good fight.

 
At 2:11 PM, January 10, 2009 , Anonymous navywifeandmom said...

Petra, this dad here on Youtube sums it up very well with this video "Biomedical Interventions and the Space Shuttle".

Normally I don't like watching Youtube Videos of people talking because it bores me, but I do like all this guy's videos that he has done about autism and his son. I haven't even gotten through them all.

http://www.youtube.com/watch?v=jRHizP9HwZM

 

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