Ramblings

The autism parents community is REALLY fragmented, its kind of difficult to watch.  You'd think everyone could just get along.  Without all this infighting, we would be a force to be reckoned with.

I get frustrated alot with the "neuro diversity" crowd - the ones who think that Autistic kids are not sick, they're a new deviation of normal and should be celebrated and supported.   I am clearly in the BioMed Warrior Mom camp.  My kid is sick and we're doing everything we possibly can to help him recover.

(An aside... its funny, when i first started this blog, I spent a lot of time over at Hopefulparents.org - reading about parents of children with all sorts of disabilities from a perspective of giving hope.   I haven't been there in months.  I now spend that time over at the Thinking Moms Revolution.  I've clearly evolved)

Today alone I read two blogs about the divisiveness in the Autism community - both are worth reading.

First, from a blog i've frequented for years:

"While I believe autism is born of environmental injury, I also believe there is more going on than meets the eye, on a spiritual level. I believe souls are more powerful than we give them credit for. I believe on a soul level we all know what we are getting ourselves into. My daughter is powerful. My daughter has been my greatest gift. She has transformed me in every way. She has made me a better person. She has taught so many people so much in her young life as I write about her and share her with people, and as she moves about the world in her own beautiful way. She is not an accident or a tragedy or a mistake. She is not “broken.”

I also know it might be hard to wax so poetically about her if she were the poop smearing, hair pulling out, bashing head into walls kind of autistic person. If she never said “mama” or “I love you.” If she had no way of telling me where it hurts."

Dominic falls closer to the poop smearing, hair pulling out, bashing heads into walls category.  Not fully, and not all at once, but he certainly has done all of those.  Hair pulling and Head bashing are still on his list of tracked behaviors at Alpine that we see some of every month.  It took a LONG time for Dominic to say "I love you", and even now, its not spontaneous - its only ever a "la you too".  And he can't tell us where it hurts. He slipped outside the other day and came in  crying.  We thought he just bruised his knee until we stripped him and realized he'd actually cut himself open around his hip bone and was bleeding.   I could never possibly accept this as just his normal and not fight to get him improvements.  He's come LEAPS and bounds in the last year - who knows where he'll be a year from now. That we've even contemplated putting him in a regular daycamp for a week this summer is huge.


The other blog post I read about our community being split was over at Autism Spewage.  My first visit to this blog, actually.  She takes on another blogger who completely denies that anything biomedical can help autistic kids - denies the vaccines connection - makes horrible fun of Jenny McCarthy (who frankly has done more for autism awareness than anyone else in the country).

Its hard to be in such a split community.  Even at Alpine, there're different "factions" if you will of parents.  Those who do biomed until we bleed ourselves dry, and those who think ABA therapy is the only thing that could help...  Its bizarre.   I wish the groups could come together.