Wednesday, May 8, 2013

So we got interviewed...

My friend who is a PhD NeuroScientist teaching at  Colorado College contacted me last week and asked if I'd be willing to speak to a group of college students taking a family psychology class about what its like to be a family dealing with autism.

I only had to think about it for half a second. It really is time for me to do more advocacy work, and talking to the young adults who will eventually be in positions of making policy around DSM6 is kind of important.

So they came over Monday night.  We purposefully scheduled it so Dominic would be in the thick of things and boy was he ever.  He was super silly, flirty with the female student, and very interested in the camera that the male student was using to video us (their project is a video project).  He spent a lot of time crawling under the tripod, sticking his tongue out at the camera and taking pictures of his fingers.  Their video is going to be interesting.   He has developed a new stim that we hate.  He runs around saying "spank you spank you" and slapping his butt.  This is courtesy of my mother in law who teases him by saying she's going to "spank you" and then laughing and tickling him.  Its proving to be difficult to break.  and of course, he did it constantly last night

They asked good questions.   We talked about the financial and emotional tolls on our family.  We talked about how isolating the diagnosis had been, that our social life is almost non existent and the reasons why.  They wanted to know where we'd found resources.  I said The Internet.   They were a little taken aback.   I also said that Alpine Autism Center locally had been very helpful, and that led to a discussion about how we stayed until we ran out of money. Then we talked about how I'd learned to stretch a dollar until it begged for mercy and how we'd had to let things in the house slide and were just trying to dig ourselves out.  We talked about how hard it had been for (local) family to adapt their thinking so that Dominic (and therefore us) could be included in family meals.  The example of my motherinlaw making him chicken, but stuffing it with bread, and then being offended when in wouldn't let him eat any.

They asked how it had changed us.  We told them that it made our marriage much stronger - that the little crap that bugs people just doesn't matter anymore because we have much larger things to worry about.   We told them about how it completely changed our parenting styles... how we went from the traditional "NO" to redirection actions, and showed them how much better it worked.  (and it did, Dominic redirected beautifully to a "hey come sit down" where ignored my "leave the camera alone" statement).  We told them about how we had patience now we never had any idea we could manage to have, especiallly with little stuff.

We talked a lot about how Autism is Medical, pathogenic really, and that when we started treating those underlying pathogens, we started making good progress and that we're so much further along now than we were even a year ago.

They asked what we hoped for Dominic long term.  And we told him that we just want a functional, independent human being.  We don't really care about a college degree, we want him to be able to have a job, and take care of himself as an adult.  I told them about the parents in the community who were starting to have to have their adult children legally declared children... stripping them of the rights of adulthood because of their disability.   We talked about the flood thats coming of autistic adults who age out of the school system and how our communities simply aren't ready.  1 in 50.   So in a small town, with a population of 20000, for example, that means in 2 decades, if we don't heal these kids, there would be 400 completely disabled adults who will have to be taken care of.  Thats probably  50 group homes.  I can tell you that kind of infrastructure just isn't there.

When they left, Dominic gave the guy a hug.  After all, he shared his camera.

And yes, I wore my Thinking Moms Revolution shirt.  They said they'd send me a copy of the interview video (which will just be for their class), so I may post it.

I didn't spend any time on the specific things that have worked for Dominic, but I did allude to our expensive years of DAN and that we are working now with our familly prac and doing things that are completely NOT FDA approved.  But I didn't give details. Wasn't appropriate for the setting.

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