Saturday, April 28, 2012

Groundhog day 2

Let's see now, where was I?  I went to that meeting, and wanted to write about it.  Got distracted, but I will now sit down to write about "finding your voice".

At the previously mentioned public meeting, I got the opportunity to say who I was and make some comments.  I've never been good at speaking in public, and I get verklempt when I say, "My son Benjamin has autism."

I google Leeann Whiffen.  It turns out she wrote a book that describes how she and her family helped get her son past an autism diagnosis.


Distraction #2:  I immediately grab her book from the library and read it.  It describes how she put together an ABA program for her son that was 4 hours per day and included multiple therapists.  She took a big gamble, seeing as it was extremely expensive and took tons of energy, but it worked!  It also describes the intense feelings experienced by parents of autistic kids, the lack of sleep, the know -- all that stuff.

Caveat:  I'm jealous as heck that she got her child ABA so early.

This woman didn't just find a program... she put her own program together -- that's being a supermom.

We went through the system with Ben -- we did the state's early intervention program (she did that too, somewhat different in her county).  We had occasional visits with occupational therapists, speech therapists, and developmental specialists.  These were never more than an hour or so at a time, and were at most once per week.  We also had a "structured playgroup" and "kindermusic".

Our doctor also got us into the clinic for Children with Special Health Care Needs.  We saw a speech pathologist and a neurologist and an awesome OT whom I've run into a couple of times since then.   He's offered to write a guest post here, so maybe you'll here from him soon.  Ben's hearing was tested several times.  He's got some weird mid-range hearing loss, but nothing that should affect him more than mildly.

I brought ABA up to a psychologist at this clinic, but he told me that Ben's good eye contact meant that he didn't need it.  He said ABA was for kids deeper into the spectrum.  On his recommendation, we spent a year in the public special ed preschool.  They were nice, but Ben didn't make that much progress, bless their hearts.  I'd say that in the first 2 months of ABA, he made more progress than in the entire year before.

Leeann also tried lots of other stuff -- GFCF diet, lots of supplements, and even chelation.  We've been GFCF for a couple of years now, but I don't know that it helps autism.  We think Ben probably has a food sensitivity that we avoid when we're GFCF.  It's one of the next things I want to figure out for him, because it would be nice to expand the family's diet a bit.

Supplements?  Well, both my kids get omega-3's and a multivitamin and when they're sickly, they get vitamin C.  Ben also gets some extra calcium because it's easy to get a deficiency on the GFCF.  Leeann went quite a bit further, following the advice of Dr. Bryan Jepsoson and  attending DAN conferences.

Chelation therapy?  That's going just a little too far for me. 

Leeann also devotes a goodly number of words to immunizations and hints that her son's autism is related to that.  I had a feeling that would be the case when I saw Jenny McCarthy quoted inside the front cover.  Here's how I feel about that.

I'm curious what Leeann's stance is on immunizations and GFCF and so on now that she's a couple of years past an autism diagnosis.  I will say that I'm impressed as heck at this woman.  She perceived a threat to her child and at great risk to herself and her family, she took a shotgun to it.  One or more pieces of that buckshot did the job and her kid can make his way in society.

To top it off, she hasn't stopped... she's out there advocating for kids.  She and other amazing moms parents that I've met in the past couple of years.  Thank you, Leeann Whiffen.  Thank you, amazing parents.

So much is unknown about autism and it's so complex that I have this nagging feeling that 100 years from now, people will look back and say something like, "little did they know, autism was two separate conditions, one caused by air pollution, Motrin, and a genetic mutation common to fathers over age 35, and another caused by vinyl floors, McDonald's biscuits, and the common cold."  My head in a jar will occasionally shout out "Damn you, McDonald's!  Why did your biscuits have to be so tasty!"

We live in an age where information shoots out of a fire-hose.  It's not just water that comes out of it,  there's snake oil and ... darn it, I don't know where to take that metaphor.  Anyway, if you have a kid with autism, evidence-based is the way to go.  Intensive ABA therapy is currently the only thing that seems to help.

Next up:  Distraction #3.  You may do your homework by googling "what's wrong with autism speaks".  Also download the reddit app for your smartphone.

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