The social network for autism moms

Here’s my thing with the puzzle piece:  You can’t connect two pieces that are identical.  You need a complement.

This past weekend was the annual Bay Area Autism, ADD and ADHD Outreach Conference.  Last year I spoke about Connor’s recovery from autism publicly for the first time.  This year, the second time.  I think my talk went pretty well.  I didn’t cry this time.  🙂

Just before I spoke, a man who has a social networking site for parents with kids with autism pitched his product and presented 10 Lessons learned from 25,000 autism parents.  He polled his site users and had a nice little list of things like: find other moms (hence, his site), take time for yourself, make your marriage a priority, and where best to spend your money.  And this is where things got interesting from my particular perspective.

He had a lovely graphic that showed 0.01% of moms on his site ranked biomedical intervention as a top intervention.  39% ranked OT as the top intervention.

Come again??

0.01%.

Out of 30,000 parents, 3 thought biomed was a top intervention.  And he took pains to let us know that he had to lump all that stuff–diet, chelation, HBOT–into one category to even get that high a number.  “So you see, not much bang for your buck,” he said, with a wink and a knowing smile. I think he was trying to connect and “get it.” His site looks great and I’m sure it’s helpful to a boatload of parents, but something didn’t sit right with me. FWIW, he’s not an autism dad, he’s an autism uncle with a business plan.

I was up next and gave a nice little presentation about using biomedical interventions to recover my kid.  So, yeah. Bang for my buck = biomedical.  Does that make me the 0.01%?

I just don’t think so.  I know I swim in biomed-friendly waters, but I know several recovered kids, have heard about more, and, further more,  know many, many kids who have improved in ways their parents didn’t expect.  Even if it was just getting an 8 year old potty trained after cleaning up the kid’s diet diet, or getting a a full sentence after introducing MB12, biomed got good marks with these families.  And I certainly don’t know 30,000 families.

After ruminating for a day or two, I remembered something else he’d said about the parents on his site.  They want to hook up with parents who have kids just like theirs. The more I thought about it, the more I realized that there was another, unspoken level of connection.  Moms want to find moms just like them.  Social networking lets people curate or edit the information they see.  They can also exclude information they don’t want to see, essentially allowing them to construct a little mirror-lined room that reflects back exactly who they are.  Comfort zone accomplished!

Autism can be scary.  Swimming against the current of predominant AutismThink is scarier.  No kidding.  But missing real opportunities to help your kid?  THAT keeps me up at night.

I came away thinking that the moms on his site weren’t very supportive of biomed.  The biomed moms kind of get squeezed out. A quick read through just had “we’re trying the gluten-free diet for a week, but I don’t know…”  Even though Website Guy kind of worships at the altar of the media darling mom who says autism has always been with us (1 in 38 boys in South Korea is perfectly normal…huh?), I was hoping his site would be a way for moms to really connect and learn.  It is, but I suspect it falls short.  Because you can decide what information you get, you’re not going to get new information, you’re not going to get your paradigm challenged, and you’re not going to make as many discoveries beyond a list of decent providers in your area. You will, however, get virtual hugs if you’re having a shitty day.  I admit, that is awesome!

So, Thinking Moms, reach out to all kind of moms with kids on the spectrum.  They may vote for the other guy, they may educate their children differently than you choose to, they may feed their children differently than you choose to, but, WHOEVER they are, you can learn something new from them.  Promise.  That, my friends, is what is going to make the difference for our kids.  Somebody, somewhere, not in your comfort zone is going to have  the connection you need to really make a difference in your child’s life.  That could be a school you hadn’t considered, a therapist you’ve never heard of, or a doctor who can rock your world.  Who knows?  You, for one, certainly won’t if you stay in your room of mirrors.

 

 

About Jill R.

Mom, mostly tired, to 3 boys, mostly wired. Pretty much obsessed with healing foods for healthy brains. And "Scandal."
This entry was posted in Viewpoints and stories and tagged , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s