People… Where would I be without them? The one of the very few good things I can say about this autism recovery journey is the people I’ve met along the way. People from all walks of life banding together, faceless names on the internet, all helping one another out. I’ve always fanatasized that at my son’s autism recovery party, I’ll personally invite everybody that’s helped me. Problem is, I can’t. There’s just way too many, and too many I don’t even know.
A newly diagnosed parent about to embark on their biomed journey asked me what I thought was most important tip that I could tell them? I replied “You can’t afford to be shy! You’ll be just as good as dead if you’re shy. Get out there and meet people. People are your source of information and help in person, and online. And oh, it helps if you have lots of money.” Okay…. I can even shorten that and just say “Don’t be shy”. Money? Hell, I suppose if you don’t have it…you can always lie, cheat, steal, work a stripper pole, etc for money. But you’ll do none of those if you’re shy. (Okay, this is why the Moms never let me write these blogs!) 
I learned my own lesson about being shy. Very early on in my ASD career……I tried making a go of it on my own. Anxiously reading the Yahoo groups, giving supplements, trying AC chelation, etc. Things were going well for a while, and then not so good. Progress just stalled, and the yeast was *bad*. It was apparent that I was going to need a real DAN doctor, and somebody preferably close by, thinking that he could do IV’s… but who? As far as I could tell, there were none in my town. I was desperate. I happened to see a flyer for autism support group meeting near by. I decided I needed to go, just hoping somebody would know of a doctor or anything. I felt pretty stupid/self conscious going to this meeting. I didn’t know what to expect. Was this going to be like an Alcoholics Anonymous meeting….where I have to shamefully admit I have a problem?
I had never actually met any other parents that had kids with autism. I didn’t care anymore, I was beyond desperate. So I went, and nervously approached the little meeting room in our local Panera Bread. There was just 6 of us. And there was no agenda….just talk….and talk we did. I was overwhelmingly relieved. These people were like me! It was so good to talk without putting your guard up all the time. You could admit things, like my kid got kicked out of this preschool, etc and where people said, big deal, me too! And, I did get some tips that lead me to my current DAN doc.
I am continually amazed that I learn from beginners and experts alike at these meetings. I may meet a new parent, and eventually 2 years later, they end up introducing me to a very key someone else, etc. Sure, I like to over analyze stuff! I helped a new parent once, and they thanked me over and over, and said they didn’t know how they could ever repay me the favor. I smiled, and I said, I’m sure you will, you just don’t know it yet! Karma? Maybe it is…
It’s interesting how people play to their strengths or cope with things. They say alcohol magnifies the personality….so does autism I suppose. I’ve notice that you can stereotype a lot of people you meet at these support meetings. So let me poke a little fun at ourselves, and see if you’ve met any of following people
THE SCHOOL FIGHTER – This person lives to fight with their school district. Even over the placement of the pencil on the desk. Specializes in citations and loopholes and can’t wait to tell everybody their latest battle or re-tell the same story 52 times.
THE MERCHANDISER – This person is apparently in it for the merchandise. Autism shirts, pens, cowbells, plantholders, etc. Can’t wait to show off a new item.
THE SOCALIZER – This person just wants to know everybody….who’s divorcing who, etc. Autism? What’s that?
THE TRENDSTER – This person is into the latest biomed fad. Red Beetle dung smeared on your forehead opens up the detox pathways? Yeah, I’ll try it!!!
THE DRUG DEALER – Is pushing a new supplement or a new pill to try.
THE CRYER – This person will inevitably break down crying at every meeting.
THE ANGEL – This person will always be there for you. Just put up the Bat Signal.
So who am I? THE TRENDSTER-DRUG DEALER and closet CRYER.
My experience with going to just the local meetings inspired me to try something very different. I traveled to AutismOne/ Generation Rescue Conference in Chicago. There I can only describe the experience as the going to the DisneyWorld of Autism Conferences! Where else can you meet the top experts, meet over 500 parental duplicates of yourself, learn *tons*, get inspired, and have fun? You’ll even learn why Karaoke therapy is good for the recovery process! Where else you can enjoy a meal with people that are anxiously discussing stool analysis results? There’s mixers, gala dinners, Mom’s spa night, and even a Dad’s night out.
The dads are usually in the minority at meetings I go to, so this was a nice change. David Geslak of the Exercise Connection is the generous sponsor of the Dad’s Night Out event on Friday, May 25 2012 from 7.15pm – 9.45pm. He’s personal trainer that specializes in working with autistic kids, check him out at www.ecautism.com. Free bowling, pizza & beer….and a shuttle is even provided to bring the tipsy men back to the hotel. Like I said….. don’t be shy!
~ The Count
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Excellent!
Good article. Thank you.
I would also add, in addition to “don’t be shy”,
“don’t explain everything, just what you HAVE to”
for example, if you are stuck securing services from a less than “thinking” practitioner, and you feel you need a test for “such and such”, don’t present all you’ve / kid has been through — don’t explain all you’re trying to find out — “just the basics”
example, you want an iron test because you think too little/too much iron is affecting behaviour etc.. Do not explain that all/especially in terms of research you have done ..
try, “I think my kid needs an iron test because there is a family history (who is to know if there really is?), and child is having some similar symptoms..”
If one is stuck with dealing with a non thinking practitioner, one often needs to not be shy, AND to stick to one thing at a time…KISS principal often works best. You can go home/talk to thinkers/try to work it all in to what you see in child.
Wow nice, I thought TMR only had hardcore warrior moms but you make up for the MIA dads . A very important point about not being shy and getting out to seek support instead of suffering alone.
Great article! Thanks for the support and the laughs.
This blog has helped me so much to speak up and find support. Thanks. I’m way too honest to cheat or steal, but what do ya think about plus size, 40 yr olds workin the pole? Yeah, think I might have to get creative with the fund raising! 😉 BTW. I’m the Cryer and the Observer / Note-taker! Funny stuff!
I don’t know which one I am….but I know LOTS of Angels. 🙂
Well Count, I am delighted “The Moms” let you write this one! You made me laugh out loud, at myself and all the support meeting memories that came crashing in! I was The School Fighter until the school district kicked ME out of school. The Angel until I crashed and burned from constant phone calls and home visits. The Drug Dealer and (new one here) Supplement Supervisor who created spreadsheets for those poor autism moms that fell under my radar. Yep, we are all crazy. Crazy in love with our kids and each other!
I hope they let you write another…… I look forward to the next good laugh and poke at my own inflated sense of myself. (Ummmm, I guess you figured out I am not shy.)
Don’t let him kid ya. We have to practically BEG him to write a blog. He’s usually too busy “working his networks” to sit down and write. 😉