Thursday, April 29, 2010

A Dose of Inspiration Got Me Thinking...and Whining...and Planning

Link:  Hero: Time Magazine Top 100 2010 Temple Grandin

Met a genius today and was completely inspired. What an incredible, uplifting experience. Temple Grandin is a dynamic, hilarious speaker. Got to see her autism "quirks" up close and personal. I sat at the next table from her at an Autism Conference.  She had to get up and leave midway through another guest speaker because of distractions. She has obvious tics, and her social difficulty was quite evident.

I got her book, got her autograph. How cool and timely this event was. I really need this positive vibe right now as I wade through book after book, stay up way too late scouring the net, reading every Fb autism news blip, etc. I'm struggling to see which therapies are best, crying over the costs, lack of support, etc.

WARNING: uncharacteristic whining to follow...
This barrage of help and information also got me thinking once again of the time we've lost.  I've lost so much time because of G's late Dx, and I'm damn angry that NOBODY caught this earlier, even though I've been seeking answers since he was 18 mos., over and over, hither and yon. As I told my university parent group leader today, I'd really like to get involved with educating pediatricians, teachers, schools, etc. somehow to ensure that children get Dx early.

What is the universal ASD message? Early Intervention. 
Catch those children YOUNG!  Form new neural pathways.  Help them manage their difficulties. 

I intervened, where was my support?  Do doctors and schools think moms make up difficulties because they WANT their child to have autism?  Could they just take us seriously, hand out a phone number, maybe follow up?  We missed out on Early On (free!) services. Now we're facing $5K-$100K for the broad range of therapies and services that are prescribed but not insured for ASD. 

Hey, with 2 $$$ adoptions and helping destitute family members on both sides of our families, how can we even consider any of that? We're stuck in the "middle zone". UGH! I can't work because of G and we're already stretched too far financially. Most experts and parents say that you need a trained, licensed pro to guide you through the therapies, but we can't afford it. 

The most successful people are those who are good at plan B. ~James Yorke
So, Plan B.  Whining over, moving right along...I'm fairly confident that I can handle learning/working with G on my own. He's not a severe case, and his skills are responding to the treatments I've been working with him on.  I've already been doing my own OT for 1.5 years, and have worked hard to impove his speech with the Hanen program. The results are impressive, and he's getting support from school now as well (another story).  Maybe I can do this on my own and not have to drastically change our lifestyle...I owe it to my other kids, who already experience so much sacrafice of "normality".   Balance.  It's a heavy load on special needs parents' shoulders. 

If Plan B backfires, keep moving down the list. ~ Me
Plan C: If I can figure out a loophole in our budget, or G starts to backslide, or I go bananas...
I found some leads to hire college students/recent grads for ABA, OT, Speech therapies.  I sat with 2 recent SLT grads who told me to check Craigslist, of all things!  Who knew?  Certainly not me.  Plus I found a center that I feel comfortable with, is relatively close by, and my newly reunited dear old friend is the program director as well. I was mightily impressed with the center's speakers; their tone, knowledge and future direction. And through a random question to my friend, found a source who explained that IPOD I-Touch apps for ABA are free during autism awareness month - which of course ends in 28 hours. I may be up all night downloading...:} So excited - G is all about electronic interaction I-Touch - perfect for him!  ITunes also offers PECS/Social Story apps at a cost.  But now I REALLY will never see my I-Touch.  A small price to pay indeed.

ITunes links to really cool apps:

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