Thursday, December 2, 2010

Taking Slow Deep Breaths...

Today, I got up the courage to tackle my latest dragon.  Several weeks ago, I was caught by surprise when what I thought was routine neuro-psychological testing started with the head of the neuro-psych department at the George Jarvis Clinic telling me GB was on the spectrum. No, not FASD (although she said that was still there), ASD. How can a child start EI services at 7 months, special ed preschool at 33 months and receive special ed services for 2+ years from the district and have everyone miss autism? The psychologist told me about all the services GB should be receiving and is not. It was a very detailed discussion that lasted over 2 hours. I remember it happening, but I don't remember a single service that GB needs and is not currently receiving. Not one.

I have always been adept at getting the services my kids needed. I have never been particularly interested in following protocol and I absorb information about my  kids' disabilities thoroughly and efficiently. So why is it that, three weeks later, I have done absolutely nothing. I have the woman's phone number- so it is not because I don't know what services GB needs- a phone call would take care of that. It is not a lack of time; with both girls in school, I have one or two days without appointments most weeks.

I have to conclude it is fear. Fear of what, I am not sure. Fear that I will be unable to get GB what she needs? Fear that there will be something else lurking in the shadows, waiting to be found? Maybe it is fear I shouldn't have taken on Hope. I am not sure I would have if they had given me this information back in July when they first saw GB. Fear is not usually a good place to operate from.  Rather than spend more time and energy thinking about it, I decided to call the ODDS (Office of Developmental Disability Services) and request an intake package. It is a tiny step, but at least I am not running from my dragon. And, there is always tomorrow.

4 comments:

brenkachicka said...

Want my opinion? I'm gonna give it to you! I wish I could be eloquent, but my brain cells have all been wasted by studying for finals and trying to get everything in line for my surgery in a week and a half...
So my opinion. (I have an 8 year old son with ASD. So it's a kind of qualified opinion.)
ASD is the diagnosis of the day. There's been a backlash in the world of ASD with people who are afraid that the dx is being slapped on kids without complete evaluations. So, mental health providers and experts have been loath to consider the posibility of ASD. Especially in a kid who has other issues, like FASD.
I wish mental health providers would stop worrying about these kind of things and really get to the meat of what is going on with our kids. I have this idea that if we approached dx kids by addressing what services they need instead of what label the need to get the services our kids would be better served. Right now the label has to be the vehicle to the services. I understand that the labels are needed for insurance purposes and all... but really. Can you imagine a world where instead of searching for a label for GB you had a wonderful support system put in place that was designed especially for her? A world where experts, doctors and mental health providers sat down and said this child need this service, that therapy, and this support?
Ah dreams.
Make sure you familiarize yourself with this website: http://www.wrightslaw.com/
And THIS BOOK. THIS BOOK IS AWESOME. WORTH EVERY PENNY! http://www.wrightslaw.com/store/feta.html

Kelly said...

My God grant you with clarity, wisdom, peace and hope that only He can give. God intended you to be Hope's mom so don't second guess that fact. You are amazing and doing an amazing job with GB and Hope!!!

Psycho Mom said...

I get in the same boat sometimes. Just have to wait til you're ready!

Integrity Singer said...

no worries. AB is the love of my life. And they tacked on ASD for Sissy last year at RTC. I maintain it's not a legitimate diagnosis, that RADs mimics everything (and as you showed me, FASD covers a whole heck of alot too!!!) but c'est la vie. I've decided the Dx means nothing. It's how to manage the child. And that's my story (for today) and I'm sticking to it!

go ahead, roll your eyes at me!

or call if you get anxious. I can talk ASDs till I'm blue in the face. I just don't do it on my blog because in my estimation, AB is so much easier to manage than Sissy.