Thursday, August 2, 2007

To Be or Not to Be, and Other Questions

Little man has been without "Official" treatment from a therapist most of the summer months. Having turned 3 in May, he was ceremoniously release from the early development program of the state and we had been on waiting list for a couple of different centers or therapist that our insurance will pay for while I do floor time, speech, and occupational therapies on my own.

Hubby has been trying to keep up to date on everything going on but has a more than full time job. It is there for that sometimes he can blow things out of the water without even a second thought. He is has had to take off early so that we can take Connor to evaluations for OT (we finally came to the top of the list) since I wrecked my van in Jun, and everyone in the known world is on turtle mode so I have yet to get another form of transportation. He decides he can take him to the eval and first treatment himself so I can get a break. My break is there for filled with telephone calls from hubby to get more information that is requested from him.

As early as last December Connor had very few words, very nonexistent eye contact, and rarely responded to his name. He didn't pretend play or even parallel play with other children. All of this was true in Jan when he was diagnosed. He has made remarkable progress since then and is very chatty, responds 75% of the time to his name, seeks attention, has a few 3 or more word sentences, sings songs, and the list goes on and on. He isn't anywhere near up to par with his NT peers of the same age but still it's gives us alot of hope that communication at least will improve to a point that we can have a back and forth conversation with more than 2 exchanges.

So when hubby came home from the first appointment with OT he had loads to tell me as most of the treatment session was another Q and A with the new therapist. First was that Connor remembered which rooms had the toys and wanted to go there so was a tad fussy at the beginning. Cool!

Second was the therapist said he was not as profoundly autistic as the rest of the patients. Great, but seems like a weird comment. Maybe it's just me.

Third, she says that if he continues to progress he could lose the diagnosis of autism in lieu of ADHD in a few years time. WTF?!

I instantly had visions in my head of the woman in the garage being told she needs a new engine when she came in for an oil change, or the Mother who pays loads of cash to the coach that insists her kid could be in the Olympics, or peddlers of snake oil to cure any and everything. I am fuming at this point, how dare she tell this gullible man, who only wants the best possible for his son, that in a few years time he may not be autistic!

I want to call her and talk to her about this. I want her to tell me her qualifications and motivations to make such a statement. How long has she been a therapist? How many autistic children has she treated and how many children has she actually seen this happen too?

Then the thought occurs to me that I know nothing at all about ADHD or how serious it can be. It just seems that short of life threatening diseases and more cognitively depriving conditions, almost anything is better than autism.


mcewen said...

I hear you. I'm sure that you're getting used to the daft things that people sometimes say, but similarly, when it comes from an 'expert' you suddenly feel that the ground is shifting and a bit dizzy. [we still get a bit dizzy sometimes]
Best wishes

Linda said...

Thank you for stopping by to visit my blog and for the compliments on Amanda's artwork.

My best friend in California is going through one of the hardest things in her life as she faces the placement of her autistic son Daniel who just turned 20 last week. Unfortunately Daniel has a very severe form of autism and is low-functioning (at least I hope that's the right term) which makes it very hard for Cyndi to handle him anymore considering she has fibromyalgia and a degenerative cervical disc disease that causes her great pain at times. Daniel is a big boy and prone to violence at times and even though it breaks her heart to see him go into placement, Cyndi and her husband both know that physically they are worn out. Add on the fact that she knows they won't live forever and she has Daniel's future to worry about and it can be very overwhelming. How she handles it just amazes me to no end.

Cyndi has been fighting with doctors and therapists and educationalists and Lord knows who else for so many years with Daniel and even though she tells me some of the things she goes through, I'm sure it's only the tip of the iceberg - a very big iceberg.

Best wishes to you in your endeavors with your son. I really admire parents of children with developmental disabilities - you all have my utmost respect and awe.

Suzy said...

You should check out Michelle O'Neil's site...

I think you'd find it very interesting.