Tuesday, April 19, 2011

Disputing The Diagnosis

Recently I have been reading other blogs written by people with children on the spectrum.  Most of them have something in common, schooling and the uphill battles they are experiencing when it comes to their children.  My heart goes out to all of you.  I truly feel for you.  The amount of frustration is overwhelming.  I have decided to share my story about Austin with you.  He will be entering the school system this year.

I live in Québec, Canada (a compromise I made when I got married, my husband grew up here, I grew up in Ontario ... my home).   This province is, well, frustrating to live in at the best of times.  They do things differently than the rest of our beautiful country.  Now, don't get me wrong, I am not bashing Québec, just bringing to light that there is something very wrong when this province is the only one that can question my son's diagnosis.  That's right!  Québec is the only province in Canada that does recognize my son's diagnosis of PDD-NOS.  Why?  Let me elaborate for you.  Read on ...

In Québec, you must have a Psychiatrist determine whether your child is on the Autism Spectrum.  A Psychologist's diagnosis has no value here in Québec.  So, my son must be re-assessed by a Psychiatrist.  The school board here will not accept his diagnosis until he is re-assessed and the diagnosis is confirmed.  It is truly frustrating!  I had already gone head to head a few months ago at a Special Education Advisory Committee meeting with a woman who was leading the meeting.  So, it had already been brought to my attention that this could happen, my son would need a diagnosis by a Psychiatrist to get the support and help he so desperately needs.  This woman I had been questioning, told me to "Bring it!" (doesn't she sound lovely?) at that meeting when I put up a fuss about the Psychiatrist and I told her "I intend to bring it!!!".  (I dropped off documentation this morning that was requested by the school board late Friday afternoon.)

Now, this is the part of the story where is gets really nutty!  Austin was seen by a team of Psychiatrists at CHEO prior to being sent to a Psychologist for diagnosis.  You see, the Psychiatrists (there were 4 of them evaluating Austin) could not say whether he was on the spectrum or not and needed to see someone who specializes in this type of diagnosis.  Okay, off we went.  Sure enough, he was assessed and as you are all aware, has PDD-NOS.  It is hard enough to deal with the shock, disbelief, pain, denial ... you all understand the process but to have someone come back at you and say, "Yeah, we don't trust that diagnosis.".  Surely, they jest!  Nope!  So, as I said to the woman who called me the other day from the school board (not the same lady from the meeting, I don't think she likes me ... LOL!), I am basically running in a circle.  Psychiatrists sent Austin to a Psychologist for diagnosis and now, Québec is sending him back to a Psychiatrist for a diagnosis, which they could not do the first time ... alllllllll righty then!

There is some very good news out of all of this craziness.  The Québec school board said Austin could see a Psychiatrist in Ontario.  So I called the Psychologist that diagnosed Austin and low and behold, they have just secured one for their team starting in mid-August.  Austin is on the list to see her.  YAY!  So happy about this since it will involve very little upset or discomfort to Austin since he will be going to the same place and knows all the therapists there already.  They are an exceptional group of professionals, not to mention, wonderful people!  I cannot say enough good things about them and feel very lucky to have them helping Austin. :)

So, we will wait and see but in the meantime, I am going to fight as hard as I can to get Austin a "temporary code".  That will ensure that he will get help until he can be re-assessed (and the report comes in).  You see, Austin is a flight risk, so I will fight as hard and as long as I must to ensure he is safe at school.  I am a fighter and will do my best for Austin, he deserves it!  The most important thing in the world to fight for and protect are our children.  So I am ready!  People say "Don't poke the bear!".  Well, someone poked this Mama Bear and it just turns out I happen to be a GRIZZLY!  "RAAAWWWWRRRRRRR!!!!!!"

*HUGS* to all


Judy said...

How frustrating...even though awareness of autism and spectrum disorders has increased a lot over the years, we still have a long way to go. I'm glad to hear he can be seen by psychiatrists you trust.

Mommie That Gets It said...

Hi Judy,

You are right. Frustrating foresure! We are very lucky that the team Austin deals with just secured a Psychiatrist. Interesting timing! The good forces are at work! :) Thanks! :) Heather

Leslie said...

It's disturbing how hard these "support" people are on us moms. Like you said, it's not like all the stress and shock of it all isn't hard enough on us. Sheesh, people, cut us some freaking slack!


Mommie That Gets It said...

Hi Leslie,

You said it! BRAVO! :)

Welcome and *HUGS* for you!

Thank you!



farmwifetwo said...

It took us 4 dx's with the eldest to get the right "words" in Ontario - end of gr 1. The last time the Dev Ped made certain it said "autism" on it. We had PDD-NOS first (2.5yrs), and we made the mistake of going back as the Dev Ped requested. Then he put "speech and language delayed with global delays". This is not a dx for the IPRC to get an "exceptionality".

Once you get the dx make very, very, very certain you never get rid of it. Mine (11.5yrs) now "passes for normal" but we still need PPM 140 for social skills, the laptop, and the claustrophobia. The school isn't offering to pull it, we've been told they cannot dx autism (school board) and it remains since pulling it these issues go from "needs help/needs to be taught/accommodated" to "behavioural - send to office".

With proper teaching and supports he's doing amazing instead of being labelled behavioural and spending hours in the office.

Mommie That Gets It said...

Hi farmwifetwo,

Sorry you and your son had to endure all of that.

The team we are with do not remove children from the spectrum too easily because then they lose their support. I am so grateful that this doctor has joined their team and will see Austin for a "Quebec diagnosis". Quebec is so different than Ontario. We were rejected for any financial assistance by the Quebec Government because of lack of severity. The Federal Government stepped up and helped, just a bit, but at least they are helping! I don't need to tell anyone on here how expensive it is, insurance or not.

Thanks for sharing this information with me. I will be posting the outcome of Austin's assessment in late August or early September. I hope you check back in again soon.

All the best! Thanks again and *HUGS* for you! :) Heather