Thursday, November 1, 2007

It's official

Many of you know that Mason was evaluated back in September for some developmental delays. The therapist that saw him were very concerned about Autism. We took Mason to Children's Hospital on Monday, Oct. 29th for his formal evaluation. After nearly 5 hours, the team came back with a PDD-NOS (provisional) diagnosis and want Mason to be restested in six months. PDD-NOS stands for Pervasive Developmental Disorder - Not Otherwise Specified. Basically, it is a dumping ground for children with MANY of the classic autism symptoms, but not ALL, or not as SEVERE. Of the three basic categories that define autism, Mason is not severe in ONE. Which is the repetative actions. Though he will gaze quite often out the windows, has a definite affinity for pens and doors, they did not feel it was severe enough to warrant a true Autism Diagnosis at this time. (Mind you, they had to close the blinds in the testing room because Mason would not stop staring out the window~) I thought I would be a little more happy with a PDD-NOS diagnosis, but really after researching a TON, I've discovered that it is quite like autism. The docs have told us time and again that Mason will benefit GREATLY from the same therapies offered to children with autism, but with the PDD diagnosis Mason is not allowed any additional services! It's appalling! If he were given the autism diagnosis, he would be put onto a wait list for a government waiver and within 6-9 months he would be granted $25,000.00 per year in additional therapies and services. This would bring his developmental therapy up from ONE hour per week to 8-12 hours per week. But, because the diagnosis is PDD-NOS (Still on the autism spectrum) he is entitled to nothing.
SO, Gregg and I are getting mason immediately into Speech and Physical therapy. Our ins. will allow 60 combined visits per year, and we are currently awaiting approval for a neurological psychiatrist to give a second opinion on Mason's condition. We will of course do the restest in 6 months as well. This is all so very overwhelming to us as we are officially in the 'NO-MAN'S-LAND' of the autism spectrum with a toddler who is very much in need of intense early intervention! I was told time and again in the past 2 months, that if Mason were given an ASD (autism spectrum disorder) diagnosis, that I would be fighting the biggest fight of my life to get him what he needs. I guess those people were ALL right~ But ya know.... I'm up for it. I 'm not losing my boy to Autism. So , in honor of that statement I am going to post a scrapbook page I did on the matter entitled, "Dear Autism.. "
I will post updates as they come in! Please keep the little bubbs in your prayers!


Barbara said...

Hey girlfriend!
Krissy, I am so proud of you for setting this up, and so excited to be the first to post!
HUGE HUGS to little "Bubbs"! He just looks so sweet in your opening photos! I am signing up for updates, so I will know when to log back on...All my heartfelt prayers to Mason...and to YOU!
Congrats on your new blog!!!

Helen Hancock said...

Oh Krissy! The medical system you have sometimes leaves me speechless. My heartfelt wishes and strength go our to you and Gregg.....Mason could not have two better parents. All will be well my friend. Remember to take some time out for yourself to replenish yourself so you can continue to be the tower of strength you are for your family. Big (((HUGS))) to you K.

Love H

mosbarger said...

BEAUTIFUL blog!!!! OMGosh, I just posted get YOU-KNOW-WHO off my butt, and it looks nothing like this!!! Great job!!!! Anyway, you know my thoughts and prayers are with you guys. I still have a lot of faith- I truly think he will be OK....either way. Keep your chin up, and know I am here if you need me!!!!! Hugs to my kiddos!!!!! Karin

Wendy said...

Krissy Big HUGS to you ma'am!! Mason and ya'll are always in my prayers!! You ma'am are a very strong dedicated Mother and you will get Mason through this!! No comment on our government and their so-called rules! I love the layout it is magnificant and comes directly from your heart!! I am here for you anytime!!