Ava Grace's Closet: About A Boy : Part 2

Monday, August 5, 2013

About A Boy : Part 2

Read part 1 here

I "met" Michelle through this blog.
She reached out to me some time ago and we've been fast friends ever since.
It's funny how you can feel that you know someone that you've never met in person.
But I feel like that.
She is good people.
And I asked her to share her incredible story with me. With you.
So, with our diagnosis we began the task of finding out what would "really" help Haden.
I turned to the Internet for answers and I found a lot of information, but mostly these acronyms, IBI (intensive behavioral intervention), ABA (applied behavioral analysis) and a diet called GFCF (glluten free/casein free).
From everything we read this was his only chance to make any progress.

Little did we know ...the wait list for Ontario was HUGE!  And that is an understatement. 
Haden was just turning 4 and the wait list was 4 years!!
No! This can not be. He needs help NOW!  
After much discussion, we decided to hire our own therapists who could do the program in our home. I had no idea what I was doing and totally relied on any company that I called to help us.  
I transformed a spare room into into his therapy room. We even had 2 way mirrors installed so that I could watch him.

The first few months were painfully hard. I had to wear music headphones to muffle out his crying. They warned me that the first time Haden is shown a task to do he would be asked to do it 100's of times. The first task was "stand up".
After several months of therapy Haden was showing progression in his receptive understanding (whatever is said to him , he would do it).
We also found out how much Haden knew . Numbers, letters, shapes, colors, words...His therapist would cheerfully come downstairs and explain to me that Haden had a lot going on in that little brain of his!

WE WERE ELATED! FINALLY, A RAY OF HOPE!

I also turned my own emotions around; started getting outside and exercising.I needed to do this because I knew that I wasn't any good to Haden being the way I was.
I decided one day, "that's it, NO MORE!"

Then, one day our amazing therapist had some sad news that she was leaving.
My heart sank. 
We had grown to love this girl.
All the months of his progression stopped until I found a replacement. Once again another roadblock.
We eventually found someone but knew we had to get him into the provincial program if he was going to have any future.
By way of a miracle, Jamie was offered a position with the Ministry of education in Toronto. 
We knew the wait list time in Mississauga (a local suburb)was the shortest in Ontario so Mississauga it was. 
For 3 years, Haden received the Provincial IBI program at Erin Oak Kids.

When he was finished his treatment at Erin Oak Kids we didn't want to live in Mississauga anymore.
We needed a fresh start. 
Treatment over. No more IBI (thank God!).
Even though Haden hadn't progressed or developed as much as we had hoped, both Jamie and I realized that Haden having autism was ok with us.  
We wholeheartedly accepted his autism .
All his quirks. All his obsessions.
All of it. 


I often remember the one (and only) meeting that I attended to meet other parents of children with autism.
One of the other mom's turned to me and said that I smiled too much to have a child with autism.
Actually,  I DO have a child with autism and  he DOES make me smile. 
Today, Michelle and Jamie live in Courtice, Ontario where Haden attends an amazing school.
He's active in many activities including swimming (see his youtube video here), horseback riding, skiing and so much more.
On August 24th, I will have the pleasure of FINALLY (!) meeting Michelle at the Mud Hero Race that she is doing alongside 11 other people.
TEAM HADEN is raising awareness for parents of special need children.
To see more about this amazing event, visit their website HERE
To donate (no amount is too small!) please do so HERE {sponsor a participant, Michelle Scott}.
Thank you Michelle for saying "NO MORE".
And thank you for sharing your story with all of us. 
You are an inspiration. 

13 comments :

  1. Beautiful story! Thanks for sharing it with us.

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  2. Thank you again Susan for allowing me to share our ...still ongoing....story. I so look forward to seeing and meeting you at Mud Hero!! Be ready for dirtiest, muddiest hug..ever!!

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  6. Dearest Michelle,
    What a rude remark by the 'other' mother about you smiling too much with an autistic child. You made the right decisions and yes, by all being positive and having the endurance to go through the therapy, Haden turned out the way he did.
    Good luck as a family on your road into the future!
    Hugs,
    Mariette

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    1. Hi mariette! Thank you for responding. When i went to that meeting for parents that mom was not in a good place. Perhaps she was me several years ago. We learn ( and are always learning) that being happy and positive you can pretty much get through anything...."that" remark slid right off of me! :)

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  7. Thank you for sharing this story! I am sorry for the struggles that you have endured. Hugs.

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  8. THank you so much for sharing your story!!! I am so sorry to hear this!! How rude of some people!

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  9. Thanks for sharing Haden's story. So glad you finally get to meet Michelle. Have fun!

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  10. Autism is an unique journey. It is always amazing to learn from other mothers' stories.

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  11. Michelle ... Haden is a blessing and your determination is a blessing to him. I applaud and send you hugs for keeping the faith and moving forward. Keep SMILING youb have a handsome son!! Hugs and blessings, C. (HHL)

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I love reading every last one. Thanks so much for stopping by our little blog. xo.

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