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I talk about Autism, a lot

Respect the Stim!

11/6/2012

4 Comments

 
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It is no secret among the members of "Team Kate" that I am unhappy with our options for therapy.  Actually, 'unhappy' is not a strong enough word.  Disappointed, angry, frustrated, walking around with a white hot pit of rage in my stomach.  Choose one.  I really was going to keep this blog light and for the most part I will but I had to get this out.  This province is NOT progressive enough when it comes to therapies for Autism. Our experiences with speech and occupational therapy have been wonderful and Kate looks forward to them each week. However, in terms of early intervention we have one choice, ABA (applied behaviour analysis), and while I have been told that there are good and positive things about this therapy (besides the fact that it is used to train dolphins at SeaWorld) I still feel that it is not right for every child with autism and I know with every fibre of my being that it is not right for Kate.  I don't know how to tell you all the reasons why I feel it does not suit Kate.  Among them is the idea that she should not stim.  I know the SLP's and OT's will struggle with this idea too but I believe Kate stims for a reason.  I FIRMLY believe that she needs to stim,  the way you or I need to scratch an itch.  As long as the stimming is not harmful to herself or others I will never stop Kate from stimming.  ABA therapy, by its nature, will attempt to 'train' the stimming out of Kate.  Kate's stims are hand flapping, toe walking and she has a verbal stim as well. Each of which, are harmless in my eyes. I am more interested in the reasons she needs to stim rather than trying to stop her.  Does that make sense? Is autism therapy in this province considered a mental health issue or a medical issue?  It is not a mental health disorder and it would seem to me that if it were considered a medical issue we might have more options than just ABA for our children.  Having said that, we have been paying for private ABAish therapy where an amazing therapist comes to our house and works with Kate twice a week using elements of ABA and other more suitable ways of working with Kate.  So, we are actively searching for alternate therapies and have come across the Son-Rise program.  It looks promising.  Alex and I are debating heading down there in August to be trained in the program.  We would welcome any advice or comments on the subject.  Ok enough of that, I got it out.  

4 Comments
Brendan link
11/6/2012 11:45:36 am

Have you checked out Jenny McCarthys website :http://www.generationrescue.org/recovery/autism-action-plan/
There are lots of resources on there from books to websites to treatment options.
I'm in total agreement with your philosophy Shanell and I hear your frustration. It is exciting though that you are channeling that anger into action and pioneering the effort for Autism awareness and education in New Brunswick. You are paving the way for others.

Reply
Grama
11/7/2012 03:14:24 am

No one knows or feels what is best for Kate more than you my daughter. I am so proud of you for being proactive in Kate's journey to her full and magical life that lies ahead.

Love Mom (Grama)

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Shanell
11/16/2012 05:03:11 am

It is too bad that the Grama's of the world weren't the policy makers. Then the kids best interests would always come first.

Shanell
11/16/2012 05:06:12 am

Brendan, I know I already emailed you about this but I wanted it on here for everyone to see. Thank you so much for all your research and efforts. We are exploring every idea that you send our way and they are all great! I can't wait until you come home at Christmas so we can get your opinions on everything that is going on right now. See you soon. Love you.

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