My Road to Advocacy


When my son was diagnosed with Asperger’s in May, 2011 I felt some relief finally knowing what his diagnosis was.  The more I researched the diagnosis the more I saw how it described him but didn’t define him.  I can admit that although I was relieved  I was also a little stunned.  I had to do something.  The first thing that I came across was a local walk for The Autism Society.  I signed up right away, formed a team, and raised money for Autism.  I received my first Autism shirt and I wear it proudly.  My son was (is?) still struggling with the diagnosis but he was very interested in knowing how much money I raised for the cause.

At the walk I found the local Aspie support group.  I love being a member of this group.  The way this group is set up there are speakers brought in every month where we learn about something- transitioning, or supports for example.  This group also does fundraisers and activities for the group.  I have immense respect for the local mom that started this group and I always try to help out whenever they need anything.

I still felt the need to do more.  I soon found the website for Autism Speaks and Autism Votes.  I know that there is some contention with this group but I believe there is good there even if some people don’t feel it is perfect.  Check out the video on Grasp http://www.grasp.org/videocolumbia.htm for a nice overview of all the groups and how we all need to work together.  I personally really enjoyed this presentation found it to be very informative.   After much deliberation I sent emails to the local office of Autism Speaks to see how I could help out.  I became a member of the planning committee and I volunteered at a local walk last month.  There is now a walk scheduled next month in a local city and I will be there as well.  I will be working on putting together more fundraisers and I will update on that here as I go.  I am sure that that will be an adventure as well!

I was also looking for how I could get involved with advocating for our kids.  I signed up at Autism Society of Ohio to help with any advocacy needs.  They sent me to the Autism Society link http://www.autism-society.org/news/your-action-needed-help-the.html where I was able to send emails to my representatives asking them to preserve the Combating Autism Act.  I don’t like when they use names like defeat or combat but the Act has important components to help our kids.  Please consider watching this site for ways to help in the future.

I have also started an online training course recommended by the Autism Society http://www.partnersinpolicymaking.com/makingyourcase/index.html so that I can learn how to help create change.  That is exactly what I want to do.  Our kids deserve the best.  They deserve for their treatments to be covered by insurance.  And they deserve for people to accept them as they are.  I know some people may think that asking for treatments and acceptance are opposites.  I think that both our important.

I have experienced discrimination directed towards my son when he is struggling with an issue and no kid deserves to be discriminated against.  I do not want to change who my son is, I love my son as he is.  His Asperger’s makes him look at the world in such a unique way.  I know now it was his Asperger’s that made him run around at 3pointing to all kinds of patterns and saying “Mommy look at the patter-in”.  He is always so inquisitive and bright.  But it is also the Asperger’s that made him hit other kids when he became overwhelmed.  Treatments aren’t about changing a kid, it is about helping them be the best that they can be.  No one would see the greatness in my son if he kept hitting anyone that came near him.  But he really needed understanding and patience while we worked through that and he didn’t always receive it.  Today he needs understanding when he shuts down when he can’t communicate why he can’t do an assignment. I work very hard to educate the teachers and family but sometimes they just don’t understand.  I can’t give up,  I have to keep fighting.

I have this burning need inside of me to fight for all of our kids.  All of our kids deserve to receive treatments to be the best that they can be and acceptance for who they truly are.  Very unique, bright, and wonderfully sweet individuals.

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