Why It’s OK To Do Blue…

If you ask me my opinion on Autism Speaks, it will be followed with a reference to their non-profit tax information, and how they are horrible example of greed gone bad in organizations that are supposed to advocate for people with autism.  They make these fancy commercials, great pamphlets for newly diagnosed families, and bring a LOT of awareness to autism, BUT they also think that people with autism should be shoved on an island, they fund a lot of research that promotes eugenics, and there President (already a millionaire) gets paid around $600K for her work with Autism Speaks, not to mention there is NOT ONE AUTISTIC on the board of directors.  I question how an organization can say they speak for autistics, when there are NO autistics on the board!!!!  

That being said, my son’s school sold light bulbs for “Light It Up Blue,” all the proceeds go towards the scholarship program, which gives children who may not have access to ABA therapy, get the therapy they so desperately need.  I will support that.  So I did what many parents, family members, and even a few autistics do, I screwed in my lightbulbs in front of my house.  My neighbors thought I was nuts.  A few asked me why, I was changing my lightbulbs from the incandescent to blue.  Surely, they see my son outside, in the driveway, laying on his favorite gray blanket every weekday after school, playing with his connectors.  And that’s why I light it up blue.  Not because I render support to Autism Speaks.  I light it blue, because someone saw I was doing something different, and asked me about it.  It gave me a chance to explain the challenges I face.  The challenge of raising and educating a little boy, that the school district didn’t want to educate anymore.  The challenge of having to gird my loins every time I go to any kind of social situation.  The challenge I have when someone calls me, and then I rewind my entire week to make sure I didn’t do something wrong, and the reason they are calling is because they just want to talk to me.  The challenge I face knowing that as my child is growing up, he really isn’t growing up.  He is 10, and he still behaves similarly to a 3-year-old (that’s REALLY terrifying to me).  The challenge and worry I have that knowing my child is vulnerable, and will probably always be vulnerable. 

Besides the challenges, I can also share our triumphs.  How he loves to run.  How he has a sense of humor that surprises and enlightens everyone he comes in contact with.  How he is an individual and not a label.  How I look forward to waking him up every morning to go to school, because I get rock out to either Queen, Lady Gaga, or Metallica.  How despite teachers saying that there was no way I could do it, I graduated from college with honors, how I got married, and how I became a mom.  And being Ryan’s mom is my biggest success ever.

 

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