Autism Speaks does not SPEAK for HIM OR HER OR ME

I have remained silent on the Call To Action published by Mrs. Suzanne Wright …. until now!

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.

We are talking about the parents here. Let’s look at this realistically. It is true that many of us don’t sleep much. I know in this house sleep is a constant battle. Yes I worry every night that my children will wonder off from the security of their home, and because of that I make sure there are alarms on all doors and windows in the house. Isn’t that what a parent does? We keep our children safe no matter what it takes. That is not specific to autism, that is specific to being a parent of a child. Honestly my children stripping their clothes off are the least of my worries in the middle of this night. We are not just existing, we are living. OUR AUTISM has shown us a new way to look at the world. Our Autism is not the end all of our children’s life, it is a different path we take to ensure they succeed in the ways that they can.

I won’t sugar coat autism either. There are days I scream from the mountain tops that I FLIPPIN HATE what autism has taken from my child. Those days, days like today and the majority of this week SUCK, but that isn’t every day.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.

This is autism.

I live my life in the moment, not “moment-to-moment.” Actually we have schedule and a routine that we follow. It is pretty much the same thing every day, but never the same day. If one of my children need to adjust something in our schedule or change where we are going we do it. I do ask a lot of my children as they learn to cope with the NT world around them, but I also allow them to have a “get out of jail free” pass when it is too much. Does this mean my life is lived in despair? Not a chance in hell. Do I have days where I am sad, where I cry, and scream this is not fair? Most definitely. Do I fear the future? Sometimes. I worry that my child will not be able to take care of himself and wonder who will do it. Will his older sister take care of him, who will take care of my youngest if she can’t do it herself. That is part of autism or any developmental delay actually.

AUTISM SPEAKS DOES NOT SPEAK FOR OUR AUTISM! OUR AUTISM SPEAKS FOR ITSELF! 

I speak for my children, I speak for my students with their parents, and I will not allow anyone to say my child is missing. I will not stand quietly while Autism Speaks instills fear of my child into those around him.

Will you allow Autism Speaks to speak for you and your autism?

I have taken quotes from the original post at Autism Speaks. To read the full post please visit: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

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