Playing it again...

"I repeat myself when I'm under stress.  I repeat myself when I'm under stress"

King Crimson

I wrote this post a little over a year ago in response to another post on AoA. A post in which a mother bemoaned the idea that her "recovered child" was not the same child she had given birth to.  That her "recovered" child was somehow "less than" what she believed she ought to be.  Today, AoA is promoting another blog. "Lives lost to autism" with the tag line "For many, autism can be deadly". I am gob-smacked. The thought that someone is promoting the idea that my children are a tragedy waiting to happen-enrages me.I am all for more supports and services-acceptance and inclusion for all autistic people. But until we recognize that they are indeed PEOPLE-HUMAN BEINGS, instead of tragedies or something to be mourned, we are going to get nowhere. This shameless promotion of horrific events in order to promote an agenda-or platform needs to be stopped. So once again, I will share this post.  It is my way of combating this awfulness...

"Scared Lost and confounded-but finding my voice"

I look at them, these children of mine. Each so different..so complex..so absolutely divine. I think about autism...and that three of mine are on the spectrum....each in different places..different needs..different people.

I think about my oldest, Sammy. How when he was a year old..he seemed to disappear..slowly going into his own world..a world without eye contact..a world without speech. I think about how scared I was..and lost..and utterly confounded. About how to get him back. I remember when I realized that he had never left..that he was always there...always listening. Always hearing..my voice. How important my voice was.

I think about Oscar..who for so long could not speak..could not ask..could not tell. I remember when it seemed that all he could do was scream..And again I was scared..and lost...and utterly confounded. I remember thinking I can not do this..and then thinking if not me then who? I remember when he discovered music..and could find peace. I remember rocking him to that music and his heart beating next to mine. I remember sharing that peace. I remember when I was his sole voice and realizing he was the voice of my soul. I remember how important my voice has been.


I think about Lily who is not on the spectrum. Whose voice and opinion are both so loud. I remember looking at her and thinking how do I do this-she is not like them. How scared I was and lost and confounded. How would I raise this girly girl next to brothers who are so different?
I remember looking at her, playing alongside her brothers..adoring them and simultaneously driving them crazy. I listen to her tell company "this is my brother Oscar...sometimes he says "eeeeeee"!" There is no shame, no contempt. It is what it is and it suits her. I recognize in her, my voice. I realize its importance...its impact.


I think about my baby girl Zoe. Who just now is in the process of being diagnosed. This time, I am not so scared, nor lost, nor confounded. I just have to look at my other three and see that there is nothing to be afraid of. I think about how overwhelmed she gets in crowds with noise and change. I think about how she looks to me to keep her safe...how she will snuggle in close to hear only my voice. I think about how important my voice is...


I think about the post on AoA..in which a mother speaks of death, and hatred, and disgust..I think about her child. I think about the voice that she hears..and I am confounded and she is so lost. I think about using my voice..to silence this vitriol.

Mostly, I think about my children..and what a privilege it is to be their mother..and an honor and a joy. Through them, I have found my voice...and I am no longer scared.