"I repeat myself when I'm under stress. I repeat myself when I'm under stress"
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.
Still beautiful and a lovely counter to the angry places.
That site could have been a tribute to children and adults, a place to truly honor those who have been killed.
But no, the latest post there is about an autistic adult who killed his housemate. Gah.
The best response is the one you've made here, Kathleen.
your post made me cry
how lovely and true
My little guy is the best thing that happened in my life
Well said and timely for me. I don't think you can silence the vitriol but you can try to eliminate it from your life. It's going to be out there. I also struggle with the question of whether I would want to "cure" my son. I love him the way he is but would want to spare him some of the challenges he is condition forces upon him. Even so, I agree that it is a privilege to know and raise him.
Yeah, I'm crying too. Very beautifully written. Thanks for that.
Hi floortime-yup, my kids are my world..my universe..bliss-joy..
Hi Big daddy-sometimes I just feel compelled to counter the evil and the ignorance. I so worry about parents new to diagnosis-if that other blog is the first thing they see..how horrifying..I think a lot about the whole "cure" issue...would I take away the anxiety attacks-in a heartbeat..the extreme o.c.d...yup. But I often wonder when I hear the word "cure"..what does it mean? cure what? All my kids are so different and unique..so I find the issue perplexing. It was like I was saying the other day..My kids have always been who they are-and although we work to get them all that they need-they have always been who they are. I can't think of loving anyone else-I love THEM..does that make sense?
I've never gone to AoA, I don't think I could handle reading things like that as I feel very much as you do. Well said Kathleen, you always get it right:) Jen
AoA sounds like a horrible site! I can't decide about the whole 'cure' debate, I guess in a perfect world every child would be accepted and helped according to their need: the way things are right now it would be a lot easier on them (and us) if they didn't have 'special needs'.
Hi blue sky-I get confused by the "cure" debate as well..I want my kids to have wonderful fulfilling lives-what parent doesn't. All I'm trying to say is that this is who they are-and I am not going to mourn what the world thinks they ought to be. Instead I am going to embrace them and do my best to help them get wherever it is they want to go..
It was brilliant the first time around Kathleen and it is still brilliant today. I hope your voice gets heard above all the vitriol. It is a very important point you make...what if the AoA is the first blog people read??
I ahven't read much on that blog TBH...I simply couldn't take it.
Thanks Jazzy! I try and stay away from there too..but every now and again...sigh..
Last night, I noticed that someone in Canada had googled, "spouse in anger phase because child is autistic". Google led her to my post, "The Seven Stages of Grief - Autism", of 28 Dec. (Can't cut and paste here.)
I hope that was of some help to her. That's why we blog, to hopefully reach these folks first.
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