Saturday, July 18, 2009

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.

35 comments:

Mom26children said...

Kathleen,
The AoA post has been on my mind for almost 2 days now. I cannot shake the fact that this mother finds it Okay to speak the way she does about her child.
I am sad for the little girl. She has come so far, but for some reason, that is just not enough for this "mom"...
My heart is heavy for this precious child.

kathleen said...

yes..how in the world can any parent of any child speak in such a way...and then to see all of those comments agreeing with her..it really sickened me..

KWombles said...

Kathleen,

How absolutely beautiful! I like these tears on my cheeks so much better than the tears the AoA post caused. What a positive uplifting and marvelous antidote to the utter mess over at AoA.

Sirenity said...

beautifully said.

Corina Becker said...

as an autistic adult, I just wanted to say, thank you. for you and other mothers like you.
you give me strength. you give me courage. you give me hope.

thank you.

~Corina Becker

Squillo said...

Beautiful, Kathleen.

What everyone else said goes for me, too.

Maddy said...

I'm not generally in the business of giving advice, especially unsolicited, but I find it probably best for my mental health to avoid such posts / sites.

When I first started reading blogs, those were all the ones I could find. It took me much longer to find similarly minded people. The first one I found was Kristina and through her I found others.

Whilst my children aren't perfect, none of them, and they drive me quite batty the majority of the time, nonetheless, those kinds of postings to which you refer, make me realise what a wee small voice we are.....so we all need to yell a lot louder.
Best wishes

Anonymous said...

Hey asshole. Most of the comments of the Hating Autism blog are always anoymous. I am not any of the others but do know your an f'ing idiot.

kathleen said...

At anonymous-oops I mean John Best-didn't work on your blog-doesn't work here..coward.

Anonymous said...

Well, not him, sorry, but you are a fucking loser.

kathleen said...

It's o.k. John, I understand..you can't own all the crudeness..how would that make you look?

Anonymous said...

No wonder you have three autistic kids. Keep vaccinating them though-how's that working for you? Again, not John but you clearly are brain damaged so we get it.

kathleen said...

sorry john-you can't bait me..Anonymous doesn't work here anymore..own your words coward.

Louise said...

Now Kathleen, darlin don't you let folks like johnny best get to ya. Hell no! boy howdy!what you said was right pretty..that Johnny, he is jus full 'o his own impotence. you jes keep writin and lovin those kids a yours.

Thelma said...

Thelma's gotta back Louise on this one, hun, not that I've ever not had Louise's back, bless her sweet strippin' heart. I saved her from a sad life of helpin out fools like that foreskin fool, and she saved me from the church. We've been best buds since then and darn near inseperable. That's a nasty man who's mad at the world when he should be lookin' in the mirror. Seems to save all his hatin' for women and gays and some sweet young man named Ari. foreskin's a damn fool, and Louise and Thelma'd be mighty glad to hit him with our purses. Big ole' giant bags that'll hold a couple bricks easy. Whoooop!

wrong said...
This comment has been removed by a blog administrator.
Casdok said...

Beautiful post.
Shame about the anon.

kathleen said...

Thanks, Jeanette,kim,sirenity,Corina, Squillo,maddy, louise, thelma and casdok. It is nice to find like minded people.
Anon/wrong-a.k.a John Best-own your words..Thelma and Louise are right.

denise said...

Kathleen, this was beautiful. I don't read as many blogs/autism sites as most of your other commenters, so thankfully I did not have to read the heartbreaking thing on AoA-I am not even sure what AoA is...but I am so glad that you are out there on the 'interwebs' ;), countering such ugliness. Keep fighting the good fight.

kathleen said...

Thanks denise..yeah..I try to stay away from the ugly..but every now and then I have to make a statement. I would rather people come here and find a funny story-something to make them say" hey this is like our family!..l want people to see how autism affects us and doesn't affect us and that we are just like anyone else..and deserve the same respect and treatment like anyone else...AoA is age of autism..I try and stay away.

Rhonda said...

Beautiful post! As the mother of a wonderful autistic daughter, thank you! The more of us who write about the beauty that we recognize in our children, the more we can help others see it as well!

Rhonda

Moi ;) said...

Hi - I'd like to invite you to join the Autism Bloggers Webring over at RingSurf (www.ringsurf.com) -

Moi
Autism Bloggers WebRing Moderator

abfh said...

Hi Kathleen. Thanks for your comment on my blog. This is a lovely post. I've added your site to my list of links.

kathleen said...

Hi abfh-thanks-I very much enjoy your blog as well..so that is a big compliment to me.

Moi;)-done-thanks for the invite

kathleen said...

@Rhonda-I look forward to looking at your blogs..thank you for the lovely comment. Yes-we all need to speak up for our children-too soon they will be adults..I hope to help change things before then.

Tania said...

Kathleen I know what you mean so clearly - at first we are lost and almost drowned by the diagnosis. Then, as time goes by, experience is gained and new hope is found. I am lucky that my boys are both high-functioning AS - I couldn't imagine them any other way (normal is just boring). I know I have grown as a person because of the things I have had to learn as their mother, the tolerance I have had to develop (not easy) and the knowledge I have had to gain. Keeo going!

kathleen said...

Hi Tania...glad your back from Italy! I hope that you had a great time..Yes raising kids IS an adventure! A wonderful one..but definitely an adventure..:)

Timelord said...

Kathleen, just want to thank you for the private post on my Response Blog. I won't publish it there, but I would like to use it on my website. Best can't see it there because I've IP denied him.

May I?

Timelord said...

Oh and could you respond on my blog? That way Best won't know either way.

Anonymous said...

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kathleen said...

@ anonymous-I am to have been of help. :)

danette said...

What a beautiful post! It's great to meet another mom of multiple children on the spectrum.

"what a privilege it is to be their mother..and an honor and a joy."

this line perfectly captures how I feel too :).

kathleen said...

Thanks Danette-I look forward to going over to your blog as well.. :)

StrangerInGodzone said...

As an adult on the spectrum, who has seen/read lots of people with negative attitudes to autism, i thank you for writing this piece. The original AoA piece struck me as a wail from the heart, yes, but also that it was so unnecessary, that she was too focussed on what the kid couldn't do, or wasn't anymore, rather than what she is, and can do. Also couldn't help wondering how the child feels, and if she knows her mother feels like this. I'm betting she picks up at least some vibes! And I'm glad that there are at least SOME parents out there who don't think it's the end of the world to have an autistic child, or even more than one. Thank you.
Oh, and i think people should ignore the hate-filled ranters. I really, really don't know what their problem is.

kathleen said...

@StrangerInGodzone-thanks.:) Yes-there are so many horrible posts written by people-and I generally try and ignore them..but sometimes?...Sometimes I think that I HAVE to say something..counter the negative..My kids will be grown sooner rather than later..my fear is that they will run into more of the horrid negative posts than the good ones...So this one was for them..:)