Monday, August 2, 2010

The way it is..

"Well I looked my demons in the eyes, laid bare my chest, said "Do your best, destroy me.
 You see, I've been to hell and back so many times I must admit you kind of bore me."
Theres a lot of things can kill a man, theres a lot of ways to die
. Listen, some already did and walk beside me.
 Theres a lot of things I don't understand.
  Why so many people lie.
  It's the hurt I hide that fuels the fire inside me."
Ray Lamontagne

  I don't think I can really remember a time before autism.  Oh sure, I can divide my life in pieces..There was the time" before kids" and the time "after kids". There is a clean divide.  There was a time when we had so much more freedom..and a time when we had lots less. Kids do that to you. Now, as they get older, I find myself having more freedom again.  But it isn't the same kind as" before kids".  Because no matter what, they are always on your mind, there are always pieces of them that travel with you. Kind of like a backpack crazy glued to your heart.  I think it is just the nature of being a parent.

  When I say that I don't remember a time before autism, I mean that my kids were always autistic.  I don't know having children any other way. I never lamented their being anything other than who they are, because they have always been who they are. I had nothing other than themselves to measure against. Does that make sense?  How could I possibly mourn something that never was. I'd much rather celebrate what is. I guess in a nice way I'm saying that I don't understand when I hear about parents speaking desperately of "recovering  their child". I always think" recover?"  "They're right in front of you"!  Understand, this doesn't mean that I don't help my kids, work with them,or get them the services and supports they need.  That is my job-my responsibility.  It is called being a parent. Whether my kids are neuro typical, have three heads or autism-it is what a parent is supposed to do. 

  I know that people mean well when they say things like "I don't know how you've done it" to me. But it really annoys the crap out of me. How I've done what?  These are the only kids I've known as a parent. I don't deserve a medal for that. That doesn't mean I wouldn't like a medal though..NOT for raising autistic kids-but maybe for getting them all fed, and dressed in clean clothes on a daily basis, for not losing my patience (too much) when they can't find their shoes, or when they are fighting over one thing or another. Yes, there are days when a parade in my honor would be nice. 

  Believe me, I am in no way minimizing what it takes to raise children with disabilities. The early days with my boys were some of my hardest. There were years of sleep deprivation of ceaseless screaming, times when I became a punching bag because I thought that was better than letting them slam their heads into the walls or the glass windows. There were times when I wanted to quit-to give up, to run away from home and join the Foreign Legion. Oh the powerlessness I felt.  Because I was their mother-and I didn't know what to do-how to help them-to make their world right .But  never-not ever, NOT ONCE did I hate them, or blame them, or wish them away.  Those feelings were instead directed towards myself because I felt helpless. Like a failure. I was the Mom-it is MY JOB to makes things right. My job to figure things out. To make their world better. It wasn't up to them. I have never been burdened by their disabilities-but rather, my own inability. Although I look at them now and think we've done o.k. They continue to develop and thrive. Sometimes I think it is because we let them just be. Wait!  Before any nay sayers start with their naying..Letting them be means simply that although we got them services and supports-and have continually helped them to learn and grow-we never treated them as if they were" less than" or" broken". Got it? So I don' think that I deserve a medal for doing my job. (although if you would like to send me chocolate or coffee, I won't complain)  I chose to have children. That is where my choice ended. These are the ones I have. Case closed.

  The past week or so the online autism community has been abuzz with a couple of stories. Two mothers did the unthinkable. They murdered their children. One of the mothers killed herself as well. The reason given in both cases was that they had autistic children and were overwhelmed by it. Some prominent people in the community are using this as a platform. Claiming that this is just the beginning-that we are going to see more and more of these stories because not enough is being done to help parents of autistic children.  No mention is made of the innocent victims-nor of the probable mental instability of the mothers-none. Nope, it is all about the evil autism...and I am reeling. Yes, there does need to be more done-more services, more programs-more support.  I don't argue that. However, I find it morally reprehensible that it is being argued for in this way. I also find it offensive....and a lot of other strong words-that I don't use on this blog.(but I do use in regular life)

  I came across another parent's blog this past week.  It was by a mom who was raising a child with medical issues.  Sadly, last week her daughter died. In her post she spoke of her loss her agony..her girl..and of how she would miss her for the rest of her life..the rest of her life. I thought to myself.."parenting never ends" (I say that in a loving way).. I know that when I look at my each individual child-at all that they are..I can say the same. Because no matter what..regardless of how they are..what they look like..who they become..I will fight for them, work for them and advocate because I am their mother..and I will love them for the rest of my life.   


Kim Wombles said...

Beautifully said.

Big Daddy said...

For the past 13 years, every minute of every hour of every day autism has been a huge part of our lives. It will continue to be for the rest of my life. When asked by friends how we do it, I am stumped. How can we not do it? My son is my son. It is my job to raise him. Period. You don't get to cherry pick your kids. It's not like the NBA Draft. As for those mothers who killed their autistic kids, autism had nothing to do with it. These killers (like anyone who takes another human life) are just defective human beings. Excellent post!

@jencull (jen) said...

My thoughts and feelings exactly, I am going to have to go back and read it again as you have taken my breath away because I don't think I could ever have said it so perfectly. Jen

Anonymous said... you made me cry! You are so eloquent!

BTW, this is the last week of day camp. Must get the kids together to run wild...

Angel said...

Wonderfully and lovingly written Kathleen.

Your words ring so true-it can't be said enough. We are parents-parenting our children. :)

Hugs, laughter and a teary smile,

Anonymous said...

Very well said. Your voice is needed - Don't ever stop writing/blogging.

Anonymous said...

Very well said. Your voice is needed - Don't ever stop writing/blogging.

Floortime Lite Mama said...

I am crying over my coffee
The media has infuriated me with some of the stuff they have done on autism awareness -
What a toxic atmosphere for our auties to grow up in

kathleen said...

Thanks Kim..
Hey Mr. and Mrs. Big daddy-YES! How can you not do it-our kids are our kids. We are parents. I find it hard to understand how many just don't understand that..
Jen-thank you..
Stork-thanks..and yes! next week?
Sirenity-parents parenting-that really is all it is isn't it?
Anonymous-thanks-twice! :)
k-floortime-yes it is infuriating..but we keep doing and writing and changing the post at time..

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jazzygal said...

Fabulous post, so eloquently written Kathleen. I too agree with you.

WiiBoy, from a young age (when he had enough language skills to understand)loved a little game I used to play with him. I used to pretend I'd asked Holy God for a different child. I'd say I asked for A...boy. Oh, wait you are a boy..then I asked for a boy with brown hair do have brown hair.

And on it went with his smile getting bigger by the minute. The end was that Holy God gave me the best child in the whole world! The perfect child for us. And it's true...he did.

Like you, we've worked hard to enable him cope in our world and he is a happier child as a result. He's not "recovered" he's hapier and copes better.

There are no doubt a lot of parents out there unable to cope through lack of support and/or mental illness taht may be driven to desperate measures.

There were a number of shocking murder/suicides here in Ireland over the last few years. One was a dad who murdered his ADHD son (mental illness was the cause) the others ALL had NT children.........

kathleen said...

Jazzy-that is a wonderfully lovely story! How lucky your WiiBoy is to have such a fun and loving mom..
yeah-these stories are horrible and shocking. My heart goes out to everyone involved...But we need to see these things for what they are-instead of assigning a title or platform to them. It at least to me..cheapens or lessons the victims..makes their lives not relevant and that is wrong. :(

Looking for Blue Sky said...

Wow, that was written from the heart and totally expresses what I struggle to say to so many people when they ask how I manage. Thank you :)

kathleen said...

Hi Blue Sky! Thanks..:)

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Mama Apples said...

I love this post. I agree with you 100%.

Looking for Blue Sky said...

Really enjoyed reading this again xx

kathleen said...


@bluesky-thanks...again!! :)

itzk8 said...

Kathleen - You nailed it! We are parents 100% not matter what. Our kids are imperfectly perfect and so are we... Wouldn't have it any other way!!