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Tuesday, March 13, 2012

Platforms, Bridges and The way it is...

I wrote this post almost two years ago.  It was in response to many things..most notably, some tragedies that had been discussed within the online autism community. Well, tragedy has once again struck. Again there has been much "discussion." Sides have been taken-lines have been drawn. This deeply upsets me-on so many levels.  No one ever really knows what another person is thinking, feeling, or why they do the things that they do.  They(myself included) can guess, they can suppose, they can make suppositions, argue and judge. All the while never looking at all the pieces-and instead, only finding the ones that best support their position.

   A mother killed her son and then herself. Two lives were lost. Two.  This is not a time for argument-or debating the worth of one life over another. Who deserves more compassion-or who loves their kids more. This is a horrific and terrible tragedy. One that maybe could have been prevented.  I don't have the answer to that. I was not there, I was not in that mothers head. None of us were.  I do know that I feel incredible compassion and empathy for the two people involved.  So maybe ..instead of arguing with each other over who deserves more sympathy or who REALLY loves their children..maybe we can honor those two lost lives by by reaching out to each other. By building bridges instead of platforms..and maybe we can stop something like this from ever happening again...

                              ---Kathleen
  

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 herd..at 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.  

4 comments:

Alittlesprite said...

I truly love this blog. Your words ring so true. I have a child with Aspergers, a Husband dying of heart disease, and I am going blind in my left eye...I get asked, "How do you do it?"..like you said, do what? we live our lives, it's just what we do.

It concerns me when I come across someone who has a child with a disability and seems to be far less informed than my Husband and I. I guess services in Australia are more easily accessible. They ARE out there though. People need to be pro-active in finding them. There is always help when it is asked for.

kathleen said...

@ Alittlesprite-Thanks. :) Yes, I too find it troublesome when services, supports etc. are not readily available OR people don't have the knowledge of what is available. I think back to 13 years ago-I knew nothing..It took a while for me to be able to get my kids all that they need and deserve. I still have to fight for many of their services-even knowing as much as I do.
The paragraph that I wrote before the post..well..people don't know the circumstances behind this tragedy. They can speculate/assume-they can decide that it was her sons autism that caused her to kill him. We don't know that. I read the many wonderful opinions/ descriptions of that young man-and think..who raised him?
The online autism community seems vast-but really is very small. Here people can(I think) comfortably say that they are on the spectrum..I'm not sure it is the same off line. I think the same goes for mental illness-also a disability. I can speculate that the mother was mentally ill. Again-I do not know. Kim wrote some very good and informative pieces on filicide a while back..I'll ask her to post the links here in comments.
Sadly- I read an article today about a woman in Las Vegas who stabbed her 6 year old daughter to death-because she thought that she was possessed..Her daughter was not on the spectrum...

K Wombles said...

Here are the links:


http://open.salon.com/blog/kwombles/2010/07/22/when_parents_kill_filicide_usually_accompanied_by_mental_illness

http://open.salon.com/blog/kwombles/2011/12/07/blame_game

Alittlesprite said...

It is very sad that these people didn't get the help they needed before it ended in tragedy.

I guess it frustrates me because we have spent thousands on IVF, only to be unsuccessful. I'm not saying these people are undeserving of having children, it's just heartbreaking reading these stories, given our own situation.

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