Wednesday, June 12, 2013

First, Do No Harm

I have two children on the spectrum. Very different, yet much alike. They are who they are, and I love every piece of them. If I could literally carry them around with me in a kangaroo pouch, I would.

But, something has been drilled into me since receiving their diagnosis. That I have to help them. That I need to send them to this therapy or that. That society won't accept them how they are. That they need to change.

So I send them off to speech therapy, occupational therapy, social groups, counseling, ABA. In school, outside of school. Forget after school activities, we just have therapy. Even the fun stuff is not's fun stuff meant for those with autism.

I don't think twice about it. I'm their mother, and it's my job to do everything in my power to help them succeed in life. To be happy and independent. To find fulfilling jobs, and have fulfilling relationships. Because success is only measured one way. By what people consider normal. By the achievements of typical peers.

Lately, though, something has been bothering me. The fact that my kids, at every turn, are being told that they are wrong. That how they think is wrong. That how they behave is wrong. That being autistic is wrong, and they have to change who they are. They must fit into a specific mold, and if they don't...

Wrong, wrong, wrong, wrong, wrong. 

I can't fathom going through each day being forced to change who I am because I'm not "normal" enough. I can't imagine what it's like to set aside who I am as a person, so I can earn stickers and pick a prize. To memorize scripts of what it's like not being autistic so I don't get in trouble, or lose my favorite activity.  Allowed to be myself only when a cute picture can be taken to show "acceptance", or so my parents can claim they respect all that I am.

Even in small ways, we are telling people something is desperately amiss. It leads people to feel sympathy for parents when they kill their children, because those kids (and adults) were just wrong.



Incapable of thought. Feelings. Barely human. 

What am I putting out into the world about my kids? My kids who are my life, my loves. I claim to accept them, while spending every extra penny on things that scream, something is wrong here! 

We place the burden of acceptance on our kids. We don't teach their peers to accept them. We teach our kids how to be accepted. 

It's not OK.

I've seen what this year has done to my kids. My children who have been told in so many ways, by so many people, that they are not good enough. That they are bad. That they need to change.

And I wonder why they aren't happy. Why their self esteem is shot. Why they hate school.

The murder of Alex Spourdalakis not only devastated me, but awoke something inside me. The fact that because our kids are looked at as less, things like this continue to happen.

I am supposed to protect my children, but I now realized I've failed. I've inadvertently made my children feel as though they are not OK. I've allowed them to be around people who drill that into their brains. Not that anyone did anything malicious. We all thought what we were doing was right. It's what every doctor and teacher and professional told us to do.

But, we were wrong.

Wrong, wrong, wrong, wrong, wrong.

What we put out into the world about autism is why there is no help for our kids. Why people look at them like they aren't whole. Not worth time, money, care.

I really think it's time to take a good, hard, look at what we are doing, and why we're doing it. What we are conveying about our children. About autism. How truly accepting we are of our kids, and if we are doing more harm than good.

All I know is something has to change, because human beings are being murdered (abused, mistreated, silenced), and it needs to stop.

We need to start really presuming competence, and seeing a person, not a diagnosis. Teaching our most affected to communicate, making that a priority above all else. Giving them a voice, because they are people who deserve to be heard. 

We must look at our higher functioning kids, and realize how our words affect them. Even if they don't come out and say it, put yourself in their shoes. Say this, do that, act this way...all of it telling them they just aren't good enough. Even coddling them, lowering expectations and treating them with kid gloves, sends a message of inequality, not just to them, but to the world. 

I don't know all the answers, or how to be a perfect parent. Not by a long shot. I just want my children to know they are good enough. Worth as much as any one else. That I am here to support them, and keep them safe, but not change. Not fight. I am on their side. I will follow their lead. It's not about me, the parent, it's about my children. All of our children.

Your children.

And the people, children and adults alike (because autism doesn't go away at 18), who have suffered at the hands of their caregivers, who deserved so much better.

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