isn’t she lovely?

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That little girl steals my heart. I really don’t know what I would be doing with myself without her.

I was about to say while both girl and boy child are on the Autism spectrum, it really has been Girl Child that’s fueled the fire…. But I don’t necessarily think that’s the case. It’s hard to tell really, looking at everything in hindsight. They both have fueled the advocacy fire for the past eight years – it’s more like a chicken and the egg type scenario. I’m not quite sure which came first.

This afternoon I went to parent group meeting at Girl Child’s school. It was nice to sit with some administrators and other focused parents to talk about what we can do as an organized front to help our kiddos.

There are so many things to talk about when it comes to children with disabilities…. so many supports… and not just as children but as they age in to adulthood… Things that, for neurotypical children, a parent doesn’t have to think about until it is happening.

For us though? We have to think about life very explicitly and bluntly.

How am I going to teach my nonverbal child about her period?

What about birth control? She doesn’t take pills yet. Do I make the decision for her to get a shot or an IUD? Would she even allow the procedure to happen?

How can I make sure she is set as an adult? Will her brother want to take care of her? Will she want to live in a group home?

What the hell is a special needs trust and why do I need one?

Is she performing academically close to her peers?

Will she have any friends?

Who will look after her when I die?

All very real questions. Things I have to think about. And she is only 9.

With Boy Child, it’s a little simpler since he is so high functioning… but with that comes it’s own set of issues…

Will be figure out how to be independent?

He has encyclopedic knowledge of the Star Wars Universe but can’t even recite my phone number.

What happens when he wants to have a relationship with someone?

Will he blurt out the wrong thing to the wrong person and get his ass kicked?

I hope no one calls him a fucking faggot ever again.

Again, real talk. Things that I think about and/or have actually happened. And he is only 10.

Now, I have gone through my own trials and tribulations in life. A regular treasure trove of trauma, remember? But it hurts on entirely different level when you see your children cry. The feeling of sorrow is beyond words. Your heart falls out of your body.

I don’t want anyone to experience that kind of pain – either personally or by proxy. I guess that’s why I do what I do. If there is some thing or some way that I can help either avoid the experience or comfort the pain, I will do it. I’m beyond happy to answer questions, to show, to demonstrate, to listen, to hug – we need all of those things sometimes just to make it through the day… or even the hour.

I’m excited about this parent group. It shows an awful lot of promise.

Thanks for stopping by.

I am glad you exist.

 

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