Nea was diagnosed the month of August of last year, so this is our first experience of living the "awareness month." I've been rather frustrated with Autism Speaks the past few weeks, and really am trying to sort out how I feel about that organization. I think there needs to be more for the actual autism community then what is currently happening. I have an issue with their verbiage of "cure" and "epidemic" because I don't want those sort of messages sent to my daughter. Autism Speaks really spearheads the charge with the "awareness" activities and so I really had to decide if I was hooking in or hooking out.
What do I want awareness to mean?
I don't think I want folks to feel bad for us. We are living Autism every day. Some days we understand it, and some days it throws us for a loop. But every day we fill with love. I don't think we are special in that regard, so sometimes I get very shy about this whole month devoted to Autism.
I don't think I want people to feel sorry for my kid either. At her age, she doesn't understand if you look at her differently. But I'm pretty sure, she will understand a sideways glance later down the road. If she sits curled up in a chair with a pacifier and asks for squishes, I don't want the "oh, that poor thing. Bless her heart" look. I really despise that look. She's trying very hard trying to fit into our world because right now our world has decided that is the way. And some days she struggles with that "fit in" thing as she's learning about all the rules. She doesn't see things the same way I do. But she's looking at faces more now, and making eye contact more easily.....she's going to start seeing when you look down at her with pity.
Please don't do that.
What do I want awareness to mean?
I want a shift. I want our world to start to shift and move and try to understand hers a little more. I want there to be days where we see that kid sitting curled up in the corner trying to gather strength and we surround her. We understand that her Autism may give her some anxiety and she's experiencing it 100x more intense than most. And so she is surrounded with a protective shield of a couple people who stop and sit with her until it passes.
I want us to empower and embrace children and adults with Autism not because we think they are "special" but because we believe they are important. They are equal. They are human. It seems so minimal, but trust me.....we're not there yet.
At Nea's therapies today, the manager of the rehab department asked me to speak at an upcoming event. Just a short 3-5 minute discussion of what Nea's therapies have done for her and for our family.
Of course I said yes. And it made me think.
First, I can never speak for just 3-5 minutes about something I feel very strongly about. But in the interest of keeping the event moving, I will stick with the program. :-) And in reality, access to therapy is what has given Nea her life back. It's given her the ability to communicate, to get sensory issues under control, to tap into her world and pull her out. It's made me VERY aware of her Autism and how it affects her, and how I can help her. We are lucky. Not everyone has access. I would like the awareness folks to help change that. It's insane that some insurance companies still do not cover therapies like ABA for children who so desperately need it.
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| Nea in Speech Therapy doing a listening exercise. |
Secondly, today I received a very beautiful gift from a very beautiful friend. It is a charm necklace that contains Nea's name, all our birthstones, a star (she is one of course!), and the symbol for Autism awareness which is a colorful puzzle piece.
There it was, right there. Everything I think about Autism awareness was wrapped up in one beautiful piece of jewelry. Our family.
Autism Awareness is our family. And our family is aware of Autism every day. We work to help our kid acclimate to this world, and we are ambassadors to those who want to spend the time learning about hers.
The necklace also has "Blessed" written in the silver.
Yes, we are.
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