I wrote (a rather long) Facebook post the other day, in keeping with autism awareness month. I was told it was worth sharing, so I’ll clean it up a bit and share it here with my pot-luck community.
I’m starting to notice now, the transition from -adorable baby- to -child with autism-. I’ll tell you why it’s a different world now…
People were more willing to hope for my son when he was 2, or even 3. They saw his cuteness and chubby face and it made up for the silliness. He still fell within “normal” behavior for quite a while. But he’s almost 6 now. He is big. The roundness to his face is fading. The squishy adorable toddler has been replaced with an active boy. So much more is expected from him now. Now people see him as odd-special-autistic. And I see a change in how he is treated and how I am looked at.
It seems like now, his odd behaviors instantly tell people he’s too weird to learn. I do understand the obvious delays he has. I live with them; of course I do. But they don’t define him. Yes, it’s hard for him, and his progress in those areas is slow, but it IS happening. He’s emerging, and communicating with us so much more every day. He just has gaps in his development. Gaps…not stunted for life.
So, the other day, this well-meaning person said a bunch of stuff to me. It was just old ways of perceiving autism. Not like I hadn’t heard it before. She looked at him and she put him “in a box”, when she saw his odd behavior, and his lack of talking appropriately. She said stuff that was like, “yeah, that is just not possible for him.” She wasn’t trying to be rude, but I was so stunned by the change of atmosphere I’m used to, in regarding my beautiful green eyed boy, that I said, “well, you’d be surprised how much he is capable of, I see stories everyday that say otherwise—he IS only 5 after all!!!!”
I think she felt bad, cause she quickly tried to make it better by saying, “oh well, YEAH, I mean, once they start talking they can be really smart.” (Here is where I sighed deeply, and reminded myself to educate instead of letting it get uncomfortable). I said, “Noooooo. Smart and talking have nothing to do with each other.” I gave her many examples of why I know this to be true and I remained friendly about it. I do think I felt a change in her after talking more. Maybe it was due to me knowing what I was talking about. Maybe she was seeing past his behaviors now, at his potential. Maybe I just felt better saying the truth, and not letting her make us feel like less. I don’t know, but the rest of our time together felt different. Better.
So anyway, I share this with you today because these thoughts are out there, even from the well meaning. And people hold our kids back without even knowing. They hurt us parents by taking our hope away. Yes, autism is not easy. It’s very challenging actually. Maybe one day I can write about those hurts I have sometime, but I don’t like to because those challenges are not everything. They are not what defines our kids or our families.
So in honor of autism awareness, I ask you to PLEASE speak up if you encounter this kind of talk. Please, change someone’s mind by sharing your knowledge. Don’t put our kids in the “broken toys” box. They may take a little longer, but they can get there! I will not stop dreaming for my son’s future. (….and um, he’s 5…are you kidding me???)
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