It was our beach day.
I was trying hard with four children to get out the door by 7:30 a.m. We were off to our beach, Jellybowl, and there was still a bit left to do. I had three kids of my own plus one friend to get organized, sandwiches to make, a dog to feed and a cat to appease. The kids needed to get dressed, remember their rash guards and beach shoes and mom needed to remember to find the sunscreen, pack chairs, gather enough towels, bring clean comfy clothes for the drive home and enough drinks to keep everyone hydrated (but not too many since I would need to carry all those drinks up and over the train tracks on the trail to our Jellybowl). I’m pretty good about the chairs and towels but I have forgotten the sunscreen before and it is never pretty. I didn’t grow up using sunscreen so it is not top on my list. But today I have been entrusted with a friend’s child so I can’t mess that one up.
Ok, I digress. Away from the sunscreen and back to my point. This is about autism. Really, it is. Just wait for it…
So in the middle of the chaos after I have just finished cleaning up the zucchini bread mess the dog left in the kitchen (because we did not adequately protect the zucchini bread my daughter made from the food obsessed labrador) and I am in the middle of brushing my teeth when my fourteen year old comes in to my bathroom to finish drying her hair. It’s all good. We co-habitate well and we share pretty well too. And, at the same time as my daughter begins to unravel the cord on the hair dryer, my twelve year old comes in to ask if I will tie his swim trunks. He is all about being naked at home and not ashamed of his body in our halls but being on the beach and losing your shorts is an entirely different story. He wants to be certain his shorts stay up.
With my toothbrush in hand and the toothpaste slop dripping off, I ask him to wait a minute. He stands there patiently, waiting pretty well and then his sister does this thing she has started doing. She is fourteen, he is her little brother and the really neat thing I see that morning is that he is just her brother… before he is her autistic brother, and she does this thing. She steps in to help out. Without a word, without a huff or complaint, without announcing it to me and before she plugs in the hair dryer she instinctively reaches down and, in a motherly fashion beyond her years, she ties his shorts. He says thank you and goes on his way. Without fanfare, she asks, “Isn’t this autism day or something?” I finish brushing my teeth and tell her, “It’s autism awareness day.” It’s a quiet conversation between us. I tell her what the world is doing. She asks what we are doing. I tell her we are going to Jellybowl. I tell her she can wear blue if she wants to.
I smile quietly to myself so that I don’t shine too much light on it. This is all normal for her now. I realize as we are speaking to each other that…. autism is natural to her. Autism was never really part of her existence. Well, it was and it wasn’t. Everything about autism is familiar to her but it just never had a defined name. It was not applauded or hated during her childhood. It was not painted in neon and carted around our life. It was just part of us and, because of that, autism is different to her than it is even to me. It was just her little brother. We never spoke about autism or being less or giving him special privileges. He was simply her brother and she treated him…well, just like a brother. She never asked what was wrong with him, he was a part of her world and she just accepted who he was. His value was simply equal to hers and her other littler brother. Yes, he might have been quirky or amplified at times but it was normal to her. He is nothing more than the older of her two little brothers.
She was twelve before she ever spoke the word. She was twelve before she ever asked what autism was. She was twelve before she asked if her brother was. I had books on the shelf and she was helping me organize them. Actually, being the girl she is, she asked if she could organize the shelf. When she was finished, she asked, “Mom, is my brother autistic? You have a lot of books about autism.” And, that was the beginning of her understanding and maybe even putting together the pieces of her memories. It wasn’t a big conversation. I think I said something like, “Yeah, he is. But that doesn’t mean we treat him any different. We expect as much out of him as we do anyone. He is just as capable as any of us and just as intelligent. This doesn’t change anything.” Her response, in that oh so lovely fourteen year old tone, was something like, “I know, Mom.”
And, she is the sibling. She is the next generation. She is amazing. She knows autism on a different level than most of us and it is simply part of life. It is neither less nor is it more. It just is.
She is the awareness others seek.
And, honestly, there is little fan fare. We don’t hang banners, we don’t do walks, we accept and love it and bring it to the world in our quiet way and when others ask, we say, “Yeah, it’s autism.” And, they say, “That’s autism?” And, we say, “Yeah, it’s autism. Yeah, that’s what it looks like.” It looked different at three than it does at twelve but, yeah, that’s what it looks like. It was a lot crazier at three and at five and at seven than it is at twelve but he is still himself. Autism is part of him but it is not all of him. Yeah, it’s autism but it’s more than that too because he is more than autism.
My daughter is a straight A student who has an IQ that mine never ventured anywhere in the vicinity of and I have great hopes for her. She is remarkable and I hope one day that because autism is so natural to her that she will be the awareness in her generation that says, “Yeah, it’s autism. So what?” And not the kind of “so what” that says we don’t care about your needs because you are not like us but rather the best kind of “so what” that says, “What’s your point?” The kind of “so what” that says we all have the same value and WILL be treated equally. And the acceptance that follows the awareness begins with her as a role model for autism’s “So What-ness.” By birth she has become an autism ambassador but, the really cool thing, is it is so natural to her…she doesn’t even know it. She simply accepts it as normal.
I hope she becomes a scientist or a doctor or the POTUS and with her strength and her ability I hope she sets the tone for her generation to begin to see autism through new eyes. Her kind of eyes that see iridescence rather than a lessening of value. In my biggest dreams (mine and not hers I have to tell you, LOL) I imagine her becoming a doctor who works with kids. And, with her understanding, I imagine her telling these new parents, “Hey there. Yes, I do have the diagnosis. We have found that your child is a bit iridescent. The official term is autism but seriously, with the experience I’ve had, I have come to see autism as so much more than just one word can contain. The word, autism, is so confining but these kids are overwhelmingly iridescent. Yeah, you’re right, he/she is going to be quirky. It’s a kind of quirky sparkle that you may not be used to and you may need some support with it. I know, it won’t be easy and some days will just down right suck but, take heart, these iridescent kids are crazy brilliant. You just have to be patient. Part of their brilliance gets stuck in their sparkle and it takes a little longer for these iridescent kids to sort it all out. Don’t give up and don’t lower your standards though because he/she sure is going to surprise you. OH, and hey…let me tell you about my brother.”
And, I know, not everyone will agree with me. I get it. Autism is different for everyone. But this is my dream…that one day the awareness will be so internalized that no one will care about the differences, or the tantrums or the lack of eye contact because we will also have a plan of action, a path to follow. I hope one day that people will understand more so they will point and blame less. I hope one day play groups won’t gripe and complain about their inability to socialize as easily as others and teachers won’t feel they are doing favors or being slighted by taking these kids into their classes. That it won’t take specialized training to prepare teachers for autistic students because teachers and school districts will be expected to teach all students together and equally. And, when the world is trying to point fingers and lessen those with autism I hope she, and others like her, stand up with their young peers and begin a new generation that says, “Yeah, it’s autism. So what? It’s all good. We are all the same.”