Wednesday, April 3, 2013

April Awareness

April is Autism Awareness month. And also (lesser known) Limb Loss Awareness month. I am vested in promoting awareness in both these areas. Why? Because I am a Special Needs mom to one of each. O, our 8 yo son, was dxed with Asperger's (an Autism Spectrum Disorder) last year. And A, our 1 yo daughter, was born without her right hand. "Lost" to ABS (Amniotic Band Syndrome) in utero.

Just like most everything now-a-days, there's controversy surrounding Autism Awareness month. Many feel (and it Could be true) it should not be awareness but action. That Autism Speaks is using this month not be bring real awareness but just to raise funds. I personally don't care what Autism Speaks is doing. Many want more of the funds raised to go to finding a reason, a cure. And don't feel that's happening fast enough. As a parent living in the trenches of Autism, I don't care about any of their issues. Period. Autism Awareness to me is about spreading awareness, and hopefully acceptance.

I have it different than some. I have a child with an obvious physical difference. People are kind, and accepting of her, of us, from the moment they meet her. It doesn't matter what behavior she is exhibiting- she has a free pass. "Oh she's so sweet! What a beautiful baby!" I see unconditional acceptance everyday from strangers.

But I've seen the flipped side too. Judgement, disgust, intolerance. Because Autism doesn't look different. There isn't any physical markers to signal this child is different. O looks like any other 8 yo, until he meltdowns, or gets excited, or has to have what exactly is going on explained in clear precise details. And he's seen as "talking-back", or "nosey", or "spoiled". We are told "He needs a good whooping. He's too old to act that way. Don't you know how to parent." There is no awareness. No acceptance.

I spread awareness in hopes of spreading acceptance. If I can open the eyes of one person, to help to not jump to judgement, to think "I don't know this family, I don't know there situation. There may be something going on I'm not aware." then I've spread awareness, and some acceptance.

A story. This weekend my dh and I were at a fast food restaurant, and I spotted a grandmother and granddaughter coming across the parking lot. The girl looked around 12. The grandmother had the girl by the hand. They came in and got into line. The grandmother keeping the girl close to her. As they got their food and sat down at their booth, the girl waited to eat. The grandmother laid out all the food from the kid's meal the girl had, just so. The girl waited to eat until the grandmother had everything just right. There was little eye contact between them, no speaking and only a slight smile as the girl started to eat. At this time dh and I left. I politely pointed the pair out to my dh asking if he noticed anything. He didn't but to me the girl was obviously on the Spectrum. (Don't flame me please for making this assumption.) Often girls are harder to diagnose, but there are sometimes very clear signs. Signs you see when you have a child on the spectrum, or are aware. This awareness, of what it can look like is important. This awareness brings acceptance. This is why I promote Autism Awareness Month. To others that aren't aware they may assume the grandmother was overbearing, or had control issues. But this grandmother may know her granddaughter is a runner and would run off in the parking lot if she didn't hold her hand. This grandmother probably knows if the food isn't just right it won't be eaten (least case scenario) to a meltdown may ensue (something that is often judged, and looked down upon). This grandmother knows Autism.

It doesn't matter to me personally that you, or anyone, donates money for research, campaigns or the like. It matters to me that more people know what it looks like. I don't hope for a cure, or even a answer to why. I simply want my son not to be judged for being who he is. He will always be this way. I accept him as he is. Just as I accept everyone for who they are. Those questions aren't important to me. The questions most important to me are the ones from others honestly wanting to know how they can help, what my son is like, and the best way they can interact with him. This is the awareness that is important.

I am not angry my son has Asperger's. What's the point in anger? What's the point in being angry with anyone willing to help? Even if you don't like their motives. All that does is divide, and bring confusion. Others may want "action", but we still need to work on awareness and acceptance. We still need to work on educating the masses on what Autism can look like. So children will be accepted for who they are, so parents, caregivers, and doctors are aware of what to look for, so no one will slip through the cracks. Like my O did for too long.

And for those of you who disagree, or are angry, a question- Why waste such precious time and energy? Isn't time better spent advocating for your loved one? Life is too short to always be angry. And joy too limited to be missed. Yes I celebrate Autism, because I celebrate my son and all his accomplishments. I celebrate him as he is, as I celebrate my other "typical" children.

“I am different, not less ”Temple Grandin

 “If I could snap my fingers and be nonautistic, I would not. Autism is part of what I am.”
― Temple Grandin


Image from here

Image from here

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