The Importance of Awareness; The Beauty of Acceptance

We just got back from visiting friends and family a few days ago. On our trip with multiple get togethers something pretty amazing happened. There were still meltdowns when his senses were assaulted . There was still screaming from time to time when his anxiety got the best of him. There were still tears from communication breakdowns. There was still aggression when communication wasn't working. It was all still there. But there was a difference. There was no staring or gawking. There were no harsh remarks. There was a lot of accommodating and many had their get togethers set up with us in mind. No one batted an eye when he saw a Christmas tree and screamed for presents (at people that had already given him presents the day before). We worked through it all and I didn't feel embarrassed or on edge. They got it. And because they got it there was also a lot of laughter. There were a lot of moments that he enjoyed. He made memories and made friends because they accepted him for him.
The reason they got it: Every friend and family member we visited follow my blog and are learning as much as they can about what he goes through with his senses and his communication issues. They also know how hard he has worked to be doing as well as he is. That is awareness, people.

"Awareness" is becoming a bad word in autism/disability groups. One of my favorite groups is imploding due to this argument and I have since left the group, because no one has time for circular arguments that go nowhere. Some self advocates are asserting that parents aren't supposed to talk or write about a disability that isn't their own, an argument that completely disregards the reality that some of our children may not ever be able to advocate for themselves. We are not mommy martyrs for telling about the hard days. We are not objectifying those with disabilities to make us feel better about ourselves when we share stories of accommodation and acceptance. We are, instead, showing the world what accommodation and acceptance looks like and how it can make a difference for individuals with disabilities.
Acceptance is, of course, more crucial than awareness. But how can those outside of our community accept what they do not know? How can they understand what we do not tell them? Had I never laid out what sensory overload looks like, our friends may have thought he was just weird or a brat. Had I not explained that aggression can be part of one of his meltdowns, they may have thought he was just aggressing to get his way. Had I not explained his rigidity and need for meeting expectations, their feelings may have been hurt when he yelled for more presents. Do not discount awareness; there is something to it. Awareness lays the path to acceptance, whether or not others choose to follow that path is up to them.
To those that went the extra mile to make us not only feel accepted, but welcomed, I say thank you. And I say thank you because it's not enough to just know about his differences, it means so much more to accept them.

Comments

  1. Parents aren't supposed to talk or write about a disability that isn't their own, an argument that completely disregards the reality that some of our children may not ever be able to advocate for themselves.

    *****

    I appreciate what you write - very much.

    And I know exactly what you're saying. My son is in this boat, too.

    Thank you for being a voice. Not only for your son. For mine.

    And obviously - many more. Thank you. It matters.

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    1. Thank you for your kind words. It definitely matters!

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  2. I have autism. I also have severe Crohn's disease and migraines. In many ways, my mom has been more acutely affected by my diagnoses, struggles, and hospitalizations, than I have. She cried when I was bullied, when I hit myself in frustration, when she found me curled in a non-responsive ball of pain on the porch, when I was prescribed yet another medication for my Crohn's... Because the experiences are directly mine, her intense empathy isn't something I can always understand. But then, as she points out, I'm not a parent. She tells me that when you carry someone in your womb for nine months and watch them evolve — a living piece of yourself — you're so inextricably to them, that their pain, joy and movements through life are all partly your own.


    So maybe I'm in the minority here but I would never tell her that she had no right to talk about me. I have my own "first-person" experience, yes, but she also has her own parallel experiences being my mother. And the two are utterly intertwined. Occasionally she shares bits of our gestalt experience with others (students, parents, etc) when she feels it would be a support to them, and I've always been okay with that. She's always courteous and respectful.

    I don't even know that it boils down to a "speaking-for-self" vs "not-able-to-speak-for-self" issue. I've learned from my mom is that her love for me means that her story and my story are interconnected. And she has her own equally valid narrative that, in my mind, deserves compassion and respect.

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    1. Thank you for sharing such an amazing perspective.

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    2. I agree! Thank you, Heartistsmuse, for sharing your amazing perspective! I was delighted to read what you had to say.

      CiM

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  3. My daughter has autism and I always find myself having to explain her behavior to family members. Strangers are very nice, family tries but they think just put on meds. Thanks for your blog it gives me hope for the humanity.

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