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.