In honor of Autism Awareness month in April of last year I started a project to raise my own awareness on my small little corner of Facebook by lettering each day A-Z and sharing a little bit what autism is and what autism isn’t. I have two beautiful boys both with Autism. They couldn’t be any different and while each have their unique challenges they also each have their unique strengths. Given how differently they present I thought it might be worthwhile to talk a bit about how Autism can manifest, issues facing individuals with disability and how Autism is a family systems issue. My boys don’t just have Autism. We are a family living with Autism. Initially without telling too much, I shared how things might look a little behind closed doors along with a personal photo to my friends who might not otherwise get that glimpse. But as the days in April passed and I became more comfortable with the safety of Facebook, a change took place with my friends on my page. Instead of the usual 20 or so likes I would get per post, I started getting hundreds. I also started to understand that perhaps the wrong kind of awareness exists. Friends and colleagues began to approach me to let me know just that and thanked me for my efforts. Acquaintances stopped me to ask questions. I had others quietly ask me for advice since they weren’t “out” yet with their concerns about their child. And yet others were even apologetic telling me they wanted to help in some way.
Somewhere around “K” in the A-Z tale, my husband who is a private person changed as well. Between the “likes” my posts were getting, the kinds of questions and comments being asked and he too was being stopped by supportive members our community he had a change of heart. For the first time, he let me know that he was proud of us as a family and that he believed I was changing for the better through the process of writing. I had not changed. I finally felt I had permission to be open. The more he saw he could trust that I would still protect some of the more personal aspects of our life while still being honest, the more open and honest I could become. The process was cathartic for both of us. I asked my 12 year old to read and approve every post or blog pertaining to him and allowed him to be his 10 year old brother’s voice of approval as well given he does not have the voice to approve. My slow-to-warm, seemingly uninvested Aspie now looks forward to reading my writing and even asked to attend a large and lengthy public speaking engagement where I will be presenting. Though I started with something on April 1st…26 days later I ended with something else.
April is Autism Awareness month…something that is like some weird little carrot in our world where every day is Autism Awareness Month. I erroneously thought “we don’t need any more awareness…unless you have not interacted with the world at all in the last 10 years…everyone has heard of Autism…everyone knows someone with Autism…enough already with the awareness….”. We need to DO something to help. But as I found, most people who don’t live with Autism don’t understand it even though they thought they did. And they certainly don’t hop on disability mom blogs to understand more. I don’t fault them for that. I would not either. I am a mother of two beautiful boys. We live with Autism and other impairments here and apparently I was doing a wonderful job of walking through the world making it look like any other parenting…..and their differences looking like any other differences a child might have. Though their Autism defines them about as much as their big brown eyes, this projection makes everyone around us more comfortable but ultimately it becomes the elephant in the room. Not just for those who want to ask questions around my silent insistence things are “just the way they are” but by letting my kids think that they are just like everyone else…when they are well aware they are not, leaving them wondering why their feelings are incongruent with the reality we try to portray. So this year I will again start one more blog A-Z. Its not everyone’s journey in Autism, but it is ours and it has been healing for all of us to say it out loud.
Reblogged this on Running through Water and commented:
From one year ago. This year I will commit to Autism Awareness Month a bit differently. I have learned a lot in the last year and recognize my own catharsis in the shifting of focus as my child ages. Parents and self advocates must co-exist and unite in a way that opens the doors to awareness that will benefit all. And us parents…well…we gotta start somewhere…