I have many friends, acquaintances, colleagues who will agree with people whom I’ve never met or will ever meet, that say “we don’t need autism awareness for April, we need action! We need acceptance! Stop the awareness!”
Stop what you’re doing. Stop talking. Pull up a chair, grab some coffee (and if you would be so kind, share some with me because I need plenty more after the next dip in our roller coaster), and just … LISTEN. Oh, and bring me some cream and sugar, because I don’t take mine black.
Awareness, by definition, is “the state or condition of being aware; having knowledge; consciousness.” For hundreds of thousands of people, their awareness of conditions and causes ends with being in a state of consciousness.
STOP TELLING ME WE DON’T NEED AWARENESS.
Just stop. I will confidently, completely and unapologetically call bullshit.
Our world and its communities are NOT fully aware. They do not understand the full spectrum and the ups and downs of individuals, of their families, and of those who educate, support or care for them. One cannot just read articles, blogs, a few memes, watch a couple of episodes of The Good Doctor or even know one or two stories to “get it.” Even parents and caregivers, educators, and professionals across the field (even me) cannot fully grasp the whole picture. That picture is always changing and evolving every minute of every day. Opportunities forever exist to learn and grow, and we need to hear more stories and more journeys. More importantly, we need to listen to them. Not just hear them, but to listen to them, to process them, and then take action.
It starts with ongoing awareness that can never stop. We cannot accept and act upon what we don’t understand and cannot expect others to do the same. People don’t know what they don’t know.
Here’s what I know in this moment:
This week, my son with autism lost his job. Specifics and nitty-gritty details are not of importance and honestly, it is simply not my story to tell. That is my son’s and I will only share an overview with his permission out of respect for him. He worked there for almost ten months, and had many struggles along the way. He had a conflict with another employee in another area of his store that went unresolved to his satisfaction. However, he accepted a different position and chose to move forward with the support of a great job coach and management. He continued to work in a checkout line, occasionally placed in the express lane which increased anxiety as he felt pressured to move faster. There were also a few “bad apples” in the bunch who were consistently rude and short with him during his shifts. Though sadly commonplace and something he’s going to have to learn to cope with as we all do, it’s harder for him to brush the dirt off his shoulder and just keep going. Mistakes were made and feelings were triggered, which manifested behaviors and verbalizations that were hard to control. A few simple accommodations and a little extra kindness from others would have went a long way. Had that been the case, he’d be at work right now while I’m typing and he wouldn’t be home making his lunch and still struggling through the feelings of “what now? Will anyone ever want to hire me again? Am I a bad person? What is wrong with me?” As he worked for a popular disability employer in Pittsburgh, I’m so disappointed. My son is not blameless, but I could not be prouder of his accountability and his resilience. He may write a letter to the union so that next time (if and when there is a next time) that this location hires someone with autism or some sort of disability or difference that they will be … a little more AWARE … of what perhaps can be done even ever so slightly different to promote success.
So yes, we’re facing yet another hurdle which we need to – and will – find strength in and we will move through in our own way with our village. What blows my mind is the amount of hope he has finally found! He has HOPE! He posted on Facebook a few hours after he was let go, and he talked about of course being depressed, but how he can take this situation and make himself a better person. He talked about what he CAN do – find new work that makes him happy, focus on his health and use some extra time for exercise, and to better control himself in order to become the best version of himself that he can be. He is looking forward to what and who he can become rather than dwell on what he can’t change. He called his job coach within two hours. He called his therapist right after to make an appointment that evening.
That was the immediate action that my son with autism took after getting fired. For the love of all that is holy, how many of us without autism would have done the same thing?
I know what I did one year ago when I felt compelled to pack my shit and walk away from what at one point I referred to as my “dream job.” I drove to the closest coffee shop in the pouring rain after hysterically crying “see you later” to my now former colleague (but thankfully still dear friend) so I could wait for my son to finish his program that afternoon. I walked upstairs to a private room and cried for about three and a half hours into a peanut butter flavored latte (don’t knock it until you try it, yo). I called and texted a few people, sure, but I otherwise just sat and cried and grieved what at the time was a huge loss for me. Despite those horrible wrong doings that I faced as an employee and as personally as a mother and
advocate activist, I couldn’t help but feel like I let my community and myself down. When I accepted that position, I lost friends and the respect of some who couldn’t believe I went to work for the organization. But for those who believed in me and knew what I wished to accomplish from the local chapter and upwards, a part of me was still mad at myself. I wondered if I should have fought even harder to be a change agent and make waves. So, I cried some more. A loooooot more.
But as I left that day to pick up Christian and then head home to finally start to piece together my “what next,” as cliche and corny as this sounds I saw the sun come out. I heard birds chirping. I felt a peace come over me and I was even more at ease with my decision. I knew I had many feelings to sort through but that I’d also have to hustle hard and quickly being the breadwinner for my household.
Don’t get me wrong, Christian cried too – oh believe me, he has cried. We both have. But, the show must go on. And he acted more swiftly than I.
This is just another excerpt of our story. How many is that now, 792?!
Sometimes, I wonder if this is where my writer’s block comes from in finally pulling that best-seller out of my head and putting it on paper. Imprisoned No More is an ever moving target and new chapters will emerge. But some chapters from our past are locked in my head and I just can’t seem to get them out.
But our story is important. Every story is important. And that’s why I need to find a way to finally tell it, and in its entirety. And I need to read and hear the stories of others to make ME more aware of what others experience. Don’t ever think your story doesn’t matter. Your story and experience with autism (with anything, really!) isn’t just “another autism parent story.” Christian’s story isn’t just “another autism story.” Only you can tell your story, just like only I can tell mine. Our stories can bless others. Our stories create ripples and waves. Our stories can change the world.
Our stories make people AWARE. When they are aware, they can understand. When they understand, they can take action.
This month, I pledge to continue to do my part – as I am committed to doing the other 11 months of the year – to raise awareness, to educate others, to increase empathy, and to create positive change. I won’t have it any other way.
For those who have messaged me as they do every year asking “will you be posting your speech again from 2008? Will you tell your story again?” Without a doubt, you better believe it. This year is the 17th anniversary of the incident that forever altered our lives, and the 10th anniversary of delivering that speech to over 700 people at Heinz Field. I just commented on a parent post today where yet another mother was judged, the authorities called, and a child traumatized. Why the $%*& is this still happening in 2018?!
Because … we still need to raise awareness.
No, we are not aware enough. I’m not sorry to say it. Please join me in the mission to raise awareness, to educate others, to increase empathy, and to create positive change.
Take my hand.
Are you with me?