I have wanted to write about this several times, but find that each time I sit down to type it out, I can’t find the words. But today is the day, and fitting it is, because today is Autism Awareness Day (April is Autism Awareness Month).
I admit that I’ve generally found the idea of an “awareness” campaign to be sort of…I don’t know…redundant because I feel like the thing – cancer, heart disease, autism – is something people are already aware of. In my house it’s part of our daily conversation. But acceptance, well, we could really use more of that. Autism Acceptance Month - yeah, that’s something I can get behind. Because for me, it all really boils down to judgement, which flows so freely and so harshly. And is it just me or does that go double for parenting? It feels like everyone – EVERYONE – my neighbor, that random dude in the grocery store, some lady at a restaurant, my family, they all have something to say about how I parent. Or how they think I parent. In public, my son has massive melt downs, has episodes where he is unable to move, makes funny monkey noises and points and dances when he sees something interesting, points to random people and says, “it’s a monster,” tells me when he hears a baby crying, and dances. These things can be frustrating, annoying, painful, heartbreaking, funny, endearing, sweet, or some combination thereof. People who witness these behaviors make assumptions. They interpret the information they are receiving differently, much like my son does. Except for them it is a conscious choice.
My little man has PDD-NOS, which stands for pervasive development disorder not otherwise specified. In a nutshell, this means that he exhibits classic traits of children on the autism spectrum and then traits of developmentally normal children. He has been receiving early intervention since he was about two. It has been a lifeline, and we will be eternally grateful to the Speech and Occupational Therapists who helped to guide us and him. He has grown by leaps and bounds, and we have seen him gradually unlock himself over the past two years as he has developed coping mechanisms, but he does not and cannot process input the way that most other people do.
Like every ASD person, he looks “normal”. He is a charming boy with a big bright smile and huge blue eyes. You cannot see the struggle it takes for him to break a ritual, to handle a strange person speaking to him, or to interpret a loud noise. You can if you’re his mother or father though. Because we see it everyday. We know that if he doesn’t count the stairs, and if we don’t do it with him, he can’t go down them. We know that he can’t wear jeans or rough fabrics, and that the change of seasons always brings about some difficulty because he struggles in vain to pull short sleeve shirt sleeves down so that they’re like long sleeve shirts, thus adding another place for a meltdown in the day. We know that we let him watch cartoons on the mobile device when we go out to eat because the ambient noise and room filled with strangers overwhelms him, and the show soothes him and focuses him. We know that having that show is a coping mechanism for him, that going out at all used to terrify him and he would break down. You don’t know. You are not his parent, random stranger, and you might not give me mean looks if you kept that in mind. And when you, random strange mother, make snide comments just loud enough so that I can hear them to your own children about my child watching the show because they’d like to join him, maybe consider that you might not know the whole story. Or better yet, just don’t be a Judgey McJudgington. Who is it helping anyway? Not you. Not me.
Plus, every time you judge someone, a sweet little puppy dies. It’s science.
You don’t have to be the mother of a child with special needs to understand this feeling, I’m sure. Hell, you don’t even have to be a parent to understand this feeling. Someone has given you a look at some point in your life that said, “you are less than me,” whether you have a kid or you are a kid.
In a perfect world, I could call for a cease fire on this blog that would incite an epidemic of nonjudgemental behavior. And there would be flowers and sunshine and happiness. And that would be awesome. But it won’t happen, so in the meantime, I will celebrate the friends and family who are sharing autism awareness photos, letting me know that there is a large community of people who are accepting and supportive. I will celebrate my amazing husband, Frank, who is an understanding partner in this journey. I will celebrate the kind words from strangers: the woman who saw me struggling to pull out a “vroom vroom” car grocery cart embedded in a long run of carts, who simply said, “I work with spectrum kids,” when I looked at her helplessly as I frantically yanked on carts, and then joined me in my quest; the random strangers that my son takes to right away and who coax positive behavior out of him; the many people who have stopped to tell me how adorable he is; the mothers who have given me kind understanding looks when he has been in the middle of a tantrum or a meltdown; his cute little friends who call out his name happily on the days when I’ve had to bring him late to school.
Most of all, I celebrate him just as he is. The joyful boy who is sincere and earnest and kind. If I (or anyone) am hurt, he will give me a kiss and pat me, look at me with concern and say, “all better, mom?” If he makes you laugh, he will keep doing whatever caused the laughter until you tell him to stop. He stacks blocks like a beast. He loves his grandma’s cookies. He is devoted to his family. He is obsessed with eggs (Easter was a big holiday this year). He’s crazy for birds. He is a dancing fiend – we frequently have to stop for dance breaks when we’re in a store because some music comes on and the spirit moves him. He charges into things repeatedly, crashing into them and falling to the floor laughing. His favorite color is red. He has a crush on Belle from Beauty and the Beast. He barely had ten words when he was two, and now he will enthusiastically tell me “the sign says S-T-O-P; that spells stop!” He loves the ocean, when only 16 months ago he was terrified of baths. He is the bravest person I know and he inspires me everyday.
This month and every month, I will stand for awareness and acceptance for my son, for Meg’s son, for Miranda’s son, for Mollie’s nephew, for Rebecca’s son, for Scott’s brother, for anyone with an autism spectrum disorder. For all of us. Because, really, it’s the least we deserve.
UPDATE: We’re doing a walk for Autism Speaks this weekend with our son. If you’d like to support the cause, please click below.