|Our wonderfully wacky family!!|
Sunday, November 24, 2013
Autism Answer: Because My Mom Was Autistic Our Answer Was Autism
Author's Note: This piece originally appeared on OpEdNews.com and can be seen HERE. I wrote it over a year ago and only now remembered that I should totally share it with you!! I have many posts at OpEdNews, most of which at least make a mention of autism, but this one is absolutely up our Autism Answers ally!! Hugs!!! ~Tsara
Themes. Hollywood takes advantage of them. It’s much easier to tell a story when sticking with a theme.
It can be much easier to understand a life when thinking in themes, too. Our family has a few, but the big one for us is: Autism.
My mom was an undiagnosed autistic. Being her daughter could be frightfully embarrassing, heartbreaking and eye opening. I struggled for years with guilt over the way I treated my mom in my head.
Autism is a funny thing. You can’t see it. It’s very much the same symptoms in individuals (communication difficulties, social disorder, repetitious behaviors and sensory sensitivities) manifesting vastly differently in each. Much like society’s view of depression, there are those who want to believe that it’s something people are choosing, or taking advantage of as an excuse.
My mom grew up hearing she was crazy, an underachiever, cheeky, a psychic, a slut, and more and more and more. When she would excitedly share the colors of sound, her mom would hit her. When she answered rhetorical, “Who do you think you are?” type questions with the correct answer, “LynetteLouise”, a punishment and lecture she couldn’t understand would result. She promised herself that one day she would be the mom of many children, so that she could treat them with love and fairness. If she couldn’t understand a world of unfairness, she would create one that made sense. Her autistic perseveration became: Fairness.
As the (very) young mom of two little girls (me and my sis) she had to have a hysterectomy. The depression that followed was short lived but clinical. Because of me and my sister my mom refused to give in and searched with intention for an answer.
The answer came in a crazy and frightfully feral little three year old boy waiting for a bed in a mental institution. My mom became his mom.
He became our brother.
Our answer was Autism.
My mom eventually adopted three more boys on the spectrum of autism. She had an innate gift with my brothers. She believed in them in a way that no person (including their birth parents) had believed in them before. She saw herself in them.
But I intended for this article to be about having an autistic mom, and so it shall.
As the daughter of an undiagnosed autistic my world tended to revolve around how my mom’s weirdness' affected me. If a situation arose at school and teachers were to be contacted I would do anything to be somewhere else for the confrontation. To begin with, no matter how many times my mom had met the teacher it was quite likely she wouldn’t recognize their face and would rudely not remember them. Mom’s vision was pixilated and she had a sort of face blindness. Then once the grown-up in question had been reintroduced, my mom would begin insisting on a fairness that systems and schools just don’t have room for. My mom’s hyper-focus on a fair world left no wiggle room. And although my mom was always kind in the delivery, she was relentless and insistent on the end result. My mom’s kindness believed in compromise, but her autistic intensity insisted on a fair one. One that saw the human needs in everyone, in all of her kids. Yes, even the crazy ones.
For example, when only two of my brothers were permitted to ride the school bus, because they were the only ones broken enough to do so, my mom said absolutely not! She would not have two of her boys forced to walk because they weren’t "disabled" enough while the other two’s disabilities were reinforced by having them not trusted to walk. Mom’s solution? Tie one higher functioning child to one lower functioning child with a shoe lace so they could walk all together to school. The solution was brilliant and when done with explanation gifted everyone with important learnings that believed in a future. The only snag, it wasn’t normal or socially acceptable. My mom’s solution was rather autistic.
No mother could love her children or believe in them more than my mom. Maybe the same, but not more. No matter what child services, doctors or nosy neighbors said, my mom saw us kids as people with unlimited potential.
Lots of days, I hated that.
My mom’s intense belief in fairness (and before you go thinking that at least her perseveration was fairness, remember that a desire to see everyone treated equally drove her into a depression that could have killed her. Her experience of needing fairness hurt her, and she is amazing for reminding herself daily to smile, keep on putting one foot in front of the other and be the change) and teaching the world—as a comedian her fart jokes always led to ozone information and her penis jokes led to hilarious and important jokes of judgments and intentional self-healing—could be exhausting. Her willingness to forgive us kids while coupled with perfectly appropriate punishments was so different from any of my friends’ families that I was often left wondering if my mom was brilliant or crazy.
Because of the autism in our house we prioritized different than most. The question was never, “what will be the easier mess to clean-up after” but rather “what will benefit most of the family the quickest”. Hence, we were a loud, messy, laughing, and crazy group.
There just wasn’t a lot of room for cruelty in our home. Unfortunately, it happened anyway, in my head.
Sometimes my mom would stand up in the middle of a conversation at a coffee shop and exclaim, “It’s too cold. I have to go now.” No gradual easing into it. Just “Gotta. Go. Now.” What we didn’t know at the time was that up until that point she had been dealing with a myriad of sensory overload. She couldn’t tell us because as far as she knew the world she was experiencing was the same as ours. I would be embarrassed at her rudeness in these moments and blame her—always in my mind—for needing attention. When my mom could not stand casual conversation with my friend's parents and therefor walk away rudely, I would despise her snobby attitude. When my mom would drive past our destination six or seven times because she was hyper-focused on an idea that might come together and make the world a fairer place, I would charge her with trying to seem like an absent minded genius.
I had these thoughts and more. Worse were some of the things I thought about my brothers. Suffice it to say that when my mom would insist I see adorable little boys struggling with challenges they could overcome, I considered my mom to be playing the role of martyr, wanting to feel persecuted against by a world who saw disabled children with no future and refusing to see the truth. Everyone else believed my brothers would never be able to be independent. Everyone but my mother. So I chose to believe everyone.
I’m not proud of these thoughts, but they were there. What I am proud of is that I was mostly able to be kind. That I have almost always been very supportive to my mom and willing to open my eyes to the beautiful possibilities she always insisted were there.
I am proud that three of my four brothers are no longer diagnosable as autistic. That my brother who still is at home is happily learning, albeit very slowly. I am proud that my mom has been able to turn her passion for autism and fairness into a global autism/brain expert career, one woman musical comedy show, books, popular podcast, and the international reality series FIX IT IN FIVE with LYNETTE LOUISE aka THE BRAIN BROAD (showing on The Autism Channel).
I am proud that I have taught my own boys the value of kindness and believing in everyone despite appearances or difference. And the value of forgiving your self-centered childish brain for having self-centered childish thoughts.
Our theme for learning these important lessons was autism. Having an undiagnosed autistic mom taught me to be fair, kind, and unassuming.
It taught me to see outside the box, because a box is no place for a person.
It taught me to forgive myself and learn from my mistakes.
Because of autism I have started writing, sharing and being myself loudly. I have chosen a motto for my Facebook page that rings true and reminds me daily how lucky our difficulties can make us.
Motto: Autism asks challenging questions, begs us to think outside the box and then, Autism Answers.
Hugs, smiles, and love!!
Tsara Shelton is a writer, coffee addict, and proud mother of four always eating teenage boys. Random thoughts and pleas for more food can be read daily on her Facebook page Autism Answers.