I questioned whether there was any worth to putting into writing, yet again, how Autism has effected the life of my daughter and by extension myself, her father and her younger sibling. I questioned whether giving voice to my rawest emotions and most vile feelings would offend the sensibilities of the few people who may read this. And then I reread A Letter To My Daughter and I remembered exactly why it is that I bother.
The reality is that life will not be easy for my child. I wish that I could pick her up and smother her in love and wrap her in self-acceptance and strength and courage and whisk her far away to a place where no one could ever hurt her. But that is not reality. And although there will be some walks that she will have to take alone, I promised myself that until the day that I drew my final breath I would raise awareness and understanding for her daily challenges, and fight for her acceptance and inclusion. And to hell with the naysayers.
So today, April 2, 2016, marks the eighth annual World Autism Awareness Day. And on this day I will make good on my promise and tell whomever will sit up and take notice the 3 things that every person needs to know about Autism.
In the simplest possible explanation Autism causes a person's brain to not function how we would expect. In more technical terms Autism impairs a person's neurological development, and can effect such things as social interactions and verbal and non-verbal communication.
For my daughter Autism has meant hours of testing with professionals from various fields, and even more hours of therapy learning basic skills that come inherently and naturally for neuro-typical children. Before her Autism diagnosis, I can remember having to teach my child that when someone said hello to her, the socially appropriate thing was to respond hello back. And I had to teach her that after unintentionally hurting another child, it was socially inappropriate to laugh or then become angry with said child as though they were the one that had done something wrong. Interpreting social cues and non-verbal communication are daily challenges for my child and expressing thoughts clearly and understandably can be difficult. For her Autism has meant having to learn how to attempt to make friends, having to learn how to engage peers in conversation and having to learn how to sustain play with them.
And it's constant. Although the severity of the impairments may vary from day to day, it's always there; always my child's underlying current. Autism continuously poses challenges in her everyday functioning and interferes in her daily interactions. And as her mother what choice do I have but to helplessly watch the scene unfold. And this is my child's life. Every day it is her life.
Autism is also a giant black binder filled with every referral, every report, every assessment and every therapy plan ever made on behalf of my child. It is countless hours and kilometers spent driving to appointments, thousand of dollars spent seeking the best advice and help possible, and more tears and more sleepless nights than I care to recall worrying about the well-being of my child and what the future holds for her.
For my daughter Autism has meant hours of testing with professionals from various fields, and even more hours of therapy learning basic skills that come inherently and naturally for neuro-typical children. Before her Autism diagnosis, I can remember having to teach my child that when someone said hello to her, the socially appropriate thing was to respond hello back. And I had to teach her that after unintentionally hurting another child, it was socially inappropriate to laugh or then become angry with said child as though they were the one that had done something wrong. Interpreting social cues and non-verbal communication are daily challenges for my child and expressing thoughts clearly and understandably can be difficult. For her Autism has meant having to learn how to attempt to make friends, having to learn how to engage peers in conversation and having to learn how to sustain play with them.
And it's constant. Although the severity of the impairments may vary from day to day, it's always there; always my child's underlying current. Autism continuously poses challenges in her everyday functioning and interferes in her daily interactions. And as her mother what choice do I have but to helplessly watch the scene unfold. And this is my child's life. Every day it is her life.
Autism is also a giant black binder filled with every referral, every report, every assessment and every therapy plan ever made on behalf of my child. It is countless hours and kilometers spent driving to appointments, thousand of dollars spent seeking the best advice and help possible, and more tears and more sleepless nights than I care to recall worrying about the well-being of my child and what the future holds for her.
2. What Autism Is Not
Autism is not predictable nor is it consistent. It effects all whom it touches differently. That is why persons
with Autism are referred to as being ‘on the spectrum’. Each persons’ symptoms and severity, thereof,
differ. Sometimes the difference is mild,
other times vast.
Autism is not a "made-up North-American thing", contrary to what uneducated persons post on social media. Autism is not a disease, contrary to what an ill-informed youth told my daughter on the schoolyard. Having Autism does not mean that a person is "retarded", may never go to high school, may never drive a vehicle, or may never live on their own, contrary to what the most ignorant medical "professional" I've ever encountered told me about my child. Having a child with Autism is nothing like "thinking you were going to Paris and winding up in Holland”, contrary to what my daughter's second-grade teacher told me simply because my child didn't know where to put the eyes and nose on a cut-and-paste face. And autistic behaviors and tendencies do not need to be "policed", contrary to what that dinosaur of a woman told me at the park because my child was having difficulty waiting her turn in line for the monkey bars.
Autism is not a "made-up North-American thing", contrary to what uneducated persons post on social media. Autism is not a disease, contrary to what an ill-informed youth told my daughter on the schoolyard. Having Autism does not mean that a person is "retarded", may never go to high school, may never drive a vehicle, or may never live on their own, contrary to what the most ignorant medical "professional" I've ever encountered told me about my child. Having a child with Autism is nothing like "thinking you were going to Paris and winding up in Holland”, contrary to what my daughter's second-grade teacher told me simply because my child didn't know where to put the eyes and nose on a cut-and-paste face. And autistic behaviors and tendencies do not need to be "policed", contrary to what that dinosaur of a woman told me at the park because my child was having difficulty waiting her turn in line for the monkey bars.
Having Autism is not the life that I would ever have chosen for my child. But she's not alone. Statistics indicate that 1 in 68 children are diagnosed with Autism. Clearly Autism is not going away any time soon.
3. What You Can Do
Be kind to those persons whose differences and daily challenges you may, or may not, understand. If you cannot manage compassion for, or tolerance of, those persons, than at the very least treat them no less than you yourself would want to be treated. And teach your children that every human being is deserving of respect, and that is never okay to belittle or bully someone because they are not like them.
Stepping outside of one's comfort zone is never easy. But if you bear the discomfort, comfort will come. Invite that child whom you know gets excluded from class birthday parties to your child's next one. Contact the parent of that child whom you know has difficulty making social connections and arrange to have them over for a play date. There are some extraordinary persons within my community that have done just that for my child. And let me tell you, there is no greater joy than seeing the smile that lights up her face from knowing that she is thought of, accepted for whom she is, and included.
Not once have I questioned whether to accept my
daughter for who she is. As a mother I do
not even believe that that is a choice that we are even given. You just do.
I desperately wanted a child and I loved my daughter from the moment I
realized that she was growing inside of me.
The fact that she was born with Autism Spectrum Disorder did not change
that. I am her mother. She is my child. And so it is that regardless of whether this blog falls upon deaf ears or not, whether it evokes change in just one person's perspective or not, until the day that I draw my final
breath I will strive to raise awareness for all persons effected by Autism and continue to fight for their acceptance and inclusion.
