So I know it's been awhile but I thought how fitting to find the time to write for Autism Awareness Day. Here's the thing, everyday is Autism Awareness Day for me and my family. Everyday Autism is a thing and although I'm grateful the world takes the time to recognize Autism on this day and in April, to me its not enough. For me when April is over, Autism does not just go away. For me it's here to stay! This day needs to be more than wearing a blue shirt (which technically does not represent Autism, but represents Autism Speaks) I know the day is to bring Awareness, but it is still very misunderstood. The day should be about teaching what Autism is and how to accept it and not on wearing a puzzle piece or a certain color. These things take away from what families like mine go through. For me it is about watching my son not be able to tell me how he feels but watch him cry in pain. For me it is about watching my daughter want to fit in, but struggles with properly responding. For me it's ABA classrooms, speech sessions and OT and PT and IEP meetings. For me it is about having to map out parking lots and how long lines will be so we can successfully go somewhere. As my children get older, Autism gets harder. Not to mention this pandemic has taken a toll on families like mine. This pandemic has shown no mercy on kids with Autism and other disabilities. Our children thrive off structure and consistency and do not adapt or have the flexibility to go to school one day and do home school the next! It is hard enough for a neurotypical child, let alone children who do not have the mental capacity to understand what is happening. Families like mine have been isolated even worse than before the pandemic. Dyllan will not tolerate masks therefore we are barely "allowed" to go anywhere. What people don't see are the hour long tantrums about not going to school, or to the mall, or parks, or out to eat. For my daughter who struggles socially, this pandemic has set her back without being able to practice skills she is taught because she is barely allowed to go near anyone.
To families like mine, Autism Awareness Day should be spent saying the word Autism and explaining what that means. I find it difficult that the word "Autism" is left out when explaining what it is to other children. Maybe if they heard the word more, there would be more acceptance and less bullying when they are older! It is ok to say Autism makes them think differently or learn differently, but they still crave the same things as other children. They want to be comfortable with being themselves and being accepted. They are not weird or odd but have quirks and thresholds that make them seem different or respond differently. Dyllan does not care where he is if he is excited he will jump and yell and he should be accepted for it. Have you ever seen my daughter walk into a room!? Hair in a bun, cat ears on, backpack with 1 million keychains attached, filled with ty cats, holding cats and wearing cats with leopard shoes! She is a lot, but that's what I love about her! She is, for sure, my modern punky brewster. What people don't see is her internal struggle with having to have all these things to feel safe and have security. But this is what makes her most comfortable and while it may be distracting to others this is what she needs to feel safe and that's all I care about. On Autism Awareness Day I would love to see more about accepting Autistic adults. They do not outgrow Autism. Our children with Autism grow into adults with Autism. I know there is great efforts being made to train staff and law enforcement how to recognize if their behaviors could be Autism behaviors and how to successfully interact with them. My biggest fear is one of my kids having a sensory meltdown or Autiam breakdown when they are adults and being treated badly by someone who doesn't understand whats happening. It's terrifying.
I thought Autism was hard when they were young but holy smokes I couldn't have been more wrong. It was easier to focus on getting them to a certain developmental level or if they did something outrageous I could use their age as an excuse! Now they are 7 and 8 and people notice things more. With noticing more comes the eye rolls and comments. There needs to be more awareness surrounding that. More awareness for the moms and dads struggling to stand in line at the grocery store or a store like target while their child is pushing sensory overload. Ask how you can help rather than staring at us or judging us.
April 2nd is more than sending an email to your coworkers or friends telling them to wear blue or rock a puzzle piece! It is about teaching our children, our family members, that Autism is real and it is hard! Let's teach our children how to he a good friend to someone with Autism. Teach them how to keep these kids safe and to speak up if they are being bullied. Teach them they have struggles and may not be able to speak but they can hear what you say. They have feelings just the same. Teach them that just because they may not be good at something doesn't mean they don't enjoy it. Teach children that sometimes they may not know how to respond properly but they are not trying to be rude. Teach them that they love to know a friend is there even if they need more space than other friends. Teach them they have empathy and feel deeply it may just look different. Teach them that even if they are in special education classes that they are still smart just need to be taught in a different way. They want to be loved and included. Teach them to never give up on kids like mine! Teach them that Autism makes them really good at things that others may find really difficult such as math or reading but other things such as making friends may be difficult. Teach them that they may need space or do silly things to help their bodies feel comfortable such as handicapping or spinning! Teach them to treat them just like anyone else!
Although Autism Awareness Day and month focuses on the struggles of Autism I also want to share the wonderful things about it as well. If you want to know what a real hug feels like, ask Dyllan for one! He will hug and squeeze you like you've never been squeezed before! He hugs you like it may be the last time he will ever get to. When he hugs you and kisses your cheek, you feel his love right down to your soul. When you watch him enjoy his helicopters and trampoline you can't help but smile and see how innocent he is. He known no harm and sees no evil. His soul is pure and his love for his family runs deep. My girl Jazlynn is one of a kind. She's extra and over the top.. She loves and appreciates nature and sees the hearts of any animal she meets. She's so smart and likes to learn but on her own time. She still fights me to keep her home rather than send her to school. She's intrigued by different languages and cultures. Her passion for cats is like nothing I have ever seen. She's assertive and strong and although it will be the death of me, I know it will serve her well when she's older.
So on April 2nd and every other day let's not only raise Awareness for Autism but accept it. It is real and hard and beautiful but for families like mine will not leave my home on the last day of April. I will spend everyday for the rest of my life fighting for them and making sure they are accepted because, they along with every person with Autism Spectrum Disorder, deserve to be understood and accepted today and everyday!
