Being the parent of a child with special needs isn’t something anyone plans for. As parents, no matter what our child’s disability is, we are in a club; we have a special unspoken bond. Though our kids may have completely different things going on, we still get it. We all understand each other’s struggles, the sleepless nights, the endless doctor’s visits, and difficulty in social situations. We can laugh about the crazy hoops we had to jump through just to get out of the house in the morning, cry together about our kids being left out, or cry happy tears together when they are finally included. Every parent wants what is best for their child. Every parent hopes that their children will have friends, and succeed in school. Special needs parents want these things too, and work tirelessly to ensure our kids have every opportunity any other child would have. We spend hours upon hours in therapy with our kids, advocating for our children who can’t speak for themselves, and spend way more time worrying about their futures than maybe is even healthy. Being a special needs parent is hard, really hard. There are times you feel like you are barely keeping your head above the water, just getting through the week. There are also moments of absolute pure joy, watching your child do something you never thought they would, or when you get a fleeting messy chocolate covered kiss.
I saw this picture scrolling through Instagram the other day and I couldn’t get it out of my head. It perfectly embodied something that has been on my mind for a while.
Autism is a pervasive developmental disability, not a physical disability, and it isn’t always apparent or obvious in every person on the spectrum. I sometimes find myself thinking, “It would be so much easier if people could just tell by looking at Nixon that he has Autism.” Because if there were some kind of physical marker for Autism, I wouldn’t have to exhaust myself constantly explaining to people that Nixon has Autism and that’s why he is doing this differently, or that is why he can’t do that. Don’t get me wrong; I am so grateful for my physically perfect, healthy son. I wouldn’t trade his health for the world, nor would I trade Nixon’s Autism, but the judgmental stares and endless apologies do get taxing, and we’ve got a long road ahead of us.
Having a child who isn’t visibly disabled has specific challenges a lot of people might not think about. People can’t see by looking at my perfect, handsome, adorable son that he has Autism and Sensory Processing Disorder. They can’t see the 30 minute melt down we had about putting a jacket on to get out the door. People can’t see upon first glance how sleep deprived all of us are, or that Nixon is in the middle of a sensory overload meltdown. People can’t tell that the “hugs” I’m giving Nixon while we are in a crowded place are deep pressure squeezes to help regulate his sensory needs. Most people don’t understand how transitions can be difficult for people on the spectrum. Even transitioning from one activity to another can lead to a meltdown, or leaving the store (that he had a meltdown about going to in the first place) even when we have given him five, two, and one minute warnings to help him be prepared to leave, still leads to a meltdown every time. And we get the “poor guy must be tired” or “boy is he giving you a run for your money” comments, or just judgmental stares about a spoiled child not wanting to leave the store. Outsiders don’t know how many hours we spend in speech therapy to get Nixon to the point he’s at now where his vocabulary and verbal skills can pass for “normal”. So, when he asks the same question six times in a row, or answers questions inappropriately, people either think he’s hearing impaired, or just really weird. Kids and parents at the playground can’t possibly know about the hours of ABA therapy and tireless efforts being made at school and at home to teach Nixon social etiquette and appropriate social interaction. So, when Nixon greets a child way too close to his face, or has no idea how the game of tag really works and just runs in circles giggling thinking he’s playing, kids tend to just run away from him even though Nixon wants to play so bad, and just has no idea how. People can’t tell how hard Nixon is working just to sit still in a chair at a restaurant or doctor’s office or use his “inside voice”. People with Autism have to work so much harder just to do routine things that most people don’t even have to think about.
Autism Awareness Month is all about awareness and acceptance. I want people to know that not all disabilities look alike, that each disability and each person with a disability is unique. There are some disabilities you cannot see, and that doesn’t make them any less real than those you can see. It doesn’t discount the struggles that the person with it and the family of that person are going through because of it. So, the next time you see a mom struggling with a screaming child, think twice before judging them. Maybe offer a smile instead of a glare. When you ask someone a question, wait a few seconds before asking it again, or before just walking away. Sometimes it takes people on the spectrum a little bit longer to answer a question because they are processing the question and have to formulate an appropriate response, and even then, the response may not make complete sense to you. Be patient, they have some pretty great things to say, I promise! I am so grateful to live in a time where there is so much knowledge about Autism and there are so many great resources for people to learn more about it. There is a saying in the Autism community, “If you’ve met one person with Autism, you’ve met one person with Autism.” Just because you have seen one person with Autism, doesn’t meet that all people with Autism will act the same, or struggle with the same things. Autism is a spectrum disorder because it is so vast, and while there are certain characteristics most people with Autism share, no two people are the same.
Be aware, be accepting, and be kind.
Alexandria Garrett, my sister-in-law and Autism SuperMom