On this particular day, so many people around the world help us in a cause that we strive for every day. Today is Autism Awareness Day. April is Autism Awareness Month. Autism is something that has touched every aspect of our family life. The challenges that have come with it have permanently changed each member that lives in our household. Often on this blog, you get to read about many of those challenges. Some of them may seem personal, but really, most of them have only brushed the surface. So today, to bring some very real awareness to this condition, I’m going to go through some of the more personal parts of Autism that we live with on a day to day basis.
Awareness for my Autistic Tween Son
Sir.E recently turned twelve. Officially, as far as his age is concerned, he’s a tween. He is a tween with some very unique and difficult challenges. He is becoming more private as he gets older so I don’t want to put anything on here that might make him upset, but in all honesty, there’s no avoiding him getting upset. Privacy is a huge deal for him, but also not something he fully understands. Like any other twelve-year-old boy, he’s self-conscious and awkward. Last summer my mom posted a photo on IG of him without his permission and he cried all night. By the end of it, he didn’t really understand why he was so upset, or why he had this feeling of betrayal though.
Last week he got a haircut, often something that is difficult for ASD kids, it didn’t become a problem for him until a few years ago. I used to just buzz his hair and he was great with that. As he got older he began to want more complex haircuts. I’ll never forget the time I cut his hair and he burst into tears when he looked into the mirror after. Mom fail. I would attempt to cut it once more with the same outcome.
We’ve been trying to find a hairstylist who does a good job ever since then. I asked him multiple times before we left the salon last week if he was happy with his hair. He kept telling me yes. I examined the back like any mother, pointing out some choppy parts to the hairdresser, she told me it would lay nicer once he washed it. Great I thought, I asked him one more time and he exasperatedly told me he liked it.
An hour after we got home he came into my room crying and very upset. He didn’t want to go out in public because he thought his hair looked bad. “Why did you keep looking at the back like that?” he asked me. I explained why and what the hairdresser said. Then I asked, “I thought you liked it? Did you take a good look at it before we left?” He proceeded to tell me he just glanced in the mirror at the salon. I tried to explain to him that he might disagree with me, but change affects him more than he is willing to admit. He can’t handle surprises and change, as much as he’d like to, he’s just not there yet.
These are everyday happenings with him. At least once a day we have to explain to him that his feelings are indeed affected and sometimes a result of having Autism. He denies to the max. Just like any other kid his age, he hates anything that makes him different. He wants to be Autism free. He wants people, and most of all peers to understand why he may get emotional very suddenly. Why he is rigid and has a hard time understanding new games. He wants to be able to have sleepovers and play dates, but is also extremely uncomfortable and overwhelmed in those situations. Often, he doesn’t know what to do or say and when I’m not there to guide him, he becomes anxious.
This is his life.
So, for a minute, please put yourselves in my son’s shoes. Imagine wanting friends, but then once you’re around them totally freaking out and not knowing why. Imagine wanting to go to a store to buy something, but getting there and feeling so anxious you have to run out. Picture for a minute, not understanding why you react and feel the way you do. Feeling like you simply can’t control anything. How embarrassing you’d feel when you’re old enough to understand social graces, but start crying the first time you have new friends over. How much more embarrassing it would be if you did that every time you went to a store, and you noticed people staring. If everytime something changed you simply couldn’t take it emotionally.
You would have to be strong to live with that every day. To go back to that grocery store even though you knew what was going to happen. To keep trying to be a little stronger. To go out knowing that you might see people you thought were your friends only to have them tell you how weird you are. Honestly, most of us would crack under the pressure.
So please, the next time you see a boy who looks around twelve or thirteen and he is humming to himself and maybe bouncing or rocking back in forth with a blank stare as he follows his mom in a store, remember what you just read. Keep in mind that perhaps that child is doing what he has to so that he doesn’t crack under the pressure. Smile at that mom with understanding. Know that every second of her day is spent either helping that child to continue on, defending him from people who are uneducated and unaware or walking through hell with him.
Special Needs Moms
As a mom, you spend the better part of your life trying to provide a wonderful life for your kids. You worry about them, love them with your whole being and think about them non-stop. You wonder if they will get hurt and if they will succeed. You worry about bullying and their education. You strive to teach them kindness and good habits. You would walk through fire for them.
Now think about how it feels when they are sick and crying, all you want to do is take all the misery and pain from them and go through it for them. You do everything you can to get them better, to make them feel happy again. You research tirelessly to find things to make them more comfortable until they are over their cold or flu or heartache. Ugh, it pulls on your heart strings right?! When my kids are so sick to the point of crying my heart just breaks for them.
Being On All The Time
Welcome to every minute of every day in a special needs moms life. Every day that child is heartbroken and sick. They are struggling and miserable and usually in tears at least once a day from it. So we research tirelessly, we learn everything there is to know about their condition, we ware ourselves out trying to help them and make it better. Special needs moms live in a constant state of alert. You have a sick child your whole life. You’re always on the lookout for things that could make it worse. You scan every room before you walk into it for potential threats. I read a study once that said the moms of Autistic children have the same stress levels as combat war veterans. So true. Living with a sick child is exhausting.
Our goal is awareness. So the next time you see a mom with a screaming child and you can tell she is exhausted, give her the look of understanding. Tell her she’s doing a good job or just give her a warm smile. Maybe she’s living with a sick child. Maybe she’s a special needs mom.
As always, if you have questions, ask away, if you want to learn more check out the section of my blog Autism Resources. It has great information if you want to educate yourself a little more so you can help bring awareness and understanding.