April is Autism Awareness month and with that comes all the posts and articles about what living with Autism really means.
There are some very happy stories. Those always make the news because they make people feel good. They give people the “happy tears”.
Not all the articles are happy though because for most families, autism is hard.
I have read every single article that has come across my path. I want to be connected to these other parents. I want them to know that they are not alone. I want them to know that people care, so I share all these articles and videos and do what I can to raise real awareness for autism.
I want to be aware.
You would think that since I have a son with autism that would mean that I am aware but every parent’s story is different and every child is unique.
I also have a confession to make.
For every article I read about a child with severe autism, I have felt guilt.
I mean, who am I to complain or feel like our life has been hard?
One article I read really got to me. The author writes,
“Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people.”
This is a fact. This is truth and people should know about this side of autism.
I went on to share this article on Facebook and shortly after, a parent shared a comment on my post that said they wanted to scream every time they saw one of those “feel good” posts about autism because, “there is nothing ‘cute’ about my son’s autism.”
I felt guilty.
Taylor does not have severe autism.
He doesn’t punch himself in the face or beat his head on the wall.
He doesn’t crawl around rubbing his head on the floor…anymore.
He is verbal…now.
He doesn’t kick, bite or hit himself or other people…anymore.
He doesn’t lay down in the middle of a public place and have a full blow tantrum while people stare…anymore.
Suddenly, I felt guilty for writing. For sharing our story. Who am I to write about our autism when other parents have it so much harder than we do?
I couldn’t bring myself to write for several days because what could I possibly share that would help parents dealing with so much more than me? I had nothing to offer.
This morning, as I sat staring at my laptop I still didn’t know what to write. Then I reminded myself the “why” of it. Writing is my outlet, it is my stress reliever. I write from my heart and get it all out. It is our story.
I realized this. Just because our journey is not as hard as the person next to us does not make our journey invalid. It is just different.
“You have mourned the friendships they cannot make. The sleepovers they never had. The dates they never went on. The best friend they never had.”
The same goes for you. Your child may not be as severe as someone else’s child but I understand that does not mean your life is roses and rainbows.
I know that you cry yourself to sleep some nights. I know you have days that are very bad. I know you have your own fears for your child’s safety. Will people take advantage of them because they realize your son doesn’t understand that evil exist? Will they hurt him? Your son is “high functioning” but can he really be on his own, ever?
I know that you have probably mourned the life you imagined for your child when suddenly on beautiful spring afternoon, watching your child spin and spin and spin in the swing, reality set in. It hits you hard and without warning. Suddenly, you understand their future will be something completely different than you had imagined for them because your child has autism. You cry while sitting on that park bench, hoping your child doesn’t see.
You have mourned the friendships they cannot make. The sleepovers they never had. The dates they never went on. The best friend they never had.
You also have those moments when you are struck by an immobilizing fear because you know your child will out-live you and then who will take care of them when you are gone?
I remember years ago, I had become friends with a lady who son had Asperger’s. I met her son and was struck by how articulate he was. He could play sports with the other kids. He didn’t need to have an assistant at school. He didn’t run off if his mom didn’t have his hand in a death grip. He seemed so functional that if she hadn’t told me, I don’t think I would have known right away that he had Asperger’s. The way I saw it, he had it so much better than Taylor.
I was jealous. As awful as that is, I was. I prayed that Taylor’s life could be as easy as his. How much better our lives would be!
Then one day I saw her in the grocery store. She had been crying. I noticed scratches all down her arms. I asked her what happened and she told me that her son had a meltdown during church. She and her husband had to take him out of the church and to the quiet room to get him calmed down. Her son was in 5th grade at the time and weighed almost as much as she did. He kicked, screamed, hit and scratched her and her husband. They had to sit on him to calm him down so he wouldn’t hurt them or himself.
She was embarrassed because it happened at church. She explained to me that she thought she knew what people were thinking. That her son was some spoiled kid that just needed to be disciplined. His autism wasn’t obvious and she felt that no one understood. In that moment, I’m sure she felt very isolated.
On that evening, she may have even looked at my life as being easier because with Taylor, everyone knew he had autism. It was more obvious and if he had a meltdown like that, people would be better understanding, right?
I hugged her neck. I didn’t know what to say. I just didn’t know. She smiled at me and told me it was okay. This was her “normal” and that they would be fine. It was just a bad night.
I had held some kind of jealousy towards their life because all I saw were the happy moments and how “easy” everything was for them. I wanted that for us.
I didn’t know. I wasn’t aware.
Her son was higher functioning than Taylor, but it came with a different set of problems. Different obstacles to overcome but obstacles none the less.
I wondered how she did it and realized that she had said that very thing to me not too long before.
Autism is a spectrum.
Spectrum, by definition is “a broad range of varied but related ideas or objects, the individual features of which tend to overlap so as to form a continuous series or sequence:”
In other words, all of these individuals may have a related diagnosis and have tendencies that overlap with others individuals , but no two with autism are alike.
Never feel guilty for the accomplishments your child has made. Never feel guilty because your child overcame an obstacle. Be proud of your son or daughter! Rejoice and celebrate every little miracle.
Your voice is valid and so is your story. Don’t be ashamed to share. Your words may be exactly what someone else needs to hear.
Do what you can to raise awareness and share all the facets of autism. Know that every voice is important. Only then will people truly understand the scope of autism and really be aware.
We are all valid.