I Have Autism
Lately I’ve been taking a few minutes after my son Jack has a meltdown to sit and talk with him. I want to know more about what it felt like, what set him off, and how maybe next time we can do things differently. Now that he’s thirteen, he can answer me a little better.
Then I tell him what it was like for me, as his mother. He doesn’t always listen or understand, but I feel like it is somehow important for him to hear me.
After we talk I sit at my computer, and I try to weave both of our experiences together like the silky yarn of a tapestry. I hope that one day I may look back, and understand the entire picture.
Hello.
My name is Jack.
I have autism.
To me this means I know exactly how many minutes every Disney movie is and I don’t sleep as much at night and I look down at my feet instead of into your eyes.
When I have an idea in my brain it is big and huge and I cannot think of one other single thing. It feels there is a big elephant who has been squashed into a tiny elevator. The other ideas and thoughts get pushed into the corners until I can’t see them anymore.
When the doctor talks about my autism, he doesn’t say anything about the Disney movies or the elephant. Instead, he says words that buzz in the back of his throat all quiet-like. Then the words turn into a bunch of bees and they explode out of his mouth and into the room, their stingers all sharp and pointy and ready for stinging me.
Rigidity.
Anxiety.
Perseverative behavior.
Last night we had to go to something called opening ceremony for baseball because my brothers and my sister play on teams. My father is the coach.
I have never played baseball.
I have never been on a team.
My father has never been my coach.
This ceremony was at the baseball field in the middle of our town and my mother said we only had to go for a little while and then we would go to Dairy Queen after so I could get the blizzard of the month, which is vanilla with pieces of cookies and brownies. I talked about this a lot of times. I was excited and I felt happiness.
But when we walked out of the car and down the sidewalk and onto the field, there were lots and lots of people. Some had on shirts that were bright green or red or yellow and it hurted my eyes with the color.
A man was talking loudly and fastly into a microphone and I couldn’t figure out his words.
Bugs kept flying all around my face and one landed on my forehead. I tried so hard to hold it all on my inside but I could not take the colors or the microphone or the bugs for one more second. I stared to scream. I started to run and jump.
All around me the people blurred together in my eyes like someone had smudged them with a paintbrush. But when they saw the madness on my face, one by one they stepped towards my mother with their arms out wide.
Would he like to sit in the dugout, where it’s quiet?
Maybe he needs some water?
I don’t blame him, it’s very crowded tonight.
I have autism and sometimes it is very sneaky and it hides and maybe you wouldn’t know it when you walk by me because I can look like a regular boy. But the people in my town, they know it.
They know because they see me in Walgreens when I get very upset if they don’t have the gum I like and I shout where is my gum and the lady who works there says buddy, we’ll get it for you next time, I promise.
They know because they see me at the grocery store when I jump down every aisle and I try to touch all of the lemons so I can feel their bumpy weird skin on the tips of my fingers.
They know because they see me at the pool when it takes me a very long time to decide if I want to jump off the diving board and the line piles up behind me with kids and the lifeguards ask them nice-like to wait for me.
Be patient, guys. Jack needs some time.
The people in my town see me. They know me.
A town is where you live. It is mostly buildings and roads and houses. In our town we have three churches and two pizza places and even a small park.
But a town is more than buildings. It is arms stretched open wide and faces lifting up into happy smiles and a cool drink of water on a hot, buggy baseball night. It is lots of claps after I make a cannonball with my arms and legs curled tight like a turtle.
In our town, my mother knows that even if others have not walked the same dusty trail into the cool darkness of the dugout, they appreciate the path she takes.
She knows there is an invisible circle around the buildings and the churches and the pizza places and inside of the circle, no one will hurt her boy named Jack.
No one will hurt me. They see me. They know me. They like me.
Even if I am different because I have my autism, I can still belong.
Finally my mother she caught up to me behind the metal bleachers that are so cold and hard they bite into your legs if you are wearing shorts. She took my hand in hers, and she rubbed my back. We walked together away from the color, and the noise, and the bugs.
We stood in the way back, in what they call the outfield. The kids and the grown-ups and the microphone were far away, like little ants. I could see my father standing in his blue jacket. He turned to me and he waved and I felt better.
Because maybe he will never be my coach on a team and wave me towards home plate, but he will always and forever and ever be my dad. This makes me glad.
If you live in a town with someone like me, someone who has autism and who is jumping and screaming and swatting at the bugs, be patient.
Be kind.
I am trying.
The blizzard was good with the cookie pieces. Mine melted a little on the way home. That was for me okay.
jonicorcoran
May 8, 2017 @ 5:30 am
I look forward to reading your blog each Monday. My grandson is in the spectrum.
Glenna Toyne
May 8, 2017 @ 5:49 am
You weave silky yarn very well Carrie. Xxx
Patsy Marino
May 8, 2017 @ 6:34 am
Hi Carrie. My 12 year old son, Tate has autism too. I’ve been reading your blog for years-shortly after Tate was diagnosed at age 7. In fact, when I mentor Autism Mommas who have just received that news, I encourage them to read your blog, among other books and blogs. This note is way overdue. My husband and I regularly discuss your weekly writings and I frequently send them to Tate’s team or my family to help them understand. Of course, no one will understand quite like we do. But, your words help. a lot.
Today you wrote that you are starting to help Jack break down how he feels post melt down and share how it makes you feel too. This is a brilliant idea! I’m going to begin doing this too.
Thank you for shining a light on autism and for saying so many of the things that I think and feel too.
If you ever find yourself in San Diego, I’d like to meet you to tell you in person, how much it all matters.
Alison
May 8, 2017 @ 8:05 am
Yes, you do. And although I don’t have a boy like Jack in my family, I am always looking for the special Jacks in my town. Because of you and your incredible vulnerability and beautiful writing, I hope that I will be patient and kind to them.
Carrie Wailgum
May 8, 2017 @ 4:02 pm
DEAR CARRIE, WE HAVE TWIN GRANDSONS WHO ARE ON THE AUTISM SPECTRUM TOO. YOUR BLOGS HELP MY HUSBAND AND ME UNDERSTAND WHAT THE TWINS AND THEIR PARENTS ARE GOING THROUGH. THANK YOU FOR REACHING OUT TO OTHER PARENTS, GRANDPARENTS AND FAMILY OF AUTISTIC CHILDREN. CARRIE W.
Jimmy
May 9, 2017 @ 5:43 am
Hello Carrie, and Hello Jack.
I have Autism too, and so does my eldest son. Through him being diagnosed, my ‘quirks’ got noticed and I’m on my way to being diagnosed. We’re milder, sure, but it’s there none the less. Dealing with Typicals is like playing Poker with a full Tarot Deck – You have way better cards, but they’re not right for the system you’re in.
You will find less friends, but the quality of the friends you get will be so much higher. These people, your friends and your loved ones, will be fiercely loyal because they get to see all the brilliance and kindness in you. They will still get annoyed at you when you’re being rigid, but instead of hinting things at you, they’ll tell you straight, and help you.
The workplace will be weird with all it’s unwritten rules you’re expected to know, but the secret there is tell people there will be times you need space, and make it easy for them to spot these times. Again the people who ally themselves with you will be good people, they all come pre-tested by dealing with you. We can sometimes get wrapped up in ourselves, so consciously take time to be good to your friends, you’ll get it back by the bucket.
Also, get a hobby where you can be with others (I do archery) as just because you’re different doesn’t mean you want to be a recluse. Otherwise, chin up, show them what you’re made of, and good luck.