There’s a common saying in the autism parenting community that I love: “Autism is a journey I never planned but I sure do love my tour guide.”
In honor of Autism Awareness Month, this post is for Julian. He is now 12, almost as tall as me, and is still my lookalike. Most of all, he is what his psychiatric nurse practitioner calls “well-loved”.
Back to the Beginning
When he was five, I had no idea what we were in for. I just knew that he needed me and more help than I could give him. I doubted myself so much because even with all of my knowledge and work, I still couldn’t manage him.
I dreaded going out in public because it was a risk- he was a runner. What if he ran off? What if he had a meltdown? His meltdowns were loud and lasted at least a half hour. I made my trips as short as possible. I went out alone when I could so I didn’t have to worry about chasing a very fast kid.
School was a tougher topic. He struggled to sit through kindergarten and didn’t like his teacher but loved her assistant. Even after his ADHD and autism diagnosis and medication, he continued to stay away from his peers. He remained quiet, barely speaking to anyone. Julian was in his own world, both at home and at school.
It turns out that’s a personality trait- he is my quietest child. He won’t talk to people he doesn’t know and needs prompting sometimes to speak to those he does. Eye contact is non-existent and I don’t force it. As long as I see that he’s looking at my face, I know he is listening.
The Road to Now
Julian has spent a lot of his childhood in therapy. He started with a social worker in 2013, a psychiatrist, who recommended group therapy while he was in third grade, and now he sees Ann, his nurse practitioner, once a month.
Group therapy helped more than anything else. I had to pay out of pocket for it because insurance wouldn’t cover it.
I didn’t care.
It was worth every penny. He learned skills that he can use for the rest of his life- sharing, talking about himself in a group, handling challenging emotions, and other topics.
Julian struggles with empathy, even after that was a theme in the group. We work on this a lot. He may say something that hurts another person’s feelings but doesn’t get why.
I explain to him why what he said was not so nice and that he needs to think things out a bit more before speaking (hilarious for me to say that because I am the wrong parent for this) and apologize. Sometimes this works, sometimes I lose him.
Julian also developed a sense of humor. For a while, we weren’t sure if he had one. He didn’t get sarcasm and was so serious. I had to explain jokes to him.
He has been fearless pretty much since he could walk. There have been incidents that resulted in broken bones, staples, stitches and other assorted injuries. None of these things stopped him. As he’s gotten a little older, he has learned to hesitate a little, but he’s still the first to get into something.
Humor finally hit him and I was thrilled. His humor is dry but we appreciate it. Sarcasm is still not a thing for him but it’s not for everyone.
Julian thinks in incredibly concrete ways. He eats certain foods (pretzels are life) in a certain way. He thinks things should happen in a particular order and doesn’t always get why it doesn’t happen like he thinks it should.
However, he’s very smart. Seventh grade has gone well- his IEP focuses on his handwriting (it needs improvement) along with other goals. His grades are good and his best subjects are math and science. He’s always been talented in those subjects.
In many ways, Julian is like most 12-year-olds- he loves playing on his Xbox 360 and riding his bike. He thinks the prank videos on YouTube are the funniest things he’s ever seen. There are just a few quirks involved.
I’m Not an Expert
I read a lot about autism. I worked with kids all over the spectrum for almost five years. I’ve been injured in the process but loved the work. It truly changes you and how you see the world.
Still, I am not an expert. I do not know what it is like to be Julian. I do not know what it is like to be in the lunchroom full of noisy kids and have to block it out so you can eat and try to talk to your friends. I do not know what it feels like to be super bored for a minute or two in class but yet, it feels like forever.
I do, however, know the feeling of wanting to hug a wonderful child who won’t let me because he hates the feeling. I know exactly how it feels to watch your child yell loudly over the shape of pasta because it’s not the right one. This has happened, but not in years.
I’ve often wanted to take a trip inside Julian’s mind, but I know this is impossible. Since I can’t, I try hard to remember where he is and help him through his needs. We don’t let him have everything he wants, because that simply isn’t how the world works. We do, however, make accommodations when we can.
Julian has been an adventure to raise. The road has been a bit bumpy but I will stay with him forever.
If you are the parent/caregiver of a special needs child, how has the path been for you? Please share in the comments.