My Son Charlie

Charlie

In observation of Autism Awareness Month, I  decided to write about my experience as a parent of a child with autism. I've learned so much over the past year and change, that it would be hard to put it all down here. I'm hoping that I can provide an informative reading experience for those who aren't familiar with autism, or those who just want to know more about my son.

My Son Charlie

My youngest son Charlie is three years old. He has an infectious laugh, a smile that will warm your heart, dope dance moves, a mop of light brown hair, and autism. You'll notice that I listed Charlie's autism last in that list. It's not a coincidence. While my son's autism is part of who is, it does not define who is. He is a sweet, intelligent, loving boy who happens to process things a little differently than most people do. He is verbal, but his speech and language development is closer to a two-year-old level than a three-year-old level. Charlie's tall for his age. This makes things even more awkward and challenging when people meet him for the first time. Because he looks older, people expect him to act older. Because of his language delays, he is not able to communicate the way most kids his age do. It's taken a lot of "programming" to get Charlie to where he is today, speaking in three to five-word sentences. He goes to speech therapy four times a week, five during the summer.  He's accomplished a lot in the last year or so, and I could not be more proud of him. Lately one of his favorite things to do is sing. We've also caught him "reading" his favorite book, Pete the Cat and His Magic Sunglasses out loud to himself. A year ago, I could not have predicted he'd be doing those things.

Transitions are tough for Charlie. When it's time to leave the park or the grocery store, he might throw a fit. It's not because he's a bad kid, or that we don't discipline our children properly. Charlie's meltdowns are a reaction to unexpected changes in his activity. It's a product of the way his brain processes stimuli. I used to be one of those parents who would see a child crying, screaming, thrashing around on the floor at Target and think to myself  "control your kid." I'd immediately pass judgment on the parents as irresponsible or lazy. Through my experiences raising Charlie, I've come to understand that it's not fair to do that. It's possible that the child is simply unable to express his feelings to his parents, or that he's suddenly overwhelmed by all of the bright lights and bright colors and different noises he's encountering in the store. Of course, crappy parents are still a possibility. I just don't jump straight to that snap judgment anymore. I look at that family through empathetic eyes thinking, "yep, been through that before."

Raising a child with autism is a lot of work, as is raising any child. The amount of work is what makes it so rewarding to see your child grow and develop. Despite all the therapy appointments and alterations we've made to our routines and habits over the last year to make things easier for Charlie, I wouldn't change a thing about him. There are people out there who promote finding a cure for autism. That's outrageous to me. Saying you're going to cure autism is like saying you're going to cure tomboys or bookworms. Autism is not a disease, my son is not sick. Autism is just the label that we as a society have chosen to put on the combination of characteristics that make my boy a little different from most kids. The personality traits that make him autistic also contribute to making him Charlie. I love him the way he is, and I wouldn't change a thing about him. I don't think that any parent who's worth a damn would say that they'd change anything about any one of their children. If they would change something, it's probably due more to some insecurity on the part of the parent than anything else.

We have met some amazing people during the last year. The case workers, doctors, psychologists, teachers, occupational therapists, physical therapists, and speech therapists that have worked with Charlie have all played a part in helping him grow and learn. They've also taught me a lot about how I can be a better parent. Perhaps the most important person in Charlie's life since his diagnosis has been his mother. My wife has taken him to 90% of his therapy appointments. She communicates with his therapists after every appointment to keep track of his progress, keeps scrupulous records of his reports and applications and assessments, and helps him maintain a routine to keep him balanced and comfortable. She also works all day, cleans up after me, makes our dinner, does our shopping, and motivates me to do the best I can do as a provider and a father.

I've had people tell me "oh, I'm sorry" when I explain that Charlie has autism. Why are you sorry? What makes you think that you have anything to do with it? It took me a short while to realize that I didn't lose something the day my son was diagnosed. I gained something. I gained a clue as to what was making my son struggle with certain things, and what I could do to help him overcome those struggles. That's where I feel time and money from autism support groups should go - to providing education and resources for families to learn to live with autism. I also understand that every child and every family's situation is different. Would I feel the same way if Charlie were completely non-verbal? If he had severe sensory or dietary issues? I can't say. That's why it's important to respect and empathize with every opinion. Until you know someone's story, you can't understand their motives for feeling one way or another.

I think a lot about Charlie's future. I look forward to seeing what he'll accomplish. I have no doubt that he will be a productive member of society. He's good at making friends and learning new things, and he's surrounded by a family that loves him. I also worry. There are a lot of people in this world who will challenge Charlie. He will encounter bullies, ignorant and insecure people who throw around the "R" word, people who will belittle him by talking to him as if he's a baby. As a dad, you want to be able to confront each and every one of those people and run them down for their lack of intelligence or empathy, or just straight punch them in the face. I know I won't be able to do that, but at the same time I know that I won't have to. My boy has already faced and conquered challenges that most of us will never have to deal with.

If I could ask one thing of the people in my life who don't know Charlie that well, or who are hesitant to spend time with him because of his autism, it would be to give it time. If you take the time for Charlie to get used to you and build trust with you, you'll discover that he is a joy to be around. He likes the same things most kids his age enjoy. He loves to dance, run, make funny faces, and be tickled.  Don't be afraid to ask me questions about him. My children are my favorite topic of discussion. Why does he like to dump handfuls of sand or pebbles on his forehead and let them run down his face? Because it's a soothing sensory activity (have you ever tried it?). Why does he hold toys to his fingers and sing The Finger Family Song? Because songs are repetitive and predictable and familiar to him. Why does he love to play with water but hate getting his shirt wet? Again, it's a sensory issue. Playing in the water satisfies his sensory needs, but having a wet shirt is an unpleasant feeling for him.

Our occupational therapist explained to us why Charlie tends to wave with his palm toward his face. This was an interesting and enlightening lesson - when someone is waving to Charlie, he sees their palm. It's natural to him to see a palm when waving. If you put him in a mirror to wave, he will wave with his palm out. She also lent us a book (which is still on top of our fridge after many months) entitled "The Reason I Jump" by Naoki Higashida. Naoki has autism, and was only thirteen when he wrote the book. In it, he attempts to explain a lot of common behaviors found in people with autism. It's a quick read, and I recommend it.

There are some people in our inner circle who may be embarrassed about me sharing so openly about Charlie. Sorry, not sorry. I have nothing to be ashamed of when it comes to my boy, and neither do they. I don't have much of a filter, and it's difficult to determine how much a person wants to know when you're having a one-on-one conversations. I figured this would be a way for those who care to learn more about Charlie to do so, without me having to worry about saying too much or offending anybody.

If you've read this far, I thank you for your time. Having a child with special needs has changed me as a person, for the better, and my hope is that others will experience the same by learning more about those who are a little different from the rest of us.