The Daily Questions, Lessons and Heartbreak of a Special Needs Mom

When I was young I knew I wanted to be a reporter. I believed in the tenet of giving voice to the voiceless and I wanted to hold leaders and institutions accountable.

Now as a mother, and one to a special needs child, giving voice holds an entirely different meaning. At age 3, my curious, persistent and excitable little boy was diagnosed (separately) with autism spectrum disorder and selective mutism, a severe form of social anxiety that makes him afraid to talk in certain situations.

Over the last year, I have spent countless hours trying to determine which disorder is fueling his communication problems because the symptoms can mimic each other. But, after months of torturing my mind, I am deciding that’s not helpful anymore.

The truth is he probably has both.

I didn’t want to be a part of these clubs. I didn’t want to be around these different and sometimes sad people. When we sat in the developmental pediatrician’s office at the Children’s Hospital of Philadelphia and heard the “A” word, my heart sank. More than that, the anger bubbled up inside of me and I just wanted to prove the expert wrong. But once you finally accept it, no matter how long it takes, I can tell you these aren’t such bad clubs to belong to.

Some of the people you come in contact with, the therapists, coaches, parents, and most likely, the kids, are amazing. These people are the ones who truly understand what a big deal it is when your child says “hello” to another child, when he zippers his own coat and when he asks for something he needs.

Photo courtesy of photographer Jennifer Stone Rypel

I will always wonder, was it the renovations we were doing while I was pregnant? Did I not eat well enough? Or was it because I broke down and took cold medicine once, maybe twice?

There is the constant questioning.

Do other 4-years-olds have a fascination with plumbing or watching the microwave clock count? Do they wait until automatic doors close completely so they can push the button themselves before walking in? Do they melt down when you make a right at a red light because you are supposed to stop at red lights? Are other kids lashing out at their siblings like mine does?

Then there is everyone else’s voice: He is just shy. He will grow out of it. There is nothing wrong with him.  You just weren’t hard enough on him. Every child moves at his own pace.

Some days are absurd. You call your husband and tell him to come home because you can’t do this anymore. You love your dog more now than ever before, even though you forget to feed her, because the dog may be the only one bearing witness to this crazy life. Some days the sadness seeps in like rain.

Your heart breaks a little each day. When you’re watching other kids hold hands and talk effortlessly with one another. When your child gets bullied and doesn’t stand up for himself. When his brother wants to cuddle with him and he wants nothing to do with it. When you feel the stress on your marriage. Whether you want to admit it or not.

Some days are amazing. I have to tell my son to use his inside voice because he is talking so much, though few would believe it because they don’t see what he’s like at home. And out of the fog, his own voice emerges: “My tongue doesn’t like this kind of milk. Can you read those words, please? I need you to listen to me.”

Then there is the good kind of wondering. What will give him voice? Music? Swimming? Art? Look at how far he’s come from a year ago.

Despite my choice of profession, or any swagger I have conjured in my life, I have never loved confrontation. But there is nothing like having a special needs child that makes you stand up and ask for what you want.

You will learn to say, even to family, “This doesn’t work for us.” You won’t hesitate to ask, “How do we make this better?” You won’t be embarrassed when people get impatient with you and your tantruming child for taking up too much of the sidewalk or taking too long to get out of a parking spot.

When others are going through this, you will be useful in ways you could never imagine. You will share your own gratefulness for those who have walked this path before you.

Most importantly, you will never give up.

You may get tired. You may need a break. But you never give up on your child and your family. Just like your child, you will be brave. And you may learn more than you teach.

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