Stacie Sherman

The other day, my daughter told me she had a sore throat. And I cried.

At least I think that’s what she told me. Amid a crying spell, Brielle grabbed my hand and brought it to her mouth.

“Does your throat hurt?” Again, she grabbed my hand and brought it to her mouth.

Flash forward a few days later. Another crying spell. Another mystery. Bree threw herself down on the living room carpet. I lay next to her. She grabbed my hand and brought it to her forehead.

“Do you have a headache?” Again, she grabbed my hand and brought it to her forehead. Again, I was brought to tears.

These were the first moments I can recall Brielle trying to tell me what hurt. For fourteen years, it’s been a guessing game.

Imagine not being able to tell your mama you had a sore throat, a headache, a splinter. That the noise was hurting your ears. That you had a nightmare. That the boy at school hit you. That you had to pee.

For so many years, my daughter was unable to tell me anything. She would stare at me with her big brown eyes. She would yell. She would cry. She would hit herself. She would squeeze my hands until I yelped in pain. I felt helpless. I was failing her. She needed more.

No wonder she screamed and cried more than she smiled. No wonder so many autistic kids have tantrums. Imagine having no words. Wouldn’t you be frustrated?

It was a blessing for her — and for me — when she began learning to communicate. Thanks to an application on her iPad, within months she was telling me she wanted soda, waffles, rice, spaghetti, ice cream. She could finally tell me she had to go to the bathroom.

Later we could communicate with places and activities, like we’re going shopping, we’re going to the park. Let’s go swimming. We’re going to jump on the trampoline.

More recently, Brielle’s school began teaching her how to identify her name, her phone number, her address, by pressing the right button on her iPad. Items like this are tough to master. But they are so important. What if Brielle gets lost? How will she communicate to get home?

Last year, I was in the middle of telling my sister-in-law how her niece didn’t understand the phrase `tell me your name.’ But then she asked Brielle that question, and she went right to the proper button. Proved me wrong! My girl continues to surprise us all.

One of the un-mastered goals has been feelings. Those abstract things are the toughest. That’s why when something is bothering Brielle, my mind spins into overdrive. I’m watching her every move, her every facial expression. I’m examining her from head to toe.

The good news is that Brielle’s screaming/crying fits are fewer and further between. So I know that when she’s upset, she’s not just frustrated. Something is bothering her, and she relies on me to figure out what that is and make it better.

Is she finally “getting” how to tell me her feelings? Incidents like the recent ones — her bringing my hand to her mouth, her forehead — give me hope.

But I also get angry. It’s taken my daughter 14 years to figure out how to tell me she has a god-damn headache. That’s how difficult she has it. Things that come naturally for other kids, things they learn by the time they’re toddlers, my daughter is learning as a teenager. Nobody should have it that tough.

People often say to me, I don’t know how you do it. It can’t be easy. Well they’re right. It’s not easy. Thank you so, so much for caring. But don’t worry about me. I’m strong as hell. And I’ve got this.

But please do worry about Brielle. Worry about the 1 in 41 children in New Jersey who have autism. Worry that the rate is growing. Worry that there’s no known cause, no known cure. Worry that these children are going to become adults. Worry that many of them will never be able to live independently. Worry about who will care for them when their parents are no longer around.

Those are the things that keep me up at night.