Parenting

When Looks Can Be Deceiving: Parenting Kids with Invisible Disabilities

One day several years ago, I had the awful idea to go to Walmart with my three young kids. My older daughter must have been around 10, the younger daughter around 5, and my son Nico would have been 7. My rationale was this: I’d take them to Walmart, let them each pick out a toy, and drive home, thereby winning my Excellent Mom badge for the day.

If only I had stuck to the plan.

Everything went well at Walmart, so I asked the kids if they could sit quietly while Mommy shopped for a quick minute at a nearby clothing store. You know where this is going. Nico had picked out some super cool superhero sword but yearned for his little sister’s pink vinyl purse with flowers and couldn’t keep his hands off of it. She started crying. He took her purse. She called for me. He hit her with the purse. I grabbed his arm. I abandoned my quest and dragged a screaming Nico to the parking lot while the girls trailed behind me. I was furious. The injustice! And in a moment of righteousness, I did the exact wrong thing. I took Nico’s toy from him and said, “You don’t deserve a toy after treating your little sister that way.” I spotted a little boy and his mother in the parking lot and walked over there, and gave Nico’s superhero sword to the child. "Here,” I said to the mother. “I bought this for my son, but he’s misbehaving, and so I’d like you to have it for your son.” From our van, Nico watched me, shrieking and sobbing as though I was about to lop the head off a bunny.

This story might so far sound like an extra tough day in the life of a mom.

But when you have a special needs kid, the extra-tough days can turn just short of tragic. And when you're dealing with invisible disabilities, the world is short on sympathy and long on judgement. My son, Nico, now 12, suffers from Reactive Attachment Disorder, an emotional development condition related to his adoption. For seven long months before my husband and I brought him home, Nico lay untended and unloved in a Guatemalan orphanage, with little human touch and minimal interaction. From the outside, he’s a handsome kid with an easy smile and some fuzz accumulating on his upper lip. He likes school, Minecraft, and ramen noodles. On the inside, his mind operates like a very productive anxiety factory. He fears change. He fears the future. He fears I won’t love him tomorrow. Before his diagnosis two years ago, I spent hours every day trying to prevent him from hurtling off the cliff of sanity. When I was unsuccessful, I had to physically restrain him from harming himself or his sisters. The next morning, he’d trot off to school like Little Lord Fauntleroy, and I’d sit at my kitchen counter and sob.

Back to the Walmart parking lot.

When I told Nico I was taking away his toy, he became irate and terrified. But when he saw me give it away, he temporarily lost his mind. As I backed out of the parking space, Nico, sitting directly behind me, grabbed my hair and yanked back my head. I slammed on the brakes and slapped away his hand, then kept driving. He stood up and wrapped his arm around my neck from behind, and squeezed, still screaming, and started punching me in the head with his other arm. I stopped the van, released his grip, and held his arm tightly with one hand while driving with the other—then pulled into an empty area in front of a building under construction and put the car into park. The girls and I sat in shock while Nico literally jumped around the van like a malevolent dervish. He screamed and flailed his arms blindly, and I was afraid he’d hurt one of us, so I told the girls to get out of the car. We all stood outside the van in the burning sun while Nico acted as a human wrecking ball inside of it. As I thought about what to do, I saw a construction worker watching us from the vacant building.

Uh-oh, I thought.

Suddenly, Nico jumped out of the van, accidentally (I think) knocked over his little sister, then started running toward the nearby highway. I was momentarily torn between tending to my daughter and chasing my son, which gave him a healthy head start. I screamed his name and ran after him, calling to the girls to stay put. Ahead of me, I saw a homeless man shuffling on the sidewalk next to the highway watching us. “Want me to grab him?” he yelled, motioning at Nico, and I yelled back in the affirmative, giving him the thumbs up. Nico didn’t fight the homeless man, and seemed to have calmed down by the time I reached him. I thanked the man, and steered Nico back toward the van.

The construction worker was waiting there to confront us. I suppressed the desire to glare at him.

Had I seen a child who seemed terrified of his mother, I would have similarly intervened. I took a deep breath, held tight to my son’s hand, and strode directly up to the man. I leaned down so I could look into my son’s face, and I gently said, “Honey, this man is afraid that Mommy is hurting you. He thinks you need help. Now, if you feel like you’re afraid of me right now, it’s okay to tell him, and then I’ll wait here while we all figure out what to do.” I was not at all confident in Nico’s response. The man looked at me suspiciously and then looked at Nico. “Do you need help, son?” he asked. After a moment, Nico shook his head. I spoke to him again. “Honey, I think you need to speak to him so he knows you’re okay.” Nico looked at him and said, “I’m okay. I feel better now.” He buried his head into my hip. The man seemed satisfied. I drove home, shaken, and counted the hours until bedtime.

Raising a child with invisible disabilities can be a lonely, infuriating existence.

When your kid *looks* normal but acts out of control, people all too often assume his behavior is the result of bad parenting. Even friends and family can cast blame. Once, when I was complaining to a family member about my son’s penchant for hitting me when he became crazed, she said, “You shouldn’t let him hit you.” GAH. If only I had thought of that approach! It’s better now—with the proper diagnosis came a better parenting plan, and my son gradually has learned to express his worry and control his emotions. But before that came many, many occasions when strangers assumed I abused my kids. Looking back on the Walmart fiasco, I can see what I did wrong— but I can also see what I did right. All too often, we treat outside observers as the enemy even when they’re doing what society expects them to do, which is protect children who seem at risk. We also act embarrassed, as though we’re ashamed of ourselves. Both approaches can worsen an already terrible situation. Instead, try anticipating conflicts, and focus on a few basics. In other words, learn from my many, many, many mistakes.

Five things I’ve learned

1. Choose your battles

When you’re out in public and your adult-kid ratio is out of whack, it’s not the time to discipline your special needs child. These occasions are all about survival. You can speak to your son/daughter about behavior later, at home, preferably when you have backup.

2. Envision the worst, and plan accordingly

In hindsight, I should have skipped the clothing store entirely and allowed the adventure to end on a positive note. Nothing good could have possibly come of asking Nico to sit next to his sister quietly for an extended period of time.

3. Have confidence in yourself

There are three types of intervening strangers: those who judge you; those who sympathize and offer to help; and those who aren’t sure of what to do but want to make sure the child is safe. For the sake of your child, who is carefully watching your reaction, respond to each with a measured, self-assured tone that makes it clear you’re in control, even if you’re not. You can even have a practiced phrase: • "My daughter Olivia suffers from a sensory disorder, and these fluorescent lights are so hard for her." • "Thanks for your concern. Sometimes Charlie can’t control his temper, and it’s hard on all of us. But he’s okay."

4. Educate, educate, educate

Stop staring at the Facebook photos of your friends’ perfect families, and start talking about whatever issues your own family is facing. Be willing to share your story, whether it involves the autism spectrum, or mental illness, or post-traumatic stress disorder. The more we talk about such conditions, the more quickly stereotyping and labeling become a prejudice of the past.

5. Most importantly, love your child unconditionally, even when you don’t like him very much

“Do you think I love you more or less when you misbehave?” I asked my son one day after a hard afternoon. “Less,” he said, eyes blurry with tears. “No!” I said firmly. “I love you more. Because that’s when you need me most. I’m always here for you, bub.” And I tell him that every single day.   For more from Tricia Booker, read The Place of Peace and Crickets