Why It's So Hard to Let Others Care for My Child With a Disability

As I walked out of Avery’s school this morning, I paused just before I stepped out onto the sidewalk. I squinted my eyes and looked back through the double doors, past the office, and I could just make out the back of Avery’s little blond head bobbing on the last seat of the cafeteria table. Tiny little Avery, aide’s arm wrapped tightly around him lest he fall from the chair he’s much too small to be sitting on.

In the seven weeks since he began going to school, I’ve become a master lingerer. I’ll stand just outside the door of his classroom or just down the hall. Or perhaps behind the bookshelf between the door and the carpet he’s supposed to be sitting on. Once, I spent two hours in the parking lot, anxiety in overdrive after I saw an ambulance pull up just as I dropped him off, phone in hand, struggling to control the urge to ask. Is Avery OK? Is he crying? Bleeding? Coughing? Is his nose running? Are his shoes too tight and do you know how to tell if they are bothering him? Is he warm? I’ve had weak moments when I ask, but for the most part I resist, because we all know what I’m really asking:

Are you capable of taking care of him?

For the first two and a half months of his life — and if I’m being really honest, the full four months of his hospitalization — Avery wasn’t really mine. I couldn’t hold him, feed him or rock him to sleep. I made no decisions for him save for those regarding surgeries and medical procedures that needed parental permission. He lived in a box, in a hospital, behind locked doors. And for that, I’m grateful. His life was saved by some of the most capable, loving hands and minds that you will ever come across. But he wasn’t ours. After two and a half months, we began holding him in order to feed him and were able to change his diaper and do other small parts of his care. We’d visit several times a day to take part in this, making sure we fed him as much as we could. Then we would hold hands, say a prayer, kiss him goodbye and walk out those locked doors. Without him.

On his 111th day of life, he became ours. We signed a mountain of papers, learned to operate medical equipment and took him out those locked doors with us. I cried more tears that day than any other day during his stay. Why? Complete and utter fear. Nurses and doctors had been caring for him his entire life and now they were just handing him over to Arick and me, trusting that we could do everything they’d been trained to do. But what if I didn’t give him one of his nine medications on time? What if he had an apnea episode? What if he stops breathing? My fear was justified but eased by every nurse who came to me that night and told me that I’d been doing it alongside them for weeks. They wouldn’t send him home with us if they didn’t know we’d be able to do it. I know now what that fear symbolized. I was asking myself: am I capable?

I’ve doubted myself nearly every day of his life. When he’s got a fever, I instinctively want to run to the ER. A strange cough from him can send me into a panic because he simply isn’t a typical child. He gets sick easier and stays sick longer. RSV or bronchitis are automatic hospitalizations. But, I’ve learned on the fly. I know his cues, and I’ve never been wrong when I feel like he needs to be seen. Across three years I’ve taken those nurses places and become his caretaker. I became his mom. Well, I became that mom. He can’t eat that; stay away if you’re sniffling; no, he can’t have a sucker; I’m not trying to hurt your feelings but can you please not do that; you better be patient he just learned to walk; please teach your children that we’re all the same inside and all the world needs is more love.

Which brings me to my point.

School.

And the release of some major control.

Avery goes to a regular elementary school with kids from pre-k to fifth grade. Well, except for his class. The best class: PPCD. The preschool program for children with disabilities is a special place, to say the least. Avery is one of seven kids ages 3 (although he’s the only 3-year-old) to 6 with disabilities ranging from Down syndrome, intellectual impairments and speech difficulties to him: the little one with cerebral palsy and a brain malformation. They have structure and are taught their ABC’s, 123’s and all of the other things they’d learn in a typical preschool. There’s PE, breakfast, lunch and our kiddos get physical therapy, occupational therapy and speech therapy as needed — all in the classroom setting. From the moment I walked into the classroom I knew it was special and that Avery would thrive in that environment. But letting him, that was a different issue.

And he hasn’t made it easy. In the beginning, when we’d drop him off he’d fall to the floor in tears. Or he’d look back at us while they drug him down the hall, fat bottom lip sticking out and Texas-sized tears falling from his eyes. That was when I’d linger. I’d hide and wait to see if it stopped. And it did. It always stopped. Sometimes within seconds and others in minutes. By the time the morning song started he would be singing and dancing with his little (big) classmates. Mommy left him but he is OK with it as long as he is having fun. And when he isn’t? He throws a fit, takes off his clothes, fights with J (who I’m told he can actually hold his own against!) or throws things. He’s 3. It happens.

Aside from one hospitalization, Avery has never been away from us for longer than a night. He’s never been to a babysitter, to daycare or to stay with anyone who isn’t related to him. Now, I drop my son off each day with three strangers to take care of him all day. To feed him, clean him, change him and teach him. To keep him safe, warm and happy.

(I paused here while writing this to go to the grocery store. Standing in the produce section, my phone began to ring. I looked down. Avery’s school. Normally, if there are issues, his teacher calls me herself. Confused, I answered. It was the school nurse, letting me know that Avery had fallen and hit his head and wasn’t acting right. They insisted I take him to the hospital. He smiled when he saw me and perked right up in the car so I think I’ll say he’s OK. I mean, he falls quite a bit. He’s got cerebral palsy and he has only been walking for two months. All of this to say, told ya. I worry. I worry a lot. See why?)

But back to keeping him safe, warm and happy. Can they? Do they?

Yes. Last week, a cold front came through during school hours. Avery came home wearing a hat. Today, they called me immediately when they felt he was acting unusually. His hand is held and his nose is wiped when needed. His teacher has often told me: “Wipe your tears, Momma. He’s gonna be fine. It’s you I’m worried about.”

So, I wasn’t ready to let him go. I didn’t think I could do it. But I want him to go into a mainstream kindergarten class alongside your children. I want him to have every opportunity to thrive and succeed. So I made the decision that was best for Avery, not for myself. I let go and let him go.

This morning, I made it all the way to the sidewalk before I looked back. That’s real progress from the me who stayed in the classroom until they asked me to go. Will I ever stop looking back? Probably not. But one day, when I look back and I can’t see him . . . when his little blonde head isn’t visible anymore because he’s off somewhere having fun and changing the world, I’ve made a promise to myself that I won’t freak out. I’ll take a deep breath, turn around and go home. And I won’t even text.