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Making a Decision on Moving Our Grown Child to Residential Care

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In 1998, when I first started writing my memoir about raising a child with developmental disabilities, I hadn’t given much thought to moving Jessica, my 16-year-old daughter, to a group home. Four years later, she was the last of our children still living at home. Both her father and I worked full-time, and when her after-school care program was discontinued, I had to decide whether she was ready to stay home alone. She was certainly old enough. I figured she was ready. Besides, she would only be alone for less than an hour.

I developed a plan, starting with giving her a key and showed her the steps I expected her to follow. We practiced unlocking and re-locking the door, then using the phone to call and let me know she was home. She had difficulty dialing 10 numbers, but she could manage *9.

I felt satisfied after having a few successful trial runs, ecstatic Jessica had mastered a new skill, and even congratulated myself that I came up with this plan. For a month, the routine went smoothly, until the day she mistakenly dialed 911 instead of *9. And because she hadn’t responded when the 911 operator asked, “What is your emergency?”—the police were sent to my house. Thankfully, I arrived home in time to intercept them. One of the officers told me they were about to break down the door.

Twenty years later, I still feel myself cringe whenever I think about it, but I’ve had plenty of time to mentally reconstruct what must have happened.
Jessica’s bus probably pulled up in front of my house to drop her off. She probably showed the driver the pink key tied onto the lanyard around her neck. He probably watched and waited for her to unlock the door. Once she was inside, she most likely remembered my instructions to pick up the phone and call.

But that day, when she misdialed, I imagine Jessica panicked. It wasn’t Mommy saying hello. Jessica quickly hung up. And she didn’t pick up when the 911 operator called back because she remembered Mommy told her she wasn’t allowed to answer the phone.

Jessica’s silence and unresponsiveness certainly triggered the series of events which followed. The police arrived at our house, and because I’d told her not to answer the door when she was home alone, she didn’t respond when they rang the bell.

I was fortunate to have arrived home on time. The situation could have had a frightening outcome, but Jessica didn’t fully understand what happened. And even though she was never again allowed to stay home alone, I still bear guilt.

For the next few years, a babysitter met Jessica after school and stayed until one of us returned from work. At that point, I contemplated the move to a group home and thought about it for eight years. My internal argument went like this: She should move, her sisters had already found their own apartments, didn’t I want her to have the same experiences as them?

My girl was now in her late 20s. All of her friends had similar needs. One mother, who I’d known since our kids were preschoolers, asked if I wanted to begin researching group homes. Just in case.

Months later, she had arranged a visit to a beautiful facility an hour away. I don’t think either of us was ready. Although we wanted our girls to live as fulfilling and independent a life as possible, when two spaces opened, we declined. We kept saying things like, “it would be easier for them to make that transition now instead of when we die,” but that didn’t make the decision any easier.

A year later, we were still mulling over the possibilities when we ran into a friend who told us a nightmare story about her son’s first group home. Now that he was settled in a new house, she talked about the lessons learned. She urged us to go visit. Encouraged by her recommendation, we went.

Nathaniel, the administrator, welcomed us as we stepped into the tiled entry. The scent of fresh paint and vanilla lingered in the air. As we toured the house, we nodded in approval, feeling more at ease with everything we saw. The girls would share a bedroom and have their own private bath. But when we began filling out the paperwork, my friend balked.

“I’m not about to sign Jessica up if you aren’t 100% certain,” I told her.
She assured me she was a bit nervous, but that we were on the same page. The girls moved in a week later. All of us were thrilled with the situation. We told our daughters that their new home was like the overnight camp they’d attended. When they first moved in, the residential staff discouraged us from bringing them home for a weekend, but we insisted.

That was what we had promised. We picked them up on Friday afternoons and returned them on Sunday. The girls were happy.

But I should have known something was off. From the very beginning, my friend complained about the meals. She’d call me to vent.

“Did you know they ate macaroni and cheese for a third night in a row? Why aren’t they eating salads? Why aren’t they serving any vegetables?”

Then one day, three months after the girls moved in, the unimaginable happened. My friend called to say she’d had a change of heart. She was moving her daughter back home. I argued with her and tried to convince her not to act. There was a huge sense of betrayal. We had promised each other we would do this together. I was in a state of disbelief, but I was also scared. How in the world would Jessica manage?

Yet somehow, she did. After her friend moved out, I was relieved Jessica took the whole thing in stride. She didn’t ask to move home, but I constantly worried she would. Occasionally, Jessica would get upset about something and refuse to cooperate with the staff, but thankfully, she had a deep bond with one of the caretakers, one she called “my other mommy.”

Today, I’m no longer hurt by my friend’s choice. I’m glad Jessica was able to remain in the group home. She’s been living there for over 11 years.

My husband and I were in our early 60s when Jessica moved in. Now we are in our 70s. Although Jessica has many friends with similar issues, about half of them still live at home with their aging parents. Some have parents who have passed on, and those individuals live with siblings or other family members.

For me and my husband, the decision to move to a group home was a uniquely personal one. I’m happy with our choice, even if it was one of the toughest, most challenging things I’ve ever had to endure. My husband and I are devoted parents who planned what will ultimately be the best for our daughter. This, to me, is the truest representation of the power of parental love.

Getty image by Compassionate Eye Foundation/Steven Errico

Originally published: February 16, 2023
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