As I adjust to daily life without Brielle at home, it does not escape my mind that there are thousands of families waiting and praying for the same opportunity.
In New Jersey, the priority waiting list exceeded 2,100 as of 2023, according to a notice I got at the time about Brielle’s place on line.
A year later, I got the call. I remember feeling elation and horror at the same time. I’m sure I was not the only parent to feel this way. We know at some point it’s the right thing to do, but we also hear all the stories. We know they are better off at home with us. Nobody will love them and care for them the way we do. We want them home with us. But we also know that we won’t be around forever.
So here I am. Brielle is in her group home for about a month. I have stopped spontaneously crying. I have stopped stalking her constantly via location technology. I no longer need at least a glass of wine every night to get myself to chill.
The first few days after we moved her out, I felt like I left a piece of myself at that home. I was consumed with thoughts of Brielle. I slept in her bed. I wanted to visit her the next day, but a fellow autism mama gently talked me out of it for Bree’s sake.
I finally went to see her a few days later. I didn’t stay long, like 15 minutes, I just needed to see her. She got upset when we left, and so did I. She looked confused. I wished I could have made her understand. I didn’t.
A few days later, we visited her on a Sunday. We took her out and she was so happy. We took her to Olive Garden for her beloved spaghetti. There was a long wait, so we sat at the bar, her sandwiched between me and my husband. She loved the closeness. Then we walked the mall for awhile, and stopped at a park before returning to her house. It was sad for me to leave.
I visited a few days later, after work. I decided to take her for a ride, treat her to some fast food. She was so happy. Then we returned to her house and ran around her big backyard, before snuggling on her bed for a few. When I went to leave, she didn’t try to come with me. She’s getting it. She seems to love her house and her care providers. They call her by her nickname. They braid her hair. They even painted her fingernails blue. They got her to wear a Halloween costume and had a dance party with her and the other girls.
We visited her again that weekend. It seems like all four of the girls at the house spend time with their families on the weekend. That’s just fine with me. We took Brielle to my brother and sister-in-law’s house for lunch. She was so happy. She didn’t sit still too much and loved running across the bottom floor and then climbing upstairs. When she was in the kitchen she played me like a fiddle. I could not say no to her. She had pasta, lots of soda, guacamole, yogurt, ice cream, potato chips, a granola bar. We spoiled her. Then we brought her back to her house. She seemed OK when we left. Less than an hour later, she FaceTimed me. I told her I missed her already.
We have been using FaceTime almost every day. This has been great, just so that I can see her. I talk to her for a few minutes. She doesn’t talk back obviously. I usually see her twice a day via FaceTime. The day program will use it and then the group home will use it. It’s tough to soothe her via FaceTime. It’s tough to come up with things to say. But I think she is understanding its value.
I still count on seeing her face every day via her FaceTime calls. She just called me as I was typing. She was wearing pajamas, staring at me, chewing gum. She has been grinding her teeth the past week and so they give her gum to minimize that. They’re taking her to her doctor tomorrow to see if she has a UTI. She wasn’t upset tonight, but she didn’t smile. She was holding her favorite caretaker’s hand.
I visit her at least one weeknight a week, I see her every weekend. I do inspect her body for signs of abuse. I would be an awful mother if I didn’t. She has adjusted far better than I thought. I know she is in a group home run by one of the best providers in the state. It doesn’t stop the worrying.
If you live in New Jersey, no doubt you have read the stories in the past year of abuse and neglect in some of the group homes here. The stories are horrific. Nauseating. These stories make some parents want to pull their kids out of group homes. Other parents weigh delaying or giving up on plans to put them in one.
But here’s our unfair reality: we need group homes. About one in four people with autism have what’s called severe autism. People with severe autism, like my daughter, are often nonverbal or minimally verbal. They have intellectual disabilities. They will require round-the-clock care for the rest of their lives.
Yes, we need group homes to be free of abuse and neglect. And many are. But some are not. And so we parents keep a watchful eye on our kids. We inspect them from head to toe. We stalk them. We speak up, we complain, we lobby. We insist our children are cared for and treated with compassion, dignity and respect.
And then we pray.
Leave a Reply