I recently read an article from a parent of a child with Angelman’s Syndrome. The parents spoke about their child’s future and what would happen when they could no longer care for him. Does he become a ward of the state? Who has a say in where their child will live?
I hope families will consider this option, as hard as it is to accept. When we decided to move our daughter, Jess, into a certified residence, it was a painful choice. As parents, we felt like we were giving up, no longer willing or able to provide care. We knew we were establishing Jessica’s long-term care, a plan for when we couldn’t provide direct protection. Our minds believed it was the right choice. Our hearts felt a bit broken. But what was the alternative? We knew moving Jessica into a home in our community was crucial for her future and ours.
The article I read stated that the parents wanted to find a home for their child while both were still alive. A place they could visit, and still go out in the community together. A place where their child was connected to a larger community, beyond mom and dad.
Many families face this difficult choice. We knew our daughter deserved a life surrounded by more than just mom and dad. But it’s complicated. When your child has a disability, one often thinks that the most compassionate route is for the child to live at home with mom and dad.
I understand the need to protect and keep my child at home. We felt especially conflicted because Jessica is nonverbal and cannot express her feelings with words. But there will come a time when parents can no longer care for their child. Planning for your child’s future is crucial to a smooth transition to adulthood. It is a compassionate decision. Exploring options for your loved one while you are able, rather than in an emergency, is a loving gift.
We always dreamed that Jess would live as independently as possible, and feel connected to her community. And it happened!
So, how did this transition start? How does a family take that leap of faith? For us, it was a gentle stroll toward the inevitable. A slow transition that aligned with our ability to accept the next phase of parenting Jess. Around 2004, a local clergy member and congregation volunteer named Janet started the Group Home Committee. I joined this group, still thinking that Jess, my husband Mitch, and I weren’t ready for this move. Still, I could contribute. My background in special education and knowledge of community resources gained through my education and work connections, would help the committee.
Time passed, and Janet asked for a subcommittee of families willing to take the leap. We joined this group, but deep down, Mitch and I were not ready. At least, we weren’t ready to admit we were ready.
Fast forward to May 2006! The Group Home was on its way to being built. The walls were rising, and plans were coming together to create a beautiful new home. I offered Jess several color options and asked her to choose her favorite color for her room. She pointed to a lovely purple. Making choices was one of the first steps toward independence and living in her own home. Suddenly, it is no longer about whether the home would be ready for Jess, but whether we were ready for this life-changing transition.
Her housemates have become her sisters. She has friendships and a community independent of us. Jessica still does not speak, but she communicates clearly with gestures and facial expressions that show she is happy, comfortable, and feels at home in her house. One can tell by looking at Jess and seeing how she interacts with her friends and the staff that she is happy in her own home. We are still a central part of Jessica’s world, her family. But she also has a connected life, a community that supports and understands.
It is 2026, and Jess has lived in her home for nineteen years. The women have become chosen sisters and friends. Although Jessica is non-verbal, the women have found ways to connect. When Jessica’s housemate, Lynn, comes into the room, Jessica’s face lights up, as does Lynn’s. Lynn is able to speak and wanted to increase communication with her non-verbal housemates. Lynn’s mom knows a professor at the local university who is a speech-language pathologist. An incredible partnership was formed when the professor suggested that her five graduate students work one-on-one with our daughters to enhance their communication skills. All the women use iPads to foster connections. Jessica can consistently select “yes” and “no” when asked a question. This simple gesture has opened a world up for all our daughters.
A typical week for Jessica includes her day program, where she receives therapy, participates in social activities, and enjoys community outings. My hope is that families consider their options with an open mind and heart. It is not the end of your relationship with your child. Fostering independence to the best of your child’s ability is the beginning of the next step for your child’s future.
ABOUT THE AUTHOR:
Vickie Rubin, M.S.Ed., is mom to Jessica, Alex, and Carly and Nana to three grandchildren, along with her husband Mitch. She is a three-time award-winning author of the inspiring memoir Raising Jess: A Story of Hope, published by Page Publishing. Vickie’s debut memoir won the 2022 Readers’ Favorite Gold Medal Award for Non-Fiction and was a Finalist in the Best Book Award and the Books Excellence Award for inspirational memoir. She is an experienced public speaker and passionate advocate for families of children with disabilities. Vickie’s essays are published in Newsweek and featured in the Buffalo News and guest blogs worldwide. She is a frequent podcast guest sharing information about raising a child with a disability, inspiring hope, family dynamics, education, and advocacy. Her blog, Vickie’s Views, gives a heartwarming and humorous view of everyday life, including raising a child with a disability, observing daily life, family, and marriage.
Read the article here.