For most young adults in their 20’s there comes a time when an adult child lets you know, it’s time to move out and establish a life away from their family. They are ready to spread their wings and explore meeting new friends, try out different activities and make a life for themselves without the safety net of living under a parent’s watchful eye. For any parent, becoming an empty nester can be a harsh adjustment. But for parents of kids with disabilities, it can be heart wrenching. It’s hard not to reflect upon all of the hours spent supporting and advocating for our kids, exploring enrichment activities outside of school, managing therapists and tutors, health crises, insurance coverages, covid lock downs and mountains of forms and paperwork. Not to mention having to manage childcare, jobs, relationships, and keep the fridge stocked! In addition to the moments of sheer joy when our children exceed our expectations, there are also moments that parents can feel a tremendous sense of isolation and emotional exhaustion. Nevertheless, many of us would agree, we will do anything to keep our kids happy, and our ultimate goal is to raise a child who grows into being a healthy, happy, independent adult.
It is no different for Mauretta Copeland and her family. Mauretta and her husband had the same dreams for their daughter Imanni, as they had for their non-disabled sons: to be happy, educated, work at a good job with a great social life and one day get married. Imanni is a self-determined young woman in her twenties who currently lives with her parents. Growing up in an area with lots of cultural
Imanni loves museums, reading, traveling, going to plays, the beach, listening to classical music and watching basketball. Imanni has a fierce independent streak and it’s important to her that she make her own decisions and live life on her own terms. She watched her brother leave for college and establish a career and a life for himself in a different town. After leaving high school, Imanni enjoyed an enriched life with music lessons, swimming, presenting lectures on self-advocacy, job training and is currently preparing to work part-time and attend classes twice a week at a local community college.
Imanni communicates by using gestures, and spelling using a letterboard/ipad/voice output device. She uses a walker to help get around, but because of a physical disability, she uses a wheelchair for long distances. Imanni needs help with activities of daily living, setting up her communication device, and reminders to eat slowly and to calm herself if she’s anxious. Like other young adults, Imanni needs to be encouraged to do things that she has no motivation to do like cleaning her room, caring for her dog, doing laundry or thoroughly washing her hands. Imanni likes to be on-the-go and needs help to organize transportation to the places she wants to go.
Given Imanni’s strong and independent spirit, it was no surprise to Mauretta when she announced that she was ready to move out into her own place. While the Copelands worked hard to raise a self-determined young adult, with the exception of one night at a camp, Imanni has had few nights away from home, and mostly in the care of immediate relatives. Although there is no way to reverse Imanni’s decision now, the idea of moving out makes Mauretta more than a little nervous. However, with every day that passes, Imanni becomes more deeply committed to establishing her life away from her parents and moving out on her own.
Where to begin?
Imanni is seeking a place that will support her to do what she wants, when she wants and make her own decisions. It’s also important to her that the house be tidy, and that she be able to meet her future roommates to be sure they share some of the same interests and hobbies that she does. She also wants an assurance that the paid staff will be patient. Mauretta agrees with Imanni’s requirements, but as a mom is concerned about safety. After living with Imanni for so many years, she is an expert at understanding Imanni’s communication, but has concerns that in a new setting, her paid support will not understand or take the time to figure out what Imanni wants or needs.
Mauretta began researching supported living options by asking friends who work with community providers and her local community services board about residential options, and other parents who have gone through the process with their own adult children. Of course, the ultimate decision will be Imanni’s, but both mother and daughter are researching and visiting homes. One of the best indicators of a good fit that Mauretta looks for is the way that the paid staff interact with Imanni. Do they use baby talk or a sing-song tone when speaking to Imanni? Do they direct their questions to Mauretta rather than Imanni? Those would be red flags for a residence that would not work out for Imanni. Mauretta also observes the other residents of the home. Do they look comfortable and seem happy? For Imanni, accessibility is important. Is the furniture arranged spaciously so that Imanni can navigate her walker through the home? Is there an accessible shower? Does the agency offer small apartments or sponsored residential options in addition to shared houses? Mauretta acknowledged that having competent, kind staff was more important than the house’s physical appearance. For someone who communicates without verbal speech, it’s of utmost importance to both Imanni and Mauretta that paid staff presume competence and not make assumptions. She’s looking for staff with experience talking with someone who uses a communication device and alternative methods of communication, and will take the time to understand what Imanni is trying to say.
Although it’s often mentioned lightly, empty nest syndrome is a very real grief that many parents feel when their children move out of the home, especially for the primary caregiver. Even though raising an independent young adult is an indicator that we’ve done a good job as parents, the sadness, loneliness and anxiety over our loved one’s safety is very valid and should not be minimized. Many parents may experience genuine depression or feel a loss of purpose. It may be a good idea to seek help from a professional therapist, or find support through a group of parents whose children have also launched. Once the day-to-day caregving responsibilities are no longer a major time commitment, it’s an ideal time for parents to begin to look more closely at their own physical health, and consider joining an exercise class or becoming more involved in social or civic organizations. What will you do with yourself once your child moves out? In the words of Imanni, “You’ll figure it out.”
[1]
About the Authors:
Mauretta J. Copeland is a Cultural Outreach Coordinator with the Center for Family Involvement at Virginia Commonwealth University. She is passionate about people who are non-speaking, having their voices heard and seen as competent and capable. Mauretta works alongside families from diverse backgrounds and collaborates with professionals in the community.
Molly Dellinger-Wray is part of the Partnership for People with Disabilities at Virginia Commonwealth University, a university center for excellence in developmental disabilities. She is also the mom of two fabulous adult children, one of whom benefitted from special education and early intervention. Molly enjoys teaching people about healthy relationships and abuse prevention.
Helpful Articles
- Family Chat: Navigating Across the Lifespan [2]
- Navigating Transitions How I did it! [3]
- Transition Planning {Tip 20 of 31} [4]
- Transition Planning Timeline (Checklist) [5]
- Transition & Supported Employment Working for You [6]
- Meaningful Summer Experiences to Aid Transition [7]
- Transition: Shaping Our Views of Technology [8]
- How Can Parents Prepare for an IEP Meeting? (Part 1) [9]
- Apps for Supporting Independence: The Transition to Adulthood [10]
- When Is the Right Time to Transition from Your Home to a Group Home? [11]
- What Are Pre-Employment Skills and How Does My Child Get Them? [12]
- Where to Go if Your Child Needs a Job or Help with Post High School Education [13]
- Parenting Your Young Adult Through Their First Employment Experiences [14]
- How Your Child’s Current Interests Can Help Them After High School Ends [15]
This post originally appeared on our September/October 2023 Magazine [16]