Impact Feature Issue on Parenting Teens and Young Adults with Disabilities

Have you ever commented that a person is “going through a stage?” Probably. But have you thought about “stages” as they relate to families, especially those who have adolescents and young adults with significant intellectual disabilities? 

There are between 6 and 24 stages representing the family’s passage through time, but let’s keep it simple and consider only these stages:

• Marriage and the new couple
• Families with young children
• Families with adolescents
• Families with children launching to adulthood
• Families in post-parental years
• Families with parents who are elderly
• Death of parents

These stages occur in most families, can be anticipated at certain defined times in the family life cycle, and are generally symbolized by age-appropriate “punctuation marks” such as confirmation, bar and bat mitzvah, a driver’s license, graduation from high school, and marriage. That’s the norm. But what happens to your family life cycle when your child has a significant intellectual disability? 

Families often get mixed messages. Many people expect you to live your life by pretending that your child’s significant intellectual disability does not exist. On the one hand, there are the messages about normalization, self-determination, independence, and community inclusion. On the other hand, families of individuals with a significant intellectual disability do not have the same “punctuation marks” nudging them along to recognize their child’s increasing competence as their son or daughter moves from being a child to an adult. Confusion, ambiguity, and being “frozen in time” at an earlier stage can occur.

We will illustrate this mixed-message dilemma during the teen and early adult years by using our family as an example. Our son, Jay (JT), is 38 years old and has intellectual disabilities, autism, bipolar disorder, and an irregular heart rhythm. His sisters, Amy (31) and Kate (28), have no disabilities. 

Adolescence

JT was 8 when his sister, Amy, was born and 11 when his sister, Kate was born. His birth order made him the oldest child, but in his teen years he was the youngest developmentally. At 16 years of age, Amy and Kate were getting their drivers’ licenses; at the same age, Jay was still learning to be dry through the night and had not mastered (and still has not) crossing the street safely by himself. We had to raise our typical children and raise an exceptional one, simultaneously. In some ways it was like having two family life cycles to negotiate. 

Launching

Research on families of children without disabilities has found that they tend to experience the greatest stress at the launching stage of the family life cycle because they have to plan for life after high school. A challenge for Amy and Kate was picking among the many different colleges that would have welcomed them as students. The challenge for JT was finding even one program that offered the kind of “typical living” that he wanted for himself (and that all of us as his family endorsed). We had to discover and often create opportunities, networks, and funding streams that offered Jay dignity, interdependence, inclusion, and productivity/contribution. It took a number of “trials and tribulations” in order to choreograph how JT, especially given his significant intellectual disabilities, could have a home of his own, a real job, a circle of friends, regular opportunities to be with his girlfriend, and essentially a life he loved. With six postsecondary degrees between us, a national network of leading disability advocates ready to help us, and enough money to purchase what we needed, it still took us nearly 10 years of partnership with Jay in order to create the life he wanted. 

Post-parental Years

Right now, we are in the post-parental stage – somewhat. Amy is married, has a 15-month-old son, and is moving through her own family cycle. Kate is in graduate school, has a strong circle of friends, and her acting career is as well mapped out as any such career can be. We talk to them frequently, visit as much as possible, and miss their daily and weekly presence in our lives. Yet we are relieved to not have as much parental responsibility for their daily and weekly well-being as we have had in the past. This is typically what the post- parental stage of the family life cycle is all about.

Although JT is 38 years old, we are still intimately involved in orchestrating the supports in his life so that he can live what we call an “enviable life” – a life that is not in any way characterized by second-class citizenship and that enables him to truly be a full citizen of his inclusive community. Weekly, we oversee the maintenance and upkeep of JT’s house; provide support to his house-mate who, in turn, provides the key support to JT; address challenges that arise due to the significant mood shift that JT experiences in a bipolar cycle; complete the myriad forms from Medicaid, Section 8 housing, and SSDI related to JT’s benefits; handle his insurance and property taxes; often go to his doctors’ appointments with him; and problem-solve when unanticipated behavioral and mood challenges prevent him from carrying out his typical routine. We have arranged for Jay to work at the Beach Center (which we co-direct); thus we also have ultimate responsibility for orchestrating his job supports. JT has great job coaches and co-workers who provide support to him, and he also has a wonderful housemate and nearly a dozen young adults who support him in one way or another weekly. JT also enjoys coming to our home and chooses to be there for a portion of almost every weekend and all holidays. His presence is a joy in many ways in terms of not being separated from him by long distances as we are with his sisters; however, during our post-parental years we still are tethered to JT and arrange our schedules so we are home on weekends and do not disrupt the security of his regular routine.

Many self-advocates, as well as professional leaders in the area of self-determination, frequently advocate for families of individuals with disabilities to pull back and encourage their son or daughter to be in charge of managing his or her own funding, hiring and supervising his or her staff, and accessing community resources of choice. We are certain that if we had not advocated so strongly for JT to be able to participate in self-determination funding, and if we did not provide such significant and practical support, this clearly would not be an option for him. In our community there are no support brokers or agencies proactively pursuing self-determination funding opportunities for individuals who are not able to choreograph their own supports. 

Tips for Keeping the Cycle Moving

Negotiating the many mixed messages that occur in the family life cycle when an individual has a significant intellectual disability is challenging for families. It can be easy to let the atypicality of problems such as chronic bedwetting, intense problem behavior, and a lack of capability to cross the street safely keep an individual with a disability and the family from progressing throughout the typical expectations of the family life cycle. Some of the lessons we have learned along the way are incorporated in the following tips for keeping the family life cycle moving forward:

Adolescence

• Foster your child’s friendships with peers and a wide range of people of all ages across the community.
• Seek to have your child participate in inclusive school settings, which will enable you to stay in touch with typical age-appropriate expectations.
• Seek extracurricular activities at school and/or community organizations that enable your child to be with same-age peers.
• Emphasize skill development related to self-help and activities of daily living (for example, waking up to an alarm clock rather than to parents).
• Learn about various occupations for your child and seek experiences that will provide prerequisite skills for and exposure to those occupations.
• Explore the use of assistive technology that will support greater degrees of adolescent and adult independence.
• Explore options for your child to use public transportation.
• Seek advice from siblings about how they believe the independence of their brother or sister with a disability should be facilitated and ways in which you as parents should ensure that none of you over-protect.
• Foster friendships with adults with similar disabilities. Explore the options of your child visiting them in their homes (perhaps even spending the night occasionally) and shadowing them on their jobs.
• Visit young adults who have various types of housing and encourage your child to express preferences related to each.

Launching

• Based on the preparation that you have done related to future housing and employment, implement options with the greatest likelihood of success and be prepared to provide extensive support, especially during the beginning phases.
• Pay attention not only to the residential and work experiences of your son or daughter, but also help foster social connections in the community and friendships.
• Take one step at a time, do not get overwhelmed, and realize that supporting the creation of a whole enviable life can take years.
• Encourage your son or daughter to express feelings and preferences about the new experiences that they are having. When there is limited communication or cognitive understanding of some situations, pay close attention to behavior, energy levels, and mannerisms that can indicate ranges of satisfaction to dissatisfaction.
• Enlist ongoing advice and guidance from brothers and sisters to help gauge how things are going, what needs to be improved, and how quality of life can best be manifest.
• Families with parents who are elderly

These tips are for families like ours who find that predictability is a rare part of life, typical assumptions don’t necessarily apply, and creativity, hard and constant work, and daily diligence must be embraced as the norm. Not that we would have it any other way! Jay is our teacher of how to live well (and he does live exceedingly well), a guide in our work, an inspiration for much of our writing, a brightly shining light in our hearts, a balm for our spirits, and a beacon for our religious and ethical selves. And more.