“My twenty-one-year-old daughter with Asperger’s and learning disabilities is living with us, but what would she do if something happened to us?”
As I met with parents of young adults with special needs at Groves Academy in Minneapolis a few years ago, this was a common sentiment. They wondered how their adult children could survive without them. This fear should be a source of motivation to facilitate as much independence as possible with these young adults. But this is easier said than done, and there are no foolproof playbooks.
It’s essential for those with special needs young adults, whether these be physical, mental, or learning disabilities, to approach the challenge of fostering more independence with the following in mind. First, it’s important to understand that these young adults, with few exceptions, really want to become more independent. Often, conflicts stem from a feeling of dependency and a dislike for being directed or told what to do. So, parents should be looking for and creating opportunities to encourage greater independence.
Independence for young adults is not binary. There will always be opportunities to move the needle on independence. One of the exercises I introduce in working with families is to ask the young adult where they would want to be in five years – living situation, job, education, income, friends, hobbies. In general, rarely do young adults say they want to be living with mommy and daddy in five years. At the same time, some of my special needs young adults want to be living independently in five years but worry about how to achieve this. Having a five-year plan from which you can work back to stepwise goals enables parents to be partners versus controllers. Goals moving to a five-year target should consist of independent or functional living skills- hygiene, dress, health care, cooking, finances, job, education, etc. with actions that both parties can take to support the plan.
Second, it’s crucial to maintain a balance in thinking of what they can do, and what they can’t do. If we have a “disability” mindset and our radar is always tuned to see their limitations, we may miss their capabilities. Although we need to be realistic in terms of expectations, my experience with most parents is that they don’t stretch the young adult enough. Stretch is different than pushing them in that you partner with them, a stepwise manner to reach that next point on the continuum of independence. Both parents and young adults have to risk and stretch. Parents have to let go more, and the young adult has to take on new challenges.
Thirdly, parents must commit to self-care and see this as additive and not a subtraction of caring for the young adult. Like the directive to put your oxygen mask on first before placing the mask on your child if there is a drop in cabin pressure, parents need to work on their coping skills and resiliency to be more available to their young adults. There’s detailed research that shows that even when there are no outward signs of anxiety on the parent’s part, children pick up on their internal state. One of my parent clients enlisted an adult friend to teach their son driving skills because they couldn’t do this without being anxious, which triggered their son’s anxiety. Being nervous in teaching an adolescent or young adult to drive is not an experience common only to parents of special needs young adults.
Although each special needs situation is unique, and there are cases where the young adult may not realistically be able to live independently or be a candidate for placement out of the home, parents can continue supporting independence. By the way, independence should be a goal for both the young adult and the parents. Parents need more resources and support for both the autonomy of their special needs young adult and themselves. This both supports their efforts and frees them up from a sense they are totally responsible for the needs of their young adult. Parents need social support, especially from other parents with special needs children. At times, professional help can help address the strain that might exist for each parent and on the marriage.