If you are a parent of a child with an intellectual, learning, or developmental disability such as autism or Down Syndrome, you probably face particular challenges as your child approaches adulthood. Whereas parents of typical children face the challenge of the “empty nest syndrome”, you may be struggling to help your child grow in independence, even as you face an increased burden of care. As your child ages out of a full-time school program, available resources generally become both less available and less coordinated. The task of maximizing your child’s independence and relieving the burden of caretaking may begin to feel urgent.
The challenges of transition come as a shock to many parents, who by this time often have overcome many challenges and may have achieved a level of calm . Families with young children with developmental disabilities face a number of stressors, which may include conflicting diagnoses and treatment recommendations, painful emotions, conflicts over how to address their children’s needs, and heavy time and resource demands. By late adolescence, many families have clarified diagnostic issues, found programs to maximize children’s development, and made progress towards addressing many of the emotional challenges related to their children’s disabilities.
Probably the biggest factor that helps families cope as their children grow up is the array of educational, therapeutic and other services that are available. Parents of infants and toddlers can make use of federally-mandated programs that offer diagnostic evaluations, speech/language therapy, and respite care. Parents of school age children are able to obtain accommodations and supports via Individualized Education Plans (IEPs), and can often access recreational activities and specialized treatments outside the school setting. Through these programs you can often find parents in similar situations who can offer information and support.
Parents of transition-age children, in contrast, usually lack comprehensive and coordinated services. While all jurisdictions offer some programs for adults with disabilities, waiting lists are usually long, and people are typically only able to access a fraction of the supports they need. In addition, parents have to coordinate navigate a myriad of agencies.
You can take a number of steps to obtain to move your children towards greater independence, relieve the burdens of caretaking, and help your whole family cope:
- Search out a local ARC or other organizations (such as the local chapter of the American Autism Society or the National Association for Down Syndrome) that offers comprehensive lists of programs that support independent living, vocational assessments, educational programs, or housing assistance, as well information about how to access them.
- Continue efforts to develop your child’s functional living skills. Because the behavior of children with disabilities often calms during late adolescence, you may have a “second chance” to improve their teen’s hygiene, organizational ability, and pragmatic social skills.
- Make use of available transition resources. All schools are required by law to begin transition services when children are 14. Some government entities provide funding for transition programs that include eligibility screening and assistance accessing vocational and/or educational supports.
- Seek out professionals who can help you obtain services. Disability lawyers can help young people apply for Social Security Disability Insurance, financial professionals can set up special needs trusts, and case managers can help you navigate and access the maze of service agencies. Some nonprofits also provide case management services for families.
- Search out multiple resources to transport your children to their activities. Train your young adult as much as possible to use public transportation, and take advantage of the transportation programs that are available in your area. Consider carpooling, which can help both you and your child to build social connections.
- Connect with parents in similar situations. ARCs, private organizations, and online groups can be a great source of both information and support.
- Connect your child with peers, mentors, and professional counselors. A number of private and governmental organizations offer discussion groups, recreational activities, and supervised social events where your child can socialize. Mentors through programs such as “Best Buddies” can help your child develop their independence and navigate the adult world. Counselors and therapists who are trained in working with those with developmental disabilities can be particularly useful in helping your child cope with the transition to adulthood.
- Consider making use of therapy for yourselves and other family members. No matter how many efforts you make to maximize your child’s independence and utilize all of the available resources, you will continue to be confronted with an ongoing burden of care. Moreover, whatever you may have done to help your child develop, his or her life is likely to begin to contrast more sharply with those of his or her peers. Family therapy can help you and other family members to manage these challenges and support each other.
The steps you take to facilitate your child’s independence, relieve the burdens of caretaking, manage your emotions, and strengthen your relationships will help your child as well as all family members to transitions more successfully, and will position all of you to achieve satisfaction as you enter the next stage of your lives.
Posted by Jonah Green