Transitions

Parenting is demanding in any situation.  It’s a continuously steep learning curve with challenges that are mental, physical and financial.  Through the seasons of life, children grow up in homes, reach certain milestones and then move out to gain independence in their own households.  This journey is not the same for a lot of families with neuro-divergent children who don’t follow the same path as their neurotypical peers.  Worries that mercifully fade from five-alarm fear to mild apprehension as neuro-typical children get older, mature, and adapt, stick around for parents of neuro-divergent children into and throughout adulthood.  And at the top of the list for many is the worry of what setting an adult child will live if and when the family caregivers are no longer able to care for the child, or, perhaps, are gone altogether.  It is an emotional, tricky and ever-present worry.  And not enough attention is being paid to this looming problem of transition. 

Transitions are part of life.  For example, aging senior citizens, often with input from family members, might prepare for the transitioning to home settings that include supportive services like socialization to help avoid loneliness, which has become epidemic for Americans and seniors and neuro-divergent adults, especially.  Once simple tasks become harder as cognitive and physical ability declines, necessitating the need for help and support.  Factoring in a heightened desire for safety makes transition to a senior housing facility sensible if not easy.  However, this transition is not likely for older caregivers who are caring for an adult neuro-divergent child in the home unless there is a simultaneous transition plan for the child.  What might that even look like?  To be sure, there are options for families with wealth, regardless of where an adult child exists along the continuum of need.  Those options may even include passing on a family home or purchasing a new dwelling for the child as well as arranging for supportive services.  For families without significant assets, however, the options narrow sometimes all the way to hope and pray. 

Sue is the mother of a 36-year-old son with Autism and I/DD.  Holding down two jobs, David is a fun-loving, friendly adult with moderate needs especially in problem solving, speech, cooking skills and financial independence.  “I actually enjoy having him live with us but he doesn’t want to,” Sue says. “He wants to live independently in a community that supports his needs in the town he grew up in.”  

“We desperately need housing options for this (I/DD) population that take into account their support needs, personal preferences and individual choices.” Sue says, “These solutions must also be sustainable and allow for aging in place.”  Since nothing like what Sue describes exists in their community, she and her husband have been working for the past several years with several cohorts on final plans for an affordable apartment community that would meet the needs of David and others with IDD.  This reality is not unique to Sue and has prompted more and more families to take matters into their own hands and step into the complex world of housing and community development to declare that if nothing exists, they will build it.  Let’s find ways to help and try to leverage existing systems.  Some transitions in life are smooth and some are more difficult.  Let’s find ways to use existing and new resources to help neuro-divergent adults transition into a supportive living environment for the benefit of them and their aging caregivers.

Like so many other aging caregivers, Sue asks, “When I am no longer here, who will help my son be the best person he can be living independently, accessing the greater community while thriving in an environment of his peers and people who care about him? Who will be his village when I am gone?”