Family - the Ties that Bind… and Gag! – Erma Bombeck

If typical parents can be like “helicopters” hovering too close to their adult children, then special needs parents can be like “field mowers” cutting down everything in their path.  Instead of hovering, they intrude and want to control everything down to the last detail.  If typical parents “enable” adult children in poor behavior, then special needs parents “insist” on it.  Everything that is undesirable is not their adult child’s fault, but always someone else’s.  If they fail to get a job or are asked to leave a venue, it is always due to something the care provider did wrong not the limitations they face or their disability.  If typical parents struggle with the loss of the “need to be needed and nurturing”, special needs parents suffer from the loss of what feels like “everything”.  The unpleasant truth is that their adult child still has massive needs, but now the parent must trust someone else to meet some of those needs.  The adult child has a disability that effects their ability to be independent, but they still want the independence that everyone craves at their age.  Navigating this relationship is difficult, but necessary.  Family is an important part of a balanced life no matter what the obstacles.

In order to foster a positive family relationship for the individuals we serve, we have found the following items to be helpful regardless of the individual’s living situation (i.e. with family, roommates, alone):

·         Establish a schedule.  Individuals with autism thrive on predictable schedules and family stopping in unexpectedly interrupts their schedule.  This also allows care providers to have a reliable schedule of hours they will be working.  Success relies on both the care provider and the family sticking to the agreed upon schedule.

·         Establish financial expectations.  The individual’s ISP will define the person or company that will be responsible for their money and maintaining their governmental services, but often does not go into further details.  Weekly spending amounts should be defined as well as expectations for how this money will be spent and tracked.

·         Care expectations should be well-defined.  What will a typical day look like?  What activities does the individual prefer?  This should come from the entire team and the individual themselves.  Many families seek out our services because they are provided in the community instead of a segregated location.  But what that looks like for each individual may be different. 

The goal is not for everyone to “fit into a box” with the same schedule, funds, or activities.  The goal is for families and individuals to feel their voice is heard and a working relationship has been established.