December 7, 2011 Prism Newsletter
By Ann Cameron Caldwell
These are the times when many families enjoy time together, and… time apart. I can’t help but think that as the year rounds to the inevitable close, that a time often reserved for (in theory, at least), rest, relaxation, enjoyment of family and friends is anything but. I think of the complexities involving winter breaks from school, travel logistics for outgoing visits or incoming visitors, managing work requirements, social events, and how to bring in the New Year. Not to mention the food required to sustain such efforts…!
Did I say “rest” and “relaxation?”
I wonder: Where do those two elements – rest and relaxation – come into play for families that are connected to those with autism or intellectual and developmental disabilities that have significant support needs? When do we get the “down time” from the day-to-day responsibilities that come with being parents or siblings or other defined relationships? I know too many families that aren’t getting enough help on a day-to-day basis. The Arc’s FINDS Survey documents what many of us already know. Families are stressed, stretched to the max with carrying the needs of their family in an economically tough time. Saving financial resources is tough enough and even tougher when there isn’t much left over to save; retirement plans are at risk and vacations are few and far between. Some aren’t sleeping, and some are experiencing their own health issues or age-related declines that have significant effects on providing care for their families. Let me be clear: help is needed to provide support for the individual with the disability. Help is needed for the family that picks up the wagon when the government funds for disability supports stop and will go no further. Holiday or no, families are taking on most of the world that Atlas held on his shoulders when it comes to making good things happen for their family members with I/DD. And that world –and to mix metaphors, the wagon as well – is getting bigger and heavier.
My wish for families connected to autism and I/DD is this: for moments of peace and happiness to descend upon you and your loved ones many times this coming year, and for help and support to find you when you need it most. You are extraordinary in minute-to-minute actions. Rest in that.
Ann Cameron Caldwell is The Arc’s Chief Research and Innovations Officer.