If you’re the parent of an individual with developmental disabilities, how often have you realized, while speaking with a casual friend, your cousin, or even your child’s doctor, that they did not have a clue what it is like to care each and every day for your son or daughter with a disability? I can’t tell you how many times other parents have told me about being asked, “When are you going to get a group home for your son?” or “Why don’t you get some help?” The majority of our fellow citizens think that all that you have to do is ask.
I’ve been known to be something of a crusader, bending anyone’s ear with whom I come in contact. Whether it is in the aisle at the grocery store or at a dinner party, I do my darnedest to enlighten people about the lack of services and opportunities for individuals with developmental disabilities and their families. I can’t seem to help myself, because I think a crisis is looming in the not too distant future if a serious commitment is not made to building an infrastructure to support and care for our sons, daughters, and families. If the public understands the situation I think they will support efforts to meet a need that is growing day by day. So I talk, and talk, and talk. I share my knowledge with people but knowledge is not synonymous with understanding.
The Family Support Coalition of New Jersey and the Family Support Councils throughout New Jersey have gathered “To Do” lists from families caring for individuals with developmental disabilities. The lists are powerful, compelling, and best of all, enlightening accounts of the daily challenges and struggles families caring for loved ones with developmental disabilities face every day.. I was very moved by the simple honesty in these lists. The impact they will have on people who do not truly understand the commitment and “love against all odds” that it takes to care for our sons and daughters is important, very important. These lists will have the ability to help our lawmakers, policymakers, and fellow citizens have not just knowledge but understanding. Read the collection of lists for yourself. Ask everyone you know to read them.