We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness. That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed. That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.
--The Declaration of Independence of the Thirteen Colonies, July 4, 1776
Well, we all know that all persons are NOT created equal. Some are born with genetic defects, like my Karie who has Prader-Willi Syndrome. Many are born with FAS disorders, like my John. Although life is not fair or equal for them, and although others see them as "less than," they see themselves as the wonderful human beings that they are. My third child was not created equal, in that he is gifted with looks, brains, and musical talent far beyond that of his peers. And yet he is saddled with responsibilities and emotional burdens far heavier than his equals.
Independence Day usually makes me feel sad and glad all at the same time. I'm happy to live in a country where I can speak up and be heard regarding my children's rights, where I change the system, change the laws, move my legislators to support services needed for my kids, to be able to help them achieve their potential of that Safety and Happiness that we strive to provide for our children.
I feel sad too, because the Fourth of July is a celebration of Independence. Freedom is a precious and abundant comodity to most in America. But for our kids in their legal coming of age, freedom is not so easily won. I have not seen any documented accounts of individuals with Prader-Willi Syndrome being able to live independently. Streissguth's studies show that independence in work and in life is achieved by less than 10% of those with FAS in her studies of more than 400 individuals. In fact, the only way to ensure our kids will enjoy safety and happiness is through restrictions of the freedom they want so badly. With the judgment of a six year old, a child with PWS or FAS cannot handle life decisions on their own, and they must depend heavily on many supportive people to help them function in life.
As parents, we naturally have a desire to raise our children with the goal in mind that they will fly from our nest and be on their own someday, self-sufficient in their own right as adults in a society that values independence highly. As parents of children with FAS disorders, we find out sooner or later that independence for our children could mean a life sentence, in prison, on the streets, or in an institution. At best, it means confinement in a residential setting that helps them be as independent as they are capable while providing the constant supports they need to be reminded and assisted in making life decisions.
For my non-disabled child, I can hope for a future of independence, with health, happiness, and financial security, with a home and job of his choice that gives him joy and satisfaction, and perhaps with a partner to share that joy and to raise a family. For my two children who have mental disabilities, I can hope for a future with care provided by employees of an agency who may or may not like them, be committed to them, or nuture their needs, emotionally, physically, and spiritually. If they are lucky enough to qualify for such care. If funding continues. How will that care be supervised when I am gone? Care for one child is fraught with frustration, risk, and obstacles at every turn, with constant advocating to ensure her safety and welfare. Care for the other child does not even exist, even though that "child" is 23 years old, a little boy in an adult's body, a young man who wants freedom as badly as any other guy his age, but who accepts the limitations of his disability gracefully, knowing he will never drive a car, never get a real job, never live on his own in a home, never raise a family, never pursue a career, never plan for a retirement. The American Dream is a bit beyond his reach. But because he lives in America, he has benefitted from being eligible for part-time employment through Voc Rehab and for supplemental income through SSI. For that I am grateful to be an American citizen, that he can benefit from these programs. But they are not enough. $650 per month may pay for room and board and clothing and transportation, but it does not provide for a one-on-one mentor to be by his side day by day to ensure he avoids serious trouble that could land him in jail or the hospital or the morgue. He can't remember to take his meds, or keep his hands to himself, or even to look both ways before crossing the street, because of his mental disability. But he can remember that he he is in love with a sweet young lady that he would like to plan a future with someday.
As I watch the fireworks display tonight, I will think of how colorful and exciting my life has been as a parent of these wonderful kids. The explosions and outbursts, not knowing what is going to come next, waiting for the grand finale to subside and for quiet to return. I will think of how life must be like the 4th of July every day for my kids when they experience sensory overload from everyday life that doesn't bother the rest of us but sets them off again and again. When I watch the lightning build up in the clouds in the sky after the fireworks show, I will think of the storms we weather as parents, in awe of the power of nature that is mostly beyond our control, like the emotions and behavior of kids with FAS or PWS, as we scurry for a place of safety, protection for ourselves and our children, from their disability and from a society that does not understand, that is not FAS-friendly or Prader-Willi-wary.
In spite of the struggles we have faced living with mental disabilities in America, I wouldn't trade this country for anything. Except maybe an island somewhere that has lots of chocolate and coffee, and 24/7 respite, and computer cable access, where our kids can't get out and predators can't get in. Then maybe I would trade. But that doesn't exist. So I'm happy to stay here, a prisoner in my own home. My son can't go anywhere without me, and I can't leave him at home alone, so I can't go anywhere without him, or without arranging respite for him. Neither of us are free, really. But we are happy citizens, living a comfortable life, with our needs met, for now. God Bless America.
Have a Happy and Safe Fourth, and appreciate your own Freedom!
July 4, 2001