We've Come So Far But We Still Have So Much Farther Left to Go

I read on FaceBook this morning that the son of a friend is graduating from high school next weekend and headed to college. Not that surprising as most of my peers (those who didn't wait like me until age 39 to begin having children) are now in that home stretch parenting time. What is surprising is that a decade ago college really wasn't seen as a viable option for this child because he has autism. However, he has an advantage that should never be underestimated. His mother is a tireless advocate for her children and for countless others. As a professional advocate she helps families, including her own, navigate "the system" so that they can secure the resources needed to help their children grow to their fullest potential. His mother is the older sister of one of my college roommates. My older sister, special education teacher extraordinaire, died a few months before my son was diagnosed with autism so I couldn't lean on my sister to help me figure out how to navigate " the system." Knowing this, my college roommate shared her older sister with me when I needed her most. During the past decade I've often thought about my friends and their family even if I am the worst at keeping in touch as I struggle to deal with the here and now of my journey in autism land. During college and law school I spent countless hours as an extra child in their family. They lived 20 minutes away from school and we often spent Sunday afternoons complete with wonderful family dinners at their parents' and grandmother's home. Their parents were used to children as they had 7 of their own although I only had the privilege of meeting 5. Their oldest son died tragically in a car accident when he was a toddler and their 2nd son died tragically when he was a young adult and residing in a New York State institutional care facility for those with developmental disabilities. 50 years ago these amazing people were faced with Sophie's Choice. They were told the only way to help their son get the care he needed was to relinquish their parental rights and place him in an institution where he would be better off as would their other children be better off growing up without him. While they never talked about their children who were no longer with them, I have no doubt that these parents thought of them always and missed them terribly as they raised their other 5 children and welcomed strays like me into their home. After my friend's children (she has a younger daughter in addition to her graduating son) were diagnosed with autism, my friend's parents relocated from Albany, NY to Atlanta to help her care for their grandchildren. The more Grandma learned about autism, she realized that her 2nd son, too, had autism. Unfortunately this amazing mother and grandmother died last year so she won't be there to see her grandson graduate from high school, but I have no doubt she, her husband and older sons will be watching from above and cheering loudly. Today is a bittersweet day for our school community. Two years ago a bright star was tragically taken from us. He was a happy, vibrant 7 year old whose eyes sparkled with the mischief you just knew he was contemplating. He was beloved by all who knew him, especially those who worked with him at school and in his home program. I learned during my time in Family Court that some things are beyond my ken. I learned to stop asking why because there are some times the answer is not mine to know. So this morning my son and I stopped at the grocery store before school and he bought flowers and a fruit plate for his teacher and her staff. It is a small gesture, but it is the best we can offer to comfort our school community as they remember my son's classmate and friend. This morning the New York Times announced that NY Governor Cuomo is proposing creation of an agency to protect the rights of those with disabilities, including developmental disabilities (http://www.nytimes.com/2012/05/07/nyregion/governor-to-propose-new-agency-to-fight-abuse-of-disabled.html?_r=1&emc=tnt&tntemail0=y). Words can not express my sadness about the quality of life for too many people with developmental disabilities who reside in NY group homes. After Willowbrook we thought it could never happen again in New York especially since in the early '90's we closed the large institutions and moved people with developmental disabilities into smaller homes located within the community. In 1991 it was my privilege to be appointed Guardian ad Litem by the local Surrogate Court Judge for half a dozen former residents of the Rome, NY Intermediate Care Facility who recently were moved from the large institution (it befittingly became a prison). Like my friends' parents years before (their son resided in that Rome facility), the parents of my clients were required to relinquish their parental rights in order to get their children the care they needed. However, in 1991 New York State realized that it was in the best interest of my clients to encourage their parents or other close relatives to apply to Surrogate's Court to be appointed as guardian of their adult child. It was my job as Guardian ad Litem to be the eyes and ears of the Court and report on the appropriateness of these guardianship petitions. I found loving parents and caring staff. All of my clients appeared to be well cared for. I do take comfort that from what I gather from recent media reports, the group homes in Central New York appear to be different from some other places in New York State in that the vast majority of people who reside there appear still to be well taken care of. A couple years ago I sat on the AZ Dept. of Developmental Disabilities Sustainability Workgroup where we began the initial discussions regarding charting a course for the future AZ "system" to serve those with developmental disabilities. This work currently is happening at the Federal level (NCD Report: Exploring New Paradigms for the Developmental Disabilities Assistance & Bill of Rights Act http://www.ncd.gov/publications/2012/Apr222012/). Here's hoping as we go forward that quality of life remains our #1 concern.