A Life Worthwhile
A Life Worthwhile
Stephen W. Dale, Esq., LL.M. , The Dale Law Firm, PC
This is October which for me is a special time. Mid October is the Stetson Law School Annual Special Needs Trust Conferences, an event where all the top special needs trust practitioners come together to share with their colleagues their views about what this year’s challenges are going to be and how best to address the challenges that our clients with disabilities and their families will have to address. It is a time to ponder how we can assist not only our clients but also our communities to meet these challenges. It is also a time for serious soul searching and truly getting down to core issues.
I had two unexpected events this week that truly touched me. As an advisor to families I get to share their experiences vicariously through their struggles and triumphs. Let me share two very different stories from two very different families.
Let’s begin with a story of hope. I have a very close tie with the Down Syndrome (DS) community partially because I have a niece with DS who has always been dear to my wife and I. I remember that no one had any idea of her condition until she was born. Initially there was shock and emotion that went with it. It seemed at that moment that the family had been thrown an insurmountable challenge; surely this could only lead to despair and hardship. Little did we know that our niece would change everyone’s life for the better and the thought of her not being part of our family is unfathomable. Because of my relationship with my niece I now have a special interest in the unique aspects of raising a child with DS and I am on a number of listservs specially focused on DS. I occasionally give advice and pass along advocacy notices, but I have also learned so much from the other members through the many challenges and triumphs they experience on a day to day basis.
This morning I read a startling email from an expectant mother who, knowing that her child is going to be born with DS, has elected to have and raise the child. The responses flew – and continue to be posted from other parents on the list sharing the joy each family has from their child. Whether you believe parents should have the right to choose or not to terminate a pregnancy, the second part of the right to choose is the choice itself. This family chose to give life to this child life despite significant challenges they will face.
No doubt part of what helped the family in making this decision is the fact that by being a member of this listserve they have become part of a community of other parents that have shared experiences. This group – like so many others – provides support to each family in their group showing them that they are not alone and that there is practical and emotional support. The need for community could not possibly be more important to these families.
There is courage in making this decision, and I know that there is joy to come. This child will be born into the best system of supports in the country for persons with developmental and intellectual disabilities. He or she will receive appropriate education, vocational and residential supports as needed so long as California continues to protect the laws that guarantee those services and our country continues to find this child’s life worthwhile enough to pay for those services. Not that there aren’t problems and the need for improvement to our system, but so long as the present level of supports continue, this baby’s family has every reason to look forward to their child living a meaningful life. These parents will share what many of us take for granted – the opportunity to experience the unique joy of parenthood.
Now for Story Two. I attend as many transition fairs as possible. These are education fairs for students with disabilities and their families in preparation for their transition into the community as an adult. This week I attended a transition fair in Pleasanton with about 50 booths comprised of residential and attendant care providers, vocational trainers, benefit programs, advocacy organizations and almost anything one might imagine.
A couple came to my table, and told me that they have a young adult daughter with a severe mental illness or psychiatric disability. As is all too common, their daughter is not compliant with treatment of medications and engages in harmful behavior when in a manic state. The parents are doing everything in their power to provide for her needs and protection. So they asked me, Mr. Dale – of all these tables out there – which ones are for my family? I looked over this sea of services – and could find little. If their daughter were to have a diagnosis of Autism, most of these various organizations would be a perfect fit. For psychiatric disabilities – there is little. Even worse for this family is the fact that they live in Contra Costa County which has no doubt made the worst abdication of any responsibility for their citizens with mental illness in all of northern California (if not beyond.) I have no doubt that families dealing with psychological disorders living in Contra Costa who witness our pitiful mental health system must feel great frustration and despair.
This family shared example after example of unfortunately all too familiar experiences including the lack of assistance from our medical providers, and when admitted into the “hospital” being barely stabilized and discharged with no meaningful services or follow-up. Despite all of these challenges, these parents have not abandoned their daughter. It takes a certain kind of courage not everyone possesses.
So here is my observation. Parents and family members either embrace the challenge of loving a child with a disability or run as far away as possible. I particularly admire people that step up to the table to be the loving parent of the challenged child. My grandfather once told me that it is easy to love someone when all is joy, but the true test is being there in times of challenge.
Both of these families and their child will face significant challenges. One family will have many choices. The preservation of a system that provides support for their beautiful daughter is essential. The other family is just as committed but they have almost no support. They need new programs, and a community that recognizes that their daughter is also deserving. Each has determined that their child is worth their full commitment. Each displays a kind of courage and character that truly deserves our support and admiration. Each is leading a life that not only make’s their child’s life worthwhile, but makes our lives more worthwhile.
I hope each of them know – if for no other reason – that due to their commitment to their child they will have lead a life worthwhile.
© The Dale Law Firm, PC, 2013 (925) 826-5585 www.achievingindependence.com