Shawn
As told by his Mother
O
n January 6, 1971, Shawn, my beautiful and healthy baby boy, came into this world. The delivery was normal-no complications or obvious defects. Shawn was unusual- although I had no other children, I knew he was special. By the time he entered Kindergarten, tests revealed that Shawn had superior intelligence for his age, and was immediately placed in second grade. When he reached sixth grade, everything started to change. Shawn was no longer excelling; he began to fall behind his classmates and it was clear that Shawn had started under-achieving. Over the next few years, he showed no sign of improvement. Although he remained a sweet young boy, I had my concerns and knew something was not right. I had a very good Pediatrician, who decided to have Shawn seen by a Neurologist. Those results came in and showed some mild brain damage. That was so frightening, as there was no reason for these findings. All the Neurologist suggested was that Shawn would need to learn to compensate for his deficits.
We went for a second opinion. The second Pediatric Neurologist was far more thorough. He informed me that the results of the testing could take up to three months. He sent blood work off to Johns Hopkins University Hospital, after which both his concerns and fears were confirmed: Shawn was diagnosed with a "rare orphan disease, a neurologically degenerative disorder, Adrenoleukodystrophy."
By Shawn's eighteenth birthday, his condition worsened-his physical gait was off, he was impulsive, and it was very evident that college and a higher education was now just a dream we had from the past.
I started looking for someone- some organization- to help with Shawn's condition. In 1992, Shawn was admitted to Gaylord Hospital in their traumatic brain injury program. While there, we attended family therapy sessions. It was clear that Shawn would require 24-hour supervision, and we had the good fortune of having the Director of Admissions and a nurse come to meet Shawn. There were from Datahr, now known as Ability Beyond Disability.
He started to receive services from Ability Beyond Disability in May 1992, and moved into the Maple Avenue Intermediate Care Facility (ICF) group home in Bethel, Connecticut. He was intended to reside at Maple Avenue for six months, after which it was anticipated that he would progress to a Supported Independent Living (SIL) home. Unfortunately, Shawn's health only continued to deteriorate, and it was clear that SIL was no longer an option. I grew increasingly worried and wanted to be closer to my son; soon thereafter, Shawn had the good fortune of being transferred to the Ritch Drive ICF group home in Ridgefield, Connecticut, much closer to my home in Stamford. Shawn now has hospice overseeing his care and still resides in the Ritch Drive group home. That is home to him, and Shawn receives and gives much joy to all around him.
Although his health deteriorates, his spirit does not. His health no longer allows for him to participate as actively as he would like in community-based activities, but he still enjoys outings with other consumers, and recently participated in the Walk Beyond Disability to show his support for the organization.
I have watched what used to be known as Datahr grow better and better over the years, like a fine wine, into Ability Beyond Disability, a name more reflective of the organization's mission and the people it serves. Shawn's home at Ritch Drive has become a second home to me, and the care Shawn has received from Ability Beyond Disability has been extraordinary and goes far beyond competence; Shawn and I have never been treated by the staff as less than family. Ability Beyond Disability helped Shawn develop the skills he needed to become a part of the workforce, maintain a job, and earn a paycheck. For six years, Shawn successfully worked as a member of the nighttime production crew and, when that became too challenging for him, he worked with staff to strengthen his skills and learn to use a computer.
This organization has given Shawn more independence and quality of life than he would have ever had elsewhere. The love and life that surrounds him is a huge factor for Shawn, and I thank God everyday that Ability Beyond Disability exists to not only provide him with the professional support he needs but, most importantly, a life of love, dignity and meaning. That is why I have, and always will have, a strong commitment to this wonderful organization and encourage others to make a similar commitment.
With gratitude, I have left a provision in my will so that Ability Beyond Disability can continue to do the wonderful work they have done with Shawn and others, long after I am gone.
