JEVS Independence Network-Collingswood & JEVS Philadelphia Independence Network
PIN Points Newsletter
Kyle was born in 1990. He was a beautiful healthy baby, and we were overjoyed that he was ours. From as early as the first days of his life, Kyle presented us with new challenges. Our assumption that as “experienced parents” already, this little baby would seamlessly fit in our family. Practically immediately, Kyle proved us wrong on most counts. He cried in an inconsolable wail all the time. He was a terrible sleeper, and we struggled to soothe his distress. Our beautiful little monkey grew more inquisitive and could fearlessly climb anything, but struggled with milestones.
At his 18-month well-baby check, I shared my concerns with the pediatrician and used the word autistic for the first time. I was scared, but the pediatrician told me everything was fine, and Kyle would “grow out of it.” Kyle continued to remain a beautiful, energetic little boy, but he didn’t speak. The new pediatrician sent Kyle for speech therapy and with treatment Kyle found his voice. We were finally able to know this fascinating little boy in a new way. Throughout his childhood we all struggled to help Kyle grow and develop. From as early as preschool his teachers noticed that he was an exceptional and unique little person. School was a challenge from day one and along the way Kyle did not get to experience success or friendship especially after about 3rd grade. To say it was heartbreaking is a gross understatement. After a disastrous year in 9th grade we were fortunate to get Kyle into a private school for kids with learning differences. He experienced success and made friends for the first time in his life. At every step of the way Pat and I attempted to uncover what were Kyle’s specific challenges. Educators, principals, school psychologists, private therapists and the physicians discounted our concerns for
autism. I heard so many times, “he’ll grow out of it.” The word “spectrum” did not exist nor the autism awareness that is prevalent today. As a parent I didn’t succeed to find the answers for Kyle. However, he still grew and developed into a brilliant, clever, wickedly funny young man filled with empathy for the world and a thirst for learning. Our family of five was always a team and no matter what life challenges came along, we tried to keep moving forward.
In June 2008 we moved back to the Philadelphia area to be closer to family, and in August Kyle took a huge leap by starting college. None of us knew if things would be different but we hoped. That fall our hope faded from concern to fear for Kyle’s emotional and psychological health. It was evident by Thanksgiving that Kyle needed to come home. I was afraid every day that I left him home alone. Thankfully we got him into Johns Hopkins hospital for the month of January 2009. The experts once again gave us their esteemed opinions. They discussed depression, anxiety, OCD and a list of other possibilities, including schizophrenia. I struggled every day to keep going. I sat in the office of yet another doctor and explained to him that as early as 18 months I felt Kyle displayed signs of autism. Finally, I got someone’s attention. Maybe ‘Mom’ was on to something. This was a major turning point when we left the unchartered course and finally had a path the Johns Hopkins doctors named Pervasive Developmental Disorder Not Otherwise Specified or PDD NOS (aka Autism).
With the PDD diagnosis, we now had a better understanding of our son and how together we could make his life and our family better. The diagnosis gave us better tools to help Kyle and start learning what worked better for all of us in how we related to one another. It was at this time that Kyle started volunteering at a local nursing home and discovering his value. This was a new trajectory with two key milestones ahead that would ultimately lead Kyle to PIN.
The first was finding a support group for young adults on the spectrum and their families called Socializing on the Spectrum. Each family in this group shared a similar experience with their son or daughter on the spectrum: few or no friends and feelings of failure and isolation. It was so miraculous really, because, the families in this group for once were no longer alone. The young adults found friends, many for the first time in their lives, and started having a social life. In the group Kyle started coming out of his shell. At one group meeting, Jerry, Lois and Marnisha came to tell us about JEVS’ new PIN program. We were thrilled to hear about it, but could not fathom Kyle could be ready for such a
program any time soon. We had a leap of faith and shortly thereafter, Kyle signed on and got a place with his brother in Narberth to start his PIN adventure.
Kyle’s connection to all of the amazing new people including the staff and his peers helped him see his worth. He had found his community. Throughout Kyle’s time in the PIN program, all of the staff have been extraordinary with their kindness, caring, diligence and professionalism. We could not be happier. In the past 10 years our sweet, funny, empathetic son has made friends and experienced successes of his own making. PIN helped provide the framework for Kyle to grow as an independent man. He has independent living basics like grocery shopping, laundry and cooking. Beyond those life skills we all have to negotiate, he has continued to pursue his writing, spend time with friends, present at a LaSalle autism conference, and show profound strength and resilience in how he faces the world and his challenges. The PIN village is his tribe and no matter where life takes him, he will always
Posted in Blog JEVS Program: Independence Network