Isaiah is the youngest of my four children. Almost four months into the pregnancy, I was told that he would have Down Syndrome. His father and I were devastated. We prayed to have a baby but never thought something like this could happen. Questions and advice on what to do came from everyone, family and friends. What will you do? My doctor advised me to consider abortion or putting him up for adoption. Because of my religious faith, I knew that for me the only choice was to give him life. I asked God to take care of us and guide us through this journey.
On February 25, 1993, my little bundle arrived. He was 6lbs 9oz and the most beautiful curly-haired baby I've ever seen. I knew at first sight he was special, in more ways than one. I needed a name for him, so I opened the Bible to Isaiah. I closed and opened it again to Emmanuel. I knew then his name would be “Isaiah Emmanuel.”
Once my decision was made, I devoted my time to researching everything I needed to know about Down Syndrome. My genetics doctor gave me an outdated book on mongoloids; it upset me so much that I threw it away. I knew I had to find other parents who were going through a similar experience. I started networking and met other parents, and with my doctor's assistance I started a resource room at the hospital where I worked. I registered on as many disability listservs as I could find. I developed a circle of support for me and Isaiah because I knew I would need all the support I could get now and in the future. Most importantly, I had conversations with my children. I wanted them to understand that their brother would have some challenges but that as a family we would take care of him. I felt I also needed to talk with my extended family and friends since the majority of them didn't understand my decision.
Every day I’d look at my baby with amazement. I already had three. I thought, I should be a pro at this, but this baby was different. Not so different, really, but he did require a little more patience and support than my other babies. I saw he was alert and a fighter. I often thought about what the professionals said, that he would be delayed and unable to read or write. The focus always was on his disabilities instead of his abilities. At times, I wondered why my baby couldn’t be healthy. I refused to have a pity party, especially when I saw how hard he would try. I told myself, "There's no time to waste; there's no time for denial."
I reached out to Public Health Management Corporation’s ChildLink Early Intervention Service Coordination program. A ChildLink Service Coordinator arranged for an evaluation, developed a plan of services and support and secured therapists to work with Isaiah and teach me how to support his development. Isaiah received occupation and speech and language therapy, in addition to an array of helpful resources. ChildLink staff also educated me on my son's diagnosis and connected me to Parent Networks system which I still rely on today. I did my research and found United Cerebral Palsy, which was an inclusive, early intervention program. Back then the program consisted of 50% typically developing children. This program was an excellent fit and great opportunity for Isaiah to learn along with the other children and be exposed to a diverse group of peers. He made great strides, was happy, and graduated with his peers.
The first five years in the early intervention system were nurturing and wonderful and then we transitioned to the School District. This was a whole new world and I had to commit to learning this new system that did not always have the time or resources to understand Isaiah or my concerns as a parent.
Isaiah enjoyed playing with his LeapFrog learner and liked connecting his DVD player and devices together. It became clear that he loved tinkering with electronics and loved music. Although Isaiah was learning, he still had difficulty with his speech and language. Isaiah’s frustration increased because he couldn't express himself and was not understood. At the same time, I was taking care of my aging parents. I, too, was frustrated and overwhelmed with all my responsibilities. I decided that we needed more supports and applied for the ID Waiver but was placed on a waiting list. I utilized my natural supports and accessed services through my health insurance. It took some time and advocacy but Isaiah was eventually approved for the Person Family Centered Waiver.
The services and supports received through the waiver made a difference almost immediately. Isaiah now had a Support Staff Worker to assist and support him with activities of daily living and participation in the community. The boy with the infectious smile was back! The struggle with receiving the right education placement was still a concern. I pleaded to school officials to give Isaiah additional speech therapy and identify assistive technology to support his needs. The school was not receptive. After years of fighting I moved from one county to another. I found a new high school for Isaiah. I stepped out on faith so that Isaiah could get the education he deserved. Isaiah’s new education team listened to my concerns and agreed to give him a chance to be included in some classes with his typical peers and teach him how to use communication devices and other assistive technologies. Isaiah made friends and took advantage of the many school opportunities. Isaiah participated in the Best Buddies Program, the Culinary Program, and the Discovery Job Program, and joined the YMCA, where he worked out and learned how to swim. Isaiah graduated in 2011 among a class 500. He later went on to a Transition Program in Coatesville until he was 21. Isaiah was the recipient of Governor Corbin's student's graduating initiative, and received the consolidated waiver. We use the Agency of Choice Model, Self Directive Serves.
The system has come a long way but it is still a struggle depending on where you live and who you deal with. The Home and Community Based Services Settings Final Rule supports inclusion, and challenges all of us to figure out ways to provide options for living and working in the community. We need to figure out how to encourage, fund and monitor more non-traditional services. It’s understood that there need to be checks and balances and controls to make sure services are addressing the individual’s needs. The system does not change overnight. But we must continue to challenge ourselves and create avenues to fund and support person and family-centered services in traditional and non-traditional ways with public and private dollars. We need to figure out how to engage the community at large. It is going to take all of us and diversity resources to provide choice and include people with disabilities in all aspects of our society.
Isaiah is now 23. I learned to trust that I know my child best and that supporting his abilities is the best gift and chance I could give him at living an "everyday life." I learned to expect and demand that those around Isaiah give him a chance. Isaiah does best when he's pursuing his passion, socializing, being with family and friends and involved with electronics and music. He has an infectious personality and everyone loves him. We have a large family with many children who enjoy being together and Isaiah is right there among them. He visits family and friends without having me tag along. He volunteers at the SPCA and goes to church. He knows what he wants and what he doesn't want and he knows how to communicate his ideas. He uses his Proloquo2Go communication software on his iPod when people can't understand him. He's growing into the fine young man that I knew he could be and he is happy.
I've also grown. I’ve taken several peer support trainings so I can help other families navigate the journey of caring for a family member with a disability. I am a graduate of Temple’s Institute on Disabilities C2P2 training, and also of PEAL. I’ve worked for Parent-to-Parent and was an advocate consultant for the ARC of Philadelphia and Visions for Equality, served on boards and continue every day to find more and different opportunities that will help me in this journey. Learning all I can has become my mission so I can give Isaiah the best chance at a good life.
Isaiah and I are striving and growing together and looking forward to the future.