Isaiah arrived in the world 10 weeks premature and weighed 3 lbs. He took a one good cry then stopped breathing from respiratory distress and was rushed out of the room by the NICU team. I learned a few hours later that Isaiah had features of Down syndrome and testing would be done. Isaiah spent a long two months at Brigham and Women’s Hospital NICU. He did have Trisomy 21 but we also learned he had an intestinal disease called Hirschsprung’s.
Isaiah had 20 hospital admissions during this first year of life and 16 during his second year. We were always at Boston Children’s. He struggled with his GI issues. During those early years, we were involved in Early Intervention where he received OT and time with an educator. I also took him to private speech and PT since EI wouldn’t offer him those areas of therapy. Despite his medical issues, Isaiah was an alert, feisty little guy who loved books, animals, music and people. His language was delayed and he spoke words about age three but he had almost 300+ signs to help him communicate his needs.
He went to private schools during those years since Somerville Public School only offered him a sub separate classrooms. I didn’t see the need for him as a 3 yr old to go to a “special needs” preschool. I wanted him learning next to other children and always have that bar raised.
Isaiah has come along way in the past 19 years. He is now a post graduate of Somerville High School. At Somerville HS, he took a mix of special education and regular education classes. He took two vocational trades of Health Care Careers and Culinary Arts. He managed their football team for three years. He did shot put and ran on the high school track team for two years. He won the Greater Boston League’s Manager of the Year Award for football during his Junior Year. He won the Frank Kelly Adversity Award from the State Track Coaches Association his senior year. He attended his prom and walked the stage at graduation with his classmates. He had an amazing four years of high school!
Isaiah is now post grad. He takes a math class at Somerville High and he works in Culinary still three days a week. He is also participating in ICE and takes one class per semester at Bunker Hill Community College. He works as a bagger at a local Stop and Shop working 20-25 hours a week. He is involved in Special Olympics with basketball and track.
Isaiah has been a strong self advocate since a young age. I used to speak at Bentley College twice a year about DS. He would come as a young child but soon he began participating in the talks and during high school he took over the talks. Starting last year, Isaiah attended EVERY fourth grade classroom in the Brookline School system and talked to them about his life with DS as part of their awareness program. Our home has been open to visitors who want to learn more as well. We have hosted Harvard Medical and Harvard Dental students since he was 10. We have been part of Operation House Call since he was young. He was asked to join as a co-teacher and loves that! He now goes to Tufts Medical School and BU Medical School and talks to future doctors. We host a Brandeis Genetics Counseling student each spring for about four visits.
I would never have believed any of this was possible back when we were in the NICU. It blows my mind how far my little guy has come and the wonderful young man he has turned into. I am excited for his future, which we hope includes a living situation with a roommate, employment that he loves, many great friends who keep his social life full and continued education and teaching of others.