Peggy always jests about being the senior citizens of the 21 Club and can hardly believe that Carrie will  celebrate her 39th birthday.  But if you think about it, the following profile confirms this!

We were introduced by Tim’s college roommate and one of my friends who were dating at the time.  We got engaged within 2 months and were married thirteen months later fifty-one years ago!  Our first child was born a year later while Tim was studying Industrial Design at the Rhode Island School of Design. His final thesis involved designing a group of play objects from missile packaging reconfigured to enhance therapeutic positioning for children with disabilities. His experiences developing this project plus my profession as a pediatric Occupational Therapist were foundational for when Carrie was born eleven years later in 1976.

Our initial reaction at Carrie’s birth when we learned that she was a

“Mongoloid” (the “Down syndrome” diagnosis not common then) was

honestly one of shock, denial, and grief so deep that as Tim says “it felt

like a funeral”, even though our newborn was alive and seemed

reasonably normal to us.  In retrospect, many symptoms were there. 

What sustained us was our heartfelt love for Carrie, our fourth child.

We loved her from the moment we held her with NO consideration for

placing her in an institution as was suggested by more than one

professional. We determined early on to give her every opportunity to

reach her God-given potential (her individual blueprint) just as we were

with our other three children.

Carrie’s siblings have been her encouragers, stimulators, and cheer

leaders since day one and have chosen careers to help others; a music

teacher, a Physical Therapist, and a CEO of our family business that

manufactures positioning equipment (the “Special Tomato” line named after Carrie’s story) for those with disabilities. The community and school support in our small village has always been extra-ordinary and has continued in Carrie’s transition to her present home in Rome. Her loving personality is a magnet!

We have always been thankful that she was born in 1976 after The Education for All Handicapped Children Act (sometimes referred to as Public Law (PL) 94-142) was passed by Congress.  Public schools were required to evaluate handicapped children and create an educational plan with parent input that would emulate as closely as possible the educational experience of non-disabled students.  Early Intervention began in our county when she was six weeks old!  The Special Educator, a Speech Therapist, Physical Therapist and Occupational Therapist provided us weekly with the resources we needed along with therapies for Carrie’s developmental needs.  Internet research and resources about Down syndrome were not available then!  At three years old, she transitioned to a typical preschool with a “Carrie tailored” developmental curriculum provided by the BOCES special education team.  She entered kindergarten when she was six years old.

Her public school years entailed general education classes (mainstreaming, today known as inclusion) and special education classes. She always needed extended time, modified lessons, repetition, and extra support. This balanced approach was very progressive in those days! She graduated at age 21 with an I.E.P. diploma.   Needless to say, she exceeded our expectations especially when she graduated from Herkimer Community College with a Teacher’s Assistance certificate.  It took her four and a half years to cover this one year program but she did it! She was also thrilled last Fall to be asked to join the Herkimer College Alumni Hall of Honor alongside former students who have achieved noted success in their careers.

We never envisioned that she would one day live independently almost an hour away from us as part of a Self-Direction program where she receives 45 hours/week of staff support. She loves her cozy apartment and life in the community of Rome.  Technological advances also help to make this possible, the cell phone being our 24/7 lifeline.

Her many roles include being a  daughter, sister, volunteer, teacher’s assistant for toddlers with special needs, a first degree black belt holder,  fitness enthusiast, teacher (teaches Tai Chi  to the elderly in  an extended care facility), friend, conversant in sign language, student,  pioneer, dancer,  along with being a motivational speaker.  Her passion is to spread awareness that all people with Down syndrome and other disabilities should be given every opportunity to meet their individual potential and success.  As her quote states, “I have taken the “dis” from disability and made it my ability to advocate for those of us with special needs”, especially as a board member of the 21 Club!