1976 was when “it” all began. That is, my life goal of including everyone in educational opportunities. That year public law 766 passed in Massachusetts, where I lived with my parents, 5 siblings, and very extended family. I was a junior in high school, a Cub Scout den leader, a Sunday school teacher, and college applicant. The following year I was accepted into the first ever college major, teacher of young children with special needs! That year one of my relatives added twins to the family tree…very special twins. Todd lived 13 years with cerebral palsy, a hole in his heart (surgeries), g-tube, oxygen etc. Ian was only deaf and blind. Although we have lost touch, they played a vital role in motivating my life. When I had to student teach, Ian was in the preschool class! Todd had been adopted as a foster child due to his intense needs. My aunt and his foster mother were so close. They taught me how fostering could and should work for the child in care! Coincidentally bob e was born in 1977.
I graduated and began teaching in a home based child care. When it closed I found employment in a residential school- Crotched Mountain Rehabilitation Center. There was an eight year old in my first class named Robert English. I was told he had just arrived last month. He had no language, other than screaming, he bolted a lot, he hit, threw things, would bite if he could get close to you, never slept, and was in constant motion. WOW nothing prepared me for this! The school was designed to work in teams so I learned from behavioral psychologists, speech/language pathologists, occupational and physical therapists, social workers, audiologists, medical professionals and other teachers as well as educational and residential staff. I was told, as far as curriculum goes, it didn’t matter what we taught because it was thought that Bob had trisomy 18 and wouldn’t survive to graduate anyway. That’s not my philosophy!
I planned field trips and summer camp excursions for my class. I took them one by one on weekends to Cub Scout camp. I took them to public school classes. I learned about sensory integration. By age 10 Bob could sit still, eat at the table and help with classroom tasks. He started going away for weekends with a foster family. Unfortunately he came back with unexplained bruises. That placement was terminated. Without enough foster homes to go around Bob was ok at residential school. But I saw more potential than that SO I applied for my foster care license. Bob was permanently placed with me in November 1988. In 1991 just after his spinal fusion surgery for scoliosis he started at Conval High School in our home town.
In 1992 I was searching the internet and found SOFT, an organization for trisomy 13, 18 and related disorders. They were having a conference in Baltimore on the 4th of July. After scrambling for all the permissions needed to leave the state with a foster child we got to the conference. I cried for 3 days having finally found a hundred friends who understood Bob! But why was he still alive? Trisomy’s do not have a great survival rate. Could he be mosaic? Soft offered free genetic testing as part of their conference clinic. More permissions and we got his blood drawn (despite his protests-he still hasn’t forgiven Dr. Carey!). Then we waited…
In September Bob’s results from Johns Hopkins came back via Dr. Carey in Utah – Bob has tetrasomy 18p. WHAT? Dr. Carey had never heard of it and couldn’t locate anything for us. So we stayed with SOFT as a related disorder- alone.
I do not remember when we found John McGing’s website but I was overjoyed! Another tetra!
Couldn’t wait for our first registry conference in Colorado. Passing pictures of our 8 kids around. I kept being handed Sean’s as Bob’s. The boys really hit it off. I went to both Registry and SOFT conferences as often as I could. I was on SOFT’s board of directors and a NH chapter chair when the Registry held the World Chromosome Conference in San Antonio. I served SOFT’s board for 7 years, and retired from chapter chair this year so that I can serve the Registry.
Bob has continued to be my partner in everything! He graduated from Conval in 1998 with a certificate of attendance. He became an Eagle Scout with a gold palm (10 badges beyond eagle required with an additional six months service to scouting before his 18th birthday). He and I are still active in scouting. In 2013 we served on national staff for the first BSA jamboree held at the summit in West Virginia.
I also have a working life independent of Bob. I worked for 10 years at Crotched Mountain Residential School, then 8 years at a local, large child care center, and now I am working for Rise for Baby and Family, a non-profit organization providing early supports and services in southwestern NH. I am their 1:1 autism supports educator.
Together we are active in local politics and legislative action having completed the NH leadership program in 2010. Bob is an active voter and leader in citizenship activities. He loves to hang out at our local recycling center just before elections educating the public about upcoming bills and where our leaders stand on issues affecting our community. We are active in ABLE NH, a group promoting community action on issues that affect our communities both pro and con.
This past year, Bob watched the ice bucket challenge going viral as a fundraiser and he decided he would promote a kickball game as a fundraiser for the Chromosome 18 Registry by asking his friends to make donations to the Registry instead of to his birthday. He plans to do this every year.
I was also thinking of a way to serve the registry when a vacancy appeared in the syndrome coordinator group. I look forward to serving you and the registry. We have a great group of individuals in our syndrome group and I trust we will continue to help each other do even greater things!
Marie and bob e
(Bob types using one finger and can’t remember to hit the capital button so he types his name in lower case letters. A staff member at his day program told him he had to be Robert not bobby because he was an adult. Bob thought about this and decided he was bob e as in bob English as a way around the staff member and although he now knows Bobby is a fine adult name he has decided he likes bob e.)
