Posted September 7, 2021
Elisabeth was the third child born of triplets, and was born at 28 weeks gestation on June 1, 2003. She was in the Neonatal Intensive Care Unit for about 4 months and had a variety of problems including reflux, failure to thrive, and a ventricular septum defect. She had open-heart surgery at 5 months of age to correct her heart problem (at about the same time her triplet sister Anna died).
Elisabeth first had a genetic panel run when she was almost 3 years old. The 22q11.2 deletion that was detected suddenly explained many diverse symptoms which she showed, including hypotonia, slow cognitive and speech development.
Elisabeth was enrolled in speech therapy and occupational therapy from the time she was a baby through the 12th grade. She attended a small town public school with adjoining elementary, middle, and high schools where she went all the way from pre-kindergarten to graduation. All the teachers knew her and she was treated kindly by most students. She was in mainstream classes most of her education but always had several hours per week with her special education teachers, with whom she developed a special bond.
At age 7-8 Elisabeth had a tonsillectomy and then palate flap surgery, which corrected hypernasality in her speech and was a tremendous improvement. Now after many years her speech is fairly normal. She still has some low muscle tone and lacks strength and fine motor coordination. Her handwriting is difficult to read. She has a very low IQ and will need to live with some personal assistance throughout her life.
Elisabeth rode horses from age 8 until about 16, when weight gain made it more difficult for her to mount. She was an active member of United States Pony Clubs and competed in many horse shows and rallies, and also competed twice in the Special Olympics state equestrian games.
Elisabeth participated in Special Olympics swimming for one year (about age 12) and brought home a gold medal from the state meet.
In high school Elisabeth became very active for years in marching band, playing percussion, and loved to represent her school marching in parades. She was active in United Sound in her school and was invited to march in the 2021 Tournament of Roses Parade, sadly canceled due to Covid-19.
Elisabeth faced the same challenges that people all over the world did during the global pandemic and shared their frustrations with cancellations and virtual learning. She adapted over time and in her senior year attended a special job-training program virtually.
As a special treat for missing the Rose Parade, I mom took her to her favorite place, Walt Disney World, in November 2020. She had 4 great days visiting the parks. Unfortunately on the 5th day she stepped wrong off a curb at the swimming pool and badly broke her leg! This led to a ride in an ambulance and surgery in Orlando. Then coming home in a wheelchair she was denied boarding an airplane because she was crying in pain and unable to follow directions. We did however get a flight home the next day. Then she was re-hospitalized for digestive problems (surgical ileus) for several more weeks. Finally after a few months with a wheelchair and walker she was able to return to walking normally.
She has difficulty controlling her moods – every passing mood is right on the surface and gets expressed strongly, all the time. She works on maintaining calm. Elisabeth feels her best when she has regular balanced meals with lots of fiber. She takes added fiber supplements which “keep her system moving”. Although she truly loves fast food hamburgers and fries, she now tries to eat several fruits and vegetables every day.
Elisabeth is very proud of completing high school (in our state special education students are awarded a “Certificate of Completion”) but it hasn’t quite sunk in yet what that means, or what’s next for her.
Don’t compare yourself with others – you are on your own path. Do your chores! They help you learn how to run a home.
Avoid fear, avoid apologizing, and avoid over-explaining.
If homework helps your child, help them with it. If it doesn’t help, drop it completely. Call on all the help you need and build supports. Insist on inclusion. Your child may be inspiring, but never let them be used for that purpose.
Elisabeth will continue her education after high school with a special 3-year transition and job-training program between the local high school and community college. She will continue to live on a small farm with her mother. Her triplet sister Catherine is taking a gap year and will go away to attend university in fall, 2022.
It’s not the Mom’s job to do everything, except when it is. Keep time and space for yourself.