“Assume That I Can, So Maybe I Will,” released in 2024, is one of my favorite World Down Syndrome Day video shorts.
Down syndrome occurs when a person has three copies of the 21st chromosome, which is why World Down Syndrome Day is on 3/21. Every March 21, events that celebrate people with Down syndrome (DS) take place worldwide.
Because my daughter, Lyra, a 13-year-old sixth grader, has DS, she has an Individualized Education Plan (IEP) at her public school. IEPs have specific goals for each student and must be updated every year. This year, Lyra’s IEP team, comprised of teachers, intervention specialists, administrators, her father and I, all agreed it was time to add to her goals the skills she’ll one day need for employment and independent living.
In other words, we need to check our assumptions and see what Lyra can do.
When she was an infant, we had to figure out how to best support our child with two unexpected diagnoses (she was born with cataracts as well as DS) we knew little about. We met with medical professionals, read books, visited websites and joined DS organizations. One of these, Down Syndrome Diagnosis Network, organizes closed Facebook groups for mothers whose children with DS are the same age. Throughout Lyra’s first five years, this cohort group was an invaluable resource. The other moms and I shared tips on speech development, proper walking techniques, fine motor skill development and, eventually, potty training.
Then came early schooling. Mothers shared successes and, again, tips on what helped our kids with classroom dynamics as well as early math and reading skills. (Fun fact: strong short-term memory often accompanies a DS diagnosis and many children with DS easily learn to read.) We also supported one another when some schools did not meet the needs of our children.
Then, around the time Lyra began the first grade, life plateaued. We hadn’t figured out everything, but our early concerns had been addressed. Lyra walked, talked and actively participated in school and extracurricular activities. It was like we’d graduated from a multi-year crash course in all things DS and, for about five years, conversations with other DS parents were mostly social.
Then, a little over a year ago, puberty hit and once again we are in new territory. When Lyra was little, we made many medical and educational decisions without her input, as we did all our children when they were very young. But we now find ourselves deciding things for our teen-aged daughter that she, unlike her neuro-typical peers, cannot objectively discuss with us. These guardianship-like situations come, for me at least, with a pique of grief. Undoubtedly, as our daughter becomes an adult many such decisions will need to be made.
Although she’s still in middle school, Lyra will be 18 in just over four years. This fact (and all things puberty) gave rise to a smaller, yet robust, version of the panic I’d felt in Lyra’s first years, which grew until I received an email from a regular reader of this column. John Rasinski has a 25-year-old son, John Paul, who has DS and works four days a week as a stable assistant at Pegasus Farm in Hartville. Pegasus is widely known for its equine therapy programs for people of all ages with disabilities, but it was not until Rasinski wrote to me that I learned it also has a work program for adults with developmental disabilities.
On an afternoon in late October, Lyra, her brother Leif and I met Rasinski and John Paul at Pegasus. In one of the cleanest stables I’ve ever seen, we watched clients mount and ride several of the farm’s horses into an arena. I imagined commuting his son to work and back took a tremendous toll on Rasinski’s life as the farm is 40 minutes from Akron, where the two live and Rasinski works.
“Oh, no, I don’t drive him. He has transportation,” he told me. When I asked the cost, I learned it is covered by a Medicaid waiver, something John Paul became eligible for at age 18. This led to a flurry of questions, and we agreed to meet at a later date for coffee, where Rasinski outlined for me, first in conversation and then in a follow-up email, various Summit County, state and federal services and programs for adults with with developmental disabilities.
My relief at meeting someone further down the road our family is about to travel, and who is willing to share his knowledge and experience, is indescribable. As we discover what Lyra can do in the years ahead including at high school, work, independent living and her social life, I hope to give to other families what Rasinski has given to ours by sharing what we learn.
This was first published in the Akron Beacon Journal on Sunday, March 29, 2026.



























































































