Lillian

ur amazing Lillian was diagnosed with Down Syndrome at birth. We lived in Hershey, Pennsylvania where we were quickly enveloped by a loving Down Syndrome community and cared for by wonderful medical colleagues who hooked us up with Early Intervention therapies. Though her diagnosis was a surprise to us at her delivery, her transition to receiving the care and therapies she needed was seamless. Lillian started weekly physical therapy and monthly play therapy in our home at 11 weeks of age. At one year of age, she also started monthly speech therapy at our home as well. As physician parents, we were very pleased and soon very comfortable with the system.

When Lillian was 20 months old, we moved to Seattle for 12 months for her father to do a hand surgery fellowship at UW. The system in Washington state was so different from Pennsylvania that my head was spinning trying to understand the options from afar and then from near. Because of our limited experiences, we were skeptical of ‘group-setting therapy-school’ being able to advance Lillian’s development as well as the in-home individualized therapies had done. We were totally thrilled to be so wrong.

Lillian attended a therapy preschool class with head teacher Denise Swanson and her assistant Flora two afternoons a week for that next school year. I was totally enthralled with Lillian’s first class where she learned how to follow a schedule, take turns, wash hands and brush teeth, and ‘sing’ in sign language. Initially I stayed because I thought Lillian would need me to be with her, but later, even when she did fine without me, I still kept coming to class on many days because of what I gained from simply being in the room with such amazing staff. Judy Dittmer was her speech therapist.

Lillian at preschool with her teacher Denise Swanson and Speech-Language Pathologist Judy Dittmer (now retired).

Though I was a pediatrician myself, I was in new territory with my own special needs child. I felt like I had no idea what to expect, what to hope, and what to do from day to day. Each time that we came to Boyer, I learned how to play with Lillian, how to have high expectations, and how to rejoice with each milestone met— how to hope for the future. I learned to ask Lillian to clean up her toys after playtime, put away her dishes after snack time, push her tiny chair to a spot in the circle, choose a song for circle time— things I didn’t know she could do. Denise showed me how much Lillian really understood— and how I was underestimating her. Denise gave me hope— she told me every week how extraordinary Lillian was, something I needed to hear and believe. I really didn’t know how to treat Lillian, but I learned at Boyer that I need to treat her like my other kids. The positivity and joy and high energy at Boyer was infectious— we loved coming every single time. Lillian could not wait to walk into her class every single time. Even after 11 years, she still can sign the ‘Time to Go’ song.

Partway through the year, Boyer also offered a parent support group during Lillian’s class time. After months of being with the other kids and their parents in the classroom, it was a wonderful to  get to meet as parents without our kids. Everyone shared their different stories and concerns for the near and far future— and I realized that I was not alone in my journey. It was such a neat part of our year at Boyer.

We returned to Pennsylvania at the end of the year. Sad to leave Boyer and our new champions— but energized and prepared for the next steps of Lillian’s education and development. After Boyer, she entered a montessori with neuro-typical children and did great because she knew how to ‘go to school.’

Today she is a thriving 13 year old teenager, the only child with Down Syndrome that her school has had in years— and she continues to build on the valuable lessons first learned at Boyer.”

-Pauline (Lillian’s mom)

Lillian’s first day of middle school, age 13.