Lillian Update

t seems like yesterday when I last gave an update on Lillian as she was entering middle school. We had wanted to say thank you to Boyer Children’s Clinic for a wonderful start to Lillian’s education during our year in Seattle. She was just 23 months when we started in Denise Swanson’s class with her assistant, Flora, and Judy Dittmer as speech therapist. Lillian took to school like a fish to water— and she hasn’t stopped since then.

Middle school went by with a blur. It was tough at times for us, her parents, but Lillian transitioned from elementary school with the help of wonderful teachers. She learned to move around a much bigger school, passing through hallways from class to class, and learned to use a combination lock for a locker (though she forgot her combination over the winter holidays). She learned to eat lunch without an assigned seat and joined the after-school choir. She was awarded the very first Scarlett Neely Beacon of Light Award when she graduated 8th grade.

She breezed into an even larger high school starting in 9th grade. I cried when I dropped her off the first day, feeling certain that she would get lost in the enormous building, and then parked my car and snuck in to watch her make contact with her new case manager who took her to her first class. She’s done great. It turns out that Lillian is very self-motivated, and really able to organize and follow through with assignments with very little assistance from us. Who knew that our most organized child would be the one with DS? She knows how to ask for help from the people who can help her. She loves learning and seems to retain and incorporate her bits of knowledge into her everyday life in a way unlike her sisters. Math has always been the hardest subject, but she works really hard to master the topics. When she struggled, we appealed to our rule that ‘anything we would do for one of our other children, we will do for Lillian’ and found her wonderful tutors who took great interest in helping her succeed. She had always wanted to take Spanish since we had lived in Honduras when she was younger and her sister took the class. After two years of Lillian pleading her case, a plan was made to put her in a regular class but focusing mostly on conversation rather than grammar. Lillian was so thrilled. We knew it would be a stretch — and our school had never had a special needs student in a foreign language class — but she came home every day and studied on her own for several hours to keep up with the class. When the opportunity came up for her to use her study hall period to attend the same class lesson for a second time each day, she went every time so she could get a better grasp on the material. She took the same first year class for a second year — not batting an eye when we explained that it would help her get a better foundation — and she’s working just as hard this year as last. After two years of photography class (including darkroom work), our artistic girl joined the yearbook staff as a photographer. She has loved being a part of the staff and especially loves the late night sessions before deadlines.

Outside of school, she continues to write song lyrics and fill journals with her life story. We wonder whether she will someday be able to write her autobiography, giving parents and other people with DS the chance to hear the unique perspective of person with Trisomy 21. She wants to be able to write the music to match her lyrics, so she takes piano and ukulele lessons with teachers who fully support her goal.

Years ago, Boyer Children’s Clinic staff met with me to ask my goals for Lillian and what I wanted her to be able to do. When they explained that “everything” wasn’t specific enough, I said I wanted her to be able to read, swim, snow ski, and ride a bike. These were selfish hopes on my part, wanting to be able to do these things together as a family with our other kids— and she does all of them well now— and even got her scuba certification a year ago. She also plays games really well, which was a surprise after years of her being a ‘partner’ to one of the other family members. She injured her knee (‘kneecap, Mom’ as Lillian corrects me) and had a major surgical reconstruction requiring months of therapy which she faced with courage and determination. She’s now back to doing everything. She’s in a class to help her pass the driver’s permit test which is a goal of hers. That’s been hard. She’s taken the test quite a few times, but is closer now to passing than ever. She also spends two weeks every summer at Camp Barnabas, an incredible camp for persons of all ages with special needs. While Lillian spends one week as a camper and another as a Role Model, the rest of her family have loved serving at the camp in different capacities as well as attending the camp as sibling campers.

Lillian got a job at our local grocery store through a program meant for neurotypical kids, and did so well that she was hired as a regular employee. She just loves going to work, seeing her work family, and serving in our community. She likes it so much that she would probably do it for free. So many people know her in our small town, even if she doesn’t know them, and people always tell us how happy they are to see her at the store when they shop. She hopes to continue working there after college, though in a new capacity after she learns more about business and marketing.

When her older sister started thinking about college, Lillian’s thoughts turned in the same direction. Even before we thought it was an option, Lillian was doing internet research about colleges that had special needs programs. She made lists of her favorite programs, and let us know where she was planning to go. She was so excited that we actually went to our first college visit when she was still a sophomore. My husband and I cried as the information session started; we had no idea that this was possible, and our girl was leading the way. In the end, we made a list of several programs within six hours of our town and visited even more of them before narrowing down the list. She worked hard on her applications and was accepted to four programs and is still waiting to hear from a fifth. She has decided to attend the Missouri State University Bear Power Program, which we think is the perfect distance from us at 129 miles away. It’s a five semester program where she will live in a dorm and take a few classes each semester while learning other valuable life skills and participating in job internships. She has the option of taking the classes as an audit or for credit that will transfer if she turns out to be able to pursue an associate’s or bachelor’s degree. She is so excited for next year. She just got her meningitis B vaccine in preparation for dorm life.

One of her teachers pointed out that Lillian has ‘peaked’ at just the right time to head to college this fall, not too early and not too late. We are thankful for Boyer Children’s Clinic where Lillian began her school career in 2007, for the teachers who pushed and encouraged her even at 23 months, and for the wonderful program which gave us a taste of what special education could do. Keep up the great work. You are doing amazing.”

-Pauline, Lillian’s mom