Hi, I’m Bill Kress. I turned 41 in February and in the same month received a diagnosis of Phelan-McDermid Syndrome through genetic testing. For all these years I wondered why I didn’t speak well. My mom is helping me write this story.
I was born in Omaha, Nebraska on February 7, 1981. My brother, Warren, is 11 months older than I am. I reached the childhood benchmarks, but my speech wasn’t developing well. When I was two, my family moved to Chicago, Illinois and lived near Wrigley Field. Shortly after, we moved to the Chicago suburbs of Lake Bluff and Lake Forest. To help me communicate, my mom and speech therapist taught me signs and modified simple ones for my needs. We also had a ring with laminated cards so I could let them know my feelings. Today they are called emojis. My dad was the Chief of Indian Guides; he, my brother and I would march in the parade on 4th of July with our tribe. I attended special ed classes through the special ed district. I loved to ride my bike and would ride to the train station to meet my dad when he came home from work. While in 7th and 8th grades, I attended Cotillion, and was the mascot of the 8th grade basketball team. I made sure no one stole the snacks. I also attended special ed religious classes at our church, made my sacraments and was an altar boy. One of the fun things Warren and I did was to take the train to Chicago with our mom to see Cubs games and then meet our dad to go back home. Warren and I love baseball. Warren lives in Chicago and goes to Cubs games a lot.
In high school, I was integrated into a new special ed program at Lake Forest High School-home at last! My classes were also integrated between special ones and ones where I could be with other parts of the student body. The director of the music program came to our homeroom one day and asked if anyone wanted to be in the chorus. I raised my hand and sang in the chorus and attended music class. At the concerts, people would remark to my parents about how well I sang with a deep bass tone. They could hear me sing “Ora Pro Nobis” very clearly. People can understand me when I sing when listening to discs, especially Christmas music.
The JV baseball coach asked me to manage the dugout for the Freshman team. I am very organized and like things to be neat. Other team managers told my coach they wished they had someone like me. The students were very supportive of us. I attended prom with a girl from my special religious class—Katie, worked on school plays, and best of all, each year we had a basketball game with the special ed class at a neighboring high school. The basketball players at my school would practice with us and on the day of the game, which was at lunch time, the gym was so full people couldn’t get in. My mom always managed to because she isn’t tall and could weave her way through the crowd. My mom and I sang in the choir for the Christmas pageant—a project that involved the school and community. I also worked as an office boy for a firm in our town, doing shredding, delivering packages, and going to the post office.
I was part of the special recreation program and did speed skating in Special Olympics. We would go to meets in different places in Illinois and Wisconsin. We met lots of people and had fun. After the final meet for the year, my dad and mom took the whole team out for Pizza. I tried swimming but was unsuccessful because of breathing coordination.
During that year, my brother left for college and my dad took a job in Miami. Mom was getting her master’s degree so after school I would work at the Lake Forest Recreation Center. Someone from school would walk me there and my cousin, who worked at the Rec, would drive me home. I’d wait for my mom to get in and lock up the house. At the end of the school year, mom and I joined my dad in Miami, Florida. I finished high school at The Learning Experience School, where I met and fell in love with Adriana Cartes. We spent lots of time together and enjoyed going out for breakfast on Sunday. I learned to do the Salsa. Adriana has Padre Willi disorder. Her dad is from Paraguay and lives there and in Miami because of business. For a while Adriana moved to Paraguay and I went to that country to visit her several times. One time I visited for Christmas, and I brought a ring to ask her to marry me. When we couldn’t marry, I wanted to go away to school as my brother had. We found a school in Connecticut called Chapel Haven, and I would fly on my own back and forth, with people meeting me at both destinations so I didn’t get confused. Airline crews were also helpful. I still talk to Adriana and in fact, two Christmas holidays ago, she and her family came to Colorado to ski. When they returned to Denver for their flight back to Miami, my aunt took me to meet them. Adriana and I just hugged and hugged. I ask my mom to bring her flowers every week.
When I lived in Miami, I worked for my mom, where she is the Executive Director of a foundation. I did office tasks, like shredding, delivering packages in downtown Miami, and working on the foundation’s annual symposium. I also attended conferences with her when she had to go out of town. I checked people in, delivered the packets and listened to lectures.
After graduation from the Connecticut program, we understood that I couldn’t live on my own. My aunt in Colorado was helping me and asked me if I wanted to come to Denver to live with her. I live in Denver now in a host-home and my aunt is nearby. Florida is really too hot, and I like outdoor activities, like skiing. I worked part-time at a 24-Hour Fitness Gym near her house. One day, the regional manager came to the gym on a tour of the properties and asked to meet me. He told everyone in the gym that the company had changed its policy on hiring disabled people because I had worked out so well. When COVID hit, my position was eliminated and hasn’t been restored. I still use the gym with a trainer as I can’t use the weights on my own.
Since I was 16, I attended the ski program of the National Sports Center for the Disabled at Winter Park in Colorado. At first, I went with my dad and brother; now my dad and I go with my friend Kevan from Chicago and his dad. Last winter I was able to ski by myself. I felt like I was soaring.
I accomplished two life goals by doing them in a different way. I always wanted to drive a car and my ambition is to be a policeman. To satisfy driving, I drive my dad’s golf cart when he plays golf during his visits with me. I achieved the second one by working as a volunteer for the Cop Shop, a police program that helps the police in the community, such as registering bicycles, food and clothing drives and fundraising. I’ve had my picture in the newspaper and lunch with the Denver Chief of Police.
I do like to shop for my clothes, greeting cards and gifts. The best cards are the ones with music. Last Christmas, my aunt, my dad, and I went shopping; I bought my mom a pin that looks like a bow on a Christmas package and a pair of socks with dog designs. My dad and aunt watched as I made the selections and brought them to the counter to pay. They had a good laugh because I’m called “the man with a one-way wallet—money goes in and never comes out!”
When we told my brother of my diagnosis he said “You are going to change the world because science will learn from you. I am going to tell my friends you are a man of science.” All of us with PMS will change the world.
July 26, 2022