I just turned 45 this year and up until now I have been the oldest known case with Phelan-McDermid Syndrome. When I was born in 1965, no one knew about deletions or Shank, or FISH tests. Although I was kind of floppy and cried a lot as an infant, my mom, a teacher and my dad, a doctor, fell hopelessly in love with me (and I have to admit that I am still pretty loveable!). It was around a year of age when I wasn’t sitting up or crawling that my parents took me to a pediatric neurosurgeon who told them that I was ‘hopelessly retarded’ and just to take me home and love me until I was of school age and then we could decide what institution I could go into. Wow!  I’m sure glad my folks didn’t give up on me even though it must have been discouraging for them. I didn’t walk until I was almost 3.

I love people and I can tell when they like me or are afraid of me. I especially like to be around little children like my 4 nieces. I would love to talk to them but it’s really hard for me so I tend to repeat words I can remember like “What time is it?” I actually had many more words when I was younger but they seemed to go away. Funny thing though, I understand a lot of what you say even if I can’t speak very well. I’m usually very friendly and I smile a lot but sometimes I can be very moody. I never cry. I must be kind of tough because I don’t seem to feel pain like other people do.

In my younger days, schools had no place for kids like me. My parents got together with others to form nursery co-ops but it wasn’t until I was 10 years old that a man named Judge Raines told the public school that they had to let me in. I loved riding the bus and being with other kids but school wasn’t much. When my parents would arrive unannounced, they usually found me sitting alone in the corner because they didn’t know what to do with me.

My parents found me a wonderful private school just for kids like me but the only thing was I had to live there in another state when I was 17. It was harder on my parents than it was for me because I really liked it there. When I was 25 I moved back to western Maryland to a wonderful place called Star Community where my dad works hard on something called a Board of Directors. I love it here because it is for grown ups with intellectual disability and I am now employed on various work crews doing stuff like growing plants, recycling, and maintenance. I actually get a paycheck which I take to the bank. My dad says I actually make more money than he does since he is retired. I live in a cottage with 3 of my friends and beside work we do things in the community like bowling, going out to eat,

movies, camping, trips to Ocean City and my favorite, therapeutic horseback riding. I wasn’t diagnosed as having PMS until I was 39 when a very observant doctor ordered a FISH test on me. I am very sure there are lots of older folks just like me that have never been diagnosed.

Every other summer, my parents take me to a meeting in Greenville S.C. with a whole lot of other folks like   me. I really love it because everybody is so friendly and interested in meeting me and I even get a prize for being the

“oldest”. I heard from my parents that a lot of very smart doctors are working on helping persons with my condition and I can tell that they are really excited for me. Maybe some day I might be able to learn to speak for myself and wouldn’t that be a miracle. Even if that doesn’t happen, my dad still says that I am a gift of God to our family and that my being born into this world has affected their life in so many good ways that it is hard even for him to say it adequately. That’s nice to know.

Bill Gould as told by his dad