Lisa's Personal Story

From the PDS Executive Director ~ Spring 2006

Over the years people have asked me how I got interested in the field of serving adults with developmental disabilities, and my answer is always the same: It was because of my great aunt Lena. She had Down Syndrome, and I absolutely adored her. I first began visiting her at Sonoma State Hospital when I was just three years old. My grandpa and I would arrive at her "cottage", and she was always there waiting for us in the lobby. As soon as she saw me approaching on the walkway, she would bound outside and overwhelm me with hugs and kisses. She called me her "Muma Lisa", which was her take on Mona Lisa. I can vividly remember how good it felt to be with her and how much fun my grandpa and I would have taking her to Mary's Pizza Shack for the works—gnocchi, pizza, AND salad. I always wished that I could do more with Lena. I thought that once I started driving, I might be able to take her to the movies or to my house to stay overnight for instance. Sadly, she became ill and died when I was a teenager.

As a result of my relationship with my aunt, I knew from a very early age that I wanted to work with people with disabilities. I knew that this was what I wanted not just because I wanted to help them live better lives, but because I wanted to relive all those wonderful times that I had with Lena.

Except for the institution where I went to visit Lena, I rarely ever saw people with Down Syndrome while I was growing up. I knew they were out there, though, and soon began to seek out people like my aunt by doing volunteer work at "special schools" during the summer. People with disabilities seemed so hidden back then. It was not until my junior year in high school that I discovered there was a class for kids with developmental disabilities on our campus. One day a special education teacher visited my homeroom looking for teacher's aides. We could earn school credit by helping out in their classroom, which had been located in a portable building out near the football field. Needless to say, I joined right up. I loved being a classroom aide with those kids.

At this point, community-based instruction was just becoming popular, and it was so exciting for me to take the students off campus to the store to buy an ice cream or to involve them in a school rally. I even babysat one developmentally disabled girl named Dana, who was close to my age, but extremely ill. At first my mom was worried about me getting too attached to people like Dana, and she was concerned that the people I befriended might depend on me too much. Eventually my family and friends learned that I was committed to the integration of people with developmental disabilities into my life and into our community, and they embraced my "special" friends with open arms.

When I started college in San Francisco, I told my mom I was bringing home a parentless friend, Joe A. Joe also grew up at Sonoma State Hospital, and he had no contact with his natural family. He was in his 40s at the time, and sadly, had never participated in anything like a family holiday celebration. Joe is the same age as my dad, and it must have been a little strange for my parents when Joe "adopted" our family as his own and started calling my father "Daddy!” Joe was also invited into my college life, hanging out in my dorm room and getting rides home with one of the soccer players who lived down the hall. When I was a paraprofessional at Washington High School, my roommates quickly got used to me bringing home students to learn how to cook in our apartment. They were great sports when I held a reception at my place before their prom. My roommate even cooperated with me once by clearing out our furniture so we could have a dance, which was kind of a mixer for the special education kids and "regular" students.

Now that I have a son of my own, I am determined to make sure that he grows up with exposure to all different types of people, including those who have developmental disabilities. Yet, I don't want him to spend time with my clients just for the sake of educating him or teaching him tolerance, but so that he can share the appreciation I have for all the wonderful people that have enriched my life.

One client in particular, Kasie S., has become one of my son‘s best friends. Kasie has been spending every Friday with us since Andre was born. Now that he is two and talking, he looks forward to seeing Kasie each week and begs me to take him to Petco with us in order to pick up her paycheck. He laughs at and repeats her jokes and funny sayings, stuff like "Help me Wanda!" (Instead of "Help Me Rhonda"). Once I asked Kasie where she ate dinner with her mom, and she replied, "Red Lobster!" I asked her what she ate, and she said, "Red lobster!" And what her mom ate? "Red Lobster!" And what they had for dessert? "Red Lobster!" Andre thought that was hysterical, and he of course now runs around our house shouting "Red Lobster!" and cracking himself up. He cries when Kasie goes home each afternoon and loves to look at the pictures on the fridge of the three of us in the photo booth at the zoo. It means so much to see the true affection between them. Once he said, "Kasie is not a mama, Kasie is Andre's friend." Kasie was just brimming with pride when she heard that.

Recently I took Andre to a Special Olympics swim meet. He was so thrilled to see PDS clients Donna C. and Lisa T. (he thinks it's really funny that she and I have the same first name), and he enjoyed standing at the end of Robin S.'s lane and cheering her on at the top of his lungs. We also sat with Betsy L for a while. I have a soft spot for Betsy since she looks and acts a lot like my great aunt Lena did. Betsy, like Lena, can be abrasive at times because she gets frustrated when people don't understand her speech. Yet Betsy does not intimidate Andre in the least. He was so excited to see her and was happy to share his lunch with her, which is quite something, since being a typical two year old, sharing is usually a dreaded task.

All parents dream of creating an ideal world for their children in which their kids will experience all the best things about their own childhood, as well as hopefully improving on the not-so-positive experiences. I too dream of this kind of ideal world, not just for my son Andre but for my clients, whom I also love. I know that many of you reading this newsletter share in that dream, and I thank you so much for everything you do to make it possible for people with and without disabilities to live side-by-side, each benefiting from the other's strengths and gifts.

I hope that when Andre goes to school there will be kids with disabilities in his classes. I hope that he and the other students will be so accustomed to living in a community in which people with disabilities are present, seen, and paid attention to, that they will not think twice about playing with children who happen to be disabled. In my dream, they will naturally invite them to their birthday parties, share their lunch, or advocate for them if necessary. There are still times when I feel discouraged, but every Friday, after spending a day with Kasie and Andre, I feel blessed, reassured, and inspired. I only wish Lena were here to join us.