What My Clients With Down Syndrome Taught Me About Relationships
Almost six years ago, I was hired for a job I felt I knew nothing about. I was told I would be living, helping and assisting an adult couple with Down syndrome have the best quality of life.
I had never before been around anyone with Down syndrome, but I had years and years of experience as a Social Worker. Leaving the interview, I felt completely under-qualified and did as much research as I could. By the books, I found out specifics: people with Down syndrome have a life expectancy of 60 years; sometimes they have thyroid problems; because of slow reflexes, most do not drive cars or have children; some people with Down syndrome are dependent on their aged parents, making it challenging to figure out who will support and care for them after one or both parents pass away.
I have been working with this amazing (and newly engaged!) couple for almost six years now. For their privacy, I will not use their names, but I would like to share what articles, books, and blogs do not say about people with Down syndrome. At this point, I have probably been around at least 50 adults with Down syndrome. To get a better perception of people with Down syndrome as human beings, we need to dig deeper than “book” facts, unless we are talking about how my male client can recite and recall by heart every WWE match record, year, venue and statistic. We can talk about how my female client can tell me the exact date my great-aunt passed away last year because she remembered it was the same week as her uncle John’s wife’s birthday.
When I am working with my clients and if I am having a hard time with their television remote, the male client can immediately tell me six different ways it can be fixed and if that doesn’t work, he can locate the number for me to call the cable company. What articles don’t tell you is that even though many adults with Down syndrome choose not to have children, they still think about it, discuss it, and go to the OBGYN for birth control. “I wish I could have kids, but my fiancé doesn’t like loud noises so if we had a noisy baby, that probably wouldn’t be good. I love him, so instead I am going to volunteer or work at an elementary school.” After bringing my two toddlers over a few years ago, the male said, “They are cute, but they kind of move around a lot and they can be loud. I like them over, but only sometimes.” It was one of the truest statements anyone had ever told me.
One day, the female called me into her room, “I have to break up with him. This isn’t working out,” she whispered, after singing Karaoke to her favorite Justin Bieber song. I was in shock, not only did they seem in love, but they had also just renewed their lease on their apartment, and this was my job for goodness sakes! I went into crisis counselor mode, “Did something happen? Did he upset you? Are you OK?” I recalled the last time I saw them kiss, the last time he slapped her butt (hoping no one would see), and how he called her “cute,” yesterday! She explained she was doing Weight Watchers and he was sneaking snacks and chips! “I just can’t be with someone like that when I am dieting,” she said in absolute sincerity.
I was stumped. After all my years counseling, talking with people using meth, gang members, children in group homes… this seemed like the most complex. I wanted to tread lightly, after all. One thing that is certain, almost every single person I have met with Down syndrome is a “compassionate empath.” I quietly asked her if she had ever thought about different choices and different preferences. I explained that although she enjoyed taking Zumba classes with me at LA Fitness, he preferred using the gym at the apartments and doing cycling classes. I mentioned that she was doing Weight Watchers because she was directed by her doctor to lose weight, but her fiancé was actually physically fit and probably was just trying to be considerate of her diet plan, so he hoped she wouldn’t notice his occasional late night munchies. “Oh,” she said, “That’s OK then” she concluded. I sat next to her in confusion, waiting two minutes to see if she wanted to add anything else. She sat by smiling.
Instead, what flashed before my eyes was how I had recently picked a fight with my boyfriend threatening to end things, because he wanted to go out without me to see a few old friends so he could discuss memories from Hawaii. I knew all his friends, all guys (although that wouldn’t and shouldn’t have mattered either). He preferred to spend one night with friends only, friends he had lived with a decade before. I preferred to have him by myself. My clients taught me that compromise is always the best way to proceed forward.
Another time, the adult clients I work with were about to make dinner at their usual 6 o’ clock time and the adult male decided to take a shower instead. The adult female huffed and puffed, asked me where he was and why he was showering. After his shower, he returned to his room to change and take his sweet time, he even called his mother knowing his fiancé would be upset. I held my breathe when he entered the room. “I’m sorry I took a shower,” he said. Plain and simple. He recognized a problem and apologized. She stopped cooking dinner, turned to face him and said, “Honey, you know I love you but next time, you need to just say things to me and not call your mom and tell her your problem. I don’t care if you shower, just tell me so I can start cooking the dinner without you.” He seemed a bit embarrassed, and admit he truly did not want to cook that night and she laughed. Problem solved.
In the past half-decade I have worked with this couple with Down Syndrome, they have taught me more than I could even come close to teaching them. They have taught me about how they value their health, since they know that having Down syndrome makes them more likely to have more health problems. They have taught me about the value of being mature, sharing examples of how sometimes their friends are “drama,” but since they love them anyways, they decide to “take a break” and see them the following month instead. They have taught me about timeliness, telling me how it hurt their feelings that I showed up late once, which made them three minutes late to dinner reservations they had with friends. They have even taught me about how sometimes they prefer different vegetables than each other.
Most of all, they have taught me the value of listening without speaking in return. They have showed me that feelings are so sacred, that sometimes words cannot replace emotions or feelings. One time, my male client texted me from the other room, “Today would have been my grandfather’s birthday. I think I need a hug.” Of course, I immediately went to him and gave him a hug as he cried. “Did you know him well? Your Grandfather?” I asked. “No, but I would have. I was a baby when he died, but I know my mom misses him a lot, too. She always talks about her dad.” Pure empathy. Not only honoring family, but admiring the bond that was once shared between his mother and her dad. Someone he didn’t even know. I saw the love in his eyes. That is how we need to share compassion and empathy, even if we don’t truly understand someone’s mental health struggles, background, or disability.
Getty image by Archv