“”Looking back on our lives, it seems we have come so far. Those limited expectations I had when Kirstin was born are long gone. Now I see a world not with limitations but only with possibilities and challenges for the future.”
“Throughout most of her life, Kirstin has walked a thin line between the world of those with developmental challenges and the world the rest of us live in. Over the years, that line has become blurred, and more often, Kirstin has chosen our world over the simpler, safer world that could be hers.”
From This Little Light of Mine, A woman with Down syndrome shines brightly in the world.
“If I knew then what I know now, would I do things differently?” I’m sure we have all asked ourselves that question. Considering Kirstin’s childhood, I see that we raised her in a certain way. As much as possible, we encouraged her to participate with her non-disabled peers. She went to ballet classes and gymnastics. She was in Camp Fire Boys and Girls. She sold candy door to door and went to Camp Fire camp. At the same time, she participated in Special Olympics and special education classes. I guess you could say that we showed her both worlds and let her chose for herself.
Now that Kirstin is an adult, she sees choosing as her God-given right. She does listen to advice, but ultimately, she is the one who choses where her life will go. That’s why Kirstin works at Costco and lives in her own apartment. It is also why I’m sure that in her near future, she will get married. While Kirstin is making her own choices, she still needs our help. And so, we are there for her, but sometimes it’s not easy.
I see many of Kirstin’s friends who have chosen to live in group homes. They have an equally fulfilling life. They spend more of their time with their peers and less time with their families. In that way, they are more like others their age. They work at jobs they enjoy, volunteer in the community and have a variety of social experiences.
I sometimes consider that my life would be less complicated if Kirstin had made the other choice. What if we had steered her in that direction instead of helping her become more independent? Without getting into the nature vs. nurture discussion, I can’t help but think it wouldn’t have made any difference. Kirstin has always had her own ideas about things. That’s true for most of the adults I know with Down syndrome. They have made different choices, but the point is, they have been allowed to make choices.
When Kirstin was born, children with Down syndrome were being placed in institutions. Sadly, they were not allowed to chose for themselves. Today, there are so many opportunities for people with developmental challenges, and I see those opportunities broaden every day. But with so many opportunities, parents with small children who have developmental disabilities have an awesome job to do preparing their children for their future. Theirs is a challenging and sometimes frustrating road, but one that is blessed with lots of encouraging experiences.
I am a fan of Doctor Phil. I watch his show as often as I can. I have seen many dysfunctional families verbally duking it out on public television. Their problems vary from teens who are addicted to drugs or alcohol or sex, to out-of-control children who have been overindulged. I am yet to see a family on his show who are there because they have a child with Down syndrome. I’m sure most of those families have pleasant, enjoyable lives.
To answer my question, would I have done things differently, I’m pretty sure I would not. Watching Kirstin mature and take on adult responsibilities has been one of my great joys in life.