Tag Archives: group homes

Then and Now

Scan_20160202When Kirstin was two years old, I was the chairman of Mother’s March for March of Dimes in Chandler, Arizona. The local newspaper sent a reporter to our home to interview me. She asked a lot of questions about raising a special needs child and about what I thought life would be like for us in the future. She took a nice picture of Kirstin and me, sitting on the swings in our backyard.

I had totally forgotten about the experience when, many years later, my cousin, Connie, came across her copy of the article and sent it to me. We were living in Chino Valley, Arizona, by that time, and Kirstin was in high school. Without looking at the article, I passed it to Kirstin, thinking she would enjoy reading it. Several days went by, and Kirstin never said a word about the article. Finally I asked her what she thought about it. After a few awkward moments, she muttered, “I was embarrassed.” Puzzled by her response, I took a look at the article myself. To my horror, I discovered that I had painted a pretty dreary future for our family. I had said that Kirstin would stay with us no matter what; we would never put her in an institution. Even though it might be embarrassing at times, we would keep her with us wherever we went.

The person I was picturing back then had no resemblance to the bright, charismatic charmer who is the adult Kirstin. Had I considered that someday Kirstin would be capable not only of reading the article but of fully understanding what she read, I would never have spoken those words.

Before Kirstin’s birth, I had practically no experience with special needs children. In high school, I had read Angels Unaware, written by Dale Evans, which is about her daughter, who had Down syndrome. She and Roy Rogers raised this daughter at home. It was written from the point of view of the child, who only lived for two years. It greatly moved me, but I never considered that someday I would be the parent of another angel. At the time Dale Evans had her child, parents were being encouraged to put their disabled children in institutions. In fact, in her book, she talks about the institutions being so full that children were placed in foster homes until they could be institutionalized. Doctors told parents it was in the best interest of the family. The special child would be a financial drain and take up so much of the parents’ time that their other children would suffer.

When Kirstin was diagnosed with Down syndrome, the doctor mentioned putting her in an institution as a possibility, but it was not one we ever considered. Nor was it something the doctor expected us to consider. Parents today aren’t given that option at all, because such institutions don’t exist. If families are unable to care for their special needs children, there are generous, loving families eager to adopt. At times, excellent foster families provide appropriate homes where these special children are able to thrive. Adults with special needs remain at home or in group homes as participating members of their communities. This is also the story of how that came about.

I chose to call our book This Little Light of Mine, thinking of the Sunday school song, “This little light of mine, I’m gonna let it shine … Hide it under a bushel? No! I’m gonna let it shine.”

Kirstin does shine in this world. Because she was able to attend school with her peers, students today don’t say, as I did, their experience with special needs children is limited to reading a book. These special students are their friends and classmates. Later in life, they are their customers, employees, and coworkers, and all our lives are better for it. While they do have special needs, they also have special gifts. There is plenty they can teach us in this cynical, dog-eat-dog world. From them we can learn tolerance and patience, which are virtues most of us are weak in. Yes, Kirstin does shine in the world, and she lights it up everywhere she goes.

From the Preface of This Little Light of Mine, A Woman with Down Syndrome Shines Brightly in the World, available at amazon

Living the life she chose

kirstin's new home“”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.