Never hidden: Growing up with Down syndrome

It was July 1966. My family, which, at the time, consisted of seven brothers, five sisters, mom and dad, had just moved into a big house in small-town Indiana. I was just five years old and would be starting the first grade come September. We had the biggest house and yard on the whole block, so all the neighborhood kids came to the Buffington house to play. Life was good, but it was about to get even better—my mom was going to have another baby.

The special day arrived, and we were all told that we had a new baby sister—number fourteen had been born. On the day Colleen was coming home, we all cleaned up, dressed up and lined up to greet mom, dad and baby Colleen.

I was only three and a half when my younger sister Shawn Mary was born, and even though I had almost no memory of her arrival, I could feel this time was different. Dad carried Colleen into our house, and she was the most beautiful, perfect baby that I had ever seen. But, why was Mom crying? That night, per our usual routine, we all gathered in one room for bedtime prayers. Mom cried the whole time. I started to notice that almost all the prayers were for my new baby sister. But, why? She was so perfect.

A few days later, my parents drove with Colleen to Fort Wayne, a much bigger city, to see a pediatrician since our hometown did not have one. That was where my parents received her diagnosis: Down syndrome. At this point in time, there was little information and a large stigma of embarrassment surrounding Down syndrome but none of us cared—especially not my father.

Growing up Buffington

As kids, Colleen and I always shared a bedroom with our two other sisters, Erin and Shawn Mary. Everybody called us “the four little girls.” All of us girls were involved in sports, dance and cheerleading—and Colleen was right alongside, doing all of it with us. The only difference was that it took her a little longer when trying to learn a new skill, whether it be crawling, talking, riding a bike or learning a new dance in dance class.

Our dad had unbelievable patience when it came to teaching Colleen—he would never give up until she learned. He quickly became Colleen’s main advocate, always going above and beyond to advance her, doing his best to find schools and programs that offered her more in regards to special education–and the rest of us followed suit. We were all taught to be persistent. In fact, there was a phrase always used in our family: “Can’t never did anything!”

The first thirteen of us attended the same Catholic grade school. When it was time for Colleen to go to school, there were no special education programs offered in our Catholic school or the nearby public school. Dad sought out a special education program at a neighboring public school and proceeded to enroll Colleen. It was never an option for him to accept that Colleen would have no formal education.

Colleen’s report cards were not the best, but the socialization aspect was everything to her. In 1986, Colleen finished her formal education. There was no high school diploma, but that was not important. What was important was the graduation party, which of course included a cap, gown, school completion certificate and best of all, a trophy.

A downward spiral

When Colleen was just 18, our dad passed away after a short bout of cancer. Among many things, he was the fixer, the problem solver, the disciplinarian, the advisor. But most importantly, he was Colleen’s advocate. His death shook all of us—especially Colleen.

That left just Mom and Colleen in that big house. Many of us had relocated miles away, and none of us realized how much our dad’s death had affected Colleen. As the years progressed, Colleen and Mom slowly started living more apart than together. Mom had her own physical and mental health issues developing and, in retrospect, I could see that during this time, Colleen had started to isolate herself more and more.

As Colleen entered her thirties, Mom was quickly approaching the end of her seventies, and both of their mental statuses were changing. Colleen was retreating into a world within her mind, driven by obsessions with two TV series – ‘Dallas’ and ‘Eight is Enough.’ Mom was becoming increasingly forgetful and angry, which we later realized was due to the onset of dementia.

Then one fateful evening, Mom fell and fractured her skull. After a frightening period of time in the intensive care unit, all of us kids turned our attention to helping her recover. Along with the physical recovery was the realization that our mother’s early signs of dementia had accelerated with the brain trauma.

Mom’s crisis was soon followed by Colleen’s crisis. Colleen started leaving the house day and night, wandering the surrounding areas within our hometown completely disoriented. In early 2001, I received a troubling phone call from my brother, Pete. He lived next door to Mom and Colleen and had been dealing with the dangerous situation of Colleen’s wandering. The second I hung up the phone, the sister in me felt extremely guilty, the daughter in me became incredibly sad, but the nurse in me knew it was time to step in. I was fully aware of what this was—Colleen was experiencing a complete and total psychotic breakdown. She needed help, and I knew that I was the sibling to provide that help. Thankfully, my husband and I had already discussed taking care of Colleen if the need ever arose. The time had arrived.

New beginnings

One day later, my husband, my two children and I welcomed Colleen to our home. It did not take long for me to realize that she was completely out of touch with reality. Colleen spent her time talking to herself, hiding under tables, attempting to run away from fictional television show characters and making no attempt to be part of the real world around her. Colleen needed professional help beyond what my nursing skills could handle.

As I began to create a plan for Colleen’s care, I prayed for God’s guidance, which brought me back six years earlier when we had searched for a place to live in Illinois. Our real estate agent, Laurie, quickly became a dear friend. Together, we spent many days, drove many miles and shared lots of stories. It was on the road that we discussed our siblings, and I found out Laurie had a sister with Down syndrome who she cared for. She would sing the praises of a new clinic that had been developed for adults who had Down syndrome which was located in Park Ridge, Illinois. She encouraged me to tuck that little piece of information in the back of my mind in the event Colleen came to live with me. Neither Laurie nor I knew at the time that she was sharing the most invaluable piece of information I would need for Colleen.

Within a few days of Colleen’s arrival to our home, I made my first phone call to Advocate Health Care’s Adult Down Syndrome Center (ADSC). I explained my situation with Colleen. Before the close of the day, Dr. Dennis McGuire, the Center’s psychologist, called me back. I will be forever grateful for the coaching he gave me to care for Colleen in the days until we finally met. Dr. McGuire met with Colleen and me two days later, and much to my relief, a plan of care was put into action immediately.

At 34 years old, Colleen finally began receiving the care she so desperately needed and so honestly deserved, but it was no easy task. Dr. McGuire addressed the psychosocial aspects, and Dr. Brian Chicoine, the Center’s director, the physical. Our world went from being almost hopeless to one of hope. The next two years were filled with some trial and error, but mostly trial and success. The right psychotropic medication, a loving home environment, a stimulating work environment and the constant support and guidance from the ADSC all contributed to Colleen’s recovery.

Unlimited potential

After arriving in Chicago as the person she was, it is safe to call Colleen a miracle. She has now been a patient at the ADSC for 16 years. Despite her struggles with poor eyesight and hearing, which are very common among Down syndrome patients, Colleen is a high-functioning woman, fully included and embracing society.

Colleen turned 50 this year. We have watched her grow in ways we never dreamed possible. Her social world, which mostly consisted of family in the past, has extended to her workplace and beyond. Her social world includes time at the ADSC, monthly dances, Thursday night bowling league, SPRED (Special Religious Development), Special Olympics, summer camps, travel and much more. Colleen has even mentored her best friend, Kelly, to be able to take that step away from her family and to embrace outside social activities through the Park Districts’ Special Recreation programs as well as summer camp.

As Colleen’s sister, caregiver and friend, it has been difficult for me to let her spread her wings. Since we were kids, I have been protective of my baby sister, but it has been such a joy to watch her flourish as a woman with her own interests, hobbies and friends.

New diagnosis

At a recent follow-up visit to the ADSC with Janet Bilodeau, CNP, Colleen received the diagnosis of Alzheimer’s disease. Janet has been Colleen’s primary caregiver for the last ten years, seeing us every three months for a thorough physical, mental and social evaluation. Janet’s familiarity with Colleen and me was instrumental in making the diagnosis.

Colleen’s appointment started as a conversation about me praying for more patience with my sister. It continued with Janet asking pertinent questions which revealed other changes that I was starting to see in Colleen—her inability to hear or understand when spoken to, changes in gait, insecurity when walking in foreign surroundings, constantly repeating herself, failure to adhere to self-set routines, among other things. When put together, these physical and mental changes clearly started to make sense.

Celebrating life

Right now, Colleen is enjoying life to the fullest. I know that there will more changes and challenges to come with Colleen, her abilities and our life. My education about adults with Down syndrome and Alzheimer’s disease started with Janet and the educational material I received during our appointments. The ADSC leads their patients and families through life with Down syndrome providing expert advice and care, but the education and care does not stop with their own patients and families.

Through the ongoing collection of data and research initiatives, the ADSC enhances the lives of adult’s with Down syndrome all over the world. They now know that Alzheimer’s disease is a health issue that is watched for when caring for patients with Down syndrome as they age. As shocking and heartbreaking as this diagnosis was for our family, I am grateful that it was caught early. The progression of the disease may not change, but we have the opportunity to make changes in Colleen’s care and have support each step of the way. Not only do we have support from the ADSC staff, but also through the ADSC’s Alzheimer’s support group for caretakers that meets once a month. I know, without any doubt, that everyone at the ADSC will be there for us and help us, as they have for the last sixteen years.

At the end of Colleen’s last appointment, Janet hugged both of us and said, “You know we are always here to help you.”

Divine intervention

Had Colleen not come to live with me and my family, I’m not sure what would have happened to her—and I don’t like to let my mind go there. But I don’t take the credit, nor do I want it. I think that Dr. Chicoine, Dr. McGuire and Janet, along with all the ADSC caregivers and staff, Laurie, my children, my husband, my parents, family and friends would all say the same. We are all pieces of Colleen’s puzzle—a puzzle that came together through an unwavering faith and the support and care of many loving people. This combination created the best possible version of Colleen—the woman we continue to admire and adore.

As Colleen ages, there will continue to be new and different challenges. I can say with confidence that my family and I have no fears in regards to facing those challenges. God’s guidance manifested through the love and care of the ADSC will always be with me and my baby, my sister, Colleen.

The Adult Down Syndrome Center is celebrating 25 years! To support the ADSC and celebrate their 25th anniversary, visit our website.