There is typically no person that we will know longer or better than our brothers and sisters. Time together with siblings shapes who one becomes. Brothers and sisters of individuals with CdLS experience life through the challenges and successes that face their sibling. That experience can be the opportunity of a lifetime, particularly when parents work to keep the entire family involved in caring for each other.
Kortni Van Buren, 24, whose sister, Jindi, (age 21) has CdLS, reflects that educating herself about the special needs of her sister evolved over time. "I cannot remember when exactly that my parents explained CdLS to me. I was only two when Jindi was born. I remember it being an ongoing process where there was always something new that I was learning about Jindi. As far as I can remember, I pretty much just went with the flow when it came to Jindi. I paid a lot of attention to her because she was so small and cuddly."
The Van Burens' openness about and normalization of Jindi's needs modeled a lifestyle for Kortni. "[One] of the most positive aspects about being Jindi's sister is the entire life that I have lead. If Jindi had never been born, I would have never been involved in so many of the activities that I do today. I am 24 years old and still a Girl Scout so that I can stay involved with the CdLS conferences... I [currently] work in two different settings [with] physically and mentally disabled teenagers [and] adults... I have shared so much [of these experiences] with my friends and have gotten them involved with the disabled [as well]. Jindi has taught me to love and care for those who need the extra special love and attention."
"They had told me that she would not be able to do all of things that my sisters and I could do, but that we should try and teach her as much as she will retain, so that she has the best quality of life," Kortni adds. "I do not want to say that we were all treated equally growing up, although my parents did try, because even in a household where there is no child with CdLS or any other disability, [there] is always one kid that is 'babied' more and receives most of the attention. There were times that my parents had to pay a lot more attention to Jindi."
The presence of a member with special needs forces a family to shift their collective thinking away from the norm. Doing this can open doors for a unique set of opportunities. The life lessons learned as a result of a distinctive family situation can broaden and shape one's future. Exceptional skills and capacities for caring are often noted among brothers and sisters of siblings with CdLS as they grow to adulthood.
Kortni continued, saying "[my] parents were always there to answer any questions I had [about] Jindi and tried to keep me involved in her life as much as possible. We would volunteer at her school [and] with the Girl Scouts. [I] assisted her in learning sign language, [helped] her with her daily activities, and many other things to keep us involved in her life. There was never any pressure to do these things, it just seemed natural [to] want to help out with her."
While at home they may interact well with their sibling, many brothers and sisters struggle under the light of public scrutiny to maintain a positive relationship with their sibling. Kortni explained the approach that worked for her in public situations. "The best way [I] dealt with [this] was to educate my classmates and teachers... Letting people know about CdLS, how wonderful [people with CdLS] are, and how loving they can be, really helps when it comes to others realizing what you are dealing with on a daily basis. I feel that having individuals [with CdLS and other special needs] out in the community allows others to see that they are just like you and me and enjoy going out for ice cream or to the park." For Kortni and others, family gatherings and conferences provide chances to meet with other siblings and individuals with CdLS. Foundation family service coordinators have learned from many siblings that these opportunities to get together with peers are often the first environment in which they have not felt "alone" or "different" because of their sibling's condition.
"I have been to all of the CdLS meetings annually since I was two years old. I remember how there were not many families [in the beginning], but it was definitely easy to distinguish who had CdLS and who did not. When I was little, we used to just attend the conferences. As I got older... my main focus [and love] was [providing] childcare." Kortni, the Van Buren family, and their troop of Girl Scouts have been providing childcare for individuals with CdLS at conference for the past 14 years.
"No matter what her disability is, she is my little sister and I will always love her as she is!"
A special thank you to Kortni Van Buren for taking the time to articulate her thoughts and feelings. We very much want to hear from other brothers and sisters to learn of their life experiences with CdLS. Please contact Lynn or Mindy at the Foundation office or at families@CdLSusa.org.