Jennifer: Down Syndrome

Oct 1, 2017 | Down syndrome- Trisomy 21, Sibling Stories, Stories

Jennifer was 10 years old when her sister Vanessa was born with Down syndrome. Having a sister with Down syndrome has had a profound impact in Jennifer’s life for good.

A Sister’s View of Down Syndrome: She’s Amazing!

Not Understanding What Down Syndrome Was

Jennifer was 10 years old when her sister Vanessa was born. She remembers being at a relative’s home when they got a phone call saying that her little sister was born. “I just remember my dad called me and said there is something different about her. She has what’s called Down syndrome and he kind of explained what that was. I remember thinking, okay, sweet; I have another little sibling,” Jennifer said. At the time Jennifer didn’t understand what that meant. “As I got older, I realized that it meant that there were some things that she was going to be a little bit slower at learning.”

Protective of Sibling with Down Syndrome

Jennifer was never embarrassed about having a sister with Down syndrome. “I remember thinking that I was always very protective of her, and if anyone ever said anything, I was not afraid to speak my mind, immediately come to her defense and immediately want to correct them about how amazing she was,” Jennifer said. “I had really great friends who were always very welcoming and loving, and they loved Vanessa as much as I did.

Girl with Down Syndrome is a Typical Teenager

Jennifer describes her sister as having a fun personality. “She is 16 and sassy as can be. She’s a full-blown teenager,” said Jennifer. “She was the cool little sister who I took everywhere with me, and everybody loved her because she was just full of life, and so funny.”

Having a Sibling with Down Syndrome Shaped the Person She Became

When Jennifer started college, she knew she wanted to do something in Special Education. “I got my Masters in Deaf Education and Communicative Disorders, and I also have a teaching endorsement for special ed ages birth to five. All those fancy words mean that I can teach preschoolers from ages birth to five who have special needs,” Jennifer said. “I knew from a very young age in helping Vanessa with her occupational therapy or her physical therapy or her homework that I loved working with kids with disabilities.”

Glass Child Syndrome Didn’t Apply

Some siblings describe a phenomenon called the Glass Child syndrome in which their parents looked through their needs to meet the needs of their sibling with disabilities. Jennifer doesn’t remember that happening in her family. “I grew up in a family where there were eight kids, so there were a lot of us. I’m a middle child, and from a young age, we were taught and expected to be independent,” Jennifer said. “I really feel like my mom tried her very best to treat my youngest sister exactly the way that she would treat everybody else.”

Jennifer describes being involved with homework, violin lessons, soccer and choir. Her sister, Vanessa was also involved in activities such as dance and choir. “I still feel like I got the same exact opportunities that she did, and my needs were still met,” said Jennifer.

Marrying Someone Who has a Child with Down Syndrome

Jennifer married a man who has a son with Down syndrome from a previous marriage. “If I hadn’t had that experience of having a sibling with Down syndrome, I don’t know that I would have even thought about that. I think it would have been a very scary and daunting idea to marry somebody with a son, let alone a son with Down syndrome,” Jennifer said. “But it was no big deal because I grew up with this. I got this.”

Jennifer found the experience of being a sibling different than being a parent. In speaking about her sister, she said, “As a sibling she has just always been a sibling. I don’t view her any differently than any of my other siblings. There are fun sister things that we do, but as a parent, I’m a lot more involved.”.

Jennifer describes being involved in the educational, physical, spiritual and emotional upbringing of her son. “There’s a lot more time, energy and effort invested in this little guy. That’s probably the biggest difference,” Jennifer said. “I thought that it would pretty much be the same since I grew up with it, but it’s a lot different being a parent than it is being a sibling.”

Finding Out Your Sibling has Down Syndrome

“Well, first I would say, ‘you lucky son-of-a-gun!’ You do not know how lucky you are to have that person in your life. Then I would tell them to pretty much cherish every moment because they truly are special spirits. Your life will never be the same, but in a good way,” said Jennifer. “It might seem scary…but it’s an amazing experience that I truly wish every single person in this world had an opportunity to have by interacting with someone with a disability or having someone with a disability in their family.”


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