Transcending Labels: A Family’s Story of Love, Strength and Empowerment with Down Syndrome


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      Today I would like to shine a spotlight on this whole family unit. There is a dad, a mom, and a girl with Down Syndrome in this family. This girl is a former student, and I remember our challenges together as she navigated middle school. I asked for the advice of her wise and wonderful elementary teacher and learned she was determined, persistent, and sometimes stubborn, but that was ok as I love a good challenge. Today I am happy to report she is loving life and is a source of joy and delight for her parents. They have common interests and a bond of love, strength, and empowerment.

     I had to discover that I would not get through to her in my usual tried and true manners. I quickly noticed she was not a morning person in my class, so I learned to respect her privacy. She needed a little time before anything was asked of her. I would back off with my usual cheerful morning greetings. I needed to find the things she loved and would work for, so I asked her parents what she liked to do at home. She loved to work on her iPad and had a stuffed animal she constantly held. We agreed that if she did the necessary work I wanted, she could have free time on her iPad with her stuffed animal by her side. She loved looking at pictures, so I would show her pictures on my phone. I made sure she had a patient aide that would give her the time she needed to complete her tasks. I discovered she had a good sense of humor and loved jokes. Even though there were many battles of the will, she was sweet, loving, and fun to have in my class. Whenever she laughed or even smiled, it felt like a big win. It was great to have the support of her parents who were willing to work with me.


Q: What is one thing you wish teachers know about your child that is not on the IEP?
A: How loving she is. How she opens up about going on bike rides and out for dinner.

Q: Scores on tests do not define the child. What is something your child is really good at that is not reflected on tests?
A: She knows quite a lot about movies and music. She can tell you what song is from what movie.

Q: How important is homework for your child? Is it just a burden, or is it a helpful learning tool?
A: I thought it was important at first, then realized that’s not how she learns.

Q: How old was your child when you first knew he/she had special needs?
A: At birth

Q: What is one piece of advice you have for someone who has a newly diagnosed child?
A: It’s important to have the entire family on the same page; depending on the diagnosis; siblings play a huge part, or if an only child, keep trying to get the child involved in outside activities that interest them. Never give up. Ask for help. Don’t hide from their diagnosis.

Q: What is one meal that everyone in your family likes to eat?
A: Breakfast and dinner in our household

Q: What advice do you have for interacting with children with special needs?
A: Treat them the same way as your peers; learn how to communicate by asking questions to them, siblings, or parent(s). Don’t stare…. Smile; make eye contact. We are more alike than different. Inclusion. Playing games without rules Don’t pigeonhole a child. Perceptions aren’t always accurate and can be wrong.

Q: What activities do you recommend to other parents to foster self-care?
A: Ask for help to give yourself a break. Plan lunch dates with friends; get a massage; and talk to someone for support. Self-care is a necessity.

Q: Are there any support groups that you recommend for parents or children?
A: I wish there were some I could recommend. The only one I participated in was at Windfall when she was a baby. There needs to be more available.

Q: What are your favorite family activities?
A: Traveling the Caribbean, biking on the beaches & trails, Road trips to Florida Beach House, boating – canoeing, eating out, watching movies/DVDs, taking photos

     This picture is perfect for this girl because the beach and warm weather are the places this girl and her parents love the most. Today they spend part of their time in Florida, and part of their time in Ohio. I love seeing pictures of her riding her bike on the beach, her face beaming with glee as she rides behind her dad in an assistive bike he has designed for her. This specially designed bike allows her to pedal her bike while it is attached to his bike. Whether it is repairing her favorite stuffed animal, being a constant companion wherever she goes looking for activities she loves to do, and then being by her side to share the joy, her dad is by her side. Together with her parents, she goes to new restaurants, watches new movies, and has become a film and music connoisseur. She can tell you what movie a song is from and delights in the knowledge. 

      In the pictures her parents share, she looks pleased in the swimming pool or at the beach, and it makes me feel a sense of peace knowing how content she is in her life. They have found common activities as a family that they love to share. They found their passion as a family. Her mother shared that she is very loving and talks when they go out to dinner or on bike rides. She has two very loving parents, and both participate in activities that she enjoys. The love they share permeates the bonds in this family. Whether it is going on a bike ride, watching movies, playing baseball, or going to different restaurants, this family has valuable wisdom to share. Don’t hide from the diagnosis, we are all more alike than different.