I have three children, ages 18, 15 and 12 — two girls and one boy. Kerstin, my 15-year-old daughter, has Down syndrome. She is the glue that holds our family together. She brings us joy, laughter and love. I can’t imagine our family without her. My husband and I decided early on we would raise Kerstin like any other child, have the same expectations and love her unconditionally.
Setting clear expectations
When it comes to raising a teenage child with special needs, it really isn’t any different than raising a child without. With Kerstin, we have always corrected poor behavior with consistent messaging. We also try to set a good example, as children mimic adult behavior.
In our household, everyone is expected to be respectful and kind. When it comes to Kerstin and behavior we don’t support, we talk through the situation so she has a clear understanding of what she did wrong.
The challenge we face is many people want to give her a pass. For example, if Kerstin wants a snack at the concession stand, she will walk up and ask for one, and she will be given it without paying. I will then have to walk her back to the stand with money in tow. She must pay for the snack she “took” and apologize. But I always get the same reply from those working: “Oh it’s fine, she can have it.”
While I understand the gesture, Kerstin needs to learn that not all things will be given to her. She can’t do that as an adult. Of course, like all teenagers, Kerstin gets embarrassed when called out, but she now asks for money to go to the concession stand. And we use this as an opportunity to teach her about money management.
Giving and gaining independence
The hardest part about Kerstin growing up is her wanting independence. I still struggle with this, especially when she wants to go to the restroom alone. I can’t help but worry something might happen or she might need my assistance. She doesn’t want mom going with her and tells me, “I can do this by myself!”
I am learning to find the balance of letting her try new things with low risk. We talk about what to do in different scenarios if she can’t find her way or gets separated from me. Fortunately, Kerstin has a good sense of her surroundings and is not afraid to ask for help.
Teaching tech skills
Just like any other teenager, Kerstin has a phone. She doesn’t use it for social media, but she loves YouTube. We have set time limits on her phone and use it as a motivator. It has been a great asset for her to be more independent. She uses the voice command, which helps with speech, and the calculator for math and money management. Her favorite thing is to listen to music, which helps keep her anxiety at bay.
Her phone is also a way for her to connect with family and friends on her own. She can call her grandparents anytime she wants to share with them about her day or tell them something important. Everyone in our family enjoys their FaceTimes or calls from Kerstin! She is currently working on learning to text, which is another opportunity to work on social skills.
Talking about sexual health
When it comes to puberty, dating and sexuality, I am very transparent and open with Kerstin. We speak in literal terms when we talk about bodies and developmental changes. We discuss how things work, their purpose and hygiene.
As for dating, we haven’t experienced this with Kerstin yet, but she does want a boyfriend. Just like with any teenager, we will set boundaries suitable for her but also encourage her. I want her to have the opportunity to date and experience falling in love. I also want her to know she can discuss these experiences with me. It might be harder on me if she does get her heart broken, but that would also be a perfectly normal situation for us to discuss and learn from.
Transitioning to adulthood
Kerstin is a person first. I don’t want the first thing someone notices to be that she has Down syndrome. This is probably the biggest obstacle Kerstin faces as she transitions into adulthood. I know she will be judged by her looks and disability first, and that is hard to explain to her. She knows she has Down syndrome, but she doesn’t see why everyone perceives her as “different.”
It is very hard to get people to see that she has likes and dislikes and the same feelings and emotions as everyone else. For example, she loves animals, so she shows sheep in FFA. She also enjoys projects in 4-H, with some tasks modified for her, but she completes the project and that is what is most important.
Kerstin knows her limits. She also knows her abilities. She has already decided what she wants to do as an adult, and my job is to give her the resources and tools to be successful.
Raising a teenage child with special needs is no easy task but it is no different than raising any other teenager. We get to experience all the same emotions and behaviors and share in some of the best memories. This is Kerstin’s world; I am just lucky enough to be part of it and love her unconditionally. With all the love and support she receives and her determined spirit, I am certain it will be a life full of joy and happiness and many surprises along the way! My job is to follow her lead. And that brings me more joy and happiness than any mother could want.
Editor’s note: Sarah Soell is a wife, mom of three and the executive director of the Down Syndrome Association of Central Oklahoma. Learn more about the organization at dsaco.org.