8 Concerns Parents of Teens With Down Syndrome Have
My daughter with Down syndrome is 11 years old. As we get closer and closer to her teen years and the changes that are ahead of us, I find myself wanting to talk to other parents about what to expect during those magical years.
A teenager is a teenager, regardless of disability or diagnosis. It means our kids go through puberty and have hormones the same as everyone else. If your teen has an intellectual disability, it can be harder to manage their personal care or explain why they are not able to, for example, get their driver’s license when they turn 16.
The reality is, as our kids get older, the less likely we are to share our parenting experience. It makes sense, our children grow up and their privacy becomes the main priority. But along with that, there isn’t much “out there” about having teens with Down syndrome.
I reached out to parents of teens with Down syndrome to ask some questions about the teen years. I used their replies to put together a list highlighting the most common concerns parents have when raising teens with Down syndrome, along with some resources to help parents educate themselves and their teens. To protect the privacy and dignity of the teens with Down syndrome, we’ve made quotes from parents anonymous.
Raising teens with Down syndrome for us is an unusual mix of typical teenage stuff and child-like behavior, wonder and love. It’s incredibly hard, ridiculously funny and these teens have made our lives so much richer. The difficult things we deal with are by far outweighed by joy.
While the bodies of teens with Down syndrome mature at the “expected” time, their development in other areas may lag behind. For some, these physical and emotional changes may be hard to understand. Teens may struggle to understand when it is appropriate to talk about these changes and who it is appropriate to talk to about them. It may be hard to understand certain topics are private and don’t need to be brought up with, for example, the hairdresser.
Like with all teens, it is important to teach kids with Down syndrome what to expect during these years, especially as their body changes and they begin to explore their sexuality. Personal hygiene care becomes a priority for boys and girls alike, and helping them become as independent as possible in this area is a must. It may take a little longer for them to get it, so keep modeling and teaching.
For girls, this is the time when they get their period and have to learn how to manage it. It is important for them to know beforehand what to expect, why it is happening, and what they have to do when they get their period.
Thankfully, there are some great resources to help kids with Down syndrome and intellectual disabilities understand the changes taking place in their body. “The Boys’s Guide to Growing Up: Choices & Changes During Puberty” and “The Girl’s Guide to Growing Up: Choices & Changes in the Tween Years,” written by Terri Couwenhoven, a sex educator who specializes in working with people with intellectual disabilities, are perfect books for our kids. They are written at a third-grade reading level so preteens and teens can read them on their own or with the help of an adult. They are matter-of-fact, reassuring and feature realistic illustrations and learning activities.
My daughter will be 19 tomorrow. She’s a senior in high school. She’s always been very involved and included in everything at school and Special Olympics. She has a lot of friends with and without disabilities. She has a boyfriend who she says she’s going to marry. They’ve been dating for over nine years.
Almost every parent said their child was interested in dating, which, again, is common for just about any teen.
If your teen is interested in dating, the book “Boyfriends and Girlfriends: A Guide to Dating for People with Disabilities” is a great resource for teens and adults with intellectual or developmental disabilities. It explains the dos and don’ts of dating and validates their normal, age-appropriate desire for companionship and romance.
Along with dating, many teens express a desire to get married. The season 4 finale of “Born This Way” brought us Cristina and Angel’s wedding. Cristina is a young woman with Down syndrome. For the many parents who may wonder, “Will my child ever get married?” this episode opened up dreams and possibilities for future generations of people with Down syndrome.
Show your teen examples of couples with Down syndrome. Kris Scharoun-DeForge and Paul DeForge were married for 25 years before Paul passed away, and Tommy and Maryanne Pilling have been married for 24 years.
Teens with Down syndrome need to get “the talk” just like any other teens going through puberty. This is especially important since people with disabilities are more at risk of being sexually assaulted. Mighty contributor Jen Pearlstein wrote in a post:
Sexual assault against women is pervasive and tragic. Disabled women are even more at risk, with estimates indicating women with disabilities are three times more likely to be sexually assaulted. In their piece investigating sexual assault in women with intellectual disabilities, NPR found that women with intellectual disabilities are more than seven times more likely to be assaulted than those without disabilities. According to Disability Justice, 83 percent of women with disabilities will be sexually assaulted in their lifetime, yet only 3 percent of sexual abuse involving women with intellectual disabilities is reported.
We have to let our kids know they control their bodies and teach them which types of touching are appropriate. These conversations are essential and will help kids understand what sexual abuse is and what constitutes an abusive act. It is imperative we provide them with the tools and confidence to know what to do if they ever find themselves in an unsafe situation. Teaching teens about sexuality also teaches healthy boundaries.
There are some resources available to help you navigate this topic. The National Down Syndrome Society has an article that addresses sexuality and Down syndrome.
Terri Couwenhoven’s book, “Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals” is also a great resource.
My daughter is 14. She dresses 14. She has an attitude of a 14-year-old (Lord help me). She likes music and boys and shopping and YouTube and texting. She also gets her heart broken when the drama of teenage girls takes over. It’s hard for her to understand why someone may not like her or chooses to be unkind. I feel like maybe it’s easier for typical girls to understand why it happens though it doesn’t hurt any less. Never easy to see your child’s heart breaking and not be able to fix it.
The “teenage years” is when friendships become quite important (and parents become annoying). It is no different for teens with Down syndrome. However, one of the biggest challenges teens with Down syndrome may face is the lack of true friendships. While typical peers may be friendly at school and school-sponsored events or activities, those friendships don’t always extend beyond school. Several parents shared that their teens with Down syndrome don’t get invited to parties or to “hang out” with other kids. This, in turn, is devastating and isolating for their children.
Teens with Down syndrome who have speech difficulties may face even more challenges, as Mighty contributor Kathleen Palmer shared in a post:
He’s a very bright kid, but the differences in working memory and his speech delay mean he needs more repetition to remember certain things, and a lot more time to finish certain tasks. The speech delay, in particular, is very frustrating for him. And frustration in a kid with a speech delay looks different. Where my neurotypical son would deliver an angry, 5-minute soliloquy about whatever is bothering him, my son with Down syndrome gets stuck sometimes, unable to express his thoughts or relay a story about something that happened to him, and then he shuts down. His peers don’t always understand it, and that creates distance.
While the documentary “Far From the Tree” focuses primarily on parenting kids who are different from the rest of the family, the biggest takeaway I got from it (which had me bawling) is the realization of how imperative it is for our kids to be connected within their own community. I cried as three adult men with Down syndrome, who have been roommates for 13 years, sat outside on their porch sipping coffee, and said, “We are more than friends, we are like family. A family of friends.” They wiped their tears as they put their fists together. A team. Our kids need their team, too.
While it is important for our kids to have typical friends, let’s not forget some of the best friendships they will have will be with the people within their own community. We saw this through “Born This Way,” as we watched the group of friends move through life together.
As a final note, while parents may not typically arrange a time for teens to “hang out,” don’t be afraid to reach and make those connections happen. Who does your teen talk about? Who does your teen call a friend?
A few parents commented their teen wants to drive, yet they are not sure this will be an option for them. The overall question usually is, can people with Down syndrome drive? Some can, however, it is not common.
“Born This Way” addressed this issue when both Steven and John wanted to drive.
From our recap:
Steven is studying to get his driving permit and his mom and dad are helping him. He attends a comprehensive driving evaluation, where he will be assessed to see if driving is a realistic option for him. The driving coach checks his vision and reflexes then they do a behind the wheel assessment. Steven is very cautious, but he does a good job behind the wheel. The coach recommends Steven have his peripheral vision checked. After this experience, Steven decides he needs more time as he is considering the consequences and responsibility of driving and does not know if he is ready yet.
Like Steven, John wants to drive. John’s sisters are proud of John’s desire to drive, but they aren’t sure it is a realistic option for him. John is bothered and feels his sisters do not believe in him. John also has a comprehensive driving evaluation. The coach believes John may have a visual field cut. After the portion driving behind the wheel (John seems to like speed) he tells John he has some problems to overcome. John needs to see an eye doctor but also an occupational therapist to work on some skills. The instructor advises John to take it slow.
Some individuals with Down syndrome are capable of driving. Mighty contributor Linda Biermann shared her son’s experience in one of her posts. The family owns a farm, and driving is quite important for farming. When her son was very young, they bought him a child’s battery-operated John Deere tractor.
He very eagerly drove the tiny car around the yard, running into this and bumping into that. In time, he wasn’t running into things anymore and my husband began adjusting the speed governor bit by bit, letting him go faster and faster. Before we knew it, he was safely zooming from one corner of the farm to the next! He was driving before he’d even mastered speech and could completely articulate his dreams.
Ultimately, my son moved on from a child’s toy to actual farming implements. He acquired his driver’s license at age 18 after passing both, a written and driving test for the driving examiner. Today, he drives independently where he wants and needs to go. We have an agreed upon safe-zone and he communicates his location with every stop to keep us informed of his whereabouts. He doesn’t like to drive in the bigger cities and asks us to take the wheel in those places. He’s a very safe and capable driver.
I have a friend whose adult son with Down syndrome drives a golf cart around their neighborhood. It is not a regular car, but he is glad to be able to get around independently.
Ultimately, being able to drive (or not) depends on each individual person. Having a comprehensive driving evaluation, as shown in “Born This Way” may be a good first step if your teen is determined to drive.
6. Sports and Extra-Curricular Activities
Several parents mentioned how important it is for their kids to be involved in activities where they find success. It is not only important for them to stay active, but it encourages a sense of belonging and builds self-esteem. It creates community for them.
My son is 19 years old and is absolutely amazing. He played football for his high school team and wrestles on the regular high school team. He wins matches and gets pinned, too. He runs the football, and has scored touchdowns. But the amount of people he inspires to be better is so amazing to be able to watch unfold. His peers truly love him and have accepted him into their groups.
My teen with Down syndrome is an active girl. She plays piano, soccer, takes gymnastics and volunteers in the community. Additionally, she just finished her third theatrical production at our local community theater. She dreams of going to college, having a boyfriend and living independently.
Homebodies… some of my teens with Down syndrome can very quickly become homebodies, making it a challenge to get them out of the house doing activities. I’ve found with our homebodies that once we have them out of the house they usually have a pretty good time.
Another thing to keep in mind is that people with Down syndrome tend to have slower metabolisms — which can result in weight management challenges — so staying active is important.
I recently watched a video of another mom with teens who have Down syndrome and realized what it looks like when I do too much for my kid. I need to do less and expect my kid to do more by themselves. I didn’t think them capable. I reminded myself to ‘expect success,’ and wouldn’t you know, my kid is very capable!
Teens with Down syndrome want to be independent just like other teens, which can be tricky, as many of them require extra supports that most kids their age do not need. Finding that balance may result in some frustration from teens and their parents. Parents are faced with, “How much independence can my child realistically have based on their developmental disability?” While teens may be wrestling with the awareness that they are different from their peers and question, “Why am I different from my friends?”
The reality is, at some point, as parents we need to begin to let go while still supporting our kids so that their efforts for independence — no matter how small — can be successful.
We also have to keep in mind that independence for our teens with Down syndrome looks a little different than it does for typical teens. Most of us who parent kids with Down syndrome will continue to be directly involved in their lives throughout their adult years with some parents applying for guardianship once their teen turns 18. We do not know what the future holds, but during the teen years, we can create a plan to help our children become as independent as possible. A great resource is, “The Down Syndrome Transition Handbook: Charting Your Child’s Course to Adulthood” by Jo Ann Simons, MSW.
Guardianship is not the only solution. Disability advocates promote an alternative called “supported decision-making.” Supported decision-making maximizes independence and promotes self-advocacy and self-determination for individuals with disabilities and is a good fit for many people with Down syndrome. If you are interested, check out the options for supported decision-making in your state.
Hugging. People it is not OK for your teens to hug everyone. No, it is not OK for them to hug camp counselors, coaches, teachers or acquaintances at school (friends is a totally different thing). My kid shouldn’t get a pass just because he has a disability. If a girl in high school wouldn’t want some random guy coming up and giving her a hug, my high school age student with Down syndrome shouldn’t be allowed to either, just because he wants to.
Boundaries should be taught before the teen years, and I believe most of us can agree with that. Not everyone is a friend, and there are many people who may try to take advantage of our kids.
Many parents expressed issues with “hugging.” While it is a common stereotype, it is true that many of our kids are known to be huggers. Personally, I had this written in my daughter’s IEP. She loves hugging her friends and teachers but was also constantly being asked for hugs by friends (I cannot blame them, her hugs are what we call “magical”). However, is this an appropriate behavior for a teen or an adult? Also — and perhaps most important — this uninhibited display of affection can make my daughter more vulnerable to sexual assault. I wanted her to know from an early age that hugs are only for family and close friends.
A mom shared her teenage son lost his job as a bagger at a grocery store when he hugged a new employee who felt very uncomfortable by the unsolicited hug.
As we approach the teen years, I am encouraged to know we are not alone. There are others who have gone before us, and the Down syndrome community is strong and supportive. My daughter is already into makeup, so I wonder if she will be the teenage girl who spends hours getting ready before school to make sure she looks fabulous!