How do I address different topics that might come up during the workshop?
First & foremost…
1. Acknowledge the feeling.
2. Say it’s common—others experience that, too!
3. Give them practical things to do to remedy the situation.
There will be many emotions, topics, and questions that inevitably arise over the course of your Workshop. In this section, we provide an overview of a few of the most common issues that you are likely to encounter, along with some suggested content for your facilitation of the conversations. You can find more in-depth recommendations and discussion in our book: Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. You can also visit Brian's and Sue's YouTube Channel to see their discussions of these topics.
Benefits of having a sibling with Down syndrome
There is a long list of all the benefits of having a sibling with Down syndrome. Your sibling will show you things about the world and your life that you never would have learned without them. We are a special group of people; I can promise you that. Things can be tough; there’s no doubt about it. But your sibling will provide you with unconditional love and teachings about yourself and others. Siblings of people with Down syndrome listed the following things as just a few of the benefits they’ve gotten from being the sibling of someone with Down syndrome.
Behavior Challenges
To read about what to do when your sibling misbehaves, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Chapter 4, Putting on the Breaks: dealing with frustrating behaviors, pages 83-86, pages 92-94, pages 97-98, as well as Chapter 5, Traffic Jams: managing uncomfortable situations, pages 103-106, and Chapter 6, Detour Ahead: sorting out your feelings, pages 125-127!
Behavior can be a difficult topic for our brothers and sisters for a few reasons. The first is because if these challenging behaviors happen in public, it’s embarrassing. Remember, it’s okay to be embarrassed. This is a feeling that all siblings feel from one another, whether or not one of them has Down syndrome. But sometimes, our brothers and sisters can begin to feel guilty or ashamed for their feelings of embarrassment. Know that many brothers and sisters feel embarrassed about their siblings—it doesn’t mean you love them any less! People may stare or whisper because they don’t understand Down syndrome or people who are different from themselves. This leads to the next reason challenging behavior is a difficult topic: it can lead strangers to think inaccurate things about your sibling or others with Down syndrome or other disabilities. They may think that people with Down syndrome aren’t capable of behaving or participating in society. They may think your parent or you are doing something wrong. None of these things are true, but it is still really hard to wonder if this is what others are thinking. Another reason this can be difficult is because we know that behaviors are communications, so when our brother or sister is having some challenging behaviors, it’s likely because they’re experiencing something and they don’t know how best to communicate to us. Finally, sometimes these experiences are so embarrassing and challenging, that we don't feel like we love or even like our sibling very much, making an expectation of our care for them seem like far too much.
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
I know how difficult this can be. Some things to remember are that nor you, nor your parent, nor your sibling are solely responsible for how others understand Down syndrome. We don’t want anyone to think badly of our sibling, but we can’t control what others think. What we can do in that situation is give ourselves some space, treat our sibling with respect and care, try to understand why they’re upset or frustrated, and model for others how they should react when they see someone with Down syndrome having a tough time. Here are some strategies other brothers and sisters reported as helpful:
1. Pretend like it's not that big of a deal so that others don't think it's that big of a deal.
Treat this like a manageable situation so that others see it the same way—then they won’t see it as such a big deal and won’t stare and whisper! If you're trying this approach, jump down to option 3 to see some ways you can try to resolve the situation.
2. Take some time to separate yourself from the situation.
Sometimes it's best to just walk away from the situation, let your parents handle it, and pretend like you are doing something else and don't even know who those people are--and that's okay! Remember, it's your parents' responsibility, not yours, to handle these difficult situations. If you need to take some separate time by yourself, there's nothing wrong with that.
3. Try to help your sibling figure out what is wrong and how to make it better.
You can also help your sibling and parent by understanding why your sibling is acting this way. Did something happen to make them upset? How can you help that? Try distracting them with something else! Offer to go look at the dog toys or movies! Reward them for their good behavior! If they need to communicate, ask them to calm down by taking a deep breath, use their words, or show you. Be flexible as they try to communicate.
Remember: these experiences get easier as you get older!
A Need for private time
To read about brothers’ and sisters’ need for private time, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters,Chapter 3, “Backseat Driver,” pages 70-72!
Often, brothers and sisters of people with Down syndrome spend a lot of time looking after their sibling or going to various appointments. At times it can feel like their life revolves around their brother or sister. This could lead to feelings of jealousy or resentment, among others. There are times when brothers and sisters enjoy spending time with their sibling, but there are also times that they need to themselves, too. This need for time away from their sibling doesn't necessarily mean a brother or sister loves their sibling any less, though; everyone needs time apart from others sometimes! Your brother or sister may want to spend their private time completely alone, or they may want to spend some private time with just them and a friend or just them and their parent. It can be difficult for brothers and sisters to have time without their siblings, but just as it’s important for everyone to have some separation time, it is important for our brothers and sisters to have their alone time, too!
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
You should consider talking to your parents about this honestly at a time when your parents are able to give their undivided attention. You also may not want to discuss this in front of your sibling because you don’t want them to misunderstand or feel badly. Remember and communicate to your parents that you know being part of a family means sharing responsibility and caring for each other, and that you’re happy to do that. Talk with your parents about the time you do spend, and are happy to spend, watching or playing with your sibling, but there are times when you need your own time. If you don't want to spend any time taking care of your sibling or playing with them, you should communicate this to your parents, too. Even though at times it may not be what you want to do, you may also have to remember that everyone has to pitch in and help each other as a family. Try to work out with your parents at the beginning of the week when they may need you to be with your sibling, as well as plan the time that you can have alone or with your friends and parents. Also remember that there may be times when you have to be flexible with the schedule you and your parents have created!
Feelings of Unequal Treatment
To read about brothers’ and sisters’ feelings of unequal treatment, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Chapter 3, Backseat Driver: handling your family issues, pages 55-59, 63-64, 77-79, as well as Chapter 4, Putting on the Breaks: dealing with frustrating behaviors, pages 98-99!
Many brothers and sisters feel as if their sibling is allowed to follow one set of rules, while they are expected to abide by a different set. Furthermore, some brothers and sisters realize that their sibling is able to do more than their parents give them credit for and expect them to do. This can lead to feelings of unfairness, jealously, or resentment.
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
First, it’s important to remember that in many families where there is more than one child, the children may have slightly different responsibilities—often older siblings are expected to do more. But expectations are also based sometimes on ability level. Your parents may expect your sibling to do things on a simpler level. At the same time, as the sibling, you sometimes see more of what your sibling is able to do that your parents may not see. Try talking to your parents about this at a calm time where they can give you their undivided attention. Calmly explain to them some of the new things you’ve seen your sibling doing that may help your parents understand her new abilities, allowing them to increase their expectations of your sibling. Suggest that something be taken up a notch in your sibling’s chores and see how they do with it after a few days—you may need to give your sibling some time to adjust to these new expectations, though!
Responsibility in Advocacy
To read about brothers’ and sisters’ feelings of responsibility in advocating for their sibling, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Chapter 5, Traffic Jams: Managing uncomfortable Situations, pages 108-111, as well as Chapter 7, Reading the Roadmap: How to become an Advocate, pages 149-153!
This can be a difficult topic for our brothers and sisters because they may feel responsible to be an advocate for their sibling at all times—but this is a lot of pressure! Brothers and sisters may feel guilty when they don’t tell every single person who they’ve ever witnessed using the r-word why they shouldn’t use it. Because these topics are so personal to our brothers and sisters, it can often be difficult to find the right words to say at a time where you feel very personally hurt by what has just been said. As brothers and sisters get older, they may experience these same feelings in the context of living arrangements or other advocacy efforts for their sibling. It’s important for brothers and sisters to know that they do not need to hold all the responsibility for being a crusader for Down syndrome justice all the time! Some brothers and sisters will go on to have careers in advocacy for people with Down syndrome or other disabilities, but many other brothers and sisters pursue a variety of other careers, too! Just because you're the brother or sister of someone with Down syndrome does not mean your whole life or career has to revolve around Down syndrome. It's okay to pursue your own, individual interests! If you're still interested in advocacy, but you don't want it to be your career, remember: You can be an advocate for people with Down syndrome in all areas of your life simply by treating people with Down syndrome with respect, including them in your social and work environments, and gently educating those around you about Down syndrome and your sibling!
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
You should know that it is NOT your responsibility to always educate every person you come into contact with about Down syndrome. It is important to remember that you have a unique perspective because of your relationship to someone with Down syndrome (their fantastic brother or sister!), but that doesn’t mean this has to be your focus 24/7. If you’re comfortable, it is helpful to educate others about respect in their language and actions. One way you can do this is simply by being an example of how we should expect people to treat each other. Talk to, treat, and include your sibling and others with Down syndrome or other disabilities in the same way you want others to. If you hear someone use the r-word, consider taking the following next steps:
1. Pull them aside and talk to them in private so that you don’t embarrass them—that’s not our goal, here.
2. Say kindly, “Hey, I noticed you used the word “retard”, and I just wanted to tell you about what this word means because most people don’t realize what they’re saying when they use this word. This word is really offensive to me and my family because it makes fun of people with intellectual disabilities. My sister has Down syndrome, so whenever you use the r-word, it insults her, even if you don’t say it to her or someone who has an intellectual disability.”
3. You may have to explain what an intellectual disability or Down syndrome means and how it is connected to the r-word. Here’s an explanation for the connection:
When someone uses the r-word, they use it as a synonym for words like stupid, dumb, silly, or maybe to describe themselves; however, what they’re really doing is saying that people with intellectual disabilities, or mental retardation as it used to be called, are stupid, dumb, and undeserving of respect.
4. Be gracious and kind in this conversation—they probably are embarrassed that they didn’t realize this is what that word meant and sad that they didn’t realize they were hurting you and your family.
Concerns about the happiness of sibling
To read about questions of happiness for your sibling with Down syndrome, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Chapter 2, Road Test: how people with Down syndrome learn, pages 27-28, pages 42-50, as well as Chapter 6, Detour Ahead: sorting out your feelings, pages 130-132, and Chapter 8, Are We There Yet: looking toward the future, pages 163-176!
If you're asking this question, it's because ultimately, under all the worries and annoyances, you just want your sibling to be happy. You want them to love themselves and see themselves as the beautiful, contributing people you know they are! As our brothers and sisters grow up and start to experience new things in their lives that contribute to their happiness, they may get worried that their siblings won’t experience these things and that lack of experience will detract from their happiness or self-esteem. I was always worried about this with my sister. I never wanted her to think negatively of herself. When I was about eight years old, I started to get really worried about whether or not she would go to college or have a job or have friends or get married or have children of her own one day. I became very sad and worried for her happiness. My mom was able to reassure me that my sister was already such a happy girl who was very pleased with her life! As long as we continued to love her and show her new opportunities, she would continue to be happy! Everyone finds happiness in different things—not everyone finds their happiness by going to college or having a career or a large group of friends or by getting married and having children. Those were just the ways in which I defined happiness at that young age of mine. As I have grown up, I see that I may not even find happiness anymore in some of those things. I also see that my sister has grown up to be a perfectly content young lady. She is not this way because things have been easy for her, but she is this way because we love her and accept her for who she is. She has taken advantage of some great opportunities that have helped her discover what makes her happy—just as I have!
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
It's not unusual that you are worried about your siblings' happiness. You may to try talking to your parents about your worries because I’m sure they’ve had similar ones. They will be able to provide you with some wise words. Showing your sibling that you love them (yes, this means you may still be mad at them or get annoyed with them!) and helping them find those things that make them happy will be much appreciated by your sibling. A lot of people with Down syndrome do go to college, have a meaningful job, date and/or marry someone, and live independently. The way that they arrive at these things and complete these things may look a little different, as it does for everyone, but people with Down syndrome go on to grow up and live very happy, successful, and meaningful lives!
Likelihood of having a child with Down syndrome
To read about the facts of Down syndrome, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Chapter 1: Gearing up to Go: getting the facts about Down syndrome, pages 7-9 (also check out pages 3-6 to learn more about the three types of Down syndrome)!
Brothers and sisters may be nervous about their likelihood of having a child with Down syndrome because their sibling has Down syndrome.
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
Whether or not you are more likely to have a child with Down syndrome depends on the type of Down syndrome your sibling has. There are three types of Down syndrome. Remember: Down syndrome means that your sibling has three copies of their 21st chromosome instead of just two. Usually, people will have two of each chromosome, giving them a total of 46 chromosomes, but people with Down syndrome have 47 chromosomes in every cell of their body! The three types of Down syndrome represent three different ways of having three copies of the 21st chromosome. The first way is by Trisomy 21. This happens when there are three separate copies of the 21st chromosome in every cell of the body. The second way is by Mosaic Down syndrome. This happens when there are some cells in the body that have that third copy of the 21st chromosome and some cells that do not have the third copy. The third way is by Translocation. This happens when the third copy of the 21st chromosome is attached to one of the other two copies of the 21st chromosome, instead of being separate from the others like it is in Trisomy 21. If your sibling has Trisomy 21 or Mosaic Down syndrome, you are at NO greater chance for you having a child with Down syndrome. If your sibling has Translocation Down syndrome, there might be an increased chance that you will have a child with Down syndrome. Your brother or sister can get genetic testing to see which type of Down syndrome they have, or your parents may already know! You should definitely talk with your parents about this question and what type of Down syndrome your sibling has if this is something you’re concerned about. You may also want to talk with them about what it is like, from their perspective as parents, to have a child with Down syndrome if this is something you’re at a greater risk of experiencing, assuming you decide you want children someday.
Living arrangements for sibling
To read about where your sibling may live when they grow up, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Chapter 7, Reading the Roadmap: how to become an advocate, pages 154-158, as well as Chapter 8, Are We There Yet: looking toward the future, pages 169-170!
This question can bring a lot of worries for our brothers and sisters because they may be unsure what’s expected of them, unsure what their sibling may need at that time in their life, and unsure of the eventual happiness of their sibling. A brother or sister may feel responsible to take care of their sibling as the family grows older, but it is important for brothers and sisters to discuss any concerns and plans regarding their sibling with their parents so that everyone is on the same page and has all of their worries addressed. It can be difficult not to know what one’s sibling will need in the future because there’s only so much planning that can be done with that! Some siblings with Down syndrome do live with their brothers or sisters or their parents, others live in group homes with roommates who may or may not have Down syndrome, and others live by themselves. Most people with Down syndrome who live outside their family’s home will have staff who checks on them or takes them to work and other appointments. Many people with Down syndrome are happy with these arrangements! People with Down syndrome do go on to live happy lives, no matter where they are living! It’s just a matter of discussing options ahead of time and making a decision with your sibling and parents to determine what is best for everyone!
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
This can be a daunting topic for all of the reasons discussed above. Whether you do or do not want your sibling to live with you, or for any other questions or concerns you may have about your role in your sibling's future or simply what their future may look like, it will be important to talk honestly with your parents. Remember, your preferences are just as important as your parents' and your siblings', and if your preferences change over time, that's fine, too! Talk to your parents about this at a time where they are calm and not terribly busy, so that they may be able to give you their undivided attention. Your sibling should also be included in these conversations to express their goals for living arrangements in their future. The future is a scary topic for everyone, though, so your sibling may need help navigating those feelings, as well.
How long will my sibling live?
To read about the facts of Down syndrome, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Chapter 1: Gearing up to Go: getting the facts about Down syndrome, page 21!
This, too, is a common question among brothers and sisters with Down syndrome. It used to be that people with Down syndrome would not live very long because of their medical complications upon birth and because they weren’t given very good health care. But now, thanks to medical advances in heart surgery, as well as other techniques used to support people with Down syndrome, as well as better access to health care, people with Down syndrome live long and happy lives!
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
It is natural for you to worry about this. It used to be that people with Down syndrome didn’t live as long. This was because they didn’t used to have the medical techniques that we have today to support people with Down syndrome. This was also because people with Down syndrome didn’t have good access to health care, so when they were sick, they couldn’t really get any help. But today, both of those things are much better. Thanks to the work of many advocates, people with Down syndrome are getting some great health care. The average lifespan for someone born with Down syndrome is now approaching 60 years. Through programs like Special Olympics’ Healthy Athletes, people with intellectual disabilities who compete as athletes in the games can receive free health screenings to address many of their needs. So many cool things are happening for our brothers and sisters with Down syndrome! If you’re concerned or want to learn more about the health care that your sibling receives, you should talk to your parents! You could even ask to accompany them on some appointments to your sibling’s various doctors to learn more.
Pressure to be Perfect
To read about some brothers’ and sisters’ feelings of pressure to be perfect, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Chapter 3, Backseat Driver: handling your family issues, pages 58-59, pages 70-75!
Many brothers and sisters will feel a great pressure to make great achievements in various areas of their lives, such as athletics, academics, social status, behavior, physical appearance, and sometimes in all of these plus more! This can stem from a variety of things—not wanting to be a bother to your parents, wanting to “make up” for their sibling’s disabilities, feelings of guilt for not having a disability. This sometimes makes the brother or sister want to take full advantage of the fact that they don’t face some of the same difficulties as their sibling with Down syndrome, and feel pressure from parents to perform in these ways. This pressure to be perfect is far too much for a brother or sister to bear and sometimes they may not even realize they’re doing this until it starts to really take a toll.
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
First, you must remember that no one is perfect—and this is okay; it’s even a good thing! Making mistakes allows us to learn and grow. Just as your sibling with Down syndrome may not be perfect in a lot of ways, no sibling is. This doesn’t mean that you need to be, either. Your parents are talented people, and part of this is being able to worry about your sibling and you at the same time. Having more than one child, even without knowing whether or not a child would have Down syndrome, your parents were expecting to do a little multitasking! Your parents don’t expect you to be perfect, and they certainly don’t want you to worry yourself so much trying to be perfect. This can be difficult, but you don’t need to feel guilty for the fact that your sibling has Down syndrome and you don’t. Every sibling has a different set of strengths and weaknesses—your sibling probably has some strengths that you don’t have, too! You’re each good at different things and you’re free to mess up sometimes and be your own person.
Feeling Lonely
To read about other brothers and sisters who feel isolated in their feelings and experiences, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Chapter 5, Traffic Jam: managing uncomfortable situations, pages 103-106!
Our brothers and sisters experience life and childhood in a bit of a different way from their peers. They mature much faster and are exposed to situations and problems that are very complex at much younger ages than their peers. Sometimes their highly specific home situations can make it difficult to relate to other peers their age that simply haven’t had these experiences or comparable ones yet. Social isolation can also be created from others’ reactions to Down syndrome. People don’t understand it, and sometimes your life activities can be restricted by this. For example, you may not want to go to a birthday party because you’re scared to hear the r-word, or maybe you don’t want to go to the movies because your sibling gets really excited and kind of loud, which makes others stare. You may be nervous to have your friends over because you don’t know what kind of mood your sibling will be in or how they will behave when your friend is over. You wouldn’t want your sibling to misbehave and your friend think negatively or inaccurately of you, your sibling, or others with Down syndrome.
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
This can be a tricky one. You’re likely going to mature faster than your friends. You will face situations that your peers cannot understand in the same way that you can. Your peers may have a difficult time, at first, understanding your life, but give them a chance and they may surprise you. This is a great opportunity to educate some of your peers and friends about Down syndrome. Yes, it can be stressful or nerve-wracking to do this, and you don’t always have to, but it may help your friends understand your life and your family. They’ll also get the chance to meet and know your great sibling! This can affect how your peers go on to treat others with Down syndrome, too! If your friends still just aren’t getting it, I encourage you to reach out to your local Down syndrome groups and connect with other siblings in your area who will understand the high’s and the low’s of your life. If you’re nervous about how your sibling will behave while your friends are over, find a time to talk with your parents before your friend comes, perhaps while you’re planning for your friend to come over, and come up with some ideas to help your sibling during this time. Maybe this would be a good time for your sibling and parent to have some one-on-one time to make sure your sibling is occupied. You can also talk with your sibling to prepare them for your friend coming over and let them know that you’d appreciate them to be nice and quiet while your friend is here. Perhaps you could also provide a time for your friend and sibling to meet so that your sibling isn’t too curious about who this person is and less likely to act in a way that you don’t want them to.
Being Mad at your sibling
To read about the feelings brothers and sisters may have about getting mad at their sibling, check out Dr. Brian Skotko’s and Sue Levine’s book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Chapter 6, Detour Ahead: sorting out your feelings, pages 125-127, pages 137-141!
All brothers and sisters get mad at their siblings sometimes--whether or not their sibling has Down syndrome! Brothers and sisters may feel guilty for ever getting mad or frustrated with their sibling just because their sibling has Down syndrome, though. These are all difficult emotions to process because even though brothers and sisters may realize their sibling requires more patience and they try to be fair and understanding, their sibling can still be annoying and frustrating and prompt these kinds of feelings. But brothers and sisters should also realize that it’s perfectly normal to get mad or frustrated with their sibling sometimes—they’re still a sibling who can sometimes be annoying! What’s important is that brothers and sisters come back to their sibling, talk through the situation with them, forgive them, and don’t let their anger or frustration persist and affect the relationship. Brothers and sisters don’t need to feel guilty or ashamed if they sometimes get mad or frustrated with their sibling!
What you can say as the facilitator: As the facilitator, it is first going to be very important for you to validate the feelings of the brothers and sisters. After that, consider providing these suggestions:
It’s great to recognize that your sibling requires some more patience. Also remember, though, that they’re still your sibling, and sometimes siblings are annoying! It’s okay to be mad or frustrated with your sibling. What’s important is that you come back to your sibling, talk through the situation with them, forgive them, and don’t let your anger or frustration affect your relationship. If you find you’re getting really mad at your sibling often or maybe they’re really not being nice, don’t be afraid to talk to your parents about it. Your parents will want to know this so that they can help you and your sibling through this situation. It’s an opportunity for your sibling to learn, and it’s important that your sibling is treating you nicely!