Growing Together

Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #17: The Siblings Issue). Click here to download the full magazine.

This article is a lightly edited discussion from The LowDOWN: A Down Syndrome Podcast, led by Marla Folden and Hina Mahmood, hosts of The LowDOWN. To listen to the full conversation, visit DSRF.org/podcast.

Every parent desires their kids to have close, supportive relationships with one another, throughout childhood and as they grow together into adulthood. When one of the children has Down syndrome, there are some extra layers to the sibling dynamic.

In this panel discussion, we turn our attention to the often-overlooked member of the family: the sibling. Five women, each of whom is sister to a young adult with Down syndrome, share their experiences growing up, and look ahead to a future in which they will take more responsibility for the care of their loved one.

Meet The Siblings

Amanda: My youngest brother Ian is 22 years old. He lives in Ontario with my parents. He’s an active participant in Special Olympics; he loves playing basketball, floor hockey, and soccer, and watching hockey on TV. He’s got a great memory for names and birthdays: he knows everybody’s name, everybody’s birthday, famous celebrities’ birthdays.

Rachel: My brother is David, and he is 23. David is a fun-loving, humourous kind guy. I just feel very fortunate to have built the relationship I have with him over the years. David loves sports and he loves to be active. He loves to dance and sing and entertain. He’s such a special guy.

Lydia: I am the oldest of four siblings. Becca, who is 19, has a dual diagnosis of Down syndrome and autism. She’s a huge people person; she makes friends wherever she goes. She likes to tell people that they are her boyfriend or girlfriend and be really buddy-buddy, even if they’re a complete stranger. She’s quite the character and brings a lot of joy to our family.

Sarah: My brother Andrew is 30 years old, and he’s the youngest of us three siblings. He also happens to be the glue that holds our family together. He’s caring; he’s funny. He’s the type of person who sees the best in everybody and, and brings out the best in everybody. He works at Nester’s Market, and he’s an ambassador for DSRF. He’s also a proud member of a ball hockey team. He’s a great uncle to his three nephews and his niece – and he’s definitely more popular with my friends than I am!

Marla: I can relate to that one for sure. I also have a sibling with Down syndrome. My sister Carina is 20. She also loves a party and is an absolute delight – and also the glue that keeps our group together, so that might be a common theme.

What do you enjoy doing together?

Lydia: Probably our favourite activity to do together is to go to the movie theatre. She loves having a girl’s day out – no little brother tagging along. She also likes to help in the kitchen. For a while, she really wanted to be a chef, so we like to bake together. She’s a lot of fun to do that stuff with.

Sarah: Andrew has decided that I am chopped liver and that my husband is actually the one that he wants to hang out with the most! But he is always happy to come over and just hang out with us, make dinner, watch a movie with my husband, read a book to his niece, and tell me that I don’t need to be in the room! I know in the back of his mind that I’m still important, but he’s definitely at that age where he wants to hang out with the guys.

Rachel: Dave is super social, and he just loves to entertain, loves to be out and about, and just be in the community. There’s a five-year difference between David and I and I’m the oldest in the family, so he loves coming over to my place and having a sleepover. I live not far from White Rock Beach, so we enjoy going out to the beach for walks and just being outside. It’s a really nice way to spend time with each other.

What did you find challenging about growing up as the sibling of a person with Down syndrome?

Marla: When my sister was really small, she was very medically complex and we spent a lot of time attending to her medical needs. And of course, I didn’t understand it appropriately because I was a kid too. There were a lot of birthdays in hospitals and stuff that seemed unfair at the time. Now as an adult, I’m like, well, obviously you’re going to do the heart surgery or whatever it was that took precedent over the sleepover that I had planned. But at the time it did feel challenging and unfair.

Amanda: I am almost eight years older than my brother, so I felt like I had a lot of added responsibility: things like having to come home after school instead of hanging out with a friend because Ian couldn’t be on his own and both my parents worked. I felt like my friends didn’t always understand, and I got frustrated at times.

Rachel: I think for me, the biggest challenge growing up was the negative stares from people looking at us in public. I definitely saw those side eyes, the stares, and the negative attention that was put on us just because David is different and people don’t understand. Sometimes it was other kids, and other times it was adults. We still get that attention from time to time when we’re out in the community just doing our thing.

Lydia: When Becca was 10, she was diagnosed with leukemia; I would’ve been about 14 at that time. Becca was in the hospital a lot and one of my parents was always with her. I also have a younger brother who has numerous disabilities, so the other parent often needed to be very focused on him. As a result, I missed out on a lot of experiences that most teenagers have. I’d say I was very mature for a younger person, and I really cast aside my needs at that time. A few years later I really started to unpack all of that in therapy! But when you’re the oldest sibling and you love your siblings, you want to do everything you can to help them and help your parents.

Marla: I think surrogate parenting is a big theme, particularly for older siblings: the need to be responsible and also to defend your sibling. There is often a bit of caretaking involved. I remember keeping an eye out for my sister at school to make sure that everything was going down smoothly and that there wasn’t anything that looked like mistreatment. I also remember getting called in for a completely different person with Down syndrome who was having a crisis, and they were like, “Who knows what to do about this? Oh, probably Marla!” I did not know.

Sarah: I am also eight years older than my brother, and when my brother was born, I thought my parents had given me a baby. I thought this was purely for my enjoyment! Only now that I have a child of my own do I realize how much additional support Andrew required. I think one of the times that I really realized that Andrew was “different” was when people started staring at him, because I didn’t see the differences; he was just my brother. But going out and feeling like I had to defend Andrew and defend our family was difficult. And yet I realize it was even more difficult for Andrew, because he was the one they were staring at. Through these experiences, I think I became mature faster than my friends, at least in some ways, and as a result we didn’t fully understand each other. There was nobody else to really talk to about it amongst my friend group. They knew and loved Andrew, but they could never really understand what it was like to be a sibling.

Marla: Did anybody else have to develop a hostile look just to give people the message, “No, you don’t get to stare at our family. No, you don’t get to make a comment right now. Yes, my sister is laying on the ground, but that’s not your problem.” I see a lot of smiles and nods from that one!

Sarah: I was thinking about this the other day. I distinctly remember walking down the street one day with Andrew, holding his hand, and people were openly staring. Andrew squeezed my hand and said, “It’s okay.” And the realization hit me, that he was seeing this more than I was. But he deals with it every day and has sort of developed this hard skin about it. And he’s also managed to develop this counter reaction, like, “You can stare at me, but I’m going to say hi and try to make you my friend, and make you realize that I’m a person too.” I think that really shaped the way that that I perceive it. But I still give the death stare when needed, don’t worry!

What advice do you have for parents who are trying to promote a happy, healthy sibling relationship?

Amanda: One thing I really appreciated from my parents was their openness and their honesty. I remember when he was born, they sat me down with a book and explained, “Ian has Down syndrome, and it doesn’t change much about him. He might need a little bit of extra help and he might learn to do some things a little bit slower; we just have to be patient.” And as we grew up, they didn’t hide the struggles. They encouraged us to talk about our feelings and ask any questions we had. And they took me to my brother’s speech appointments; they didn’t force me, but I wanted to, so they took me and let me be involved in everything.

Sarah: I remember on the way to the hospital, my dad picked us up and said, “Your brother has Down syndrome.” I had no idea what that meant, but from day one my parents were really open about what Down syndrome was, what that might mean for the family, what that might mean for Andrew and Andrew’s future, and our future. At the same time, my parents really got us involved in Andrew’s day-to-day care. I used to dress up Andrew in my doll clothes. I don’t know if my mom knew about that, but they let us grow that typical sibling relationship. We didn’t always get along, and it was okay to fight. It was okay to treat Andrew like any other sibling, and that included getting frustrated when he was taking up too much attention. So, not anything different from my sister and I.

What advice do you have for other siblings of a person with Down syndrome?

Marla: I have a piece of advice that I often give to families on this one, and particularly to younger siblings: it’s okay to take up space. You’re a kid too and you shouldn’t give up your childhood or be really torn between the needs of your sibling and what will be easiest for your parents. One thing that I often recommend to parents is to pull their typically developing children out of school every once in a while, for some one-on-one time. It’s not the end of the world if they miss a day of school every semester to have focused attention from a parent that they might not normally get because their sibling with Down syndrome needs constant care. It’s a great way to connect with your other children, and you know that your child with Down syndrome is safe and secure.

Lydia: That’s definitely something I really struggled with as a kid. I was very excited to be kind of the third caregiver in the family. And I think I made some sacrifices that my parents didn’t even ask me to make, just because I really wanted to be the best sibling I could be. And as a result, I didn’t enjoy my childhood in certain ways that I think I could have otherwise.

Rachel: Over the years I’ve tried to find things to do with David that meet him where his needs are. I think that’s been really helpful over the years in building the relationship. Start from a place of love and respect for each other, and be patient when those harder moments come your way.

Amanda: If you can find other people who are siblings, that’s really helpful. One of my closest friends to this day is somebody who has a sibling with a disability and I met her much later on, in grad school. It’s a bond like no other: somebody who understands the joys, but also the fears and the challenges and can relate to your experience. Because as much as people try to understand, sometimes they just can’t. I wish I’d had her a lot earlier on in my life.

What are your hopes for your relationship in the future?

Marla: Well, I am one of the options for my sister’s care for the long-term future, so I anticipate always having a large role in her life. I think we’ll keep jamming on ukulele; we’ll keep talking about musicals. We will keep dancing and having spa dates. I just can’t wait to see her grow into an adult. She’s well on her way now, but I’m super excited to see her have a job and have some great adult friendships and just be out living her best life. Like she says, her lipstick is popping, so she’s ready!

Sarah: I am also the ultimate care plan. Part of that is continuing to be part of Andrew’s life as he evolves. And I know that my role in Andrew’s life is going to be different than my husband’s role or my other sister’s role. Whatever Andrew needs, I hope he always knows that we are going to find a way to provide it for him. I have really enjoyed seeing the relationship that he has with my daughter and all the things that Andrew teaches her, and she’s going to start to realize what a special person Andrew is.

Amanda: Despite my physical distance from Ian, I hope we can continue to have our FaceTime chats and that he will feel like I’m someone he can confide in; someone who is always there to listen. I can’t wait to see what kind of job he ends up taking and just where the future takes him.

Rachel: I am really excited to see what the future holds for David as far as employment. He’s super eager to find a job, whether it’s a paid or volunteer role. And then figuring out his living situation as well; that’s something that our family is working towards. Mostly, I just look forward to building on what we already have.

Lydia: Becca is looking to move into an assisted living situation in the next few years. She’s just finishing up high school now, so I’m really excited to continue to develop our more adult sibling relationship. I think we’ve only really started developing that in the last couple of years. I’m finally able to have a full conversation with her and go out and do things, just the two of us. And she’s just so much fun. I’m sure eventually – way, way in the future when my parents are no longer around – I will also have a big role in her care. But for now I’m looking forward to just having fun with her. That’s the good stuff.