Today on the Lowdown, a Nelson Dream Podcast, a panel of siblings tells us what it is linked to grow up with a with down syndrome. Over to you, Hannah and Marla .
Thanks, Jody . Hello and welcome to the Lowdown podcast. My name is Hannah Mahmud, your host occupational therapist and lover of individuals with Down Syndrome. Um, joining me today is my wonderful co-host, Marla Folden , who is an S L P at the D S R F . Um, hello Marla.
Hey, Hannah. How's it going?
Good. How are you doing?
I am good. Spring is here . I'm very happy about it.
Yes, I know. It's , it's really nice that at five 30 there's still a Monica Ma . Like , so it's hopeful , when we leave work the
Daytime . It's awesome.
Exactly. Always a good sign. Yeah. Um, we're very excited about our super special episode today, but before we continue , um, we would love for you to hit that subscribe button and leave a review of our podcast on your chosen podcast platform. Remember to check out our episode pages for additional resources related to each episode.
You can also follow the DS f@ww.dsf.org , and on Instagram and Twitter by following at DSF Canada. So, as I mentioned, today is a really great episode. We, this has been something that Marla and I have been percolating on for a really, really long time. Mm-hmm. , but the pandemic was getting in the way of our plans, as it inevitably does with a lot of people's plans.
Um, and our episode today addresses a question that we get a lot as clinicians, and that is how do we navigate the sibling dynamic so that the relationship is healthy and thriving as our individuals with Down syndrome grow up to be adults?
Absolutely. We, we really do get this question very regularly, and I think because the relationship has so many extra layers when a child has Down syndrome or a dual diagnosis, and in fairness, I think every parent has asked themselves this question if they have more than one kid, no matter who their kids are. Down syndrome not required.
Um , but I also understand the added concern for families that do come here to see us. And so today we are bringing you a panel discussion where each person on the panel has a sibling with Ds or a dual diagnosis. And we're hugely fortunate to have found several people that are willing to share a bit about their experience in order to give families some food for thought. Uh, we have no particular message or agenda.
We just wanted to share this episode with some gen genuine stories for your consideration. So I hope everyone enjoys the discussion. Um, so here I am with some wonderful siblings, and I'm gonna get each of you to introduce yourselves and your sibling and paint a little picture for us , um, so that the listeners out there get an idea of where you're coming from.
Why don't we start with you, Amanda, I'm gonna pick on you because you work here. Um , tell us a little bit about your sibling. Go for it.
Okay . Um, so my brother is 20 years old. He's my youngest brother. There's one in between us. Um, and he's back in Ontario with my parents. Um, he's in his last year of high school. Okay . Uh , because in Ontario you can stay in high school until you're 21. So he's about to sort of enter that transition period pretty soon. Mm-hmm . , um, he's an active participant in Special Olympics.
He loves basketball, floor hockey, soccer , um, loves watching hockey on tv. Our family's big soccer family, so lots of, lots of sports. Mm-hmm . , um, loves to sing and dance. He's super goofy. Um, he's got a great memory for names and birthdays. He knows everybody's name, everybody's birthday , um, famous celebrities, birthdays, got a great memory for all that stuff .
Fact holding guy. Yep .
Yeah. Um, yeah, he loves graduation and yearbooks. He'll look through all of my old yearbooks and make his own graduation ceremonies and super. Yeah. So he's super excited about his graduation. I bet. I bet he
Is . Yeah . A party to end all parties, I'm sure when his is just graduation time ,
Hopefully . Yes, there are going to be two parties, so, oh, okay. He's very excited.
Well planned . Thanks Amanda. Um, let's hop over to Rachel. Rachel, could you tell us a little bit about your sibling and give us an idea of what they like to do?
Thanks so much, Marla. Yeah, so , um, my name's Rachel and yeah, my brother is David, and David is 21. So just a little older than Amanda's , um, sibling there. So , um, yeah, David is a fun-loving, humorous kind guy. Um, I, yeah, I just feel very fortunate to have built the relationship I have , um, with him over the years. And , um, very similar as well , uh, to Amanda's sibling. Um, David loves , um, sports.
He loves to be active. He is, yeah. Loves to, loves to dance and sing and entertain. Um, he, yeah, he's just such a special, special guy. I, I feel so fortunate to, to know him and, and yeah. Have the relationship that we've been able to build . So I'm looking forward to sharing a bit more about that. And yeah, that would be my feedback and input on, on David.
So . Awesome. And we have the pleasure of knowing David and mm-hmm . , I can vouch for him. He is an awesome guy, so, yeah. Yeah, that was, thank you Rachel. Thanks for that. Um, let's go to Lydia. Lydia, can you tell us a little bit about your sibling? Paint a picture for us.
Hi. Yeah. Um, so I am the oldest of four siblings. Um, one is Becca. She is 17. Um, and she has a dual diagnosis of Down syndrome and autism. Mm-hmm . . Um, she's a huge people person. Uh, she makes friends wherever she goes. She likes to tell people that they are her boyfriend or girlfriend and just , uh, you know, they're really buddy-buddy, even if they're a complete stranger.
Um, she's , uh, quite the character brings a lot of joy to our family. Um, and she also participates in some of Dsfs, you know, summer camps and stuff like that. And , um, yeah, she's just a lot of fun. Mm-hmm . ,
Am I right in thinking that Becca also likes a party?
Oh, yeah.
Loves a party.
Yeah . I feel I may have been invited here and there to a party or two, but yes . Hosted by Becca or potentially hosted by Becca. She's very welcoming.
, she loves to write , uh, letters to people. And , uh, I think over the past year she's made maybe hundreds of invitations to a party that , uh, what didn't even happen, but , she just ,
Or, or she likes to hand
Out the
Invitations like five or six months in advance, just so we can save the date . Yes . I've gotten
Some of those. Yeah .
Just to make sure. Yeah. Yes ,
Exactly.
Planning ahead. I think that's a good thing for sure. Um, let's, thank you Lydia. Let's talk with Sarah as well. Sarah , can you tell us a little bit about your sibling?
Sure. So my brother Andrew is 28 years old, and he's the youngest of us, three siblings. He also happens to be the glue that holds our family together. Uh, 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. Um, he works at NESTER'S Market, he's an ambassador at the D S R F . Um, he's also a proud member of a ball hockey team.
He's a great uncle to his three nephews and his niece. Um, and he's definitely more popular with my friends than I am .
I can relate to that one for sure. Uh , I should make it really clear for everybody listening in case they didn't know, and I guess you may not. Um, I also have a sibling with Down Syndrome. Uh , my sister is 18 and she was interviewed on this podcast for our sign language episode, so you probably got to know her a bit during that. Also loves a party currently planning her graduation party.
It will be tropically themed in case you're wandering , um, complete with pool decorations, et cetera. And she is a delight. And also the glue that keeps our, our group a move in . So that might be a common, common
Thread. Great. And
Do you wanna take it from
Here? Sure. Yeah. So thank you so much for, you know, giving us an insight. And I know almost everyone's siblings here, and I'm very excited to meet Amanda's brother once he comes to visit us in the summer. So I've had the privilege of meeting and interacting , um, with all of your siblings. Um, let's kind give our listeners an idea of, of what your specific relationship is like with your siblings.
So let's start with like, what do you enjoy doing together? Um, Lydia, did you wanna start us off on this one?
Yeah, sure. Um, so probably the favorite activity for me and Becca to do together is to go to the movie theater. Um, she loves having just like a girl's day out , uh, no little brother tagging along . Um, yeah. And , uh, you know, she also likes to help in the kitchen for a while. She really wanted to be a chef, so we like to bake together and , um, and yeah, even watch movies and TV at home too.
She's, she's a lot of fun to do that stuff with mm-hmm . .
Yeah . Great. I know, it's, it's often those very simple, fun activities that, you know, that are so enjoyable with our siblings. Like, movies are just so much fun. So it's, it's, and I , it's a great little activity to do together. Mm-hmm. . Um, would anyone else like to kind of share with us what you like to do with your siblings?
Andrew has decided that I am not chopped liver , um, and that my husband is actually the one that he wants to hang out with the most. Oh . But he is always happy to come over and just hang out with us, make dinner,
Watch a
Movie with my husband , um, read a book to his niece, tell me that I don't need to be in the room that he's got it. Uh , , I know in the back of his mind that I'm still important. Uh, , he's definitely under that age where , uh, he wants to hang out with the guys.
Yeah. Mm-hmm.
,
Love that. And I like that. Sarah , you mentioned earlier that you know that Andrew also loves hanging out with your friends and some , and , and in most cases, you know, it's more popular with your friends than you are. Do any of other , you , um, have experiences that you could talk about of your siblings interacting with your friends, maybe when you go on an outing or at an event?
I have one
Really
Memorable
Event
That happened a long time ago when my family lived more rurally,
And
My sister
Took
My husband on the time of his life
Snowshoeing obstacle course, and
She was really small at the time, so it was a lot of
Come on. And she would squeeze through these
Like
Outrageously small spaces between two
Trees under a log, all like up and down and all over the place. And she was just like, come on. And my husband's more than six feet tall and he was trying to like, appease her and like wiggle in the dirt under, under all this stuff. But yeah, she mm-hmm .
, she runs, she can convince, right? Oh yeah. Exactly. . Rachel, what about you? I could totally imagine Dave is just like buddy buddy with all your friends.
Yeah. He is. Dave's super social as I, as I kind of tried to hint at anyways in the beginning there. Um , yeah . And he's just loves to entertain, loves to be out and about and, and just be in the community. Um, there's a five year difference between David and I and I'm the oldest in the family, so , um, yeah.
I mean, we just love , uh, he loves coming over to my place, have , have staying over having a sleepover and mm-hmm . going to the beach. Um, 'cause I live not far from White Rock Beach, so we love going out for walks and yeah. Just being outside, it's just a really nice way to spend time with each other. Mm-hmm . . Mm-hmm . Yeah. And just spending time Yeah. Out in the community really.
So it's great that way. Mm-hmm. . Yeah .
Great.
I hope what parents are hearing from this is that siblings can have a really good time together when they're adults and it can be a special relationship and bond that matures and grows over time. And, you know, maybe you do some , maybe you watch movies when you were little and you still like to do that, but that's fine. Like , that's a lot of fun and just enjoying life together is , is great.
Mm-hmm. . Mm-hmm . . Go for it , Marla .
Sure. Um, we are not trying to paint a rose tinted picture here, so we're gonna be a little real and talk about the things that maybe we're not so , uh, fantastic.
Growing up with a sibling with Down syndrome, there's many angles that this could take and we're kind of fine with whatever you would wanna share about challenges that came up when you were younger , um, with regards to your sibling , um, in, in the name of comfort, I will go first. Um, when my sister was really small, she was really medically complex and we spent a lot of time doing doctoring for her.
And of course it was important. And of course I didn't understand it appropriately because I was a kid too, so there was a lot of birthdays in hospitals and, you know, hospital stuff that was seemed unfair at the time. And now as an adult, I'm like, well, obviously , you're gonna do the heart surgery or the whatever it was , um, that takes precedent over the sleepover that I had planned or whatever.
Um, but at the time it did feel challenging and unfair . Um, so there I said that one, if anyone else wants to contribute, by all means, go for it. Amanda, I see you nodding. Do you wanna add again ?
Yeah . Um, I am almost eight years older than my brother. Um, so I felt like I had a lot of sort of added responsibility , um, being that much older. So things like , um, you know, coming home after school because, you know, Ian couldn't be on his own, so I'd have to, and both my parents worked, so being home for Ian after school, instead of maybe hanging out with a friend mm-hmm.
, um, so at the time I was a little bit, could get a little bit frustrated sometimes mm-hmm. . Um, and I felt like my friends didn't always understand as well. Um, so that, yeah, that added responsibility was something I felt a little bit
Mm-hmm. . Mm-hmm . . Yeah. That's fair. I see Rachel nodding aton. Rachel, did you wanna add to that?
Yeah, I definitely can relate to Amanda in that respect. Um, obviously the, the age gap is, is smaller, but , um, even still being the oldest in the family , um, that added responsibility and just to add something different , um, I think for me , uh, the challenge growing up for both myself and my sister who is a few years younger than me, for the both of us , um, the real challenge was being out .
And again, like I said before, we love David and I love to be out in the community and, and going out and , and just, you know, going for walks and things like that.
But , um, the challenge for me really was , uh, the negative stares and people looking at us in public and, you know, definitely seeing those side eyes and , um, the , yeah, the , just the stares and, and the, the attention, the negative attention that was put on us , um, just because of course, yeah. David is different, right? And people don't understand , um, yeah.
They don't understand that di necessarily that disability and it's just, it's different for people to see someone who looks different than them. Um , so yeah. That, that could be kids, that could be adults. Yeah. We had a wide range and we still do get that attention sometimes from time to time , um, being Yeah. Out , out in the community just doing our thing , so mm-hmm. just
Wanting the grocery shop or whatever.
Yep .
Yeah,
Exactly.
Yeah. So I think that's, that's the main one that I can really think of the challenges growing up and even still that can be present to this day. So mm-hmm. . Mm-hmm. . Yeah .
Lydia, did you wanna add to this? You have a particular situation which you can share as much about as you want to ?
Yeah.
Yeah. So ,
Um,
Yeah, I kind of relate to you, Marla, with the
Hospital visits. Um, when
Becca was 10, she was diagnosed with leukemia.
Um,
So I would've been about 14 at that time.
And , um, you
Know, a lot of ,
Um,
Experiences that I, that I think most teenagers have, I wasn't able to mm-hmm.
, um, just
Because, you know, Becca was in the hospital, so one of my parents was always with her mm-hmm . . And then I also had a younger brother who has his own numerous , uh, disabilities as well. So the other parent needed to be very focused on him mm-hmm . . Um, so that was very difficult for me.
Um, I'd say at the time I was, I , I was very mature as a as a younger person, and I , um, really cast aside my needs at that time. And , um, you know, a few years later is when I really started to unpack all of that in therapy, . But , um mm-hmm .
, um, you know, at the time, you know, when you're the oldest sibling and you love your siblings, you you wanna do everything you can to help them and help your parents. And , um, yeah, that was very difficult, I think. Mm-hmm . looking back later , um mm-hmm . , you know, just recognizing that I did miss out on some things.
Yeah. I think parenting is a, is a big theme , um, is particularly for older siblings. Amanda kind of talked about it too to a , a different degree and a different angle on it, but the need to be responsible and also to defend your sibling who might look different like Rachel talked about, or , or be noticeably different. I mean, there are so many differences that you can't just automatically tell.
Um, but there, there is a bit of caretaking often that happens too . And, you know, I remember keeping an eye out for my sister at school to make sure that that was all going down smoothly and that there wasn't anything that looked like mistreatment or problem solving. 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?
Oh, probably that person. Um , I did not, no , I mean, that was a different person, but I got called in on some of those situations too.
Mm-hmm . , Sarah , did you , and I think , oh,
Sorry, go ahead, Hannah .
No, I was just gonna say that I think Lydia brings up such a, a valid point that you're, sometimes you feel, and I didn't , I don't have a sibling with down center , but I did have a sibling with a developmental disability. And I think you feel kind of stuck because you don't want, you feel guilty for having those feelings and mm-hmm.
, they're completely valid feelings because they are your feelings, but that push and pull that you're stuck in between. Like, you know, you're like, I should be, it's my sibling, they need my parents' attention. But of course, you also need your parents' attention, so that can be a really tricky thing to reconcile as well.
So I know that the people that are hearing this are feeling validated and feeling like, okay, I'm not the only one that feels this way. Mm-hmm . . Yeah. So I just wanted to kind of add that in there. But yes , Sarah , go for it.
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 that this was purely for my enjoyment for you,
, yay me,
So great .
And only now that I have a child of my own, do I realize how much , um, additional support Andrew had and Andrew required. I don't, I don't know if I was just really naive back then, I probably was, but I didn't recognize that in Andrew. I just thought every child needed this and I thought we got it as well.
Um, but as, as others have said, I think one of the, one of the times that I really realized that Andrew was in an inverted comm different was when people started staring at him, because I didn't see the differences. He was just my brother. But going out and sort of feeling like I had to defend Andrew mm-hmm .
,
Um, and defend, you know, our family
Yes.
Was difficult. But then I also think it was more difficult for Andrew because they were staring at Andrew. Um, and, you know, in all of that, as other people have also said, I think I am probably a more and became mature faster than my friends. And maybe because of that my friends didn't necessarily under, we didn't always understand where each other was. I had matured in certain ways, not in other ways.
Um, but there was nobody else to really talk to about it amongst my friends group. They loved Andrew, they knew Andrew, but they could never really understand what it was like to be , um, a sibling. And I'm so happy that I am a sibling, but having someone to talk to about it, especially when I was younger, would've been other than my own, you know, other than my sister. Mm-hmm.
, you
Can't talk to your sister about things like that , um, would've been really helpful.
Yeah. Mm-hmm .
,
I, I agree. Um hmm . I lost my train of thought there. I was thinking about, oh, did anybody else have to develop a hostile look like a hostile look to just give people the message that like, 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. Um, I sing a lot of smiles and nods from that one.
Does anyone wanna comment on , what you did to sort of come to defense of your family and your, you know, freedom to go out and buy food and go see a movie?
I was thinking about this the other day. I remember distinctly walking down the street one day , um, with Andrew holding his hand. Um, and people were obviously staring. It was probably one or two people, but it felt like everybody and Andrew squeezed my hand and said, it's okay. Oh . And just realization that it was like, oh, yeah, like, you are seeing this more than probably I am mm-hmm .
,
But he deals with it every day and has sort of developed this hard skin about it. Mm-hmm.
.
Um , I think that really shaped, I I still gave him the death stare, don't worry. Um , but that has sort of shaped the way that , um, that I perceive it. Like yeah . If he is , he's grown up with it. He sees it every day .
Um, and he's managed to develop this sort of, this counter reaction, which is almost, you can stare at me, I'm gonna say hi and try to make you my friend and make you realize that I'm a person too. Yeah .
Mm-hmm.
And leave it, leave it
To
Our guys to make us feel better about something. Right. Like, it's, it's just so classic. Like,
I teared up when
You said that. 'cause of course he's gonna be like, it's okay sister. It's okay.
Like, that's
Pretty amazing. Yeah.
Uh, I would like to talk a little bit about that . Um, yeah , Becca Becca's autism specifically is , um, pathological demand avoidance. Um, which means she basically refuses to , uh, listen to directions.
Um, so there's been numerous incidents of tantrums being thrown in public and , uh, um, I've gotta say I'm not a very, like, confrontational person in general, but , um, you know, Becca doesn't care what anyone else is doing. And I think I kind of learned to adopt that from her almost when she is acting out. Like, I'm like, well, yep . This is how it is. Like, so yeah. Yeah . That kind of reminded me.
She, she also kind of inspired me to mm-hmm . to kind of just not care what other people are thinking, so mm-hmm. ,
It's a really healthy way to go about it because getting mad about it every , like, it's all day every day that people are gonna notice you and mm-hmm . , unless you wanna stop and have that conversation every five meters, then gotta develop a way to move on with it.
Um, is there anything that your parents did or didn't do when those situations were happening that either helped you or like notably did not help you , um, that you think would be valuable for other families to hear about?
I think my fam , my parents had the same attitude towards things. Um, you know, occasionally if, like, we had one incident at the hairdresser , uh, where a lady was extremely rude to Becca , um, just , uh, freaking out that she was having a tantrum and Becca actually ended up just going right up back in her face and saying , I don't remember exactly what she said, but she basically defended herself.
And my mom was like, yep , that's, that's how it's done. Like . Yep . Good
. Absolutely. I remember a lot of just cruising on by for some reason, target comes to mind. I grew up in the States and we would just like have her my sister in the cart 'cause she was way smaller than us and we would just like, we would just keep going. Yeah . And we did not have time to stop and address every single stair. We just went
About our business. Um, everybody's nodding. You've all done it. You've all experienced it
Too.
Oh yeah. You know, I mean, kind of leading from that , um, what advice would you guys have? I would love to know what advice you have for parents first, then I'd like to kind of also ask what your advice would be for other siblings that are listening. But let's kind of talk about what would you say to parents who are trying to promote a happy, healthy sibling relationship?
Rachel, did you wanna start us off on that one?
Sure. Absolutely. Um, I think the biggest thing that I've noticed over the years , um, with David is just really finding, finding that community. I mean with D S R F , of course, David has been here and, and been working with this, this organization for so long now.
And just to see the progress and the, the changes in him , um, when it comes to communication and just really being able to express himself communication for, for him anyways , has , has been a huge one. Um, 'cause of course, yeah, in the beginning for him when he was very little, he was not able to communicate.
So for him to have been able to build on those skills, I think for parents just to really try to continue to stay persistent and patient with the process , um, it , it , it , it takes time and , and that's where it can be really challenging. 'cause you think, oh, like, is this making a change? Is this improving anything for my child? And I think really just cons , yeah.
Staying consistent with it and finding, finding that that group, that that organization that can, can really benefit your child and, and really investing in those, those resources. And , um, yeah, I think that has been extremely helpful for David over the years in , in just improvement in , in being able to express themselves and communicate. And that really leads to so many things , um, as someone grows up. So mm-hmm .
,
That would be my advice , um, that I can think of. Yeah. Mm-hmm.
. Yeah. It's like that building that village around your family so that not only can like we, we'll fight for you. Right. So that , that's what I say to our parents, so I'm like, let us know we're, we're here for you. We're gonna advocate for you as well, and we're gonna be on your team. So that's a really great point. Yeah. Amanda, or did you wanna kinda add something to that as well?
Yeah. Um, one thing I really appreciated from my parents was their , their kind of openness and their honesty. Um, you know, I remember when he was born, they sat me down and my, my other brother down with the book and they were like, you know what? Ian has down Syndrome 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 and we just have to be patient. And , um, you know, growing up they didn't hide the school struggles. They didn't, they were just very open and honest with us and I really appreciated that. Um, and they just really encouraged us to talk about any of the feelings we had or any of the
Questions
We had. You know, they took us to appointments. Like they took me to my brother's speech appointments if I wanted to. They didn't force me, but I wanted to, so they took me , um, and they were just very, yeah, very open throughout him growing up and I really appreciated that.
I do think it is a bi-directional
Thing,
Right? If the parents feel well enough to be open about the needs of the child with the siblings, then the siblings can respond to that and also feel open about their own needs and mm-hmm . their questions because siblings do have questions if parents think they haven't noticed, they've noticed and they need to be able to ask questions and be met with sort of a non-judgmental thing because after all their kids, right.
And so they're not gonna like everything that the sibling does , um, but they need to be able to talk about it or understand it. Yeah, exactly. Mm-hmm. , mm-hmm. . Mm-hmm . . Absolutely. Yeah . Yeah .
Sarah , what Amanda was saying, I , I remember on the way to the hospital, my dad picked us up and took us and said, your brother has Down syndrome. I have no idea what that meant, but , um, from day one , uh, 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.
Um, but at the same time, my parents were really , um, really open about getting us involved in, in Andrew's care in his day-to-day. Um , I used to dress up Andrew in my doll quotes and put 'em in my doll prep , and I dunno if my mom was in the room, , but letting us have that grow, that relationship. Um, I used to go to Andrew's sign language classes , uh, when he was learning how to communicate.
Um, and then just, they let us have that typical , um, sibling relationship. We didn't always get along. Um, and it was okay to fight. It was okay to treat Andrew like any of our other siblings that we would've mm-hmm . , you know, never anything physical, but, you know, getting frustrated when he was taking up too much attention or, you know, being involved with his first year of kindergarten , um, and mm-hmm .
and feeling like he was a sibling and not , um, not something that needed to be put into last case. Um, so not anything different from, from my sister and I and our relationship. Mm-hmm.
, I think so many of these piece , this wonderful pieces of advice can kind of spill into what you could advise other siblings as well. But like, I would love to hear from you all, what would you say to, 'cause it is a , an I think if I'm not mistaken, everyone here is an older sibling, right? So to some degree there is that
A little bit of level of like, okay, it's my younger brother or sister, you know, they're going through this, this and that, and I have to understand, but what would your advice be for perhaps the younger siblings as well , um, and how they should navigate having a brother or sister with, with Down syndrome? Mm-hmm. ,
I have a really , um, common piece of advice that I give to families on this one. Um, and particularly younger siblings, which is it's okay to take up space. Um, you're a kid too and you shouldn't give up your childhood , um, in this or be really torn between the needs of the sibling and what will be easiest for your parents.
Um, one thing that I often recommend is a way to get some one-on-one time with your typically developing children is to pull them out of school every once in a while, not the end of the world. If they miss a day of school every semester to have one-on-one time with a parent that they wouldn't normally get because their sibling with Down syndrome needs constant care.
And that's a really great and regular way to just connect with your other children and you know that your kid with Down Syndrome is safe and secure and you don't have to worry about the babysitter thing. Um, so I recommend that for everybody. .
I think it's inevitable as a sibling
Of
Somebody who has Down Syndrome
To
Become a compassionate person.
You
May not be compassionate when you're five
And that's
Okay,
But
As you grow up,
You
Are going to become a more compassionate person than I think you would have otherwise.
Mm-hmm.
. But I also think that it's okay to have moments
Or
Days
When
You are not feeling that compassion
When
You, as you said Marla, I just need to take up that space and, and be a kid.
Mm-hmm. . Yeah. Mm-hmm.
. And that's okay. I think a lot of our siblings feel a lot of , um, guilt or grief around it. And I am here to say it's okay to be a kid. , for sure. Lydia, what did you wanna add?
Yeah, I was, I was thinking similar things. Um, 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. Um, you know, I felt like that that was a very, like, good thing about me or something. Um , and I think I definitely made some sacrifices that my parents didn't even require me to make mm-hmm . .
Um , just because I really wanted to be the best sibling I could be. And , um, and then, you know, as a result of that, I didn't enjoy my childhood in certain ways that I think I could have otherwise. Mm-hmm. ,
Rachel, did you have anything that you would say to a younger sibling that is having a hard time navigating that relationship?
Relationship ? I think for me over the years , uh, I've really just tried to find things to do with David and just getting to know him more , um mm-hmm . finding activities , um, that just, yeah, meet him where his needs are. Um, I , I think that's just been really helpful over the years in , in building the relationship.
Um, I mean, for us, yeah, just focusing on the relationship as far as building it on love and respect for each other , um, and just really continuing to, yeah, just be patient when, when those, those harder moments come, come our way.
If, you know, if if like a behavior would come up when he was younger , um, just working through that, navigating that, navigating through that as best we could , um, really just, yeah, continuing to just build like autonomy for him as well.
Um, and, and then what I mean by that is just , um, finding, giving him a couple of options, I just, yeah, I think the resources and the tools that my, my family, my parents were able to , um, get through D Ss r f have been really valuable for us as siblings, for my sister and I to work and, and get to know David more and, and work with him and, and have that relationship with him. So, mm-hmm . . Mm-hmm. .
Amanda, did you wanna add anything?
Yeah, I think it was kind of mentioned earlier if you can find other people who are siblings , um mm-hmm . , I think 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. I met her in grad school.
Um, but it was just, it's kind of a bond on unlike no other, somebody who understands the joys, but also the fears and the challenges and can just relate to your experience. Because I feel like as much as people try to understand, they, they just don't necessarily , um, and I wish I'd had her a lot earlier on in my life.
So if you can find some way to connect with other siblings , um, I think it's really beneficial.
Mm-hmm. , there are some programs that exist that we will put a link to on our resources page. Um, one that comes to mind is something called Sib Shop , um, for families out there. I think it's primarily in North America, but it's something worth looking into. The premise is that it's a siblings only event.
Um, and every sibling there has somebody in their life with a different kind of need, any kind of disability, and they just have fun. They just enjoy each other's company. There's a little bit of chatting about what do you like about your sibling? Do we all have things we like? Yes. Do we all have things that annoy us ? Yes. And is that fine?
Yes. And , um, it just kind of makes space for those friendships to develop and for people to meet each other. Because often I think that's the real challenge is, you know, there's other siblings out there, but where are they? You know, if there's not another person with Down syndrome in your school, well where, where are those people? Right? And there, there are some ways to work around that.
So we'll put some links on our, on our page for that.
I would love to go around and ask
Everyone the
Big question, what do you hope for your relationship in the future? You know, there's lots and more years of fun activities of living to do, and I would love to to kind of go around and ask each of you what you would like , um,
To,
What would like to learn more, what you'd like to understand more about your sibling, but what does the future look like? So Marla, why don't you start us off on that one.
Well, I am one of the options for my sister's care for the longer, long-term future. So I anticipate always having a really large role in her life. Um, I think we'll keep jamming on ukulele, you know, we'll keep talking about musicals. We will keep dancing and having spa dates. I think all of that will still be around. Um, I just can't wait to see her grow into an adult.
Um , 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. Um, like she says, her lipstick is popping, so she's ready. ,
She's ready to go. Uhhuh . Oh , love it . Sarah , what about you?
Like Marla, I am also the, the ultimate Care plan. Um, and so part of that is continuing to be part of entry's life as he evolves. He already is an adult, but I'm older than him and I think I'm still evolving . Um, but whatever Andrew needs , um, 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 , um, and all the things that Andrew teaches her and , uh, that she's going to start to realize about what a special person Andrew is. Um, 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.
Um , but just making sure that Andrew has the people that he needs around him, giving him the supports that he needs. Um, and that might be anything from finding a volunteer opportunity to being somebody who he can talk to about hockey. That's not me, that's not my position, . Um , but , um, just making sure that he has what he needs as he sort of matures into more into adulthood.
Mm-hmm . . Amanda, how about you?
Um, very much the same as Marla and Sarah . Um,
I hope
That we can continue to have,
You know, despite the
Distance, we're pretty far apart. Um,
Just
Continue to have our, our FaceTime chats and , um,
For
Him to feel like I'm someone he can confide in.
Um,
And someone who is always, always there to listen. Um,
Can't wait to
See what kind of
Job he
Ends up taking , um, and just where
The future takes him.
But , um, yeah, well it's very similar as well with all the other ladies here. Um, I think for me, just to add, I, I am really excited to see , um, what, what the future holds for David as far as work employment. He's super excited to find
A job.
Um, and you know, and that may very well be volunteer as well, so having a job and then securing employment is, is a big, a big one , um, that we're working towards right now. Um, and of course with David, he's in the reading and communication program with the S R F , along with, he will go through scan, I'm sure. Um, so yeah, it's , um, it's, it's exciting to see where his future will be.
And then yeah, just figuring out , um, his living situation as well. That's something that , um, our family is, is figuring out as well. So there's lots in the works , um mm-hmm . and yeah, just continuing to , um, build on what we have. Um, and yeah, I'm , I'm excited about it. That's, yeah, that's really all I would add onto that. Very similar to everyone else there, so, yeah .
Mm-hmm.
Wonderful. And Lydia. Yeah. So , um, Becca is looking to move into kind of an assisted living type situation in the next few years. She's just finishing up high school now, so I, I'm really excited to , um, continue to develop our more adult sibling relationship. Um, I think we've only really started developing that in the last couple of years.
I'm finally able to like, have a full conversation with her and like go out and do things, just the two of us. And , um, she's just so much fun. So I'm really enjoying that and looking forward to that. Um, I'm sure eventually way , way in the future when my parents are no longer around, I will also be, you know, a big, a big role in her , uh, care.
But , um, for now I'm looking forward to just having fun with her. Yeah. The good stuff. The good stuff. Exactly.
Yeah. Well, we wanna thank
You all so, so, so, so much for being open and honest and vulnerable and really letting our listeners into your, you know, your experiences and introducing them to your amazing siblings. Uh , it's, it's really been a great time chatting with you. Um, and we hope to maybe have you back on again for like an update one day 'cause it'll be great to kind of follow up .
Maybe we should have you on with your siblings next time. That'll be an entertaining one. Banter, . A little banter. That'll be fun . . Uh , but yes, but thank you so much for taking the time and really appreciate it. Thanks
For having us. Thank you . Uh , thank you. Thank you.