He ain’t heavy, he’s my brother

The brothers and sisters of children with special needs are often unsung heroes, but they want you to know that they and their siblings are the same, really. Sarah Caden speaks to a sister act and a pair of devoted brothers about a very special sibling ri

Kids with DS and their siblings reflect on their relationships

In the hours after my second daughter was born, seven-and-a-half years ago, few of my thoughts were of her. It was nothing personal; I hadn’t even held her yet, or really looked into her face to see the signs of Down syndrome that had set the medical team off in the delivery room. Instead, I thought about her older sister, Anna, who was two-and-a-half years old at the time, and, specifically, what I had done to her.

That was how my shocked mind functioned that day. I said it out loud. “What have I done to Anna?” Saying it out loud helped. Saying it out loud let me hear how mad it was, and then came this moment of clarity. I remember it as clearly as this morning. This wasn’t a disaster for Anna. It would only be a disaster if we turned it into a disaster, and it was up to us, her father and me, to make it anything but.

She had wanted a sister. We had wanted a sister for her. She had a sister. And she would never know her sister any other way than with an extra chromosome 21. To Anna, Mary was just a sister, the same as any other.

It was never kept from Anna that Mary has DS. It was always spoken of freely. It was explained to her, once she asked, at about age three, that Mary would need extra help with things: she would do all the things Anna did, but she would take extra time and need extra help. We bought the DVDs of Punky, the Irish-made cartoon about a little girl with DS, and she brought them to school to show her class. In the intro to Punky, the cartoon figure explains how she likes dancing, hugs and her family and, as a side note, has Down syndrome.

“You have that,” Anna would say to a Mary too young to comprehend.

“I have that,” Mary would say herself in time as she watched the now almost terminally scratched DVDs.

Today, Anna is 10 and Mary is seven. Anna understands a lot about Down syndrome. Mary will tell you happily that she has it, particularly if she hears it mentioned on the TV or radio. She doesn’t yet understand this entirely, but that doesn’t matter. It’s not the most important thing in their lives. It’s there, but it’s not all that’s there.

More important than that extra chromosome is that they are sisters, who attend the same school, have lots of the same friends, have things they love to do together and things they love to fight about, again and again. They share a room and don’t want to go their separate ways yet — both frank about the reassurance they get from the sound of the other’s sleeping breath if they wake in the night. They bicker over parental attention and who stole what from whom, and would fight tooth and nail anyone who said boo to their sister.

They’re just like any other sisters, but then, of course, they are not. That, however, is not necessarily a bad thing. Last year, at a conference about siblings of people with special needs, several things struck home with me. One was how a panel of adult siblings had such good things to say about their childhoods. Another was how important it was to have a community in which a sibling can be totally honest about their experience. But the most important thing that struck me was that the siblings will know our children with special needs for longer than we will. You can never underestimate how clearly, regardless of age, the siblings understand this.

Again, this is not necessarily a bad thing. But a lot of that depends on how you live it. Siblings who grow up with a shared feeling of being loved, a sense of being equal, and equally loved, will always do better.

Siblings who recognise the differences but also know the similarities, will do better. Hence this year’s annual World Down Syndrome Day campaign on the part of the Down Syndrome Centre, which focuses on the relationships between siblings and, in particular, on how they want you to see that they are the same.

Through a two-minute video — which you can watch now on independent.ie — 10 sets of siblings, one with Down syndrome, one without, show off the things they like to do together and talk about what they mean to each other. “We’re not different,” they say and sign. “We’re the same.”

My two daughters are the same as your kids. They are different — one has curls and wishes for her sister’s poker-straight hair; one is allowed now to walk to school alone and the other wishes to be big like her; one wants to keep her stuff tidy, one wants to mess it up more than anything in the world. They are the usual differences.

The unusual one is that when you look at them, perhaps, all you see is the other, more obvious difference. But trust me, they won’t let you away with that, because my girls, just like the siblings on these pages, hate nothing more than if you treat the child with DS differently.

They’re not different, they’re the same. Don’t you forget it. And neither will I.

Lydia Corley (eight) and Sophie Corley (seven)

There is a mere 18-month age gap between Lydia and Sophie Corley. Still, Lydia says she remembers when Sophie was born.

“The most annoying sister ever,” she says with a cheeky

smile and a twinkle in her light-brown eyes.

Sophie, sitting beside her and so close that they are touching, laughs heartily. “Yes, annoying,” she agrees.

Lydia says she remembers the first holiday the family took together, with Sophie still being tube-fed. Sophie had been born five weeks early at only 4lbs 7oz, and spent her first three weeks of life in hospital. She was also born with Down syndrome, so Lydia maybe has some sense of a home of heightened emotion in that time.

Lydia worried a bit, she says, and then lists off the operations Sophie has had over the years.

“She had her tonsils done and her adenoids and her head cut open!” Lydia recites gleefully.

The girls’ mother, Sinead, sitting beside them on a beanbag in the physio room of the Down Syndrome Centre in Cabinteely, cringes at the last bit.

Lydia turns to Sophie and lifts up her sister’s hair to expose the Bone-Anchored Hearing Aid (Baha) that comprises a titanium implant in Sophie’s skull, over which the skin grows and a magnetised hearing aid is attached. Both girls are so matter-of-fact about it, both sort of proud of their blithe attitude. And also, so very, very at ease in their sisterly intimacy. Lydia and Sophie used to share a bedroom. “It was fun,” says Lydia, “but it got annoying.” “The bunk beds were noisy,” says Sophie. “I was the baby that woke Lydia up.”

Now, Lydia has the bunk-bed room to herself and Sophie has her own room. It’s opposite her parents’ room, so that if she’s restless in the night, as children with DS often are, she can easily wake them instead of her sister.

In the ‘Same as our Siblings’ video, Lydia and Sophie dance to This Is Me, from The Greatest Showman. They do the dance for me and they’re pretty good. The sisters love to play together.

“I play with Lydia,” Sophie says. “Barbies and police. Lydia is in jail.”

“She’s very rough with it,” says Lydia. “She’s a natural policeman.”

“And babies,” says Sophie, adding, no surprise, that she’s the boss and Lydia is the baby.

Sophie attends the Down Syndrome Centre for occupational therapy and speech therapy. Lydia comes to the appointments sometimes, especially if she can get to play with her on the occupational therapy equipment. Certainly Lydia is as comfortable there as Sophie, and says that she has met friends there who also have siblings with DS, and she likes that. She likes the unspoken understanding that she might not get with other friends.

Last September, Lydia was the only child to walk the full 21km of the fund-raising Challenge 21 walk for the Centre. “I did it for my sister, to help her,” Lydia says. “Aw,” says Sophie, and we all laugh at the touch of the drama queen to the rush of emotion.

Lydia and Sophie both attend Hollypark school in south Co Dublin. Lydia is in second class. “And I’m in senior infants,” says Sophie. “I do my Irish, my maths, all of them. And PE. Lydia has the same uniform and I have the same uniform.”

“I was excited before Sophie came to school,” says Lydia, “because I thought that we’d be together more, and that she’d be in the same yard and we’d get to see each other a lot. But it wasn’t like that. It was completely different to what I imagined. She was in a separate yard and they wouldn’t let me near her.” Lydia seems a bit put out, and Sophie gives her a hug. “I wanted to be near, to make sure that she was OK,” Lydia says.

“It wasn’t to mind her,” she adds. “It was more to make sure that everyone wasn’t treating her like a baby, because she isn’t a baby. It’s annoying, because people sometimes treat her like a two-year-old and she’s not. She’s not two, and she shouldn’t be treated like that. She should just be treated normally.”

“She has Down syndrome,” Lydia says, “but just a bit. It doesn’t affect all things. Like, she can learn well and play well and she listens and she can talk. So you should treat her like a seven-year-old.”

“I’m not a baby anymore,” pipes up Sophie. “I’m seven.”

On the Sunday before we met, Sophie Corley celebrated her seventh birthday. She had a cinema party with the movie Paddington 2, with all the friends from her class and a gang of her friends who also have DS. Sophie had a ball, and Lydia kept everyone in order.

Lydia is a great one for organising birthdays, their mum says, and left all the presents outside Sophie’s door on her birthday morning. Lydia gave her Frozen gifts and made her a necklace and a special card.

“It said, ‘Happy Birthday, Sophie. Love, Lydia,’” Sophie says. “This is my best sister ever.”

Cormac Bennett (seven) and Adam Bennett (four)

Adam Bennett’s first word was “Cormac”. Or “Bockock”, as he pronounced it then.

This comes as no surprise when you spend some time with the Bennett brothers. There’s a huge physicality to their relationship as the pair literally bounce around a room together, and there’s something very connected about how they seem almost synchronised in a rough-and-tumble relationship where no one gets hurt.

It’s rowdy, but it’s not rough. They’re not opposing forces, they’re a unit.

There are just over three years between Cormac and Adam, and they play very traditional brotherly roles with one another. Cormac is the leader and Adam is in awe of him. But Cormac is also more responsible, while Adam is a scamp.

This last piece is to do with their place in the family, of course, but you could read more into it, too. Adam has Down syndrome and Cormac is very protective of him.

Over a year ago, when Cormac was only six, the boys’ mother, Sharon, was surprised to hear how seriously he took his commitment to Adam.

“He asked when me and Daddy were going to die,” Sharon recalls. “I said that it wouldn’t be for a long, long time, and he said, ‘Well, me and Adam will live here in this house; but I’ll build an apartment for Adam, in case I want to get married and have children’.”

Sharon admits she was taken aback by the depth of thought Cormac had put into this plan at such a young age, but also the fact that he took it as a given that Adam was part of his future.

This vision of the future is helped for Cormac by the fact that he thinks he has the best brother going. He’s happy with the idea of keeping Adam around because, as Cormac puts it, “he’s funner than most brothers”.

Cormac lists off the ways that Adam is “funner” and concludes by explaining how their favourite thing is to go upstairs at home to the “ball room”.

“There’s gym balls up there and we kick them all around at each other,” Cormac says, as Adam nearly lands on his head in the Down Syndrome Centre’s plastic-ball pit.

Every second Friday, Adam comes up from their home in Wexford for speech therapy in the Centre. Sharon works Monday to Thursday, she explains, and can get up and down to Wexford on her day off while Cormac is at school.

Adam is working on his pronouns, she says. “All the things you never think of,” Sharon says, “All the stuff that just happened without thinking with your other kid.”

Cormac helps Adam with his words. “I do pictures of things with him and then he says what they are.” The boys also do a bit of Lamh signing to each other, but Adam is growing out of that a bit now. What does Adam like to play with Cormac? “On my bike!” Adam exclaims. “It’s a yellow one.” “No! It’s red!” says Cormac. Adam has a balance bike and a pedal bike, Sharon explains, and Cormac’s helping Adam to pedal.

“I like to help him,” says Cormac. “And he nearly has it.”

Cormac is very proud of Adam. He loves when Adam comes down to hurling practice. “Everyone thinks he’s really cute,” says Cormac, “and that’s good.”

Cormac “sort of ” remembers when Adam was born. He really wanted a brother to play with, and Adam ticks all the boxes on that score.

“At some point when I was a bit older they told me that he had Down syndrome. When I could understand. I didn’t mind,” Cormac says, though he agrees with his mother that he gets a bit sad sometimes. His friend has a brother the same age, and there can be moments where he feels very aware how that boy is different to Adam. “A little bit sad,” says Cormac. “Happy and sad.” Cormac is in second class in school in Wexford. The family hope that Adam will start in the same school in September 2019.

“I’d love that,” says Cormac, “because he could play with me there, too.”

There are times, apparently, when Cormac Bennett admits that while he loves his little brother Adam, he hates him, too.

Then, his parents tell him the only thing they can: that this is what it means to have a little brother. Not a little brother with DS, just a little brother.

The Down Syndrome Centre’s ‘Same as our Siblings’ campaign launches in conjunction with World Down Syndrome Day, March 21. Today, exclusively, see the film on independent.ie; and from tomorrow, to watch it, with the individual sibling clips, find out more about the Centre’s work or make a donation, see downsyndromecentre.ie