Customers at “Sarah’s Delicious Imperfectionz” food truck sometimes say to Tommy or Annette Casey, “you’ve got great help there” while nodding towards their daughter.
The couple are not slow to put them right: “Actually, we are the helpers.”
They are very clear that their daughter, Sarah, is in charge of this confectionery business and, although she was born with Down syndrome 21 years ago, it is not a charity. “Sarah’s products have to stand on their own because, otherwise, you get the 15 degree head tilt from people and they go, ‘ah, isn’t that lovely’. They’ll buy one and they won’t come back,” says Tommy.
It is two years this July since Sarah started selling home-baked muffins and scones at Castletroy Farmers’ Market in Co Limerick. Tommy, who runs his own marketing and branding business, chose the name, to reflect that, at the outset, her baked items were not always the prettiest, but tasted very good. However, a lot has changed since then – not least that Sarah is now very “pernickety”, says her mother, about presentation.
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From being seen at the market, Sarah began to be booked for events, including ones run by Down Syndrome Limerick who helped to promote her business. But Tommy says he always stressed that their daughter “was not the product”.
Candyfloss and popcorn machines were added into the van as bookings for attendance at children-orientated gatherings increased. Then Sarah diversified into making her own ice-cream, which went down really well, says Tommy. Over the past year she has sold this at the Ploughing Championships and other smaller shows, as well as being asked to serve it outside a local church after two weddings.
The enterprise “has boosted her confidence hugely and she regards herself as a businesswoman. She is certainly helping to break the stereotype,” says Tommy.
Her parents would not have been immune to stereotypical views of people with Down syndrome when Sarah arrived into the world on May 17th, 2003, with no prior warning that she was carrying an extra copy of chromosome 21.
That day, three years after the birth of their eldest child David, “we were going into the same maternity hospital and we expected the same result”, recalls Tommy. But “it was totally surreal from the minute she popped out”.
From the look on the midwife’s face, they knew this arrival was different. Within half an hour a paediatrician was at the bedside and “it was just a download then of all the negativity of what comes with the condition and the possible obstacles on the way”, says Annette.
But she will never forget Tommy’s words to her in the hospital. “He said, we’re going to take her home, we’re going to treat her the exact same way as we did our older son David and we set no limitations for her. I remember that resonating with me, and his support was amazing in the earlier days, because I certainly found it difficult for the first number of weeks,” she says candidly.
“You’re grieving for the baby that you thought you’d have,” explains Tommy. “We can look back and say that honestly, because you do.”
They were also having to cope with well-intended but daft platitudes that come out of the mouths of people who don’t know what to say. “They end up saying things like, ‘oh, they’re only given to special people’. It’s like they’re handed out at the checkout. It’s not what you want to hear,” says Tommy.
“There was a lot of that,” agrees Annette, who works as a legal secretary. “But again, you’re talking about 21 years ago.”
However, under an early intervention service being piloted by the HSE at the time, they were assigned a key link worker who proved to be a huge support. “She was fabulous and that certainly helped in the earlier days,” says Annette.
They believe Sarah was born on the cusp of significant change in societal attitudes towards children with Down syndrome. She was able to go to the same national school as her beloved big brother, but, as any parent of a child with special needs will tell you, says Tommy, you’re always fighting for extra assistance. From there, Sarah went to the Catherine McAuley School in Limerick, which caters for students from ages eight to 18 with a mild or borderline mild learning difficulty.
“That, in one respect, was a different experience, because she was out of her community,” says Annette. “Everybody knew Sarah when she was in her local community.” But in the city school, children were “fed in and fed out” from surrounding counties as far as Kerry, “so it was very difficult to make friendships and keep friendships. It was just a whole different dynamic, to be honest.”
However, the school was excellent, well resourced and proved to be a very positive experience for Sarah, says Tommy, who was invited on to the school’s board of management last year. But once their daughter reached 18, they faced the “cliff edge” that so many parents in the Caseys’ position talk about.
Sarah started attending a vocational education service but it didn’t suit her. Tommy and Annette, recognising that she enjoyed baking, organised for a professional confectioner to come to their home and teach her over several months on how to do it “properly”. She started with muffins and scones and before long they had sourced what Sarah calls her “bun truck”, which put her fledgling business on the road.
It is estimated there are 7,000 people in Ireland with Down syndrome but there is no national register of people born with the condition. Down Syndrome Ireland (DSI) has been lobbying for the establishment of such a register, as there has been in the UK since the 1980s, to enable effective planning and delivery of services.
There used to be no clear pathway for people with Down syndrome beyond the age of 18, says Nichola Aylward, chief executive of DSI. But where once it was a rarity that any of them would go on to third level, that’s now becoming the norm.
A DSI adult education team runs initiatives in literacy and work skills, while a separate employment team works with both potential employees and employers.
“Everything is focused on trying to find the area of interest for the person with Down syndrome, appropriate third-level courses that focus on literacy, personal development and moving people towards being suitable and able to take up a job in the workplace.
“As that’s happening, the employment team is working on finding employers who are willing to offer a job to a person with Down syndrome because there are supports needed in the workplace to facilitate that.”
In 2018 DSI research indicated that less than 6 per cent of adults with Down syndrome were in paid employment. The DSI employment team has secured paid jobs for 125 adults and aims to have another 200 adults in meaningful employment by the end of next year.
Aylward says there has been an “incredible welcoming attitude from employers”, ranging from Woodies and Ikea to the Grafton Barber and Dalata Hotel Group, and many more.
Invariably, they report how their new worker has had a positive impact on other staff.
“It’s a win-win for everybody and I think the proof of it is that when employers engage with us and take on one person with Down syndrome, we’re finding they’re coming back, especially those with multiple sites, and they’re interested in taking on more.”
While paid employment would not suit everybody in the Down syndrome community, it needs to be an option, she stresses.
When Aylward’s own daughter Elizabeth was born 11 years ago with Down syndrome, she says, “I don’t think I could have raised my eyes to the horizon.” But having been involved with DSI as a parent, before becoming its first woman chief executive last May, she sees all the progress as “incredibly heartening”.
From a young age, Sarah Casey hated people, particularly other children, staring at her. “She is very aware of her difference,” says Annette. But now her daughter sees those children she used to give out about in a whole new light.
“They are my customers,” says Sarah as she joins in the phone conversation on speaker with The Irish Times from their home in O’Brien’s Bridge, Co Clare. She lists off her current line in ice-cream flavours: “I have Maltesers; marshmallows and jelly tots; vanilla; mint Aero; and I have raspberry ripple.
“My favourite is mint,” proclaims Sarah, who has more than 500 followers on her business’s Instagram account. One of her favourite parts of work, she says, is making popcorn, now that she can manage the hot machine on her own. “When we’re very busy, the steam is flying off her,” laughs Tommy.
They have stepped back from the farmers’ market where initially Sarah was one of the few doing baked goods, but now there are many more. Instead, she bakes muffins and scones to order from home as well as developing her ice-cream, which she supplies to neighbours and now some local outlets. Tommy reckons this is the most sustainable aspect of the enterprise. If it can be steadily scaled up, “there’s no reason to not think that she could have one or two of her buddies helping her in the business”.
Sarah is a great example to maybe some parents who didn’t dare to think they could do something to give their kids autonomy
— Tommy Casey, Sarah's dad
Although Tommy had no wish to be involved in any organisation after Sarah was born – “I just wanted to be in my own bubble for a while” – the couple soon realised what wonderful support Down Syndrome Limerick and other families provide. “We’re walking the same road, we’re sharing experiences,” says Annette. “I’ve always looked up to parents who are maybe just a little bit further down the road a year or two and I always take cognisance of advice from them because they know how to do it.”
Sarah has benefited from many of DSI’s services, including speech and language therapy, occupational therapy and youth groups. She is now halfway through Latch On – a two-year literacy programme developed in Australia, which DSI introduced here and the Education and Training Boards now deliver.
Her business is one of the sponsors for the Tour de Munster, which will run from August 8th-11th and is a vital annual fundraiser for the six DSI branches in that province. More than 100 cyclists, including the legendary Irish racer Sean Kelly, cover a 600km route through Munster’s six counties, generating much-needed funds for DSI and other charities. Aylward pays tribute to organiser Paul Sheridan who started the event in 2001 and has overseen the raising of almost €5 million for charities.
Meanwhile, the Caseys see life with Sarah as an adventure for them all. “She’s constantly surprising us,” says Tommy, recalling the morning she walked out of the livingroom and said “let’s go surfing”. He picked up the phone, booked a lesson at Inch and off they went. “The instructor said afterwards: ‘You’ve got to get her own board; she would not give up.’ She gets that stubbornness from her mother ...”
“I’ll take that as a compliment,” Annette quips, adding: “She sees no limits.”
Nor they for her. “We’ve just given her a launch pad,” says Tommy, who believes more public education is needed for greater recognition of people with Down syndrome as individuals rather than a homogenous community.
“Sarah is a good ambassador and, without sounding glib,” he adds, “she is a great example to maybe some parents who didn’t dare to think they could do something to give their kids autonomy.”
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