Down's syndrome charity founder Clare Cushenan on how daughter Aoife has made her a better parent and person

Co Antrim mother-of-three Clare Cushenan's tells Mairead Holland how her experience of having a child with Down's syndrome prompted her to set up Special Delivery, a group which seeks to ensure that every baby is celebrated and that new mothers 'don't waste precious days worrying'

Mairead Holland

Clare Cushenan, with daughters Aoife (8) and Maria (12), was inspired to start Special Delivery to support new mothers of Down's syndrome babies following her own experiences

"AOIFE has taught us more than we'll ever teach her. She has made us not only better parents but also better people."

Those are the simple but poignant words of a Co Antrim mother whose youngest daughter has Down's syndrome.

Clare Cushenan has come a long way since those early, overwhelming days when she gave birth to Aoife on April 18 2013.

In the months afterwards, her initial emotions of denial and worry were slowly replaced by the realisation that she and husband Owen were among what they describe as "the lucky few".

And she is now helping other new mums who find themselves in similar, uncharted territory with a group she founded called Special Delivery NI.

Set up on March 21 last year, to coincide with World Down Syndrome Day - and, as it turned out, the start of the first Covid lockdown - it provides gift boxes to the 50-odd mums in Northern Ireland who have a baby with the condition every year.

The first gift basket was left in Belfast's Royal Jubilee Hospital and, 15 months on, Clare has supplied almost 90 gift baskets to all five health trusts in Northern Ireland.

The boxes are filled with handmade blankets, hats and cardigans, baby clothes and comforters, scented candles and toiletries for the mums and a gift voucher courtesy of Simply Kids Photography.

And, most importantly to Clare, they contain the Wouldn't Change A Thing and #NobodyToldMe books, full of positive information about Down's syndrome and aimed at changing outdated perceptions.

For Clare, the boxes are about much more than physical objects, they are a symbols of hope and optimism.

Aoife helps load up the gift boxes that she helped to inspire. The boxes are filled with handmade blankets, hats and cardigans, as well as books full of positive information about Down's syndrome

She was inspired in part by Cavan woman Sinead Fidgeon whose daughter Grace has Down's syndrome and who delivers similar gift parcels, mainly in the Republic, through her charity, The Perfect Gift.

"I thought it was lovely. Nobody was doing it here. I was hearing of new mums and I thought I would love to help them, so I spoke to Sinead before setting my group up," says Clare.

Looking back on her experience, the mother-of-three regrets the time she spent worrying about the Down's diagnosis, rather than celebrating the birth of her beautiful baby, just as she had with her other children, Michael (14) and Maria (12).

"I had Aoife by planned caesarean section and because I couldn't move I asked them to move her round so I could see her face," she recalls.

"When the nurse left, I said to my husband, 'It looks like she's got Down's syndrome'.

"I didn't want to accept it and I didn't want anybody else to confirm it because it was shocking to me.

"They do blood tests to confirm it but I already knew.

"I was so anxious about what it meant for my family, and for Aoife and what life was going to be like for her."

Clare says that while the midwives were "very nice" most of them "tiptoed" around her.

"It wasn't really their fault because only one in every 800 births is a baby with Down's syndrome so it isn't something they see every day," she says.

"I wanted someone to reassure me but they couldn't do that - because obviously they didn't know - but I wasted too much time worrying."

Part of the problem for Clare was the leaflets she was given at the time. Although well-meaning, she didn't feel they were what she needed.

"They had loads of smiling adults with Down's syndrome and it listed all the issues that people with the syndrome might face, so it was a worst-case scenario," she explains.

"But you've just had this wee baby and you're looking at these adults, seeing way too far into the future, having to worry about what might happen.

"I do appreciate that 50 per cent of babies with Down's syndrome have heart issues and they may have more health concerns than typical children.

"But I spent yesterday in A&E with Maria who had a suspected broken leg. Whenever she was born, they didn't hand me a leaflet on fractures, saying that children sometimes break their leg when they're 12."

The realisation that everything was going to be okay was gradual. "I kept waiting for this awful Down's syndrome to kick in," says Clare.

"But after a wee while, I realised she was just the same as my other two - only a bit more pleasant and less demanding..."

Aoife, who is now eight and a pupil at Castle Tower School in Ballymena, which she loves, is playing happily in the background with Play-Doh as her mum chats on the phone.

Aoife is a 'typical eight-year-old girl'

She enjoys painting, drawing and dolls and, says her mum, is a "typical eight-year-old girl".

"Aoife has no health issues, so we're very lucky. She has a developmental delay which means she will do everything that a typical child will do, just slower," says Clare.

"She has hit all her milestones and she has taught us more than we'll ever teach her. She has made us not only better parents but also better people.

"When she first said 'mummy', when she first walked, those were causes for big celebration in our house. It makes you appreciate life more, it makes you more patient and her brother and sister have a greater understanding and empathy for people with disabilities.

"We rarely think about Down's syndrome - it's just something Aoife has. Rather than it being negative, it's quite the opposite."

Despite not being a "tattoo person", Clare, her husband and another friend have all got 'The Lucky Few' tattoos.

Started by a mother in America, the three small arrows represent the three sets of chromosomes that people with Down's syndrome have and are a symbol of rising up and moving forward.

Clare is also a member of the Down's Syndrome Association, which runs support groups and works to improve the quality of life for people with the condition, as well as local group Little Buddies for children with all sorts of special needs.

"Once parents are ready, there is a great support network out there. They will make new friends, people who have been through some of the same issues - and who are there to support them," she says.

Clare Cushenan has supplied around 90 gift boxes to health trusts

Clare says the midwives she deals with at the various trusts have been very supportive of her gift boxes and she is currently considering ways of providing positive information to parents at the antenatal stage.

She also challenges some of the common language used.

"You often hear the expression, there's a 'risk' your baby may have Down's syndrome, whereas the word should be 'chance'," she says.

"I just want to make sure that every baby born in Northern Ireland is celebrated, that mums feel reassured and that they enjoy their wonderful, new child and don't waste those precious days worrying."

Clare Cushenan funds the Special Delivery gift boxes through public donations and is grateful to everyone who supports her. Donations can be made via her GoFundMe page and more information is available at

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