Mum says Cork branch of Down Syndrome Ireland is ‘worth  its weight in gold’

Eight-year-old Tom Clifford, from Mitchelstown, who loves running and playing football, is a bit like his mum, Mary. He doesn’t hang about.

“I’m just bringing Tom to his drumming class now,” says Mary. “He loves it!”

Mary is on a tight schedule.

“It’s Tom’s last class before I head away with my daughter, Aine, to the World Figure Skating Championships in Italy.”

Tom, who is a person with Down Syndrome, didn’t learn to play the drums at the Cork branch of Down Syndrome Ireland, but he learnt lots of other things there.

“Since the early days attending DSI Cork, Tom came on in leaps and bounds,” says Mary.

He got great support there and availed of speech and occupational therapies to help his development.

“Before he started mainstream school, he learnt how to sit at a desk with his buddies and how to hang his coat up on the peg.

“At his school in Mitchelstown, he is treated like any other student.”

The Tour de Munster has supported DSI and other beneficiaries every year now for 14 years, DSI being the main beneficiary. The cyclists raise staggering amounts every year through their fundraising effort.

The Tour de Munster sees over 100 cyclists pedal 600km through the six counties of Munster for the Munster branches of DSI.

“The cyclists are amazing to take on this challenge for DSI every year,” says Mary.

“The families they support are all indebted to them.

The funds raised from the tour help many children access services they otherwise might not have access to.

When Mary contacted DSI after Tom was born, she learned a lot.

“Because there was no prior diagnosis, I looked up Google for information,” she says.

Did Mary know anybody with Down Syndrome?

“My husband Mike’s cousin was Down Syndrome,” says Mary.

“And a neighbour’s brother. I didn’t know any children with Down Syndrome.”

Tom had a bumpy start in life.

“He was born full-term after a problem-free pregnancy,” says Mary.

“Everything went well after I was brought in at 38 weeks because the baby was transverse. I had a C section.”

Mary and Mike were delighted with their son.

“Tom was born, a baby boy,” says Mary.

“We were delighted when we heard him crying.”

Mary heard something else in the room.

“There was activity at the end of the room, and I heard a doctor mention chromosome 21. I remember I was still being stitched up and recovering from the birth.”

She got to hold her baby.

“I held Tom and his oxygen levels dropped and then he was whisked away to the neo-natal unit,” says Mary.

“He was wrapped in tinfoil because his blood pressure was so low. I couldn’t see him again until the second day. He spent two weeks there.

“The nurses in the neo-natal were amazing,” says Mary. “As was my gynaecological team.”

One of the medical team informed Mary that Tom had Down Syndrome.

“When I was told Tom had Down Syndrome, it was a desperate shock,” she says.

I was on my own in the room with an empty cot surrounded by flowers and balloons. Before I knew it, I had a social worker and psychiatrists there. I had no time to process the situation. It was a lot to take in. It was something I never expected.

There was good news too.

“Tom was a big buster,” says Mary.

“He was 10 pounds! And the scans showed that he had no heart defects that can be common in children with Down Syndrome.

“Tom had his bloods done too which showed a strain that suggested leukaemia. But for now, all was well.”

Tom was ready to meet his big sister.

“Ainé was delighted with her brother,” says Mary.“At home, in our normal bubble, I fed Tom, I changed Tom. I snuggled him, and I cuddled him.”

Mary delighted in her son.

“My leave from the Credit Union was extended for a year.”

A new life for the Cliffords began.

“It was a new normal for us,” says Mary.

“Tom’s first birthday came around and we talked about going on holiday. His bloods were taken every month. When he developed a rash, we were afraid of meningitis. His platelets were low, and he was diagnosed with leukaemia.

“I had to get off work again and liaise with Crumlin Children’s Hospital and our medical team in Cork, who were phenomenal.

“Tom went through one year of infections and treatments that finished around Tom’s second birthday in January.”

After chemotherapy treatment, Tom was still poorly.

“He had repeated infections. I gave up work until I returned part-time a year later,” says Mary.

Tom had a pretty bumpy start in life. It was early 2020 when he was recovered from the side-effects of the chemotherapy treatment.

The boy has never looked back.

“He is a happy, healthy chap,” says Mary.

He seems to be a lively chap too, with good rhythm and energy to play the drums?

“He sure is!” says Mary.

When Tom was diagnosed with DS, she didn’t know where to go for support.

“I thought, who do I turn to?” says Mary. “I knew early intervention was vital and when I Googled ,I found DSI. I rang them.”

Mary has never looked back.

“In those early days, I found DSI Cork wonderful,” says Mary. “They introduced Tom to music and to speech development.”

Mary was introduced to other parents with children who had Down Syndrome too.

“The best part was meeting other mums and quickly realising I was not alone,” she says.

“We got to know each other, and we met up often. 

I look forward to every Wednesday when we meet up for a chat and a coffee. It’s lovely.

Tom got to know lots of people too.

“The staff at DSI Cork are so consistent,” says Mary.

“The same staff have been there since Tom began attending as a baby. The same physio, the same occupational therapist. Tom got to know all the staff.

“DSI Cork is worth its weight in gold. Each child is an individual and is treated in that way. Like me, Tom has made great friends at the centre. It is a big part of our lives.”

School is a big part of Tom’s life as well.

“There is great support for Tom at Ballygiblin National School,” says Mary.

“They are linked in with DSI regarding the supports he may need.

“The future plan going forward is for Tom to avail of the adult training centre Field of Dreams where he can learn many skills including catering and horticulture.”

In the future, he might give the late Rolling Stones drummer, Charlie Watts a run for his money, or Phil Collins for that matter?

“Who knows!” says Mary, laughing.

“Tom is a lively, happy chappy.”

UPCOMING FUNDRAISER

The Tour de Munster takes place from August 8 to 11. For more information, see http://tourdemunster.com/

ABOUT DSI

Down Syndrome Ireland provide support and services to people with Down syndrome and their families though a national office and 25 branches nationwide.

They provide an ‘all-through-life’ supports to people with Down syndrome and their families across Ireland, with specialists in the areas of health, speech and language, early development, education and adult education and independence that enhance the lives of thousands of children and adults with Down syndrome across the country.

There are six branches of Down Syndrome Ireland located in Munster, including one in Cork.

The Cork branch of DS provides extra service support to its members from birth. Speech and language therapy are the prime focus over the years. Contact DSI Cork on 021-4872680 Email:info@downsyndromecork.ie