‘JIMMY is just Jimmy, and not “Jimmy with Down Syndrome” or anything else’ is how popular West Cork make-up artist Siobhan O’Mahony describes her four-year-old son, who was born with the condition.
Speaking during October’s Down Syndrome Awareness Month, Siobhan said she doesn’t regard her son as her ‘cross’ and feels lucky to have him in her life.
But that’s not to say the straight-talking 40-year-old, known for her regular appearances on RTE’s Today Show, didn’t encounter some negative reactions after his birth, or sometimes finds herself overwhelmed by thinking about his future.
‘No part of me is angry that Jimmy has Down Syndrome, but I focus very much on the moment, and not about thinking if he’ll go to college,’ she said.
Originally from Ballydehob, but now living near Clonakilty, Siobhan recalls a straightforward pregnancy, which she very much enjoyed, even if it was a surprise.
She wasn’t in a relationship with Jimmy’s dad, Timmie O’Brien, at the time, but the pair are a couple since their son turned one, and they very much credit him with bringing them together.
Siobhan remembers during the pregnancy meeting a friend whose niece had just been born with Down Syndrome, and her immediate reaction, she says, was: ‘I couldn’t do it’.
Her labour was difficult, lasting Tuesday to Friday, and there were a lot of doctors present when Jimmy was born, two weeks early.
‘I remember a foreign doctor saying that my baby was showing symptoms of Down Syndrome (which wasn’t confirmed officially until 10 days later) but I couldn’t really understand what he was saying to be honest.
‘And then as it sunk in, I got this overwhelming feeling that I wasn’t able to do anything right. It was hard to know what I knew at that stage,’ she said honestly.
She remembers falling asleep and waking up to see father and son bonding by her bedside: ‘Timmie said to me that he’d had a chat with Jimmy and everything was going to be just fine, and that’s what I needed to hear. He was a fantastic support.’
The scariest part for Siobhan and Timmie were the medical tests that followed that same day.
‘It was such a whirlwind. I was bawling – not for us, but for him, as I already knew I loved him unconditionally,’ she remembers.
Baby Jimmy had to spend some time in the neo natal unit, but thankfully had no major health complications, and Siobhan says she used to make a big effort to shower and look her best when she would see him every morning.
‘The first morning, I woke up and thought it was all just a dream, but then it all came back to me. But I told myself to cop on and put forward my best front for him.’
Telling her parents and other family was hard, she said – and it wasn’t anything to do with Jimmy, but more about herself.
‘I felt it was bad enough that at 36 I’d had an unplanned pregnancy, and now there was this as well. I also felt some guilt that somehow it was my fault and something to do with my age,’ she said.
‘I did a year of counselling after his birth to help with all that – not because of Jimmy, but other issues that he made me face up to.
‘He made me want to be the best I could be for him, and for us both to be the best parents we could be.’
Siobhan was determined from the start not to hide away at home with her little boy, and as soon as the pair got home from hospital they got out and about.
‘I was naive to a lot of things and in some ways that helped.’
Although some reactions, mainly from older people, did annoy her. These were mostly pity comments and included ‘sorry for your troubles’ or ‘God wouldn’t have sent him to you if he didn’t think you were able for it.’
‘I just thought – what are you on about, he’s not sick!’
She was contacted by various services in the immediate aftermath, both in hospital and when home – something which was both helpful and overwhelming.
‘I can remember one person saying things like “he’ll never be able to tie his laces” so we’d need to get Velcro shoes. She was putting restrictions on a week-old baby!
‘And she also said “they’re very good at the trombone.” This “they” really annoys me the most. “They’re so good” or “they’re great to sleep” or “they’re so musical.”
‘Timmie was a full time musician and his family are very musical, so if he’s not that way inclined, there’ll be something really wrong. Having said that, I can understand people getting it wrong – I do myself sometimes.’
She’s also adamant that as parents they’ll treat their son as they would any child – which includes discipline.
‘The last thing we want is for him to be spoiled,’ she insists. Currently, he attends Montessori five days a week, where extra funding through the government’s AIM (Access and Inclusion Model) provides a teacher to give him extra support when and if it’s needed.
‘We are beyond lucky to have Colette Buttimer as his support worker for two days a week in Montessori to help Jimmy – she is an angel,’ says Siobhan.
Emphasising she’s not complaining, she said he would love to be able to go more often, with other gaps in services like speech and language therapy and physio therapy.
‘It’s a thin line though – we are very grateful for what we have and can afford to access additional services if we need to.’
The couple plan for Jimmy to attend mainstream school in Clonakilty. ‘We want to integrate him as much as possible, but that doesn’t mean I don’t wonder if he should have a friend who also has Down Syndrome.
‘It’s a question I ask myself a lot.’
While initially they hadn’t planned on featuring Jimmy on social media, they changed their minds after his birth, for fear people would wrongly think they were ashamed.
Siobhan, who has a large social media following on Instagram, regularly features Jimmy, Timmie and their family dog Tux.
‘I don’t ever use any Down Syndrome hashtags, though, as I think by doing that, you’re unintentionally labelling, even if you’re trying to break down barriers.’
And while not keen, right now in any case to be an advocate or campaigner for those with special needs, she feels that by posting about him online she’s doing her bit to fight his corner.
‘That’s my little fight – keeping him visible and not making him different.’
Her ultimate aim, she says, is to make her boy as independent as possible – for when they’re not around. That’s the only time in the interview she becomes emotional.
‘My biggest job as a mum is to make him independent. I’d love to think he’ll be able to drive, that he’d have a girlfriend or boyfriend, but all I want is for him to be independent.’
Her advice to a new parent of a Down Syndrome child is that she has ‘no advice’.
But, she adds: ‘Take it easy, walk before you can run, spend time with your baby and enjoy him or her. Give yourself a year to adjust and try not to be angry.
‘That moment when Jimmy was born, it’s easier said than done, but if I could have seen forward to where we are now, I’d have known there was no need to worry.’