'I've told my boys they can be whatever they want... they'll always have our love and support'
Today is Foetal Alcohol Spectrum Disorder Awareness Day. Dromore mum Alison McNamara tells how her adopted sons deal with the condition and why she is working to unite parents and relatives of those with FASD in Northern Ireland
When Alison and Brian McNamara adopted brothers Reece (9) and Jordan (8) when they were toddlers, they had no idea both boys had underlying health conditions.
Alison anticipated some form of problem with Reece, but what the couple weren't braced for was both boys having foetal alcohol spectrum disorder (FASD).
"With Reece, we knew there could be some form of developmental delay, which came to nothing, but it wasn't until Jordan was at nursery when I had a feeling at the back of my mind something wasn't right," said mum Alison (52), who has now set up the Foetal Alcohol Spectrum Disorder NI group to support parents and relatives of those diagnosed with the same condition.
Jordan has been officially diagnosed with FASD. Alison first became aware that he wasn't as typical as those of his own age when he attended nursery.
"I was fortunate in that my background is nursery, so I noticed differences," she explained.
"Even earlier than that I noticed that he couldn't pull to stand at 13 months, but I put that down to his foster family being so loving and the children lifting him all the time.
"But when he started primary one it came to light that he wasn't at the same level as his peers. We had the educational psychologist assess him and he was put back to pre-school."
Jordan can't yet read but tries to do so using pictures and words, Alison says, while Reece, who has not officially been diagnosed with FASD, is demonstrating behavioural characteristics in keeping with the condition. The couple expect a diagnosis to be confirmed.
Reece also has an undiagnosed genetic disorder.
"Reece is doing great," she added.
"He can cope in mainstream school. He sees a learning support teacher and his reading is so good that Brian and I can no longer spell out words to each other because he can pick up on everything!"
FASD's impact on both boys varies slightly, however. They both have no working memory and the couple must ensure a routine is in place so that the children's environment offers consistency. "We call it groundhog day because they can't process change," explained Alison. "Reece has transitional issues and we have to give him warning of change. For example, we warn him that he'll be getting a bath, because if we said 'right, you're going to get a bath now' there would be a meltdown." The visible symptoms of FASD include a thin upper lip, no philtrum and 'Spock-like' ears, says Alison, who explains that the impact the condition has on the memory can often leave Jordan lost mid-sentence.
But they are "typical brothers", she's keen to point out. "They fight one minute and then they could be rolling on the floor hugging each other afterwards," she said. "They do everything that other boys their ages do. Jordan loves Liverpool Football Club and they love swimming. We just have to adjust and put strategies in place.
"They're also very affectionate and caring. It brought me to tears when Jordan spent his holiday money on a necklace for me recently and when we found out the boys had the condition we just dusted ourselves off and started again.
"We wouldn't change a thing about them, because then they wouldn't be our boys."
Alison and her husband Brian (53), who is from Belfast, moved to Dromara from the Lake District four-and-a-half years ago, just before Jordan's fourth birthday. While the couple had tried to have a baby it just didn't happen for them.
Alison said: "We didn't look into it. We didn't want to know and I said to Brian: 'I think we were put on this Earth for this reason'.
She quit her job to stay at home to look after the children, while Brian works for Belfast City Council.
"I love Northern Ireland," said Liverpool-born Alison. "My mum and dad moved over too and it allows us to be close to family. My sister-in-law has been really supportive with the boys and is the big sister I never had," she added.
While the family are loving life here, Alison has noted a lack of understanding and support for parents in her position.
She believes knowledge about FASD is much more widespread in other parts of the UK and so has set up her own support group in Northern Ireland, which meets monthly.
"Last year I got so fed up with there being nothing here to help us, so I got in touch with the FASD Trust in Oxford and they asked me if I would be a link worker and I said yes," she said.
"I started a small support group in Dromore because I can get the church hall there really cheap and in total we've had six meetings. Our next one is on September 16.
"I'm not here to stand on a soap box and spout and tell people what can happen if you drink alcohol during pregnancy. I'm here to help. We don't judge and our children won't be judged. It's a place where we can have a natter and a cup of tea."
And today Alison is gearing up for her biggest event yet, to raise funds for the FASD Trust on global FASD Day. A ladies' pamper event will take place from 5.30-9.30pm at St Colman's Church Hall in Dromore. Hair, nail, eyebrow and make-up treatments will be on offer, as well as a raffle for which Alison has called in prizes including jewellery from Real Housewives of Chelsea star Tanya Bardsley.
"The event will continue to raise awareness and hopefully allow people in the same position to know that they're not on their own. I'm here for them. And if it raises even £100 I'll be delighted," added Alison.
Looking to the future, she wells up when asked what lies ahead for both Reece and Jordan.
"I've told my boys that when they grow up they can be whatever they want to be, because they will always have loving, supportive people around them. Jordan wants to be a farmer and Reece wants to fly a helicopter for the police," she said.
Reece and Jordan will dress up as butlers at today's event. Alison adds proudly: "They'll wear their little Communion suits, and Brian makes a great cup of tea, too."
What is foetal alcohol spectrum disorder?
For more information or to contact FASDNI, visit Alison's page on Facebook. For more information on FASD visit fasdtrust.co.uk
- According to the FASD Trust, FASD is a series of preventable birth defects caused entirely by a woman drinking alcohol at any time during her pregnancy, often even before she knows that she is pregnant.
- FASD is an umbrella term for several diagnoses that are all related to prenatal exposure to alcohol.
- These include foetal alcohol syndrome (FAS); partial foetal alcohol syndrome (PFAS); alcohol related heuro-developmental disorder (ARND); alcohol related birth defects (ARBD), and foetal alcohol effects (FAE).
- The term 'spectrum' is used because each individual with FASD may have some or all of a spectrum of mental and physical challenges. In addition each individual with FASD may have these challenges to a degree, or 'spectrum' from mild to very severe.
- Common problems include: vision impairment; sleep problems; heart defects; liver defects; poor immune system; speech and language delays; impulsivity; memory problems; hyperactivity and inappropriate social behaviour.
- Abnormal facial features, such as a smooth ridge between the nose and upper lip, known as the philtrum, may also be present.
- Often the condition goes undiagnosed, or is misdiagnosed, for example as autism or ADHD, and this can lead to secondary disabilities, states the FASD Trust.