When Co Down musician Brian McNamara, 55, takes to the stage next month for a special charity gig in Belfast, he will be playing for a cause very close to his heart - Foetal Alcohol Spectrum Disorder - a condition which affects both of his adopted sons.
Brian, the drummer with the Holsteins, will be among a group of well-known artists raising money at the Pavilion Bar, Belfast, on March 13, for FASD Aware NI, the support group he and his wife Alison established after their sons, Reece, 12, and his half brother Jordan, 10, were diagnosed with a range of birth defects associated with drinking alcohol in pregnancy.
The couple from Dromore, who adopted the boys as toddlers, are acutely aware of the catastrophic legacy drinking alcohol during pregnancy can cause.
‘‘My message for ladies who drink in pregnancy is you are playing Russian Roulette with your child’s life,’’ said Alison, 54, who explained her boys have symptoms of both ADHD and autism.
Both boys also have no working memory, there are developmental issues 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.
‘‘We try to keep a routine, otherwise it will throw them off.
‘‘Jordan struggles with the routine more than Reece. Jordan gets dressed in a specific manner, he puts his underpants on, then his socks, then his trousers, then his shirt.
‘‘We give them little warnings, like, ‘we are going to do this in five minutes’ and that helps with their transitional issues. If we just went in and said, ‘Right, in the car we’re going out now,’ they can’t comprehend that.’’
Alison added: ‘‘Foetal Alcohol children have no working memory - they forget things very easily. I can send Reece upstairs for his uniform, and then two minutes later he’s forgotten what I’ve sent him upstairs for. They don’t learn from consequences, so we have a lot of repetitive behaviour.
‘‘Jordan has speech and language problems, as well as severe learning difficulties. Reece is moderate. FASD is spectrum.’’
When the pair adopted the boys, they didn’t know they had the condition, although Alison said they had a feeling their ‘tummy mummy’ had drunk alcohol during the pregnancies.
Alison explained: ‘‘When Reece was in pre-school, I worked there. He had learning difficulties and transitional issues, so we were aware that he needed help. ‘‘With Jordan we didn’t have a clue. He was slow to do things, like pull himself up to standing, but we put it down to the fact that he had been in such a loving foster family with older children - so we thought it was the older children had been pulling him up.
With Reece confirmed as having FASD and Jordan ‘falling further and further behind’ at school, they McNamaras eventually saw a genetics specialist and got a diagnosis.
‘‘The doctor just walked in and said ‘that child is classic foetal alcohol’ - she could tell straight away by his facial features, thin upper lip, a flatter area between the mouth and nose and small eyes. Jordan’s very small in stature. Reece is the opposite, he’s very tall for his age, but he has facial features as well.’’
When Jordan was diagnosed Alison said they looked for help and support, but none was available, so two years ago they decided to establish a group themselves.
‘‘There was loads for autism and ADHD, but there was nothing for foetal alcohol families,’’ said Alison.
The group, whom she calls her ‘Foetal Alcohol family’, provides much needed support for other families in the same situation.
‘‘We are non-judgemental, we just want people to know we are there if you need us. We’ve got about eight families that come to Dromore now and it’s brilliant. And we are going into Derry. We all get together, we have tea and buns, the children play, but because we are still waiting to be registered as a charity we don’t get any funding.’’
Children with FASD do go on to have independent futures, but that doesn’t stop Alison worrying. ‘We try to spend our time teaching them basic life skills, because with the right support these children do go on to lead independent lives.
‘‘Ireland, as an island, has one of the highest rates of women that drink in pregnancy, it’s 60.4 per cent, which is why we need to get diagnoses as early as possible here.’’
But for now, and forever, Alison and Brian are devoted to their sons. ‘‘The boys are our world. We believe we were unable to have our own children because we were meant for these two. They are everything. I would not change one thing about them, because they wouldn’t be the unique, caring individuals they are. They have got the biggest hearts.’’
*Tickets for Warehouse Remembered 2 at the Pavilion Bar, Belfast, on March 13 are £10, limited to 150, and are available on the door or in advance at TicketSource.co.uk: https://www.ticketsource.co.uk/whats-on/296-298-ormeau-road/the-pavilion/warehouse-remembered-2/e-xdakly