A lack of State services for children with Down syndrome forced a group of parents in Galway to take the initiative. Lorna Siggins reports.
Molly, a large friendly puppet, says hello and shakes hands with each child. Mari and Jackie produce photographs of Seán, Lauren, Adam and Donal which the four toddlers must recognise.
The four listen to animal sounds on tape, while Mari signs the name of each creature. A frog is two hands out. An elephant is a long trunk movement from the mouth. When Lauren becomes unsettled, she is soothed by Jackie's soft rendition of the Barney song.
It could be any mother and toddler group, but Little Owls in Galway city is a unique initiative. For the past five years, Down Syndrome Ireland's Galway branch and the Brothers of Charity have taken a joint approach to meeting the communication and early intervention needs of infants and children with Down syndrome.
Every fortnight during the academic year, the group of parents and very young children meet community nurses and a speech and language therapist to work on vital developmental skills. The emphasis is on learning and fun, in preparation for pre-school attendance, according to the speech and language therapist, Mari Caulfield.
Parents and family members are encouraged to participate with the toddlers in activities aimed at developing oral motor skills for sound and speech, communication through speech and Lámh sign language, shared attention, comprehension and physical ability, such as motor co-ordination and balance.
The private-public partnership was initiated by parents Monica McAnena and Dr Tiernan and Dr Carmel O'Brien of the Down Syndrome Ireland-Galway branch over five years ago in the absence of sufficient State supports for children with the condition.
All the research indicates that early intervention is crucial, but there was (and still is, in many areas) insufficient State provision of speech and language therapy.
The Brothers of Charity was, and is, the official "service provider" on behalf of the health board, but it was, and is, strapped for cash. "You would receive a letter shortly after your child was born to say that this was the service required, but that there were currently no resources," one of the parents says.
Rather than wait for the revolution, the Down Syndrome Ireland-Galway branch decided to raise the finance if the Brothers of Charity would agree to work it. For the past five years, it has paid for the speech and language therapy which Mari Caulfield provides, working with the Brothers of Charity Early Intervention Services community nurses Jackie Browne, Tynagh Leahy, Fidelma O'Rourke and Toni McCarthy. The hourly group sessions are split into three, depending on the children's age, which range from 15 months to three years. Parents and family members are encouraged to attend with the children, and they receive support materials, including audiotapes and language cards, to use afterwards.
Nora O'Brien's two-year-old daughter, Aoibhín, has been attending Little Owls for the past year and has benefited enormously. "When you have a Down syndrome child, you can be quite isolated, and it is great to be able to meet up with other parents and kids of the same age and developmental progress," Nora says. "The kids learn from each other, and so Aoibhín took to the Lámh signing. But now she is using more words, stringing abstract phrases together, and so we can drop some of the signs," she says. "The kids really enjoy it and it gives them a great foundation for playschool."
Almost 50 children have attended since 2000, and the fifth anniversary is being marked at a function on September 10th in the Brothers of Charity at Kilcornan, Co Galway. Many of those who will attend are past parents and pupils, who have now moved on to new challenges - and waiting lists.
In spite of the trend towards more inclusive education in mainstream schools, the Government's Disability Act has failed to afford children with significant needs the right to guaranteed continuous support.
A report published by the Brothers of Charity earlier this year described it as a crisis. Its Community School Age service team had accepted referrals of 23 children between September 2003 and December 2004. Of the 23, 11 children have Down syndrome, six have autism and four have a physical disability. As of last December, 11 children had received "some element of service", the report said.
Yet, 12 of the 23 children were still on a waiting list, and none of the 23 was receiving "an adequate level of service", the report stated.
Mainstream school placings for these children could be jeopardised without such multi-disciplinary back-up, according to the report.