With an ever-growing number of people and their families depending on Ireland’s special needs services, the systems in place are struggling to cope. Programmes, particularly in more rural counties, are inundated and under-funded an issue exacerbated by the Coronavirus. Thankfully, with support and the determination of communities, special needs services are finding new ways to engage with the people who need them and fight back against Covid-19.
When Nora Roban’s son Paul was born with special needs she instantly began visualising his future and what she could do to ensure his happiness. “When we discovered Paul, our first-born, had special needs we just got on with it. For ten years that meant endless therapies but if we had not put that time in, he would not be walking or talking now,” she explained. When Paul was around 10, Nora began to notice the widening gap between her son and other children. She revealed “I felt he was being left behind. He was enrolled in numerous clubs but he was unable to follow instructions and his confidence was dented. Paul was in a mainstream school and going nowhere, so we decided to try out a special needs school and we never looked back. He was like a new child,” she said.
Nora saw Paul was happier, but she still found there to be a serious lack in services and information available to them. And so in 1998, she took the leap and established Remember Us, an organisation where people like Paul and their families could receive support and socialise. She said “parents have to fight for every little service. I wanted Paul to have a social outlet like other mainstream young people and to have access to the same activities. So I started a support group for parents of children with special needs.” It began with once a month coffee evenings, with parents consistently telling Nora they “would love their sons/daughters to have a social outlet that went at their pace.” She listened, agreeing that it was a desperately needed service. “So I went off and started Remember Us, developing it to where it is today.”
The service, located in North Fingal, caters to approximately 210 families, impacting almost 700 people. Offered to people from early childhood, right through adulthood, Remember Us has dozens of activities to enjoy, including theatre trips, meals out, computers, sports and cookery classes. There are also a number of respite programmes in place for siblings and carers. Nora notes that though they don’t offer direct respite, families can benefit from programmes offered by hotels that collaborate with Remember Us. “On the family respite breaks, parents/carers get some respite time when their child attends clubs in the hotels we assisted with. It is also important that parents have the support of one another.”
These breaks are just one of the many vital services interrupted by the Coronavirus. Due to the nature of the current pandemic, Easter and Summer camps have been cancelled, parent support groups disbanded and activities and fundraising events postponed. But Nora insists this will not deter her or the hundreds of people who rely on Remember Us. She says “we are a social club, our members really miss meeting up with one another…but we have risen to the challenge.”
In response to Covid restrictions, the organisation has taken advantage of technology to stay operational. Now the day-to-day for Nora involves manning the phones and email accounts, zoom quizzes, online exercise sessions, zoom bingo and on Fridays she and Paul wear fancy dress to film a video informing members about the weekly theme for photographs. “Families and members really enjoy it. I heard members of the public are enjoying it too, the latest being in Sydney,” she expressed. She also sends out a weekly web-text checking in with families to see how everyone is coping.
With this outlook it is no wonder Nora was nominated for the Lord Mayor of Dublin’s Covid-19 Hero Award. An honour given to individuals who have made a special contribution at a local or city wide level. “I am incredibly grateful,” she said.
She takes pride in all she has done, but more so in the accomplishments of the people who utilise the service. “Our members are amazing. We have seen them grow in confidence and ability.” But she explains there are still mountains to climb. “Often people don’t realise just how capable they are. Or they are inhibited by a lack of services. We have parents getting older who would love to see their son or daughter in a supported living facility with their peers, before they pass away. I would urge anyone who can to donate, no matter how big or small. All information to do so can be found on our website or people can come directly to our office.” She concludes “we are a vital, vibrant group. Once you meet us you will always remember us.”
Information on Remember Us can be found at https://rememberus.ie/