KAREN and Jon O’Mahony’s youngest sons, Seán and Stephen, now aged 13 and nine, were diagnosed with Autistic Spectrum Disorder (ASD) when they were small children.
Their diagnoses acted as the catalyst for Karen and Jon to establish The Rainbow Club in 2015. The charity is based in Mahon Community Centre.
Karen and Jon knew little about ASD when their son, Sean, was first diagnosed with Asperger’s Syndrome, aged five.
“When we received our first diagnosis of autism, we had no-one to turn to. We felt numb and terrified”, recalls Karen.
“It can be difficult for parents to comprehend a diagnosis of autism. All the dreams you had for your child are ripped away.
“You wonder if you are a good enough parent to step up to this diagnosis and responsibility. You’re fearful about what will happen to your child when you are gone.”
Both Karen and Jon decided to educate themselves as best they could, in order to help their sons deal with their individual conditions.
“Lack of knowledge is a huge obstacle”, explains Karen, “so we attended every course we possibly could in order to learn and empower ourselves to look after and support our boys on a daily basis.”
Karen and Jon noticed a lack of resources in Ireland for children with ASD and decided to take matters into their own hands
Karen says: “It didn’t make sense to me that Seán and Stephen would go to a therapy session for 40 minutes, once a week for a six-week period and then that was it. It frustrated us, as parents, because we were with our children 24/7 and we did not feel equipped to help them.
“We decided we wanted to help families like ours, so we set up The Rainbow Club.”
Before the Rainbow Club was set up, children with ASD had little access to social groups and activities, such as sport and art, specifically tailored to their needs. For children with ASD, it is often the social aspects of their lives that cause the most stress.
Feelings of uncertainty and a chaotic environment can lead a child with ASD to feel overwhelmed and unsafe, leading to what is referred to as a ‘meltdown’. A meltdown may look like a temper tantrum to those who do not understand ASD. In actuality, a child with ASD is responding to extreme stress caused by an inability to react appropriately.
Support for parents whose children were diagnosed with ASD was limited. The Rainbow Club was set up to help children with ASD make friends and acquire life skills in a supportive and understanding environment.
The club also supports and works with parents of children with ASD.
Qualified therapists at Rainbow Club provide skills training in occupational therapy, speech and language therapy and play therapy to parents to give them the confidence and knowledge required to manage various challenges that ASD presents.
Karen believes that the parents of children with ASD need as much support as their child who has been diagnosed.
“It’s imperative that we help parents, that we provide them with the necessary skills and knowledge so they feel empowered and capable of managing and supporting their child on a daily basis.”
Karen explains: “The Rainbow Club’s intention is to help make life easier for families. A child can come here for an hour and attend one of our groups so that mum can get a break. Parents can come to learn vital skills to help their child and empower themselves as parents.
“Rainbow Club is a place where we bring families together. We are all on the journey of autism together. We are a community within a community, a place where children with ASD can come and be supported, a safe place where their needs are fully understood.”
The growth of Rainbow Club since its establishment in 2015 is remarkable. Twenty-two children attended Rainbow Club when it first opened its doors. Now, 400 children attend the club and 311 are on a waiting list to attend.
The children who attend the club take part in sports programmes, music programmes, art and crafts and many more. The club is run on a voluntary basis and is not funded by the government.
With increasing numbers of children with ASD needing access to the services the Rainbow Club offers, Karen and the team at Rainbow Club plan to grow and continue working with families in Cork. Karen is keen to expand the club in a number of different ways.
Some of the youngsters that first joined the club in 2015 are about to turn 18.
With a lack of services available to young adults with ASD, the Rainbow Club is implementing a mentorship programme where these young adults will be trained and act as mentors to younger children at the club with ASD.
Karen says: “We have to think about what happens to children with ASD once they turn 18. We believe in our new mentorship programme. We are growing and these young adults will be a vital ingredient in the club’s success. They know what it is like to live with autism and navigate the chaotic world we live in. They will be the best people to relate to younger children with autism.”
The Rainbow Club is in the process of taking over and renovating the café at the community centre in Mahon where they are based. This café is an exciting project for everyone involved with the club and of vital importance.
Karen says: “Our mentors will be trained and will work in the café. Some of our younger children will have classes in the café’s kitchen.”
The café provide a quiet space for club members and will be a positive and necessary addition to the club’s resources.
The club plans to apply for government funding this year. In order to reach and support more children and their families, Rainbow Club needs a bigger premises.
The Rainbow Club would like to buy a building in Little Island that could potentially cater for thousands of children with ASD. The building would cost €2 million.
At the moment, the club is solely reliant on fundraising and donations. In order to expand, government funding is necessary.
Karen says: “We, at Rainbow Club, want government officials and politicians to acknowledge the work we do. We have been asking for help for four years and have had few responses.
“We are providing a necessary service to children with autism and their families. Whilst we love the work we do, we need the relevant agencies to recognise how much money we are saving the government by providing a voluntary service.
“We have grown our club which helped 22 children in 2015 to 403 children in 2019, with 311 children on our waiting list.
“We need to be recognised as a key service so that when we apply for funding this year, it will be granted.
“What we have achieved in just four years is phenomenal. Imagine what we could achieve in the future. Imagine the children and families that we could support and empower with funding from our government.”
For more information about The Rainbow Club see http://rainbowclub.ie or contact firstname.lastname@example.org