People in Donegal are encouraged to join the Bluestack Challenge to help raise money to keep open vital support services for people with special needs and their families.
This annual event is in aid of the Bluestack Special Needs Foundation. As well as providing crucial services, the foundation owns a centre which is both a safe haven and a hub for information and activities.
Manager Wendy McCarry is herself the mother of a child with special needs. She believes the Bluestack Challenge is a way of showing solidarity with parents of people with special needs.
She told the Donegal Post: “The whole idea of the challenge is a mirrored effect, that for one day you are walking uphill and you think ‘I can’t go on’ but you do. Somewhere down deep inside you find the courage to take another step and another step and another step.
“That is exactly what it is like as a special needs parent. You have to keep going. There are days when you want to have duvet days and just pull the covers up over your head and you don’t want to be in the situation that you are in. But you have no choice. You have to get up and put the lipstick on and get out there and keep going.”
Ms McCarry talks about the reward at the end of the hard day of walking.
“Everybody talks about the exhilaration of coming down to the finish line,” she said. “That for us is like the milestones.”
Her own daughter Ava took her first steps at the age of 4 ½.
“I celebrated that day and my family celebrated,” said Ms McCarry. “That day was the most incredible day of my life.
“Ava is non-verbal but the odd time she will say ‘Mummy.’ That is huge. Nobody can understand that feeling.
“That is how you keep going and that is the idea of the challenge. You keep walking even when your legs are shaking and they are like jelly and all you want to do is sit down and cry. You just keep going and eventually there will be a reward. We just wait that little bit longer for rewards.”
Ms McCarry gives some insight into the challenges faced daily by parents of people with special needs by sharing her own family’s story.
Ava has a condition called Global Development Delay.
“She has physical, sensory and intellectual disabilities,” said Ms McCarry. “Ava has cortical vision impairment, she has delayed swallow, she has lazy bowel syndrome, she has a learning disability. It just goes on and on and on.
“If you have a rare condition there are no organisations, no bodies that are there as a support structure.”
That is one thing that sets the Bluestack Special Needs Foundation apart. It caters for people of all ages with any condition that impacts on normal function.
Ms McCarry tells of challenges that many people never consider.
“There is a poverty impact that people just don’t realise,” she said. “Often one parent has to stop work. I was earning over €100,000 a year but I had to leave my job. When Ava developed epilepsy she was in mainstream preschool. They wouldn’t keep her because they weren’t trained to administer her emergency medicine. I had to care for her full time.”
Ava’s needs also meant that Ms McCarry had to spend a lot of time away from her four sons.
“They couldn’t just come and snuggle up on the couch with me because I was away in Temple Street with Ava,” she said. “It impacts the whole family in ways you can never imagine.”
Ms McCarry truly understands the importance of the Bluestack Special Needs Foundation for families of people with a wide range of special needs.
The foundation has its origins the lack of support services for people with special needs and their families.
Founders Bernardine and Patrick McBrearty’s daughter Aine was born with Downs Syndrome.
“They will say that it was a shock,” said Ms McCarry. “It took them a while to come around to it. They were very isolated. But one of the first things that happened was a couple who had a child with Downs Syndrome called up to them. And that support, that sense that it wasn’t the end of the world, just hearing another parent’s perspective made the road a little bit easier for them to contemplate because at the start they were just full of fear.”
Need For Services
One of the first things that Bernardine and Patrick realised was how hard it was going to be to help Aine achieve the normal milestones. They knew that she was going to need extra support such as speech and language therapy, physiotherapy, occupational therapy. At the time, the HSE was simply not set up to support them and other families in the same situation.
“You’d get one block of eight weeks and you could be waiting six months for another block of eight weeks,” said Ms McCarry. “And it was one session a week.”
Indeed, Ms McCarry’s own early experiences made her realise that whatever could be done for Ava, it was down to her. There were no services that could make it any easier.
The McBrearty family came to a similar realisation. And so they organised the first Bluestack Challenge for Patrick’s 40th birthday. Instead of presents, 40 friends would walk 40km and raise €40,000. They exceeded their goal significantly, raising €57,000 that first year.
It went on to become an annual event. In the early years the challenge funded a swing in the playground, a hoist at Deane’s farm, a bus for St Agnes Day Centre and other such services. But the need for support services to directly help children with special needs to achieve their potential was becoming more and more apparent. The McBrearty’s believed the Bluestack Challenge could make a significant difference and so the Bluestack Special Needs Foundation was born.
From there, a need for a physical space was identified.
Ms McCarry explained: “People needed a place where they could find out information, a place where they could be heard, a place where they could mix together with other parents, a place where they wouldn’t be judged by their child’s behaviour, a place where the child wasn’t being looked at in a strange way, a place where they just felt like they belonged.”
And so the premises at the Glebe, Donegal Town was bought. This proved to be a double-edged sword, especially in the early years. It was bought before the property crash with money borrowed from social investment bank Crann Credo. This was on the understanding that the foundation would be eligible for a significant grant. But then the crash happened and the grant never materialised. The board was faced with a tough decision. They could walk away but lose everything, or keep going and bear the burden of debt for years to come.
They chose to keep going through some very tough years. Thanks to the HSE now renting some of the building for services which the foundation uses, they are able to stay on top of mortgage repayments.
The centre certainly has become the safe haven and community hub that its users and their families craved. As well as a quiet room, play areas, counselling spaces, a polytunnel, a beautiful garden and outdoor play area there are two physiotherapists, an occupational therapist and two speech and language therapists on site. There is also a warm, welcoming atmosphere and the comfort of a listening ear from someone who fully understands the challenges of parenting a child with special needs.
It really is a one-stop-shop for people with special needs and their families and is testament to the vision and determination of people like Patrick and Bernardine McBrearty, Wendy McCarry and everyone who has played a part in its development.
“The assessment of needs co-ordinator is here as well so that means when families come in to access one of those services they can hear about what we offer so there is that kind of holistic package of what’s there now,” said Ms McCarry. “What we are hoping for is that down the road there won’t be a night that this place isn’t going. It should be busy every single day.”
There are currently 261 registered families who are caring for a child, a young person or adult with physical, sensory, intellectual, learning, psychological or emotional disabilities.
The foundation holds clubs for people of all ages, covering a range of creative and fun activities. They also play a huge part in giving parents a much-needed break. These clubs are supported by a team of volunteers and there is always need for more help.
“The clubs are very important," said Ms McCarry. "They give great confidence. Very often the participants are children and young people who would not normally have participated in any social engagement at all.
“We all need to feel that we belong somewhere. A lot of our children who came in and would have had difficulty adjusting to the group have now progressed out of us and are in mainstream clubs. We had kids that have gone on to Rinka, to Foroige because we create that pattern of social activity.”
The foundation also helps prepare people for work by helping them to adjust to a mainstream environment. This can be quite a challenge but it opens up a whole new life experience for young people in making the transition to a mainstream situation.
Money raised from the annual Bluestack Challenge is what allows all of these services and activities to continue.
The walk takes place on June 8. Due to some difficulty reported with online registration, the deadline has been extended to Sunday, May 26.
Anyone who would like to take part or to find out more about the Bluestack Special Needs Foundation can go to www.bluestackfoundation.com. People can also register in the Bluestack Special Needs Foundation office or by calling 074 9740828.
These are also the contact details for anyone who is interested in volunteering at the centre.
Pictured: The wonderful Bluestack Choir
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