6 March 2019 | North West England
Meet the inspirational mums who are bringing together the families of disabled children so they don’t feel alone.
For families with disabled children like Melanie and Jonathan Battye - the judgement of strangers was one of the most difficult things they faced.
Their beloved daughter Saskia, 13, has a rare genetic condition that makes her behaviour unstable, meaning she is prone to meltdowns in public.
“If we went to a restaurant, she might pick up a plate and throw it at someone,” explains Melanie. “She is the most affectionate child usually, but in public she can lash out.”
As the years went on, it became simpler to just stay at home in St Helens.
But Melanie, 49, did not want Saskia to miss out and together with her friend Paula Jones, 47, came up with a plan after realising other families like them felt similarly isolated. Paula’s daughter Lauren, 18, is on the autistic spectrum and the family also struggles when out of the house.
The pair formed Friends Play for Disabled Children, a not-for-profit group for disabled and special needs children and their families around Merseyside.
Through a Facebook page, they arrange special trips out and events where everyone who attends knows they will be surrounded by people who understand their situation. They arrange activities like a special needs roller disco, swimming sessions, forest school and arts and craft sessions. Then there are the special trips out, when Melanie and Paula hire minibuses to visit places like Chester Zoo or the pantomime.
The group started with just four families but has become such a success that more than 600 families are now active members. They call the group ‘Friends’ for short. “There is strength in numbers,” smiles Melanie. “We have families who have never taken their child out socially let alone to the theatre, cinema or to a music concert although they would dearly like to. But they worry about the noise levels, or how their child might react. Or the child might have anxiety. We wanted to give them that opportunity.
“We want our families to feel like they are the majority not the minority. And if children have a meltdown then there are people around them who won’t judge and will help out. That emotional help is so important.”
Maisie Lee, eight, got to ride a bike for the first time thanks to Friends. Because of her Cerebral Palsy she can't pedal using her left leg but the ladies arranged for a company to let them use specially adaptive tricycles.
“Without this group we would never have seen our daughter ride a bike and her face on being able to was very emotional and brought us tears of joy,” said Maisie’s mother Klara.
Most activities are free although parents are asked to make a contribution to some events if founding runs short. “We do rely on donations and have to regularly fundraise.”
Melanie says the benefit of the charity extends to the whole family. “Siblings really get a rough ride, because the needs of the disabled child can take over. And families never really get to do things all together either. But at our events the whole family can enjoy activities together, and siblings are made to feel special as well as being exposed to a wide variety of disabilities.”
Melanie and Paula run the charity while also working full time. Life has not been made easier by the fact Saskia recently was expelled from her special needs school, and now needs to be home-schooled. She suffers from a very rare neurological disorder called SYNGAP1, of which there are only a few hundred sufferers in the world. In the little time she does have free, Melanie is helping doctors arrange the first ever international conference to discuss the SYNGAP 1 disorder in the UK.
“My life is very busy, but the charity is important because we want families like us not to feel alone.”