SHERIDAN Potter dreams of a “non-judgemental” Church where “education and understanding” are key to acceptance for all with special needs.
Mum to Sebastian, 8, who has Joubert Syndrome (JS) – a growth-stumping genetic condition occurring in one in 80,000 to 100,000 – has experienced her share of negativity and is more than ready and willing to do something about it.
“I’d love to be part of setting up a safe place for parents of children with special needs,” she said.
“This would be somewhere that parents and carers never again have to hear things like, ‘Just discipline your child’ or ‘Tell him he looks silly and to walk properly’.
“(And) they wouldn’t have to see other adults pull their children away so they won’t play, sit or talk to your child.”
Sheridan instead dreams of a simple, “Hello”.
“I’d encourage people to be honest and say hello, to reach out and ask questions that are non-judgmental,” the Brisbane mum, who migrated from England before formal schooling as a child, said.
“I’d encourage understanding and the knowing that children aren’t punishment for sins, they are a gift from God and need to be treated as such.”
Sebastian’s father abandoned him after realising “something wasn’t right”.
“After a tricky pregnancy, we needed to leave a Middle Eastern country quietly,” Sheridan said.
“Sebastian’s dad had decided he wanted to have more than one wife and didn’t want a child any more.”
The experience of becoming a mum “was magical”, however, and “the most God-given gift” while the realisation of “something wasn’t right” prompted Sheridan to action.
“From my background in education and my work with special needs, I was fascinated with early intervention,” she said.
“Throughout my early career, I was able to work with specialists and children within the special-needs community around the world.”
With Sebastian born with cleft feet and other emerging health concerns, Sheridan’s promptings of early intervention for him were also a constant call for God’s help.
“Prayer has had a constant place in our journey because until Sebastian was over seven (years), we had no diagnosis,” she said.
“He was a puzzle. So when it came to choosing doctors, therapists, schools and places to live, it was a constant prayer to make sure the right people were in the right places and that I had the wisdom to make the right choices.”
Nurtured, in her youth, by faith-filled others in Newcastle, Sheridan later found a spiritual home in Emmanuel Community in Brisbane.
There she remains, grateful for support and “amazing” friendship, as she navigates the journey of physical and cognitive intervention for Sebastian.
“When we got the diagnosis (of JS) last May, most of the medical profession had never heard of it,” she said.
“Prayer and relying on God’s wisdom became even more important as we then knew it was a brain malformation and genetic disorder which included organ problems.
“My relationship with God became even more important.”
Sheridan continues to trust in God, especially following Sebastian’s recent dual diagnosis of epilepsy.
“Both before the diagnoses and now, the challenges have been knowing what to do next,” she said.
“(And it’s) wondering if Sebastian’s newly diagnosed epilepsy is connected to his Joubert Syndrome or does it stand alone?
“(I wonder) what he will do about high school … (but) I don’t know how he will be in the next week, let alone in three-and-a-half years.
“Without God, I would’ve given up a long time ago as this is a daily battle to make sure Sebastian gets what he needs.”
Sheridan said professionals advised that, without early intervention, her much-loved son would likely be wheelchair-bound and non-communicative.
Instead, he attends school and is part of the community “with a ready smile and a love of animals, humans, reading, football and science”.
“I just keep going like the little engine that could,” Sheridan said of his progress and her dedication.
“When I need to let go, I rely on God to hold and comfort me.”
Overseas research strives to shed light on JS, with much time and money currently being spent by the University of Washington.
Sheridan hopes to attend an upcoming conference at the university to obtain “a more detailed road map for the future” and has a GoFundMe page (linked to her name) to help with the myriad of expenses to do so.
All the while, she knows God has given her the gift of Sebastian for a purpose and part of her role is helping her son discover his.
“I pray that Sebastian can find his gifts and use them,” Sheridan said.
“I pray that I can support him so he can be a full participant in our communities, both Church and secular.”
Participation in the Church for those with special needs, Sheridan said, meant “the creation of jobs in ministries for those who want to be involved but can’t always commit to a weekly or monthly meeting”.
“I pray that those with special needs are accepted and feel supported and loved in all ministries (in the Church) and that we lead the world in inclusion,” she said.
“All ministries should include people who have a medical issue or disability.”
On a day-to-day, week-to-week basis, alongside the “Hello”, Sheridan asks parents to “not stop children asking questions” and to “teach them how to do it politely”.
“I hope that adults themselves will ask questions politely and all generations will not look through these adults and children like they don’t exist,” she said.
“I hope people ask questions to understand, rather than saying, ‘Why haven’t you been at church lately?’ … (but) instead say, ‘Hi, are you okay and can I help in any way?’ If you aren’t sure, ask.”
Sheridan said there were families of children with special needs who might be “afraid to go to Mass” and, indeed, to approach parishes about the reception of the sacraments of the Church.
She asks parishes and dioceses to reach out to them in any possible way, while her message to parents and caregivers, like herself, was simple.
“You are loved and accepted by God and your child is a gift,” Sheridan said.
“I will forever thank God for Sebastian, the biggest blessing my life.”