Symbia Barnaby says she can relate to the feeling of helplessness experienced by Angie Robinson, the mother who took the life of her autistic son Robert before taking her own.
“One year ago, I was her,” said Barnaby, a licenced practical nurse raising six children including a daughter with autism and another with ADHD.
“If I had not decided to go into the emergency room last year and say ‘I feel like I need to walk off the face of the earth’ things would be different. I would not be here … I just told the doctor ‘I can’t take this. I just can’t do it any more’.”
Barnaby said part of what brought her to that point was trying to get help to care for her daughter and the number of hoops that need to be jumped through for support. As an example, she said the process begins with a consultation with a doctor, who then sets a referral to a pediatrician who then refers the family to a provincial ministry team. From there, parents are required to fill out numerous booklets filled with questions about every day life and, if approved for support, then have to meet with another specialist who dictates what funding is available in support and what that funding can be used for.
While not blaming any one group or entity, Barnaby said the process to find help is simply too much for many.
“This is not a criticism of the care providers, it’s the system. It’s also not a criticism of the Ministry of Children and Family Development, I think it’s awesome that the money is there to support families, but it is a question of who knows it is there, who can fill out all the paperwork and who qualifies for support,” she said.
“I have a nursing licence, am halfway through obtaining my Bachelor’s degree and have a grade 12 education and even with all of that I found it difficult.”
But she is not alone in raising children with exceptionalities, the term preferred to special needs, or facing the challenges of getting support. Along with a friend who is also raising a child with exceptionalities, Barnaby founded Parents for Positive Change in January.
The organization, while still in its infancy, is planning to not only help parents clear some of the roadblocks to finding support, but to offer parents a place to share their triumphs and challenges with people who are going through the same thing and to learn parenting skills from individuals like nurses, social workers and other experts in the field.
“We’re a community, but we’re a silent community. Now we’re getting together … we should never be alone and nobody should ever have to feel they are alone,” said Barnaby, who noted the situation with Angie and Robert points to how much of a need a group like this is.
“It is B.S that she had to feel this was her last option and it is B.S. that there was nowhere she could go to have a coffee and get the support she needs from people that are going through the same thing.”
Parents for Positive Change will be holding a fundraiser at the civic centre on May 10 from 1 p.m. to 3 p.m. to coincide with Mother’s Day, a by-donation event that will allow children to make crafts for their mother and offer mother-daughter makeovers. The group is also seeking sponsors as they aim to create a presence in the community.
“We have the drive, we have the qualified people we just need a little bit of money to get a space going,” said Barnaby.
“These children are so special to us … we are there to be their voice, but who is the voice for us parents?”
Anyone needing assistance or more information on the group can contact firstname.lastname@example.org.