Having a child diagnosed with a disability is a life-changing and often isolating experience.
Wellington high school teacher Tessa Prebble is trying to make the experience easier on parents with her podcast The One in A Million Baby.
In Tessa's podcast, parents of children with severe disabilities who share their experiences and insights of how best to cope.
The One in A Million Baby was Tessa's response to her experience with her daughter Eva, who was born in April 2014.
“Within a couple of days, they discovered she was blind, she was deaf – profoundly in both – she had low muscle tone, she had brain and heart abnormalities. They came up with a working diagnosis of CHARGE syndrome, which is another genetic condition that affects multiple areas of the body.”
Tessa says she did not cope well with that diagnosis.
Social workers and nurses advised her to go out and meet other parents of children with special needs, but she says she resisted the idea strongly at first.
“I didn’t want to be part of that club, for a start. I didn’t want to be in this new world… Because of those feelings of not wanting to be there I felt ashamed and I didn’t want to meet those parents because I thought ‘They’ll be full of acceptance and love and they won’t understand where I’m coming from’."
The podcast originated as an attempt to talk to herself as she was in those first couple of weeks after Eva was born – the ‘gap’ between “when the diagnosis comes in and you’re terrified and feeling all the feelings and when you’re ready to meet other parents” Tessa says.
She observes that many parents find it too confronting to see older children or adults with their child’s condition so online advice can be a comfort. The podcast format allows people to receive information and feel less alone without actively going out and meeting people before they are ready to.
“I wanted to be able to share stories, show parents they weren’t alone, show parents that whatever they were feeling it was normal and someone else had felt that way.”
Most parents featured in the podcast have talked about the importance of allowing themselves time to mourn and honour the loss of hopes they had not just their children's lives, but for their own lives, she says.
“It’s really important to allow yourself time to grieve for the child or for the life you thought you were going to have. ‘Cause the reality is, it’s not just about you seeing the child and their life not being quite what you thought, but it’s about your life being not quite what you thought.”
What does she recommend family and friends ‘not’ say to a parent of a special needs child?
“Everyone is going to want different things to be said to them. For me personally, I didn’t want to hear ‘Everything happens for a reason’, I didn’t want to hear “God only gives you as much as you can handle’ because I certainly didn’t feel like I could handle it. I also didn’t want to hear how strong I was and that I’d be fine because that felt like people were excusing themselves from worry."
Tessa says parents can be protective of special needs children for good reason, but it is a good idea to teach family and friends how to feed and babysit their child so that it’s not “all on them”.
She also advises parents to see a couples counsellor pre-emptively as having a disabled child can take a huge toll on a relationship.
“Anyone who has gone through a grieving process knows that their grief doesn’t look like someone else’s grief.”