Strong Voices

Awhi Ngā Mātua is a community of parents who Emily Writes wishes she had known in those long nights when she felt alone and overwhelmed with the responsibility of caring for a sick child.

Emily, a mother of two boys living in Wellington, is the author of best-selling parenting books Rants in the Dark and Is it Bedtime Yet? – with another, Needs Adult Supervision, just released.

She is also the Director of the ‘Awhi’ online community.

Awhi started as a Facebook group for parents at home supporting children with intellectual disabilities in the first lockdown in 2020.

Cut off from all their usual supports, Awhi provided connection and online resources to get families through the long hours of isolation.

Emily started out advising and writing content for the group. “I came in as a contractor but fell in love with the Awhi kaupapa and felt like this was what I had wanted my whole parenting life.”

Awhi is now evolving from a platform offering resources and support to a collective where parents take the initiative to build a strong community for each other.

“It’s always in my mind,” Emily says. “I think, this would be good for the community, or that would be good for the community.” She says 90 percent of dialogue takes place in private discussions.

“Often parents are not asking for advice. They just need someone to say, ‘That is really hard’.”

Emily says she recently had a call at 3am from a parent who has a child with autism and struggles to sleep. “It’s just about saying, ‘You are not alone in this’. Often I am awake at 3am because I have an autistic child and a child who needs testing every two hours in the night.”

Eddie has type 1 diabetes. “We are managing his levels every two hours, while we are managing his health needs.”

Emily and her husband also know what it’s like to be judged by health professionals. When Eddie became seriously unwell, and before his diagnosis, they were told by a doctor that it was what happened when people didn’t manage their children’s diabetes. “When we came in with an unconscious child, they clocked us as two irresponsible parents.” She recalls saying: “What? He has diabetes? How do we cure that?

“With Eddie’s diagnosis, I knew nothing about diabetes. We didn’t have diabetes on either side of the family.

“My husband and I didn’t finish high school, so going up against doctors we say what does this mean and what does that mean? It’s really hard,” she says.

“My husband is Māori and there are few parts of the system that follow tikanga. They look at my husband and I and they see tattoos and they think, low-class.”

Emily says Awhi tries to speak in the language of parents – “language that is culturally safe and culturally appropriate”.

Awhi Ngā Mātua is led by founder Elizabeth Goodwin and Emily, with IHC in a supporting role. it has recently received funding from Oranga Tamariki to develop the community which, Elizabeth says, is about creating parent champions.

Elizabeth says the parents who support children with disabilities and high health needs exist on the edges. “They become different when this happens – even from their family. If we can help parents deal with these day-to-day things, then we have done a really good thing. We want it to be as collective as it can be.”

Connect with Awhi Ngā Mātua on our website or facebook.

Caption: Emily Writes, with her son Eddie, was drawn to the kaupapa of Awhi Ngā Mātua – an online collective where parents are building a strong community for each other.