When asked for insights gained through her research on children with a disability, Maree Kirk says, “See the child first!” Maree initially started studying to find ways to best support her 21 year old son Spencer. However, it’s a path which eventually steered her towards an academic career, with her Masters degree focusing on wellbeing for children with a disability in New Zealand.

Because Spencer always comes first, my phone is always on, even during meetings. I always have a backup in place. I have to ensure I never keep him waiting, that all his needs and plans are covered. When he was younger, each day started with sending him out to school with one or two pages of plans I’d written out

Her dedication has obviously had a positive effect on her youngest of four. Spencer, who has Down Syndrome, is a well-adjusted young man with a close-knit family, and many friends and achievements to his name.

As for Maree, she’s now close to completion of her doctorate. She knows many other family carers who have upskilled in similar ways, it’s a common response to the experience of disability in their families.

“When you just want to give your child the most optimal outcomes possible, getting yourself together to actively support them towards independence, feels like a natural progression.”

He’s achieved a great deal for his years. He’s gone camping without his family on a five day Blind Foundation camp (Spencer is blind in one eye), and after completing high school, he studied at Polytech, gaining a work skills qualification. He’s currently doing a horticulture programme, works part-time at Sierra Café and one day at a dog daycare.

He is now the only one of Maree’s four children still living with her. The others initially left their Bay of Plenty home for their tertiary studies, and are now based in Auckland. The dynamic of the once lively family home has been a major adjustment for him, but he sees his siblings regularly, Maree says.

Spencer has gone on some of these trips by himself, sometimes staying in their university flats. The visits require a good chunk of dedicated planning. She says that it’s important that the inclusiveness that Spencer enjoyed growing up in their family, with he and his siblings helping each other flourish, continues into their adult lives.

When they’re out in public, naturally social Spencer will be the one to seek out the chef at a restaurant and introduce himself, and is the one to create unexpected and uninhibited fun on nights out on the town.

However, they’ve had to deal with disappointing attitudes, and discrimination can grind Maree down at times. A great deal of her role is to support Spencer with learning how to stick up for himself when dealing with difficult people. When facilitating him to get used to ordering food, she took him to a fast food outlet and waited outside while he went up to the counter. However, instead of taking his order, the server just ignored him, even after he repeated his order several times.

Maree wondered why the exercise was taking so long. A quick peek, and she realised Spencer was getting overlooked while the server took orders from other customers in the queue who’d come after him. She had to go inside and ask what had happened. Spencer told her, “she’s not answering me, she’s being a bully”.

“None of the other patrons intervened either. When I asked the server why she’d ignored Spencer, she didn’t reply. I had to speak to the manager to make it clear that they had to train their staff properly, and give Spencer a formal apology.”

Despite incidences like these, she says there are more positives.

“The essence of having Spencer in my life, is simply that he is loved. I want him to feel a sense of belonging in this world, of feeling valued and having dignity. Also important is setting down expectations for all aspects of his life, towards reaching his goals.’

What have her experiences been like with accessing governmental support?

“The child disability allowance is frustrating. It has to be renewed every three years by going to a specialist—you can’t use a GP—for a piece of paper,” she says. “You’re paying someone to confirm the obvious, that your child still has a disability. It’s no wonder that this particular benefit, along with the living allowance, is the least accessed by people entitled to it. There’s so much stress involved, that people often give up.”

She recalls an instance of a family who had a particularly demeaning encounter.

“I know a single parent whose disabled child had to go into surgery. She desperately needed time off to take care of her, but when she went to Work and Income for help, they said to her, if you need more money, why don’t you increase your workload? The stress on this already exhausted parent was terrible. She was already stretched to the limit, doing what she could manage within her means, such as growing vegetables to sell at markets to supplement her income, but instead of helping, they cut her benefit because they just couldn’t accept that she needed that time off.”

Funds that are provided get swallowed up, she says, with many families using it for additional therapies, or going towards goals for social inclusion. The impact on household income can’t be underestimated.

Spencer has had his own health issues. Despite the challenges, she says that for her, there’s never been any sense of ‘I can’t do this, I have to give up’. Even if she is always looking forwards, towards the next step, and is constantly in the role of teacher.

“Half the time I have to laugh at the things I catch myself plotting. How many other mums out there can there be contemplating stuff like, is he getting to the pub enough?”

She’ll find herself bowling up to shop assistants in stores when buying him new clothes to ask, “Is this item cool enough for young people to wear?”

“I don’t even escape in my sleep,” she says. “Once I was dreaming I was helping Spencer get dressed, getting him into a jacket, until I was shaken awake. It was actually my daughter who was sleeping next to me, and she was going, ‘Mum! I’m not Spencer!”

About the future, she says that she’s had to let go of expectations.

“I can never say with certainty, these are my plans for the next few years, because I don’t know where I’ll be then in terms of what Spencer requires. The only constant is that I will always be my child’s navigator throughout his whole life. For me, it’s an honour to be that person.”