What's it like to raise special needs children?

By Jehan Casinader, published on the New Zealand Herald

How do you love a child who may never be able to say ‘I love you’ back? A child who’ll never walk or talk, and be reliant on you for the rest of your life? Jehan Casinader meets the families raising special needs children.

Evie, with mum Rachel Callander, was born with a rare chromosomal condition. Photo / Rachel Callander

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Rachel Callander knows a lot about waiting. Her daughter Evie was born with a complex chromosomal disorder that warped her internal organs and stunted her growth. Evie couldn't walk or talk, but before Rachel and her husband Sam got up each morning, Evie was already wide awake. She was excited, "like a little puppy". At her own speed, Evie reached unique milestones. She was able to reach out and touch people's faces. She could hold her own bottle. She developed a wicked, infectious giggle. And yet Rachel believes some people simply saw Evie as a helpless, disabled child.

"One of the first reactions was from a close family member who said it would have been better if Evie died. And that just broke my heart. It wouldn't have been better. Every day you live on this planet is a good day. But it was hard. We were looking at this beautiful little child and wondered how long she'd be with us. We decided to make Evie's life as normal as possible. We made her accessible to our friends, and they got to know her."

Rachel is a professional photographer who looks for beauty in ordinary moments. Having learnt so much from her daughter, she wanted to share it with others. Rachel published a book called Super Power Baby Project, a collection of stunning portraits of children with chromosomal disorders. Each portrait told a unique child's story.

"The language we use to describe disability in our culture is unacceptable," she says. "We say still describe people as 'retarded' or 'abnormal'. We need to change that. I tell people that children like Evie have superpowers. They say, 'What do you mean?' Well, they're inspiring change in their communities. They have an incredible capacity for unconditional love. They can communicate so much without even using words. Evie had such big eyes; she drew people close to her and invited them to engage with her."

Read the full NZ Herald article.

From today's nzherald.co.nz magazine. Thank you Jehan for your thoughtful work.

Posted by Super Power Baby Project on Friday, April 10, 2015