What's it like to raise special needs children?

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

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.

The doctors were worried. They tried to hide it, Jordan Turner reckons. But their faces said it all: something wasn't right. Jordan's wife Mel was about to give birth to their first child.

At the end of a long night of labour, she was "at the end of her tether", going in and out of consciousness, throwing up and shaking. When Mel's blood pressure plummeted, an emergency C-section was ordered. Jordan held her hand and watched as the room filled with nurses. Mel was fighting, not just for her baby's survival, but for her own.

It wasn't meant to be this hard. After all, everything had been going so smoothly. Jordan and Mel fell in love when they were 16. They got hitched at 22 and were soon ready to start a family. Three kids, they decided, would be the right number. Jordan wanted a son to play rugby with, and take camping and hunting. Mel is a nurturer. She wanted a child to encourage, dote on and dress up. They would get their wish: a baby boy. Their reaction, laughs 25-year-old Jordan, was, "Just jubilation, eh. We were so stoked."

One ultrasound changed everything. The baby had Down syndrome, a developmental disorder. The doctors made reassuring noises. Not to worry, they said. Down's isn't life threatening. Jordan and Mel were sent home with stacks of pamphlets, and they turned to YouTube to answer the rest of their questions. But the specialists had more questions of their own. They ordered extra tests, which revealed the baby also had a serious heart problem; one of the biggest congenital defects that the doctors had ever seen.

"It felt like a knockout punch," says Jordan. "We spent a week crying and wondering what to do. I was like, 'I don't know whether I can go through any more of this'. What had we got ourselves in for? I mean, you expect your child to be successful, beautiful and all these other things, and then you're told: 'No, that's not going to happen.' We grieved, not because we were going to have a child with a disability. We grieved for the life that we had thought we would have. It wouldn't be a three-bedroom, picket-fence fairy tale."

Talk to the parents of special needs kids, and you discover their stories are woven together by common threads. The excitement of a pregnancy is brutally interrupted by a shock diagnosis. What follows, they recall, is a blur of hospital visits, hazy scans and what-ifs. What if he can't communicate? What if she needs surgery? And always at the back of their minds: what will life really look like further down the track?

Those questions were too heavy for some of Jordan and Mel's friends and family. One person said the couple was far too young to deal with a challenge of this magnitude. Another said they wouldn't have the financial means to raise a special needs child. But Jordan and Mel had the backing of their parents, many friends and their church. One in 1000 Kiwi kids are born with Down syndrome, and they knew there was support out there for young families. The biggest test, Jordan says, was to their relationship.

"In situations like this, a lot of guys go into their shells. It's all that 'stiff upper lip', 'harden up' kind of stuff. That would have been the worst thing to do. Mel and I were both feeling intense emotions, and we were under high pressure. We really needed to talk to each other. There was never a question in our minds about whether we actually wanted this child. We did. But there was a heck of a lot that we needed to learn and prepare for, and the only way we could do that was by being there for each other."

During 26 hours of labour, Mel lost a lot of blood. When the baby was finally born, he was bright purple and struggling for air. Jordan cut the cord, and within moments his new son was wired up with tubes and placed in an incubator, while Jordan attended to his exhausted wife. When Mel finally laid her eyes on her boy he was unmistakable.

Jordan and Mel Turner with 4-month-old Liam. Jordan believes his son will never be a sports star, but he will lead a pretty normal life. Photo / Dean Purcell

"Very early on, we told people that his name would be Liam," she recalls. "So he always had a name. People would say, 'Liam's going to be okay', or 'We're praying for Liam'. Six hours after he was born, they wheeled me into his room. I didn't have the strength to hold him, but I finally saw his face. I held his little hand through the window of the incubator. I said, 'Yes, you're definitely Liam. I've been waiting for you for so long'."

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."

In February, Kiwi dad Samuel Forrest caused an international media storm when he claimed his Armenian wife had walked out on their Down syndrome baby. The couple had received the diagnosis only after their baby was born. However, scientific developments are allowing us to learn more and more about our babies while they're in the womb. The ethical challenges are growing too. How much should we know? Should a special needs diagnosis determine whether a pregnancy is continued or terminated?

"It's good that we have more information during our pregnancies," says Rachel, "but we expect everything to be perfect, because that's what we think we're entitled to. There's a lot of pressure on women to be successful in every way. I feel like there's a real danger if we strive towards a non-existent ideal of having these perfect children. What do we do if they're not perfect? We can't just decide they're not worthy, and discard them. We are playing God, and saying 'this is not good enough'. And that really scares me."

He doesn't claim to be God, but in the Waikato town of Thames, Cliff Robinson comes pretty close. He's the devoted father of two intellectually impaired children. Every day, Cliff gets Marita and Johnny dressed, then drives them 17km to a day programme. Back home, he does errands and washing. He grows veges and goes fishing to save money on food. Today, he caught a few snapper and a nice big dogfish for tea. In the afternoon, Cliff picks his kids up and watches them until bedtime. They can't be left alone. It's a routine that's familiar to many parents, but here's what makes Cliff's story different: his kids are, in fact, adults. He's been their sole carer for 40 years.

"They are entirely dependent on me. I hate to say it, but I'm nearly 80. And my biggest worry is, 'What happens when I pass on?' I dread to think how they'll take it. I was updating my will this morning. Sometimes it just hits me. They're going to lose their home, their security, their lifestyle. They lose everything, the moment I die. I don't have any other children; there's no family. There's nothing. They'll have to go into care."

Cliff Robinson with his special needs children Marita and Johnny, in 2010. Photo / NZ Herald

In 2012, Cliff was part of a group that took the Government to court in a high-profile case that resulted in fairer payments for family carers. But this has never been just about money. Cliff has always been determined to look after his own children. People come up to him on the street and congratulate him for his commitment. Others, he says, "just don't want to know". He'd love it if someone came round and did "girly stuff" with Marita.

But most people don't have time for that: "They're caught up in their own lives." Marita is sweet and sensitive, while Johnny can often be "fairly dark and remote". He's schizophrenic and diabetic. He needs insulin four times a day, and is on medication to suppress sexual urges. A temper tantrum can erupt like a volcano, even though Johnny is on strong psychiatric drugs. His dad says, after all these years, parenting is still tough.

"You never get used to it as time goes by. Never. It's very hard to love someone when they are screaming and cussing and hitting you. But I've dealt with it. You just learn to cope. See, I love them. I love to cuddle them and give them kisses and tell them how much they mean to me. My daughter comes out in the morning and walks into the lounge and says, 'Oh, my daddy, I love you.' And that means everything in the world."

After two weeks in neonatal care, little Liam Turner came home with Jordan and Mel. For the first time in months, they were enveloped in silence and stillness.

There were no beeps or buzzers; no nurses to check on the baby; no relatives nearby to fuss over him. At first, all he did was feed, sleep and wake. Soon, Liam started smiling and using his voice. He's pretty cheeky. Last week, he wriggled himself out of his pants.

Jordan believes his son will never be a sports star, but he will lead a pretty normal life. A major operation in January closed two holes in Liam's heart. He may need more surgery, but for now, the outlook is bright. The little guy is starting to put on weight. Therapists and home care nurses are helping him develop muscle movement and motor skills. His growth will depend on the amount of time and care he receives. Mel's a full-time mum. Jordan works as a landscaper during the day, but his favourite job begins when he comes home.

"At first, part of me just wanted to close the curtains and get on with it. But then I made the decision that I wouldn't be ashamed. Having a special needs child is not something I want to hide. To me, that's so selfish. Liam would pick up on that. When he grows up, I want him to know that we embraced him and loved him from the start. Sure, there are trials and tribulations. But after spending a few weeks in Starship, we became so grateful. There are many families in much more difficult situations than ours."

Having more children is on the backburner for Jordan and Mel. One day they hope Liam will have brothers and sisters to look out for him. But the Turners don't want to become overprotective parents and, as time goes by, they're learning to let go; learning to take things day by day. Their experiences are shared by many parents of special needs kids.

It's funny, they say; you set out to change your child, your child ends up changing you.
"Evie has given me depth and compassion," says Rachel Callander. "A greater ability to love and accept. I'm less judgmental. I have a broader world view. As a photographer, I see even more beauty in the world. I'm less afraid of people, and I can see potential in others. It's made my life richer. I've stopped writing people off and believing they have no place in society. Everybody can be something, and everybody is important to somebody."

Her daughter was important to more than just "somebody". Evie surprised, delighted and challenged many people in her hometown, Timaru, until the night she passed away peacefully in her sleep in 2010, aged 2-and-a-half. Evie's death came out of the blue, but she had survived much longer than expected. In the four years since her death, Evie has touched many more lives. Rachel has told her story on television and at conferences.
There's one question that follows Rachel around: does she want to have another child?

The answer, she says, has to be "no". She carries the gene that caused Evie's disorder. Rachel discovered this only after her baby was born, and no one else in the family has had Evie's condition. It was hard to decide against having more children, but Rachel is now at peace with it.

Every day, she wears something bright yellow, in Evie's memory. "It's because of the Coldplay song Yellow. My husband Sam and I went to their concert, and they sang the lyric: 'Your skin and bones turn into something beautiful'. Evie was just skin and bone, but she was so beautiful to us. And that's when it hit me. As they sang, massive balls fell from the roof. Sam and I looked at each other and burst into tears. We played that song at Evie's funeral. Of course it was tough. Real love is tough, and you go through fire for it. But you come out so much stronger."