Local Focus: Down syndrome reality very different to mothers' expectations

To celebrate World Down Syndrome Day, two Tauranga mothers discussed what is was like raising children with the condition.

"The paediatrician, who was on call at the time, just said 'oh, there are a couple of things that make us think that maybe he has Down syndrome... our world fell apart'," said Peta Troughton, the mother of Toby.

"I had lots of ideas around what Down syndrome was and they were wrong, really outdated.

"Normally when you have a baby they go 'congratulations! They're healthy, good luck - life's going to be great!' When you have a baby with a diagnosis they say 'these are all the things they won't be able to do.

"Not that they were ever specifically said to me, but things like he won't learn to ride a bike, he won't leave home, he won't read, he won't write, he might not talk - everything's gong to be really hard, life is going to look really sad and really hard.

"And... it's not true."

Cassy Williams is another mother who didn't know her child Lacey would have Down Syndrome until she was born.

"I think there was definitely a process of grief. It was basically getting our heads around what Down syndrome was, what our life was going to be like now and how it was going to be different to what we thought."

Other people have 21 chromosomes while people with Down syndrome have a copy of their twenty-first chromosome, three of the 21st chromosome instead of two.

Cassy said the experience of raising Lacey has been valuable for their family.

"The reality is totally different from what we thought it was going to be - she just developed and grew like a regular child but she takes time. Everything is sort of in slow motion so it's helped us really take life day by day and slow down."

For Peta, language when referring to her child is important.

"I definitely try to put people-first language, so I say 'Toby has Down syndrome', he isn't Downs or Downsy. That to me makes a big difference because I'm not just a mum. If I was to be categorised as one thing I'd feel really upset about that.

"I want to make sure Toby has that same full breadth of experience in life."

Cassy said the advice she'd give to parents welcoming Down syndrome children into their family, would be around taking it one day at a time.

"Not to look too far into the future, just take every day as it comes - and not to worry because everything is going to be okay."

"First of all I'd say congratulations," Peta said. "I feel like that's something that wasn't said to me enough when Toby was born."

"Your kid with Down syndrome is just another piece in the puzzle."

World Down Syndrome Day is Saturday, March 21, marking the triplication of the 21st chromosome which causes Downs syndrome.

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