More Supports Needed for ‘Neglected Disability’

Here is the story of a seven (07) years old with FASD being told by his grandmother, the sole carer for this child since he was 13 months old.  Article by Selina Powell of – The Marlbourough express

Robyn is the sole carer for her 7-year-old grandson who has fetal alcohol spectrum disorder.Like any grandmother, Robyn wants her grandson to be himself, to have goals and become a “lovely adult”.

But exposure to alcohol before birth means he faces unique challenges that other children do not.

Robyn, who lives in Blenheim, has had sole care of her 7-year-old grandson since he was 13-months-old.

He has difficulties learning new things and occasionally has violent outbursts that are linked to a diagnosis of fetal alcohol spectrum disorder.

He also had difficulties concentrating, Robyn said.

“It’s like he’s got 15 televisions going on in his head at once and he’s got to turn them all off to focus on one.”

Many people misunderstood the behavior of her grandson, and Robyn struggled to get the support she needed to look after him.

She was worried about what would happen when she was no longer able to look after him.

“My biggest concern is what’s going to happen to him when something happens to me.

“I don’t want him ending up on the streets.”

The child’s aunt Belinda said Robyn and her grandson had a special bond.

“It’s a unique relationship – a grandmother looking after their grandchild.

“They share their own unique world together.

“She would walk over hot coals for him.”

It was a big step for Robyn to ask for help, Belinda said.

“She’ll speak up for anyone else but she’s the last one to speak up for herself.

“She struggled to ask for help because she felt like she’d failed [her grandson].”

Robyn’s friend Miranda also cared for her 4-year-old grandson with fetal alcohol spectrum disorder.

Miranda had cared for her grandson since he was born.

Miranda said she worried about her grandson’s future, particularly about his education.

“We’ve got no help. You can knock on everyone’s door and they just slam the door in your face.”

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Neither Miranda nor Robyn regretted the decision to take over the care of their grandchildren.

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