A mom talks: Life with a disabled child

By admin
25 July 2014

When the news broke that a South African mom living in England had killed her three disabled children parents worldwide were immediately divided. “How could a mother do that to her own children?” one camp asked, while the other had sympathy for the mom who’d had to look after three special-needs children. SuperMom Janine Sheard tells her story.

When the news broke that a South African mom living in England had killed her three disabled children parents worldwide were immediately divided. “How could a mother do that to her own children?” one camp asked, while the other had sympathy for the mom who’d had to look after three special-needs children.

People are divided about the tragic murder but there’s insight to be gained about the realities of living with disabled children from a mom who’s bringing up a special-needs child. Janine Sheard, SuperMom of four-year-old Adam, tells her story:

“I get jealous. It’s difficult to admit but it’s the truth,” says the 37-year-old mom of two. “When I see a one-year-old doing something simple that my four-year-old can’t do, an agonising jealousy shoots through me.”

This honesty is just one of the survival techniques Janine has taught herself in the past three years.

“There’s an anecdote that having a disabled child is like planning a holiday in Italy and landing in Holland.”

Janine and her husband, Darryl, definitely landed in Holland when she gave birth on 14 July 2010.Tests done before the birth didn’t ring any alarm bells and Adam’s birth was normal.

But Janine and Darryl became disillusioned when Adam was diagnosed with the Cytomegalovirus shortly after birth. The virus attacked his immune system and suppressed his growth. As a result Adam has brain damage and can’t speak, sit, walk or even eat. He takes in nutrition through a feeding tube and is confined to a wheelchair. He also wears a hearing aid and glasses, and Janine and Darryl spend thousands a month on his medication, food and therapy. They’ve also adapted their house to make it more accessible for him.

Despite the many challenges of Adam’s disability Janine says she’s learnt perseverance through him and that she loves him more every day.

“I do have sad days but lately I’ve noticed that my sad days are becoming fewer and my happy days are becoming more frequent.”

She says one of the biggest worries of parents of disabled children is that a mistake was made with the diagnosis or that they’re not doing enough for their children.

“What if I missed a possible diagnosis or treatment and the window period in which my child could be treated has passed?

“I’m worried about his future and whether he’ll ever be able to drive a car, marry or live independently.

“I’m afraid because of the pain he’ll have to endure because he’s ‘different’ in a world that can be so hard.”

But she stresses that she makes an effort every day not to allow her fears for the future to dominate her life.

“I must take one day at a time and confront the challenges as they arise.”

How to help a mom with a disabled child

Janine says she wishes friends and family weren’t afraid to ask questions because most misconceptions and stereotypes about disabled children originate from uninformed people who are too afraid to ask questions.

“I want people to ask questions. Talking is therapeutic and I want to educate others so that what society sees as abnormal will become more normal.”

She says women should be aware of their friends’ need for help because moms of disabled children don’t always have the courage to ask for help.

“If you visit a mom of a disabled child and notice a heap of unwashed dishes or empty fast-food containers at her house offer to make dinner for them or to wash the dishes.”

She adds that although people should be sensitive with their questions about disabilities she appreciates those who are interested and ask her about Adam’s condition.

Love of a brother

A great source of support isn’t only her husband, friends and family but also her other son, six-year-old Dylan.

“Dylan is ahead of his years in the love, dedication and protection he shows towards his brother. His love for his brother is so deep that he’s prepared to sacrifice time with me and understands that Adam needs me.”

She says she and her husband tried to disturb Dylan’s routine as little as possible after Adam was born.

“We would drop him off at school in the morning then I would go to the hospital. When he came home from school in the afternoons I was there to play with him. Later I would make him dinner and bath him.”

She says being a parent is already exhausting, let alone being a parent of a child with special needs.

“People often ask me how I handle Adam’s condition, and the truth is I don’t know.

“What I do know is at the time I had two options: to shut my eyes and hope things would change when I opened them, or to raise Adam like a normal child and cope with the problems as they arose.

“I chose the second option.”

-Mieke Vlok

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