Raising a child with intellectual disability

There’s no denying, parenting is hard work.

If you are a parent of a child with intellectual disability, the prospect of raising your child can be overwhelming. Like every parent, you’re embarking on a lifelong journey to equip your child with the skills and knowledge to help them live and thrive.

These skills include supporting them to achieve their goals, helping them solve problems and deal with conflict and disappointment. And life skills like teaching them about building healthy relationships, and how to protect their emotional, mental and physical wellbeing, as well as providing for themselves when you are gone.

Parenting is a tricky road to navigate, however, you’re not on this journey alone.

We recently spoke to Bernie and Grace, who wanted to share their journey as mother and daughter with you.

Finding relief with a disability diagnosis

When Grace was diagnosed with an intellectual disability and autism at the age of seven, Bernie felt a wave of relief come over her.

“Being able to identify Grace’s disability meant that we could better help her. It helped us understand what support Grace needed to help her in every way, including at school, socialising, with extended families,” Bernie said.

“That also helped us understand how we could show Grace that we love her, and build that connection. As Grace has grown, she has become loving with those who help her, and incredibly loyal.”

“I am really blessed to have her, because she has excelled in so many ways, and made me a better person.”

Building and maintaining a social life

Grace came to work at Endeavour Foundation Business Solutions site in Toowoomba after a work experience trial while at school. While she tried other workplaces, Bernie and Grace found that Endeavour Foundation catered to and supported Grace’s individual needs.

She felt accepted from the beginning, telling her mum Bernie after her first day, “It is really great. They are all like me, we are all the same.”

Finding her circle of friends meant that Grace could walk to work, go to the shops and other social events without worrying her mum, dad or brother. This also gave Bernie and her husband Peter the opportunity to build social connections of their own.

Like Bernie, many parents of children with disability, share that they have made friends for life within the disability community.

“Finding a circle of friends to walk the journey with was so important,” Bernie said. “My circle of friends treat her as if she was their own, what more could I ask for?”

The importance of routines

During the COVID-19 pandemic in 2020, with many Business Solutions sites closed under government directive, Grace said she found it very difficult to manage.

“I was really sad. I couldn’t see my friends, and couldn’t come to work,” Grace said.

“There was no direction and no routine for Grace, and as parents, we had to step in and find the routine. Whether it was going for a walk at a certain time, or feeding the ducks, or bringing the washing in. A routine was needed to be established because that’s the support Grace needed,” Bernie said.

“It also gave Grace the chance to build life skills.”

When the lockdown lifted and work resumed, it’s no surprise there were smiling faces on the first day of work.

“It’s hard work that they do. How many other people can stand there and do the same thing? With focus and attention to detail. I mean, they [supported employees] come home tired, but they all start the day laughing and they all leave laughing,” Bernie said.

Like many parents of children with disability, Bernie has plans in place for when she and husband Peter are no longer around. “The house we live in, we bought for her. So that she’s comfortable when Peter and I aren’t here. She’s already used to her surroundings, and knows how to get to the places she needs to be. We are just around the corner and not far from the shops, and there’s a group of them who walk to work, and they all like each other.”

“We bought it [the house] with her in mind, to have a carer at one end and Grace and her housemates down the other,” Bernie said.

From one parent of a child with an intellectual disability to another, Bernie’s advice is:

“There are many dedicated allied health supports out there to help you through it. And as your child gets older it can get harder and they might need more help but don’t panic, they will be ok."

"It is difficult for parents to socialise. You don’t get the time to go out and have a coffee, particularly when they’re younger. Even popping into the shops was challenging.
But letting them become their own person, well, it has opened up a world I never had experienced, I am so proud of her.”

Grace clearly adores her mum Bernie also, describing her as “…very, very, very, very important to me!”.

Opportunities and inclusivity have increased in recent years for people with disability. The NDIS and organisations like Endeavour Foundation have helped to create new possibilities for people with disabilities to flourish in their community.