A remarkable turnaround

Anne Bailey shares the story of her son Robbie

As a young boy, our little Robbie was an absolute delight – extremely happy, sociable, with a very quick sense of humour. Robbie never let the fact he had Down Syndrome hold him back, from anything.

From birth to around 13 years old, Robbie was tracking really well. He reached many milestones early, despite his disability. Numerous specialists commented that he had the best speech and language they had heard from a child with Down Syndrome.

Although his fine motor skills have always been a problem, his gross motor skills and coordination meant he could compete in a variety of mainstream sports, including football, which he loved.

Robbie went to school in Port Lincoln from Reception to Year 7, with some one-on-one support. His numeracy and literacy were at a reasonable level and he was really popular with his peers.

But a lot changed for us in 2009. We relocated back to Adelaide, moving from a large, family home, to an apartment and Robbie, who is our youngest, commenced high school.

Robbie didn't cope with the change. He always had an amazing imagination, but he began to immerse himself in an imaginary life, and it soon began getting in the way of ‘normal’ life. Our once sociable boy began rejecting invitations from friends, preferring to spend time alone in his room, acting out imaginary situations.

It became a huge effort to get him to cooperate when we wanted him to come anywhere with us, even when he was looking forward to it. Whenever we were in the car, he would have imaginary conversations on an imaginary phone and completely shut us out.

Then, in 2013, Robbie hit rock bottom – and we did with him.

During a weekend visit to Port Lincoln, he saw his friends having the life he dreamed of – dating girls, driving cars, going to parties…I could feel his disappointment and it was heartbreaking. It was then that I discovered he was barely sleeping at all.

Alarmingly, there were occasions where he took off by himself during the night and was brought back home by the Police.

Around the same time, we learned that his reading and writing ability had decreased since Year 7 and we were told he was no longer suitable to continue a program designed to transition him into open employment. It was another blow to Robbie’s confidence and self-worth.

By the end of the year, Robbie had developed an uncontrollable tick and he did not converse with us at all; he was completely unresponsive. It was as though he was comatose.

We sought help from various specialists, and although we had periods where the old Robbie would return, for the most part, he was withdrawn, non-communicative and isolated during his late teenage years. He no longer participated in the things he loved most like music, sports, or even watching TV. He didn’t get any joy out of anything.

This dramatic change in his personality came as a huge shock to us, our families and friends. We wondered ‘Where did he go’?

As Robbie graduated from school, I remember realising there was no way he would be able to get a job, or engage in anything meaningful in the state he was in. We were almost at breaking point.

It was hard to feel optimistic about Robbie’s future anymore. As a parent of a child with intellectual disability, feelings of hopelessness are all-too common, especially because trying to access any service is really hard work.

Thank goodness we had Minda.

For us, things began to turn around about six months ago. We took Robbie to a new specialist and Minda was there to help us when we were in a desperate and hopeless situation. All it took was the right phone call at just the right time – suddenly we found ourselves out of the darkness.

Minda’s day programs have made all the difference. Robbie slowly, but surely, began re-engaging with us. At Minda, he has had the opportunity to learn and develop at his own pace, in a setting that suits him. These vital workshops give participants the tools so they can become more independent and complete daily tasks like catching public transport, learning to cook and developing skills to live out of home.

Donations to Minda can help a young person, just like Robbie, to develop their skills through a life skills training program.

Robbie is now the most confident Gig and I have ever seen him. His self-esteem has just gone through the roof.

Just the other day he came home from Minda bursting with pride – he had washed a van. While this may seem like a small achievement for some, for Robbie it means so much more. He is hungry for learning and he’s capable of achieving so much.

Through the MyPATH program Minda runs, Robbie is learning and practising the skills he needs to gain meaningful employment, which we once thought was not a possibility. Without access to day programs at Minda, Robbie may not have been able to take this next, meaningful step.

Robbie is really excited about joining the workforce - he hopes to one day work with Minda's Envirocare gardening team.

Although Minda’s day programs have opened up Robbie’s world, it comes at a significant cost. Customised facilities, specialised equipment and qualified staff are essential to help provide the support Robbie and others living with intellectual disability need.

But there are many more caring parents and families of people living with intellectual disability who desperately need support. They are families in crisis.

Your gift will provide the opportunity for someone like Robbie to participate in a life skills training program or a leisure activity like painting, pottery or woodwork.  Alternatively, it can provide in-home support to a family by one of Minda’s highly trained staff.

Finally, Gig and I are at a point where we have hope for the future. At 117 years old, Minda is one of South Australia’s oldest and most respected disability organisations and for hundreds of people in desperate need of support like us, it’s a lifeline.

In fact, we are now looking into independent living for Robbie through Minda. It really is a ‘one stop shop’ and it is such a relief to know that Minda will still be here when we’re not.

Robbie has made a remarkable turnaround. Our house is again filled with the beautiful sounds of chatter, laughter and joy.

Your continued support of Minda can make all the difference to families like ours. We can be positive about Robbie’s future and know that we have ongoing access to the high-quality, vital services he needs.

Minda have done so much for us as a family; we can’t thank them enough.

Thank you again for your support of Minda and for taking the time to read my letter.

Anne Bailey