Helen and Max Packer tell the story of their son Jonathon
Watching our son at his 29th Birthday, surrounded by his family and friends, at his very own apartment was such a proud day for us.
It was one of those moments of pure joy for us as parents, something that many may take for granted. We take such delight in these milestones, achievements that may be small to others are marvelous to us; they are triumphs for our son Jonathon.
Many of the milestones we have seen Jonathon achieve along the way would simply not have been possible without the support of Minda.
But let us first take you back to Jonathon’s birth. It was one of the happiest days of our life, but also one of the most frightening. Jonathon’s birth was incredibly traumatic and he was born with his umbilical cord wrapped tightly around his neck.
Although his birth was life-threatening, Jono fought to survive and we were able to leave the hospital with a happy and healthy baby boy.
It wasn’t until he was around six months old that we noticed that something was wrong; he wasn’t meeting the same milestones as other children his age and it took the next few years to find out why. Initially the doctors diagnosed delayed development, then ataxic cerebral palsy and motor and verbal dyspraxia.
There are several types of cerebral palsy, with ataxic cerebral palsy being the least common – it affects around 5 to 10 per cent of people with cerebral palsy and has an impact on body movement and muscle coordination.
Dyspraxia is a motor disorder caused by damage to the brain and it means Jonathon can have trouble handling small objects, carrying out planned movements and also affects his speech.
Although Jonathon always had the love and support of his family, including his older brother and sister, there were some really tough times. People can be so cruel, so unkind; we even had a doctor who basically called us stupid for not knowing what was affecting our son.
Having a child with intellectual disability can be really isolating at times, especially when the kids of your friends and family members are reaching so many milestones together.
In so many cases kids with intellectual disability get left behind. We’ve heard people with disabilities described as the ‘largest minority’ in Australia and they are often not afforded the rights so many of us take for granted. Although we’ve been fortunate to have each other and great support along the way, there are so many people with children with disabilities who are doing it tough; they are all alone in their battle for support and services.
Minda gives people living with intellectual disability the right circumstances and the chance to succeed; by giving people choice and access to the support they want and need, Minda helps people living with intellectual disability achieve milestones at their own pace.
These are milestones that may take longer than what is typically expected – for example, Jonathon found crawling and walking really hard and had to be taught to do both. At around three to four years we celebrated Jono crawling, and then a few years later he was walking with a frame. But, the most exciting moment came when he was seven years old.
We will never forget the day Jonathon walked on his own; we were working out by the shed and he was trying to get our attention. It was as though he just decided, it’ll just be easier to walk over by myself, so he did! It was so wonderful, we were both crying and yelling out in excitement!
It’s as though he has his own timetable in his head and when he decides he wants to achieve something, he does it in his own time. He decides when and then he just does it!
And Minda has been there for Jonathon when he has been ready to take the next step and has really given him the most chances to achieve, from day programs, to working, respite and accommodation.
It started back in 2004 when he was still at school. We were part of a group of parents who were concerned about not being able to access day programs; although there was great demand, there were limited options for school-leavers.
We did a lot of lobbying and the Minister for Disabilities at the time, Jay Weatherill came on board; he went to Minda to help with a solution and Chuaninga was born, a five-day per week program for young people with intellectual disability.
The day program gave Jonathon the chance to make new friends, engage in a range of activities and also build on skills that could be applied in the workplace. We also noticed how much he matured and how much confidence he gained; it was a real credit to the staff at Minda.
Although day programs are so important, without funding there are only a limited number of places in each program and there are so many people on waiting lists for support. We know this, because we’ve been there too. Every person with a child with disability can attest to it – we all know the struggle of trying to find supports and services.
Without access to the day programs at Minda, Jonathon may not have reached his next milestone, which was to work.
In his first year at Minda, one of the Developmental Educators Lyn noticed Jono’s progress and suggested he could work. To prepare him for this next step, Minda worked with him on a range of different skills and he took part in work experience at Minda. Jonathon just loves his job in Minda’s Packaging Solutions.
Although we know how important Jono’s job is to him – it has provided him with so much in the way of development and has introduced him to many of his friends – we are sorry to say that the same cannot be said for many people living with intellectual disability.
The employment rate of people with disabilities in Australia is low. There are so many barriers people living with disabilities and their families have to overcome, and even when there is access to work, there can still be limitations to transport, employment, education, support and accommodation.
For many years we fought for accommodation opportunities for Jonathon because we knew how important it was for him to make the transition from the family home into a home of his own.
Just like his brother and sister, when they moved out and found their own homes, it would give him the chance to achieve independence. For us it is no different, just Jonathon has done it at his own pace and Minda has been there to support him.
It was also such a relief to see Jonathon secure accommodation, because it can be so hard and has taken us a long time; as time marches on and we get older, it gives us peace of mind to know he’s settled and happy and we just hope other families get the same opportunities we have.
There were really mixed emotions about Jono moving and in our heart of hearts, we didn’t want him to leave the family home, but that’s just not fair for him. He won’t have the chance to grow up and out and have new opportunities, unless we let go. We’re apprehensive of course but really proud of him and I know how proud he is of his apartment.
Just like anyone else, Jonathon has the right to grow and develop and although as a parent you always want to protect your child, you also need to let them live. They need to be given the chance to achieve, to be independent and to succeed and Minda helps Jono do this.
Jonathon’s apartment gives him the chance to wander around freely in his community; it’s easy to underestimate how much people value the idea of community. Although he has us, he has a family at Minda too and being able to walk over to the café there, and visit his friends, means he doesn’t feel isolated, which is fantastic.
We love it at Minda too – the guys at Minda like you for who you are; they are accepting of all individuals and families, no matter their situation.
Although we’ve been lucky to have such great support from our family and from Minda, we know there are people out there doing it tough. The emotional, physical and financial toll can be overwhelming and there are so many South Australian families caring for a child with intellectual disability that desperately need support.
Minda gives the chance for people to grow and develop at their own pace, to feel included in their community and to have the opportunity to succeed, just like our son Jono.
Thank you for taking the time to read our story.
Helen and Max Packer