A letter from Nenad

You do not know me, but I hope that if I meet you one day, I can shake your hand and thank you for reading my letter.

It’s a difficult letter for me to write. My family and I have gone through so much. Just when we thought we’d found a safe haven from civil war in our home country, Croatia, my wife Jasmina and I had to face a new, unexpected, life-changing challenge.

My name is Nenad Cupac. In 1993, Jasmina and I found a welcome home here in Adelaide and quickly managed to settle down to a new life.

In December 1997, our first son Alen was born and then in May 1999 we were again blessed with the arrival of David.

As our sons got a little older, we noticed that Alen’s speech wasn’t developing as expected, and David was also regressing.

We saw so many specialists that it was a relief when the boys were finally diagnosed with Autism Spectrum Disorder back in 2001. I say ‘relief’ because the diagnosis meant we could start on the road to helping our boys and rebuild a new life.

Right from the start, Alen and David required full-time care and support, so my only choice was to quit my job. Since then,despite the challenges, we’ve learnt a little more everyday. You grow with the disability.

When they were young, the stress was enormous and kept building as Alen and David grew. As well as the expected difficulties of coping with two young children, their severe autism meant we also had the problem of no set sleep patterns. Even now they have difficulty sleeping; with this almost constant disruption, either Jasmina or I often have to stay awake all night.

Alen and David have no sense of danger and we can’t leave them alone for a minute. As they grew and became more active our problems grew as well. I had to extend the garden fence because one night David let himself out into the garden. After searching frantically, I found him on the roof of the neighbour’s shed. He had climbed up by himself.

Communication is the big challenge. In the beginning, it was like talking to a wall, but now I use many different methods to communicate with the boys.

When we first took Alen out he would become upset and begin screaming. Going out as a family, people are generally helpful, but very occasionally they can be judgemental because they don’t understand the boys have Autism Spectrum Disorder.

With such dedication needed to take care of the boys, we try to focus on one thing at a time. I spend a lot of time teaching Alen and David everyday skills like how to shop and take part in the community.

Even the most basic task is hard work, but when we achieve a breakthrough, it makes it all worthwhile.

Like most siblings, they are completely different in terms of personality. Alen gets upset when he can’t make himself understood. David, on the other hand, is a very spiritual child.

Alen loves his food, footy, basketball and going to the movies. David likes to draw, plays computer games and loves going on long car rides. Jasmina and I feel very lucky to be in Adelaide and to have access to community activities like the Museum and Art Gallery, parks and also beautiful beaches.

Alan loves the Gallery, especially when they have video installations. He will sit and watch the whole thing!

When I’m at home with the boys, Jasmina goes out to work. She works very hard at her job and at home and she’s always exhausted. The only real chance we have to recharge and be together as a couple is when the boys go to Minda’s respite care home for two nights, every fortnight.

I don’t know where we would be if we didn’t have the specialist respite care that Minda provides.

We were on a waiting list for 5 years; there just aren’t enough places. Minda already help 1500 South Australians with homes, supported jobs, respite and lifestyle services.

Alen and David have been going to Minda respite care for two years now. The specialist staff are very patient and the boys really enjoy being there.

They learn and do new and different things while they’re there. Alen is proud that he can begin to do things independently and David often wants to stay at Minda longer. They can make new friends and build support networks that will be useful to them for many more years.

We have seen great development from the respite services at Minda and teaching the boys at home. Now we can take Alen out to a restaurant. Both boys have been on a plane, something we never could have dreamed of a few years ago.

Despite the great strides the boys have made, we do sometimes worry about their future. We have no family here in Australia to help us; we have some wonderful and very patient friends, but they can’t help us all the time.

It’s very exhausting, and sometimes difficult to cope. It’s a long journey, but a journey where you become an entirely new person – you really need to learn to multi-skill!

Thankfully Minda is there for us, whenever the family needs it, for as long as we need it. With the right support and education, I know both my boys can learn the skills to enjoy all that life has to offer.

For me and my wife Jasmina, that’s worth all the financial and emotional heartache in the world.

The dedicated and highly trained people at Minda understand what it’s like for us as a family and speak out on behalf of children like Alen and David. My voice alone is not enough – although I often wish it were.

So, if you can, join your voice with mine and let’s make sure more children like Alen and David, and their families, can benefit from Minda’s amazing care and expertise.