A place for Anthony
Julie and Joe Esposito tell the story of their son Anthony.
When you find out you're having a baby, it's hard not to start building a picture of what your son or daughter's life may be like. You imagine all the opportunities and experiences that await them, their first steps, their first day at school, graduation, relationships, marriage.
Of course you’re scared, but more than anything you’re filled with hope; you want them to experience everything in life, happiness, friendship, love, success. Imagine finding out that dream may never come true.
Imagine being told every day that your child isn’t good enough, that they are too difficult, too disruptive, too much work. Now, imagine this happening every single day, for 25 years.
Our beloved son Anthony was always the black sheep; there was never a single positive day, just rejection. Schools, day care centres, teachers would all look at Anthony and say, “he’ll be fine” but everywhere he went, they wanted to kick him out. It was so hard for us, but the thing that broke our hearts the most was that it was so much harder for him.
Anthony never had the opportunity to succeed and there was never a place where he could fit in, until we found Minda.
When Anthony was born he looked like a little angel, blonde hair, blue eyes with sweet dimples in his cheeks, but as he grew, we could tell something was wrong. He couldn’t make eye contact and he wasn’t progressing at the same rate as other children his age.
Anthony had brain damage and a hole in his heart; to say we were shocked to discover he had intellectual disability is an understatement – we had done everything right, we read all the books, we had all the tests, we never expected anything could be wrong.
In the beginning, the doctors told us Anthony’s intellectual disability was ‘borderline’ but their assessment changed to ‘severe’ as they tracked his development. He started having physio every day from the time he was six months old and started speech therapy at two.
Although the physical problems were significant, it was Anthony’s behaviour that was the most distressing. Anthony never slept. Up until he was six years old, he only slept for a couple of hours a night and even then it was only half an hour at a time.
It wasn’t just his sleeping patterns that were causing concern, as he grew and his hormones started to kick in, Anthony became violent. He had no boundaries and when he was a teenager, he would push us to breaking point.
He also started to break everything; we would turn around for a moment and the television was completely pulled apart. He had a fascination with how things worked, so anything electric, remote controls, toasters, blenders, computers, you name it, would end up as a pile of disassembled parts.
Anthony would also draw all over things, tables, couches, walls, cushions and smash things, windows, doors, walls, beds, shower screens – sometimes it was like living in a demolition site.
You could never leave Anthony alone; he had no sense of danger and we were in constant fear of him coming to harm. It was a particularly difficult time for our daughter Belinda, who tried in every way to be the best big sister she could – but Anthony didn’t make it easy.
We always had to be on alert and there was no way we could leave him on his own; it is not at all surprising to us that research shows the expenses to raise a child with severe disability are at least three times that of raising a child without a disability. And this doesn’t factor in the time spent out of work caring for a child living with disability.
Things really started to fall apart when we had to move to Sydney for work, which meant we no longer had our family as a support base. As parents we think there is a lot we have blocked out, things we have tried to forget; you just have to get through the day, you don’t think, you just do. But we both remember a particularly dark time when we thought we couldn’t continue – we were at breaking point.
Anthony was 15 years old, he was still incontinent and still not sleeping through the night. We were worn out and it was particularly hard because people didn't understand how much support he needed.
We were always encouraged to put him in regular school, but things never seemed to work out. He would become aggressive when he didn’t get his way and a day wouldn’t go by when we didn’t get a call to come pick him up.
It was only when Anthony was 21 and we moved back to Adelaide that he was diagnosed with autism spectrum disorder. It was actually something of a relief because we understood the ‘why’ behind a lot of his behaviour.
Things were still tough though, and we continued to dream of a day when we would get a phone call, just one comment to say that Anthony had done something good, or that he was fine.
In the past when something hadn’t worked out, we hadn’t been given any options, it was just, “Anthony doesn’t fit in here, sorry.” But Minda offered alternatives and the support workers took the time and effort to find day programs that suited him.
Finally Anthony had found his niche and we started to get some great feedback about his progress; to hear nothing but disparaging remarks for so many years and finally receive praise was amazing, not only for us and Belinda but for Anthony, who started to thrive.
During his transition to Minda, Anthony was also placed on medication that actually worked for him, it allowed him to focus and to calm down; he was much less agitated and so much happier. The change in him was unbelievable.
Although Anthony was enjoying accessing day programs and was getting positive feedback, he still had a range of behavioural issues. More than anything, Anthony wanted his independence.
We were on the Urgent Accommodation Waiting List for eight years and for so long it just seemed hopeless – we didn’t know if we could keep coping on a daily basis.
Minda again came to our rescue and in 2012, Anthony moved into community accommodation. Anthony is so proud of his home and we can’t speak highly enough of the team at Minda who have made him feel so settled. As a family, it gives us peace of mind that he is taken care of; on the other hand it gives Anthony independence and the opportunity to make more decisions for himself.
It has opened up so many opportunities for Anthony and he enjoys helping with his washing, cooking and cleaning. He also likes to visit the pub with his house-mates, play darts, go bowling, as well as play basketball and indoor cricket.
Even though accommodation has been so valuable for our family, it does come at a significant cost and specialised equipment, customised facilities and qualified staff are vital to help provide the individualised support that people living with intellectual disability need.
At the moment Minda provides accommodation for more than 500 people living with intellectual disability, but there are many more caring parents and siblings who desperately need support; they are families in crisis.
If you saw our family five years ago, you wouldn’t believe the change, but we still see other families doing it tough – they need help.
Many of the thousands of people supported by Minda require a high level of support in most aspects of their life, such as daily care, work and in the home. And while people like Anthony do receive some government funding, it is only very limited and simply cannot be stretched to cover the things that allow them to experience and embrace life. We do hope you can show your support of Anthony and others supported by Minda by donating today.
Thank you for taking the time to read Anthony's story.
Julie and Joe Esposito