You don’t know what goes on in other people’s homes

YOU don’t know what goes on in other people’s homes. So it’s easy to judge when you see a mother chain up her son. But as this mum says “you have no idea”.

The unspoken reality behind closed doors

OVER the past week there have been some awful stories about parents struggling to cope on their own with children who have disabilities.

The overwhelming message from advocates is that you don’t know what goes on in other people’s homes and how hard it can be.

Lucy and Gabor Hodula know that better than most. Their 25-year-old son Mark is severely autistic, and every day is a struggle. Lucy has written this to give outsiders an insight.

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HAVING a child with autism is like having a baby for life. Imagine having a baby or toddler and having to be with that person forever. It’s never-ending.

It’s full-on from early morning to late at night and you can’t predict what’s going to happen. Once, during the night, my son Mark flooded the bathroom because he wanted to play with water.

During the day it’s a constant worry as you don’t know what’s going to happen. Sometimes he chews on things that he’s not supposed to and he often puts strange things in his mouth. Once, he was nearly choking and I had to put my fingers in his throat to pull things out.

Lucy loves her son Mark unconditionally, but that doesn’t mean she hasn’t felt like giving up.

My 25-year-old son can’t talk, read or write but he understands three languages, because we moved to Australia from Hungary in 1991. My mother can only speak Romanian and she has been living with us for many years. Mark understands her, but he can also understand Hungarian and English.

Mark started going through his teenage period when he was a bit older than most kids, at the age of 18. Because of his disability he developed later. During that time he was very frustrated, screaming a lot and you could see no peace in him — everything was a struggle, every little thing, and for us it was a struggle having to physically deal with him.

Our son is not aggressive or violent but sometimes he gets very frustrated and screams if he needs to move in his own direction. He might knock you over because of frustration but he’s not intentionally violent. He does destroy things sometimes like furniture, by chewing on them.

Obsession is a big part of Mark’s life. In the morning he’ll march from the bedroom to the kitchen at a particular point in time. Then he stomps to the chair and sits down. When he finishes his food, he goes to the tap and washes his hands. He needs to dry his left hand three times and his right hand three times and then he turns around, stomps around in a circle and then turns around in the other direction.

If you don’t let him do that; it’s war. Imagine living with that all the time — letting him do those things. It doesn’t matter if you have to run somewhere and do something, he must do what is in his mind. We can’t go to a restaurant as he has a thing where he clicks with his mouth and it’s constant. We can’t make him stop, it’s very hard. If we did try to take him out he would make such a noise.

Our life totally revolves around Mark. That’s why we bought a small carpet-cleaning business, so we could have a flexible job and be there for him. I stay with him while my husband works, or we can both work when Mark is having a day at Endeavour Foundation.

For many years it was just our little family looking after Mark. After begging to Disability Services we have finally been offered four weeks of respite a year.

Mark can understand three languages, but he can’t speak, making communication difficult.

We are lucky, in a way — my husband and I are strong people and we are still together. So many people divorce because of a person with a disability in the family. Each of us has moments where the other picks up the pieces and we keep going. I’ve been on antidepressants for many years and my physical health is not good … it’s eating me inside, living with this constant worry.

When Mark goes for a week of respite somewhere, that week is beautiful and so different from everything else. We can read a book and go somewhere and don’t have to go home quickly because of Mark. They are the things that people sometimes take for granted but we treasure them and it feels like winning the lottery.

I would love to see more respite for parents of children with autism and other disabilities. It’s one beautiful thing that every family with a disability needs. Respite care allows parents to recharge their batteries and start over again.

There are times when I feel I can’t do anymore and I have gone to Disability Services feeling torn apart. But then in the morning I find I can do more, and Mark is what motivates me. No matter what, we love him dearly.

We know that as his family we are the best people to care for him, as we do look after him with heart and soul, with everything. I just wish the government would help a bit more. My son is an adult. I have made the commitment to keep him living at home with us so we can look after him. All I would like is to have some more breaks so that I can do a better job of caring for him.

No one in our family history had autism, but we were warned that any more children may also have autism, so we stopped with Mark.

Most people have no idea what parents of a child with autism go through — many parents become suicidal because it is a constant struggle, like a wound that is constantly weeping.

When you have a child like that, your love for that child is much more. It’s normal that you will reach a very black point — and wonder what you are going to do. But no one can do a better job than you do.

It’s sheer determination to do your best, no matter what, that keeps you going.

Lucy and Gabor are thankful for the support of the Endeavour Foundation in Queensland.

If you need support or need to talk to someone call Lifeline on 13 11 14.