Best friends

'I always had a feeling that one day I would have a little boy of my own and I promised myself that I would love him so much more than anyone had loved me.'

Chelsea, caseworker

There are times in this job when I don’t sleep well. The day I met Robyn and her son Matthew was one of them. The minute I walked into their home I was worried for him. Matthew was eight years old, but his complex disabilities meant that he couldn’t walk or talk. The house was upside down and Matthew was hungry. It was obvious Robyn was overwhelmed by two strangers at her door late in the afternoon.

A lot of people from services who knew the family were worried too and their fears were growing. So was the chaos in the home. Matthew was crawling through the mess on the floor; tangled power cords and batteries were everywhere. I tried to explain why this was dangerous to Matthew, but Robyn was anxious and didn’t seem to understand. My colleague and I cleaned up what we could and made a plan of all the things Robyn needed to do to help Matthew be safe before we came back the next day.

Robyn, mother

When I was little my family locked me in my room all day. I had nothing to play with and nothing to do. I always had a feeling that one day I would have a little boy of my own and I promised myself that I would love him so much more than anyone had loved me. He would be able to play, have fun and laugh. That’s why I love Matthew so much and try so hard to take care of him.

'I had stopped answering the door to the people that were meant to help us. I didn’t like how they spoke to me or Matthew.'

I had stopped answering the door to the people that were meant to help us. I didn’t like how they spoke to me or Matthew. But I was pretty scared too. Matthew was getting bigger and harder to care for and I thought they might take him away.

Chelsea

The next day when I walked into the home things hadn’t changed much. But this visit was different. I stopped seeing the mess and instead took in the tenderness of Robyn’s interactions with Matthew. It made me stop and ask myself: was I making assumptions about Robyn’s capacity to be a safe parent because of her disability? I changed my practice that day. I apologised to Robyn for how scary our first visit was. I promised that I would do things differently from now on.

When I took the time to listen to Robyn’s story, I heard that she had grown up in care, lived with a range of disabilities and had felt invisible and disrespected by government workers like me all her life. It was no wonder she had simply waited with dread for our next visit. Living without family support also meant that she hadn’t learned some of the basic life skills she needed to parent, like cleaning her home.

Together we got coloured paper, textas and tape and used drawing and writing to show what our worries were and what needed to change. Then, together we decided how this could happen. Robyn told me the things that she was scared about and we added them in too. By doing it this way, Robyn was included and empowered about being the one who could make the changes Matthew needed to be safe. We placed posters around the room as visual reminders of what had to happen each day of the week.

That day set the tone for how we continued to work together. I would ask Robyn what I could do to help her and Matthew, not the other way around. My role became one of advocate and organiser. Robyn and Matthew already had a lot of different workers in their lives, but they weren’t talking to each other and didn’t always listen to what Robyn was saying. Robyn wanted their help, but felt ashamed about her home and judged when workers came over. I could understand why she had started to push them away. I spent a lot of time on the phone to Matthew’s school, the NDIS worker, housing and other services to draw everyone into a community of support for this family. I took time to explain who everyone was, what their job was and how they would help.

Robyn

Chelsea was the only worker who got her hands dirty. She would visit and help me get organised, do the dishes, chat to me. But at first I didn’t want anything to do with her. I thought she was too young to know anything and DCJ hadn’t been nice to me when Matthew was born.

'Having the department in my life again brought up a lot of bad memories. The old workers never asked me any questions. They just talked and talked at me.'

Having the department in my life again brought up a lot of bad memories. The old workers never asked me any questions. They just talked and talked at me. I felt they judged me by my cover, but never took the time to open up the book and look at what was inside. I think the first thing that caseworkers should do is ask parents how they are and if there is anything they can do to help.

When Chelsea came along things were a bit out of control. I thought maybe she was different when she got everyone in our lives organised to help us better and told me important things lots of times so I understood. I remember things better when we talk about them lots of times.

I used to get overwhelmed with everything I had to do for Matthew. Chelsea suggested I try to pick the one thing that is the most important to get done and do that first. It is good advice. I can hear her voice telling me that when I start to get stressed that there are too many things to get through.

Chelsea also taught me some tricks to stay calm and this helps Matthew settle down more quickly as well. He can get really upset sometimes when he is tired or things are changing quickly. If I talk in a gentle voice and stroke Matthew’s hand or give him a hug, he gets calmer and calmer until he isn’t upset anymore.

'...Robyn was included and empowered about being the one who could make the changes Matthew needed to be safe.'

Chelsea

Over the coming weeks and months I witnessed more and more of the incredible effort Robyn put in to care, support and love Matthew. They have a beautiful and unique bond. They share their own language and jokes, go on adventures together and never forget to have fun no matter how hard things may be some days. Matthew may not be able to talk, but his eyes say a lot and he gives great hugs.

'Matthew may not be able to talk, but his eyes say a lot and he gives great hugs.'

Robyn still teases me about the day I took Matthew to school in his crappy old wheelchair. The trip is down a big hill, through lots of trees. The footpath was crowded with rubbish bins and by the time I arrived more than an hour later, I was sweaty and stressed. I couldn’t believe that Robyn does this twice a day, every day, on her own. Robyn clocks the same walk in 30 minutes and Matthew is never late to school. It made me respect this strong and capable mum even more.

Every visit, Robyn tells me my jobs for the week and I talk to her about what she can do. We write it all down on the whiteboard and we keep each other on track.

'Every visit, Robyn tells me my jobs for the week and I talk to her about what she can do. We write it all down on the whiteboard and we keep each other on track.'

Robyn

Chelsea never tells me what to do. She says, ‘Robyn, I have an idea, are you ready to hear it?’ Then we talk out what the best thing is for Matthew. I like working with Chelsea the best because she listens and she laughs. But the most important thing is she is kind to Matthew. He loves Chelsea.

'I like working with Chelsea the best because she listens and she laughs. But the most important thing is she is kind to Matthew. He loves Chelsea.'

Life is so much better now. Lots of people help me and Matthew and when Chelsea says she is going to do something she always does it. Our new home has a backyard with space for our pet rabbits and Matthew’s new wheelchair is awesome. I wouldn’t have those things if it wasn’t for Chelsea always ringing and hassling people to help me.

Chelsea

So much has changed since I first met the family. Robyn and Matthew are in their new home, which is fully modified for Matthew’s wheelchair – a modern one with a motor. Robyn feels more comfortable and confident now and loves having visitors. This means services are able to come to the home and give them more help too.

Robyn has met all her goals in her Family Action Plan for Change and soon they won’t need me around. Not long ago I cried a few happy tears when I saw Matthew get a class award at school. Robyn was told he would never walk, but he took two steps on the stage that day. The two of them are defying the odds in so many ways. It was one of the best days of my life to see him walk for the first time.

'The two of them are defying the odds in so many ways. It was one of the best days of my life to see him walk for the first time.'

Robyn and Matthew have taught me so much. To slow down. To change the way I communicate so it suits wherever a child or parent is at. That love, determination and laughter can overcome almost any challenge. But most importantly they have shown me in a million small ways that people living with a disability are not limited in their capacity to care and to love. Some people may need extra support or creative solutions along the way, but we need to start with everyone’s individual strengths and go from there. It’s the only ethical way.

Robyn

Chelsea helped me with Matthew’s ninth birthday party the other day. It was a ‘Thomas the Tank Engine’ theme because that’s his favourite show. Chelsea and some other workers who care about Matthew came along too – it was the first real party he has ever had. I could tell he had a great time.

Sometimes it is hard for other people to understand what Matthew is saying or what he needs. But I do. It is my most important job to help everyone else know what Matthew wants so he is happy. He is my best friend.

'It is my most important job to help everyone else know what Matthew wants so he is happy. He is my best friend.'