For Patricia Kasongo, watching her five year old son Nathan set the table and having her three year old daughter Nyota sit patiently for dinner to be served is the highlight of her day.
“We eat together now, sitting around the table as a family. It never used to be this way,” she says.
As a single, widowed mother of two children with autism, Patricia has certainly experienced a couple of challenges. A month after her husband passed away from bowel cancer, she got the diagnosis that Nathan (then aged 3) had autism.
Says Patricia, “I didn’t know anything about autism or what to do. I certainly didn’t have any strategies to make his life or my life easier. The only place where he would eat his meals would be in his high chair, which had to be placed in the centre of his bedroom, watching Dora the Explorer whilst I fed him. It’s crazy to think how far we’ve come.”
With no family living in Melbourne, Patricia started seeking support from a parents group of other children with autism, and a local carers group. Soon after, she started working with a key support worker from Scope.
“Scope helped develop strategies and plans that would establish routines in my children’s lives. Before I used to think that if I took Nathan and Nyota to all different types of therapists, that would be enough to help them,” explains Patricia.
“Scope helped me realise that wasn’t the case. As their mother, the person who is around them 24 hours a day, I have to be the one leading and implementing these changes. Scope helped a lot with building up my confidence to believe myself to become that leader.
“Nathan has come so far. He’s able to take the bus to school by himself and is able to speak to me in French. I never dreamed he would be able to learn a second language and speak to me in my mother tongue, but here we are. These might seem like small things, but they are huge achievements for me.
“I know exactly how lost you can feel at the start and I want other people to know that an autism diagnosis doesn’t mean the end of the world. For me, having children with a disability has opened up so many possibilities I had never thought of before.”
Patricia says even though there are moments of struggle raising two children with autism, she has always held hope.
“I’ve seen what dying looks like, I saw my husband go through it. And after his death and my son’s diagnosis, I would look at Nathan and at no point did he even look remotely that.
“My son was living. And if you are alive, there is always hope. And I have so much hope for my children.”
Feature image and above: Patricia with Nathan and Nyota.