Isaac has found his voice
Isaac had just started primary school when he had a stroke.
Isaac’s stroke was caused by malformed blood vessels in his brain. “We didn’t know about it,” says Isaac’s mum Emily. But looking back, she can see there were signs something was wrong. “There were some red flags. I’d taken him to a paediatrician two weeks earlier because of some behavioural things. I’d also noticed his mouth drooping on one side. When I look back at the photos now, it’s frighteningly obvious.”
Isaac had a seizure at school and they called the ambulance. “My other son Xavier was only 16 weeks old, so I was sleep deprived and completely in shock,” Emily says.
After his stroke, Isaac was diagnosed with global aphasia, which affected his ability to speak and to understand when others were speaking. Initially, the medical team was not optimistic about his chances of recovery.
“I remember being in the intensive care unit, and the doctors were standing at the end of his bed saying he couldn’t understand us,” Emily says.
“But I saw this glimmer in Isaac’s eye and I knew that he was still there – and he was very, very frightened. It was in that moment I realised it was my role to help Isaac find his voice again.”
So Emily decided to keep a positive attitude, and to trust that Isaac was going to be okay. “I was in denial a bit, but we couldn’t change what happened, so I decided to accept it and deal with it. There wasn’t any other mindset I could have.”
Part of this process of acceptance was learning as much as she could about helping Isaac recover. “I sought advice from other parents who had been in my situation, and the message was clear. You need to understand the brain injury. Every brain is different. Every injury is different. And don’t stop therapy.”
“For me, it was throwing myself into finding out about aphasia and some of the other nuances with brain injury. It was accessing services and just really focusing on how I could help him recover,” she says.
Unlike an adult stroke patient with aphasia, Isaac had not had time to acquire foundational communication skills, so the early days were very hard. But Isaac is a natural communicator.
“He came up with his own sign language within 48 hours,” says Emily. “And his speech improved over time with a lot of speech therapy, and a lot of hard work on his part.”
Emily was told that while children can make lots of gains initially, their progress can stall, and sometimes continuing with therapy may not be beneficial. Emily refused to accept this. “We stayed the course, doing twice weekly blocks of speech therapy, occupational therapy and neuropsychology. We just haven’t stopped.”
Emily notes this comes at a cost. “My advice is to seek support from the National Disability Insurance Scheme and the education department as early as possible.”
The rewards for the family’s tenacity have been great. Isaac can now have meaningful conversations. “He’s able to put things in words again. He can share his thoughts and feelings, instead of it coming out in behaviour. Isaac has found his voice,” Emily says.
In terms of advice for parents in similar situations, she emphasises the importance of advocating for your child and not being afraid to question health professionals.
“You’re no longer just the parent or mum. You become the voice of your child. And you need to come to terms with that from day one. Because if you don’t provide a voice for our kid, no one else is going to. Don’t take no for an answer,” says Emily.
There’s no question life after a child’s stroke can be challenging. Dealing with Isaac’s cognitive fatigue has been difficult. “Even now, five years down the track, he’s only attending school part-time. I know lots of kids recovering from stroke deal with fatigue, which comes out in all sorts of different ways. They have meltdowns where they’re just not coping.”
Emily says being organised and taking care of yourself are crucial. “Find time to go and have your nails done or have a massage or go for a run. Do something normal, because you need to keep yourself sane.”
Emily wants to underscore Isaac’s determination, and to give him the last word on his story. “He’s overcome so much in such a short space of time, and he has stuck it out,” Emily says.
“As Isaac would say ‘Never give up or stop believing I can do this.’”