A good therapy team is vital
Dee and Tawhai worried about their daughter Emma from very early on. “When she was about five months old, we were concerned she wasn’t using her right hand to reach for things. Our family doctor told me she might just have an early hand preference,” says Dee.
Dee and Tawhai weren’t satisfied with this. “She was very delayed in rolling and crawling. And when she did start to crawl, she neglected the right side of her body.” After many specialist visits and tests, Dee and Tawhai were told that Emma had had a stroke before she was born.
Emma’s stroke has meant her development has been very slow, with long gaps between milestones such as crawling and walking. “She was two and a half when she started walking, but it wasn't until she was about three that she stopped looking like a baby who had just got on her feet,” Dee says.
Throughout this time, Dee and Tawhai received conflicting messages from health professionals. “Emma’s physio would tell us, ‘She's going to do it’ and then we'd have a doctor saying ‘Well, we don't know’. Then we'd have her therapy team saying, ‘No, we think she's going to do it,’” says Dee.
“We were getting pulled from hope to preparing ourselves for it not to happen, and then back to hope again.”
Seeing a therapist helped Dee deal with this rollercoaster of emotion.
“In the end, I realised I just had to believe in Emma, because if I didn’t, she wouldn’t be able to believe in herself,” she says.
Dee and Tawhai also struggled with feeling overwhelmed by all the therapy Emma needed. One of Emma’s occupational therapists gave them some great advice. “She said to us, ‘Why don’t you take the weekends off? Have some time where you’re just Emma’s parents and not her therapists.’”
“I didn’t realise I hadn’t given myself permission to just be her mum. So now I’m really aware of being her mum and offering love, affection and play time – things that aren’t therapy focused. Probably the most amazing moments are when we’re not doing therapy.”
To find a balance, Dee schedules three 30-minute blocks of dedicated therapy time every day. The rest of the time she and Tawhai are just there for Emma as her mum and dad.
Dee and Tawhai look for small gains, rather than focusing on the big picture all the time. “It's all the really small achievements along the way that add up. You have to celebrate the small wins in order to enjoy the big ones.”
“Although Emma’s speech is delayed, when we’re out and she wants something, it’s amazing how much speech she’s got! I’m like, you just said a six-word sentence. You can have anything you want,” Dee says.
Dee says that a good therapy team is vital.
“We have quarterly meetings, so we all know what Emma's goals are. Then we can move forward, we can work together. It’s important to be honest and transparent with them. Let them know what you’re thinking, when you’ve had enough, or if their communication style doesn’t work for you.”
“Although we relate to each of them on a personal level, we treat it like a working relationship. We give feedback, and we accept it too. It can be hard for us as parents to get constructive feedback from the team, but sometimes we need to hear it.”
Asked for advice for other parents, Dee says that making therapy fun is important. “You’ve got to be a bit creative, especially as they get older. So in summer, we meet Emma's occupational therapist at the playground or the water park. Emma thinks she's just having a play, but her occupational therapist is guiding her along the way.”
Finally, Dee says to enjoy life, and not to miss out on things because you’re focused on therapy.
“I think you've got to create a life as well, not just having your child’s therapy or recovery as the core focus of every day. In the end, I am just really grateful she survived her stroke. Everything else is a bonus.”