Professor Nadia Badawi (Macquarie Group Foundation Professor of Cerebral Palsy, Cerebral Palsy Alliance): Once the diagnosis is made, then most hospitals or doctors would refer the baby to an organisation like the Cerebral Palsy Alliance, where there’s 65 years’ experience in looking after children and families who have a child with cerebral palsy. And that will come in many forms. Social work support, psychological support, there can also be occupational therapy, physical therapy, help with equipment that’s very expensive and very important. And also, families can meet other families who have children with cerebral palsy. Often parents actually know what’s around, and they can guide each other.
Professor Dinah Reddihough (paediatrician, Royal Children’s Hospital Melbourne): Families need to be provided, firstly, with ideas on how to promote their child’s development, and what to do with their child. So, what to do with their child might be simple things like how best to play with their child, how to feed their child, how to have the child in the most appropriate position for play and for feeding. They might need a lot of practical advice. But early childhood intervention is much more than that. It’s helping the parents understand all about cerebral palsy, giving them all the information so that they know just as much – or they’ll know more in fact – as the health professionals, because they know their child best.
Nicole (mother of 2 children, 1 with cerebral palsy): A social worker came out to our house. To learn a little bit about me, to get to know my family, to understand what Will’s situation was because cerebral palsy affects children so differently.
Mike (father of 2 children, 1 with cerebral palsy): We also contacted the local council and we got some care and respite, and got a carer in to help from time to time. But it wasn’t really until we locked in with our physiotherapist that we started to understand all the other options available to us. And all the other therapies that come into play, like Botox, casting orthotics, surgery. There’s a lot of little bits that you’ve got to bring together to form the overall care plan for someone with cerebral palsy.
Dinah: The treatments are many and diverse. First of all it’s very important that we treat any associated health problems. So the children might have difficulties like constipation or nutritional problems. All those issues must be addressed. Any associated difficulties such as problems with vision or hearing must be thoroughly investigated, and if the child needs glasses or hearing aids, those must be supplied.
Nadia: Things you need to think about are: what will they need in the form of early intervention? So, occupational therapy or physiotherapy. We know that if children are given therapy that helps them function in their own home, that can be more helpful.Or if they can be taught to feed themselves – we ask the parents and the children: ‘What is it that you want for your child?’ Something they can do in their home is very important. Dressing themselves, feeding themselves. So what we call goal-directed therapy.
Nicole: The physiotherapist will guide me through the motions of how to transfer Will. So, how to get Will from sitting on the floor to standing without just lifting him. Or how to safely transfer Will from his car seat into his wheelchair, so I don’t hurt myself and so Will is kept safe as well. In Will’s case, we teach him how to transition, because he has the potential, eventually, to grow and get stronger, and learn how to manoeuvre himself in and out of the shower or the bath or his car seat. And so rather than just constantly lifting him from A to B, we show him how you would move.
Mike: With Kennan at home, we do a number of activities that are centred around his cerebral palsy. We try and get him to walk part of the way to school a couple of times a week because it’s also about getting his endurance up. I mean the rule of thumb that we’ve been giving is that for Kennan to walk one step, it’s the equivalent of someone else walking four steps. He also has to take medication for his seizures, and then there’s work we do at home with his speech therapist to help develop his learning skills as well.
Shannon (father of 2 children, 1 with cerebral palsy): We did leg massage every day, because the ataxic cerebral palsy makes his muscles very tight, almost like steel cables. So, you have to massage that out. It’s very painful, which is why we need a wheelchair on long walks – because his muscles seize up.
Nadia: We believe that the earlier that therapy is provided, the more it can affect the recovery of the brain. Because we know that babies’ brains actually are changing all the time, and they benefit from something called neuroplasticity. That means that their brain can change, develop. And other areas of the brain may take over. So it’s very important to get in early.
Nicole: As far as support goes, for my husband and I, we have a fantastic family who are very supportive of us. But family still sometimes isn’t enough. And definitely connecting with a group of people, whether it be through an organisation such as Cerebral Palsy Alliance, or whether it’s through school. It’s so vital to create relationships with people who understand, who are going through the exact same thing.
Deanne (mother of 2 children, 1 with cerebral palsy): You can’t get enough support from other parents. You’ve got to know people, if possible family counselling, relationship counselling, because it affects you. If the parents aren’t strong, they can’t look after the child.
Nadia: The future for children with cerebral palsy is changing all the time. We’re not just looking at research into prevention and cure. In fact, most of the research at the Cerebral Palsy Alliance has been focused on finding the best interventions, to help children fulfil their best potential.
Nicole: I just hope that my husband and I – and all of our family and the therapists that work with Will – that we can arm him with the opportunity to have a fulfilling and the most independent life that he possibly can, in the same way that we have that plan for his older brother. Will’s rite of passage from adolescence into adulthood will be very different to that of his brother, but he deserves that, every step of the way. And we just need to guide it a little bit more for him, and be his advocates so he can really just have a fulfilling life. And what that means for Will is different to the next child, and is different to the next child. There’s no normal any more. That was important once, but this is just Will, and we just want him to have a great life and to enjoy everything it can bring him. And we’ll be there to support him along the way, and I’m sure there’s going to be a lot of tears along the way, but there’ll be so many wins as well. And I look forward to seeing him grow.