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Not only does Oscar love it, Scarlett (4) and Captan (1½) seem to take it all in their stride too.
“Scarlett has become really aware,” says mum Taegan “she’s been watching the therapist putting Oscar’s hands on toys and she will do the same and tell him to play with it when he is ready.”
Doctors diagnosed fluid on the brain with Oscar while he was still in the womb but were uncertain how it would affect him in later life. After birth, mum noticed twitching in his fingers and an ECG at 7 months showed Oscar was having seizures.
He now has a diagnosis of GMFCS (Level) 5 Dystonic Cerebral Palsy as well as Hydroccepalus (fluid on the brain), Corpus Callosum Atrophy, Cortical Vision Impairment, Epilepsy, NG tube fed and non-verbal.
Oscar struggles to hold his head up by himself, finds it very difficult to control his movements and, so far, cannot speak. He relies on mum and dad (Andrew) for all of his care needs.
All this would not be possible without the support of the public. Without the help of supporters, Montrose simply could not provide children and young people like Oscar the support they need to achieve to their best potential.
This is a family who are doing their very best in difficult circumstances. Taegan explains how she had to draw on new skills to make sure Oscar gets the care he needs.
“We felt some of the medical people were quite condescending. When I first noticed the movements in his hands, we were reminded that we were young parents and were told things like “babies just twitch” but we knew something wasn’t right.”
“We were only 19 at the time and it took a couple of years for us to learn we had to step up and become an advocate. We kept falling through the cracks. We found out he had cerebral palsy when he was 3 when we overheard a specialist telling someone else! Eventually, I just thought I’ve had this and I took control.”
Taking control for Taegan meant writing a short book detailing how to care for Oscar and asserting their right to choose their therapy provider.
“We really became unhappy with our initial therapy provider and we were so pleased when we heard Montrose were planning to open in Toowoomba.”
“We found Montrose staff were much more focused on Oscar and what he could do instead of the things he can’t do. He started with Montrose and he just blossomed, everything I say to the therapist, they take on board.”
That partnership between Montrose and the family has seen some real progress for Oscar. He has started interacting much more in the last year. Now that his medical issues are balancing out, he will sit with his siblings and visibly loves cuddles and tickles.
Oscar receives physiotherapy, occupational therapy and speech therapy at Montrose. Communication has been a key focus with therapists trying alternative methods of communicating including teaching Oscar to use a button. This is tricky with his dystonic movements but persistence is key.
“Oscar is responsive to lots more people now. He’s got faster at his button pressing. The Montrose team believe in him and don’t give up. They will wait as long as he needs for him to press it!”
Good results have been seen in physiotherapy too. Oscar has been working on his head control and, since January, he’s increased the length of time he can hold his head up from a maximum of 15 seconds to sometimes over a minute.
All of the therapy appointments take place in the brand new Montrose Service Centre in Toowoomba. Custom designed and opened last year, the Centre has bright, well-equipped therapy rooms as well as a comfortable reception and waiting area. It was paid for by Montrose as part of our commitment to providing the best venues for therapy that we possibly can. The generosity of previous donors has helped ensure we are in a position to make such investments.
As we approach the end of the financial year, please consider making a donation to Montrose. All donations over $2 are tax deductible and your generosity will help children like Oscar and his family receive the very best support.