Nicholas' Story
BLACKWALL NSW
Condition: Athetoid Cerebral Palsy quadriplegia
Uses: Male external catheters
Challenges: Communication
Challenging Beginnings
Life hasn’t been easy for Nicholas and his mum, Dale, but Nicholas is a testament to what the love of family and a great support system can accomplish. Nicholas had a traumatic birth requiring resuscitation, ventilation and transfer to the Sydney Children’s Hospital. Then, as Dale says, “he rallied, as he always does”. As a baby he cried a lot and after a visit to childhood sleep specialists, Tresillian, he was referred by a doctor back to the hospital where scans diagnosed Athetoid Cerebral Palsy quadriplegia.
Dale has done everything in her power to ensure Nicholas’ quality of life is the best possible, including relocating the family so he could attend specialist education. They have since returned to the NSW Central Coast. Dale sees the NDIS as a real positive in Nicholas’ life. While it was a challenge to navigate at first, they are now reaping the benefits.
Communication is Key
Nicholas is non-verbal and communicates by raising his eyes to indicate yes and shaking his head for no. He is currently training with an eye gaze device that will allow him to communicate more fully and give him more control over his life. Currently Nicholas is dependent on others for everything. An eye gaze device will allow him, among other things, to turn lights and TVs on and off.
Nicholas’ respiratory and digestive systems are very fragile and as such his care team needs to be closely in tune with him to understand when Nicholas requires additional support – the common cold or choking can be catastrophic. His care team are also instrumental in managing his nutrition as Nicholas has been peg fed since 2004, when swallowing became difficult.
Nicholas wears nappies during the day – the elasticated sides and front fastening are easier to fit rather than pull ups. He also wears a Paralogic male external catheter attached to a 2-litre drainage bag. Nicholas will also wear a Uridome and bag if he is going on an extended outing where accessible toilets and change tables might not be easily found. Dale said that to start with they had some difficulty finding the right size of external catheter but kept trying a variety of sizes and found the one that works for them. One of her suggestions is to massage in a little coconut oil if it’s difficult to remove the catheter’s adhesive residue.
Part of the community
Nicholas’ favourite place to be is out in the community driving around in his van. Nicholas has a support team of carers who are always in communication with other local carers and they will often join forces for a day trip on the ferry and visits to the zoo.
Nicholas has always loved the water and swimming. When he was younger his family took him water skiing, with Nicholas riding on an inflatable behind the boat, or motorbike riding with his Dad. Nicholas continues to be obsessed by motorbikes and is an honorary member of the local motorbike club. He also has a passion for live music and surfing with the Disabled Surfers Association.