Two year old Jude received his MERU Bugzi in October 2020. Here Jude’s Dad James tells their family’s story and explains what having a Bugzi will mean for Jude.
“Jude turned two in March. He suffered a brain injury when he was born and was transferred straight to intensive care. He underwent a ‘cooling process’ for his first three days to try and limit the damage, after which he went for an MRI. We were told he wouldn’t survive, so my wife and I spent the 5th day saying goodbye to him. It was very emotional. He was taken off the ventilator and we were told he might take a few breaths, but that he wouldn’t survive. He did take a few breaths and then never stopped breathing!”
“Jude has extensive complications though. He has cerebral palsy and is largely immobile – he can’t roll himself over. He also has autonomic dysfunction, so he can’t control things like regulating his body temperature. He’s always cold and we have to take his temperature regularly – one minute he can be OK and the next he can be hypothermic. He appears very sleepy but as he has a processing disorder, he is often more engaged with the world around him than we think. He may be awake but just processing something, he may just be sleepy or he could be overwhelmed and doesn’t want to take part. My wife and I and his carer have to be really tuned in with him, as there can be multiple states of Jude. He also has a sensory impairment, especially visually – he is actually registered blind, although he can see some things just not reliably. There’s nothing wrong with his eyes, it’s just that his brain can’t process the images.”
“He has some movement of his arms and he enjoys toys. He can’t reach out and grab things, but he can brush things and enjoys using simple, accessible switches. We have a bubble machine and a light toy from MERU that have been adapted to use with accessible switches and he really enjoys these. He also engages with stories such as the Gruffalo or anything by Julia Donaldson it seems. He really enjoys music, we have instruments and chimes and he enjoys it when my wife plays the piano. He can appear shut down, but then he maybe opens his eyes, waves an arm, or makes more vocal sounds and maybe smiles. My wife had our second son Hazel just two weeks ago and Jude is really interested in his baby brother now too.”
“Because of his sensory processing issues, Bugzi would help him to engage with the world around him more, giving him independent movement which is the biggest challenge – he can’t move by himself. He really enjoys learning how to do new things himself, such as activating toys and learning to doing his physio – he gets a real kick out of it. Bugzi would be his next step in moving from one place to another. It will also help him to build his skills, using switches and getting feedback from it. It’s great how Bugzi can initially be set up for simple button pressing and we can then build in added complexity over time, up to a joy stick as his skills develop – it can be tailored to what he can do and what he enjoys doing.”
Jude had his Bugzi assessment at the QEF Mobility Centre, Surrey, in October 2020. He enjoyed spinning in circles and using a switch to change direction while his Dad operated the forward button. Jude now has his Bugzi at home where he can spend time learning to move around and enjoying his newfound independence.
Check out Jude’s super skills in his assessment in the videos below!
