Jude is two years old and can't move around independently. His family were on the waiting list for a MERU Bugzi - a small powered wheelchair for young children. But before he could have his mobility assessment both MERU and QEF Mobility Services had to close due to the pandemic. Jude's Dad explains what this has meant for Jude and his family during lockdown.
"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 just two weeks ago, Hazel, and Jude is really interested in his baby brother now too.
Lockdown has really affected Jude. All the services that we normally access for him have been put on hold and Jude’s therapy is now via zoom calls. So, the therapist now directs me on how to handle and manipulate Jude, but they can't feel how he’s changing and we are worried that physical changes are getting missed as a result.
Our application for a Bugzi was supported by our NHS Occupational Therapist and went in just before Christmas, but there was a waiting list. We were waiting for one to become available just before lockdown. Bugzi would be excellent for Jude. Because of his sensory processing issues, it 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.
It’s a real shame that he missed out on a Bugzi before lockdown, as it would have been perfect for him to get out to the playground as the weather has been so warm, especially with him not being able to control his body temperature. At the moment, he stays wherever he is put. He has a big bean bag or the sofa that he is most comfortable on. He also has a supportive chair but that’s not always comfortable. Because of his cerebral palsy he has dystonia – variable tone - so he’s sometimes stiff and sometimes floppy, he can’t control it. He’s most comfortable on his bean bag, but its best when he is held and given support with his mobility, as this doesn’t push against his stiffness. Jude is big for his age though, so whilst carrying him is best it can be a strain.
We have been stuck in the house a lot more during lockdown, as it would be a very big risk for Jude if he (or either of us) were to contract Covid-19. We haven’t been able to get out and do new things or give him different experiences. A Bugzi could have changed this and given him a new and exciting experience in the garden. Caring for a disabled child places a big strain on the opportunities you might have as a family and on your social lives, the lockdown has made this even more so.
We don’t have family in the immediate area, but Jen’s mum would normally have come to stay to help out with the new baby. But this can’t happen at the moment. At the same time because there is no therapy available and respite and volunteer services are on hold, the 24/7 care we need to provide Jude means we are pretty exhausted. We’ve been lucky that Jude’s specialist nanny has been able to carry on working with him, although she has had to make big personal sacrifices in order to do so. We both used to work 4 days a week and we made that work, but Jen is on maternity leave now and I was furloughed in mid-March. It’s a strange time, and whilst it means I’m here to help out more, you also don’t get the mental break that work can give you either."
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