A mum whose six-year-old son has cerebral palsy, dystonia and epilepsy says Occupational Therapy (OT) is helping unlock his “cheeky” personality.
Alex Liggins was born at 24 weeks and developed a bleed on the brain, which means he has global development delay, is non-verbal and uses a wheelchair. He also has to be fed through a Percutaneous Endoscopic Gastrostomy (PEG) tube.
He started receiving care at The Treehouse – East Anglia’s Children’s Hospices’ (EACH) base in Ipswich – three years ago, and mum Alison says the support has been “instrumental”. This includes regular sessions with Occupational Therapist Jo Crane.
Using her skills and knowledge, Jo has been supporting Alex’s movement and positioning, helping him feel more relaxed and comfortable.
Alison says it has made a profound impact and having someone to answer her questions has been hugely reassuring.
“Alex’s tone ranges from being relaxed and comfortable to stiff and rigid – like a wooden plank or ironing board,” she said.
“It often changes with little warning and can be for several reasons, from being in pain to needing the toilet or having reflux.
“His dystonia is the biggest issue, causing stomach spasms and lots of discomfort.
“It can also happen when he’s happy and isn’t necessarily a sign of distress. Sometimes it’s his way of telling us he’s excited about something.
“Either way, it’s incredibly hard to bend or move him because of the way he arches his back, and that’s where we’ve all benefitted from OT.
“Jo’s shared lots of advice, tips and tricks to try and make things easier, including telling us more about the importance of his head position.
“Alex always wants to turn to the left, but when his head’s in the middle it becomes much easier to move his arms.
“That, in turn, makes it much simpler to do things like getting him dressed – an everyday activity that can otherwise be tricky.”
Jo has helped and shown the family how to use a hoist, making it easier to move him into different positions.
“We’ve learnt so much about his positioning, and also about visual cues that help pre-empt his dystonia kicking in,” added Alison, who lives in Tiptree, near Colchester, is married to Matt and has a four-year-old daughter, Imogen.
“We’ve been given advice about how best to change, roll and move Alex, including lots of things I wouldn’t have thought of.
“She’s been great and so helpful, and we know if we have any questions, we can always go to her.
“I feel I can ask her anything, and no question feels a silly one. She’ll always listen and think about things that can be done to solve problems and make things easier.
“As well as helping us at home, Jo’s advice has helped inform her colleagues at The Treehouse.
“The more knowledge and information they have about Alex, the more confident they’re going to be with him which, in turn, will make his stays even more successful.”
Alex’s personality is now shining through, and Alison puts it down to various factors, including OT.
“He can be a pickle, but he’s a lovely, cheeky little boy with a wicked sense of humour,” she said. “If someone trips up, he’ll always laugh!
“His personality is really emerging and shining through now, and before, we didn’t ever see the real Alex.
“Now, he’s happier and more settled, and it feels like things are changing.
“His teachers say he’s more engaged at school, and everything feels much more positive.
“That’s undoubtedly thanks in no small part to the support we receive from EACH at The Treehouse, Jo and OT.”
