Charlie’s story – written By Mark – Charlie’s Dad
After months of fundraising and stressing over what or where might be best to help Charlie, we arrived in London to start two weeks of therapy at The Bobath Centre.
We arrived in East Finchley on Sunday. We had booked our accommodation off the internet and we were a little nervous – the Trip Advisor reviews had been mixed. However, we didn’t have an unlimited budget and we felt the Ramada East Finchley offered a good location and a reasonable cost (particularly with free parking, WiFi and breakfast!). Lou was a little underwhelmed with the decor as it was a little tired, but our little home for a fortnight was acceptably snug and more than ok and the staff were happy to help with Charlie’s needs. We had actually lucked out, the hotel was just next to an Entertainment Centre that had many restaurants, fast food, a cinema, bowling and a leisure centre!
We were a mile from The Bobath Centre so as Monday arrived and the sun was shining we set off to walk, typically from me, far too early. We arrived for our 11.45 session at 10am (whoops) but as Charlie needed a wee we popped in and used the facilities. The staff were happy to direct us to a park we would never have found and Charlie played while we nervously anticipated what Bobath held in store.
We went back and got Charlie changed – the facilities were super. A changing room with a washer and dryer for family use and a fully fitted kitchen/family room.
We had organised our Bobath experience to be mainly physio with a smattering of OT and Speech and Language. We met our physio, Marie, who wasted no time putting Charlie to task whilst asking us about his history and difficulties as well as our hopes for the therapy.
Marie quickly deduced that Charlie’s issues were very much activity based- when he was relaxed, comfortable and confident his tone was manageable but as soon as he exerted himself or was put in a novel position his confidence plummeted and his tone rocketed. Her aim and focus was to help Charlie learn to tolerate positions better with and without support- she particularly highlighted dissociation and weight-shifting.
We also meet Athena, an OT who got to work and some very important assessments of Charlie’s perception and taught us some very useful tricks for helping Charlie get dressed and undressed. Athena quickly found that when Charlie was tasked with something new his tone increased as he struggled and even holding a pen or drawing shapes became increasingly difficult. She also noted that as he attempted certain tasks, particularly physical ones, his ability to perceptually understand or differentiate reduced. She showed us the importance of sitting posture on keeping tone down but also how simple kit like writing slopes actually helped enable Charlie to have more attentional capacity to perform his cognitive tasks.
Marie was also keen to get Charlie to try his sticks – once upon a time when Charlie was 2ish, he was given some sticks which he christened ‘elephant feet’ but he wasn’t strong or organised enough to use them so they gathered dust in a cupboard. Marie must’ve known something – he immediately decided he’d show us he could cross the room! Pleased as punch, to say the least.
This was written back in 2015, we are delighted to provide you with an update on Charlie.
Charlie is now 8 and thriving in mainstream school – he still has an EHCP and a 1-to-1 TA but he is very independent and really doesn’t use her too much. He is achieving ‘at greater depth’ in his school work. His handwriting is much better than we’d hoped it could be although ‘joined up’ takes too long for him to keep up.
He still uses his walking frame and walks the one mile to school either there or back most days. We all love walking in the woods. He recently walked around Dovestone Reservoir without stopping (2.7miles!). He can walk independently, but in more controlled environments as he is prone to falls.
Charlie swims and actually got his 500m badge- no points for style but a testament to his determination! He plays for a disability football team and does gymnastics.
He also models for Zebedee and has been on Boden, Primark and McDonald’s campaigns.
He does still struggle for balance so needs something to hang on to and his sitting in a normal chair is often awkward but we’ve got OT on with that.
He is waiting on a major ortho surgery and he still has private physio every other week.
Charlie is also his own best advocate and worst critic – he completely understands his disability and is happy to talk to people about it, he does ‘circle time’ talks on disability in all the year groups at his school.
He is getting to an age where he is much more aware of the difference between himself and his peers but he is a strong character and isn’t stopped for long.
We’ve been so proud of the progress HE has made – we just try our best to provide him with the opportunities he needs and build his self-esteem the best we can.