Mum Yasmeen shares her story.
Shakeerah had a three-month residential rehabilitation placement at The Children’s Trust back in 2016 when she was three years old. Thinking back, before we came here I felt completely lost. I have nothing but wonderful things to say about The Children’s Trust. Everyone I came into contact with guided me – social workers told me about direct payments, staff at the school told me about education, a parent advocate helped me through the legal aspects of navigating ‘the system’.
Shakeerah at The Children's Trust aged three
Since her brain tumour, Shakeerah has had complex health needs and is profoundly deaf. It’s been hard to know what to focus on – her health issues, the tumour, ongoing treatment for the infection, getting her into the right school, working on her communication etc.
Challenging times
When Shakeerah was discharged into the community, she was denied the funding for a three-month physiotherapy package. With hindsight I now feel that if she had got that early intervention we wouldn’t be here six years later needing intensive physiotherapy.
Over the years her mobility has changed. When she was younger, she progressed from a wheelchair to a walking frame, and was even walking independently at points. Then she started school and her physiotherapy decreased, so she went back to using a walking frame.
Shakeerah now attends a mainstream fully-BSL (British Sign Language) school. She has done really well in her education, but this has come at the detriment of her physical mobility. She has been under the care of the physiotherapy and occupational therapy at the school, but they only see her once every six weeks, which is not enough to get her where she needs to be.
Last year I was getting frustrated that she was only able to make 3 or 4 steps and she was having to grab onto things as she was unbalanced. Six years after her rehabilitation that’s all she’s able to do. It wasn’t enough progress and it’s affecting every aspect of her life.
Communication
Shakeerah is a BSL user and uses her hands to communicate – so when she’s using a walking frame or holding someone’s hand, she’s unable to sign. That’s a big part of her day that she’s unable to communicate as she can’t use her hands.
Socially, she’s at an age where she’s being invited to parties at climbing centres and trampoline parks. She can’t participate and run off and play with her friends, she has to sit out with the parents, and it’s really sad to see. Her friends come back to cut the cake and Shakeerah is there, but she hasn’t participated in any of the activities.
Individualised therapy sessions
It has taken us a year to get the funding, but Shakeerah is now receiving 22 physiotherapy sessions with The Children's Trust Community Rehabilitation Service over six weeks. Her goals are to be able to stand and walk independently. She has been accepted for a hearing dog, but they have said she will have to wait until she can walk the dog herself.
In the first week her physiotherapist did a lot of work with her to strengthen her thighs and glutes so she could balance herself. After four days she’d gone from four shaky steps to walking the length of the gymnasium. That is proof that this kind of intensive therapy targeting specific areas does pay off.
Her physiotherapist has adapted the activities during the sessions to what Shakeerah likes – she turns the therapy into a game, whether it be punching, playing basketball, picking up cones etc. Shakeerah likes to be in charge, so her physiotherapist sets out all the activities and puts them in a list that she can choose what order she does them in and ticks them off when they are completed. This means Shakeerah feels in control of her session, but she also gets everything out of it.
Seeing the change
I have seen loads of progress since Shakeerah started her sessions. Her balance is better – she is still leaning as she has a weakness in her left side, but she’s improving every day.
Shakeerah had two weeks of sessions over the Easter holidays. When she went back to school, instead of using her walking frame, she walked independently into her assembly to huge applause from all of her fellow students. This has increased her confidence and motivated her to do more.
Hopes for the future
Shakeerah has missed a huge chunk of her childhood. At the age of one she fought through the tumour, and then the brain infection, which we were told she had zero per cent chance of surviving. She’s had such a difficult journey and she’s come through it.
This year she will have a scan that will hopefully make her ten years in remission. The doctors have always put her in the category where the tumour might come back, and we’re very hopeful that it is in remission for ten years which makes her completely clear.
For her now to be 11 and into her teenage years, I just want her to have her independence. She’s so independent in a lot of ways, but her mobility is holding her back – being able to walk, stand and do the things that other children do.
We had Eid celebrations with family a few weeks ago. Her cousin who is a similar age to her was so proud and excited that Shakeerah had walked and asked: “does that mean she can come outside and play with me?” which just broke my heart. I said: “not yet, darling”. She’s missing out on that. All the children can go outside and play, and she’s left sitting there with the babies and toddlers.
Fighting for the right school setting and the right services has been very draining as a parent. But I will continue to do it, just for her to have her independence.
