Five-year-old Annie has been on a difficult journey that families of a child with complex disabilities will recognise. But in some ways, as her parents Ali and Michael acknowledge, she has been fortunate. They were able to get specialist help for her from Sense and this has made a huge difference to her life.
Sense wants all families with a child with complex disabilities to receive this level of support, and our new strategy – including the development of services and our campaigning work – aims to drive this forward.
Ali and Michael already knew that Annie might have problems when she was born. They were told that she was deaf but then more and more problems seemed to mount up, including epilepsy and severe visual impairment. “We had so much bad news,” says Ali; “she’s not going to do this, she can’t do that, I just thought what can she do?”
Annie has a rare genetic condition called CASK gene mutation which caused Ponto Cerebellar Hypoplasia and Microcephaly – which in turn caused her epilepsy, deafness, developmental delay and cortical visual impairment. Annie can only process what she sees very slowly.
Like all parents in this position, Ali and Michael were knocked for six. “We felt desperate,” says Ali, “and very worried that our little girl might not live very long. She was literally doing nothing. You might get the odd smile, but there was no physical interaction with the world, or so it seemed. We just didn’t know how we could help her.”
“We just didn’t know how we could help her”
Fortunately, Ali works as a paediatric nurse, had heard of Sense and got in touch – and Anne Cheesborough, Family Support Worker, visited the next week. Sadly, many families with a child with complex disabilities have still not heard of Sense, and our new strategy is aiming to tackle this.
“That was the first contact,” says Ali. “It was actually on my birthday and it was the best present I could have – this amazing lady coming to our house, with her bright red hair and these amazing toys! Anne immediately knew how to hold Annie and make her feel secure. She showed us that she was actually responding in her own way and how to play with her. Rather than looking at all the things that were wrong with her she said `but look at what can do.”
It was during this session that Annie reached out for something for the first time. Anne put some wooden chimes on the floor next to her and struck them. Annie heard the musical chimes and then, very very gradually, looked in the direction of the chimes before reaching out and hitting them with her hand.
“She moved her hand and whacked it,” says Ali. “And it was like, wow, our little girl can touch! We were just amazed that Annie can do things.”
“Wow, our little girl can touch!”
Over the weeks Anne would visit and show Ali and Michael how to play with Annie. One of the key things was that Annie just needed much more time to process things. “You give a toy to a child and you expect an immediate reaction, says Michael, “but I learned we had to leave it longer, for her to hear something, to work out that something is there, to get it into her field of vision – and then eventually she’ll work out where it is and turn into it.”
Anne also helped Ali and Michael to work through the grieving process that many parents with a disabled child describe. “You’re going through the stages of grief,” says Ali, but your child is still there needing the care and attention themselves – and her big sister Rosie needed to be looked after too.”
Having experience as a nurse was also a mixed blessing. “I identified much earlier on that Annie was going to be much more than deaf and I could see what our future was going to be. I realised that she would probably never walk or be independent. I had an insight of what we needed to do, but it was very scary because our lives as we had it imagined it had gone forever.”
For Michael it was a different path: “It took me a while to accept that Annie did have all these problems, and she wasn’t going to make this miraculous jump forward. Finally, you reach that point of acceptance, with Sense’s support, that this is what it is – so let’s now find the positives, this is our family, and we will move forward.”
Gradually over the weeks and months, Annie continued to make progress. She and Ali started to attend the Sensory Explorers group each week for children aged up to five where there was all sorts of sensory play. “Anne introduced Annie to playing in boxes of cornflakes,” says Ali, “but for a long time she didn’t like touching things with her hands. But gradually she decided `I quite like these’ and cornflakes, including eating them, became her toy of choice.”
Going to the Sensory Explorers Group and also the monthly Saturday Club run by Anne and Anthony McKay, MSI Consultant, also gave Ali and Michael the chance to meet other parents. “Like a lot of parents with a disabled child, we just felt quite lonely,” says Ali. “You go to a normal playgroup and she can’t access things, you stick out like a sore thumb.”
“The first time we went to Saturday club, we got a really warm welcome from other parents,” says Michael. Annie can crawl and rove around and if she is being very noisy or having a meltdown you don’t need to explain. You go there and people understand; everyone’s in the same boat.”
“We can just go as a family and feel really safe”
Annie’s older sister Rosie who is aged seven also loves going to the Saturday Club which is now held at TouchBase Pears in Selly Oak, Birmingham. “They’ve been absolutely fantastic with all of us, the whole family,” says Michael. “And it’s not just about Annie, we’re going here as a family to do something nice together.”
Going to the Saturday Club has also helped Ali and Michael to see that many of the challenges they face are also experienced by other families. “It can be an awful long slog for parents to try to get the right help and services,” says Michael. “Being a full time carer would be absolutely exhausting and very isolating, unless you’ve got the chance to interact with other people in the same situation. It can also have a massive financial impact if a parent has to give up work to care for their child.”
Also, like many children with complex disabilities, Annie is not a great sleeper. She’s often restless in the night and wakes around 4.00 am which means that Ali and Michael say they feel constantly tired – although they do get a break some nights when Annie stays at Zoe’s Place in Coventry which offers respite.
She has also started to attend Victoria school following advice and support from Sense. The specialist multi-sensory impairment (MSI) unit there is one of the few in the country and its curriculum was developed by its head, Heather Murdoch in conjunction with Sense. One of the key things they work on with Annie is communication including on-body signing where hand signs are placed on her face, shoulders and arms – things like `food’, `drink’ and `more.’ She loves it there.
Annie also receives six hours intervenor support from Anne each month, which is paid for from her direct payments. They go swimming, riding, the circus, you name it – and it means that Ali and Michael can spend special time with Rosie.
Annie is now five and has come a long way since those dark, early days. “Our little girl is a different child compared to then, says Ali. “She’s generally a very happy little girl, very determined, very active and never stops moving. She doesn’t walk but she crawls and bounces around and will pull herself up to a standing position. Books, sandpits and music are probably her favourite things now – but only on her own terms! She also loves spending time with her sister Rosie, laughing and giggling, playing rough and tumble and splashing each other in the bath.”
“Our little girl is a different child compared to then”
Of course, Annie still has her off days which are very difficult for all the family, especially when she is having a lot of seizures and her medication is making her quiet and miserable. “But the thing we have learned from Sense is that we shouldn’t over worry about that. Every young child has their bad days,” says Michael. “Annie is who she is meant to be. We do have dark times with her, and when she’s poorly, life is really hard, but she brings so much joy as well.”
Ali and Michael recognise that despite the many daunting challenges that Annie and they have faced, they are in some ways fortunate. Ali’s experience as a nurse lead them to Sense in the first place, they have received brilliant support from Anne and Anthony, they live only 20 minutes away from the Saturday Club at TouchBase and Annie attends a school with one of the best MSI units in the country. And perhaps, most important of all, she has lots of love in her life.
It would have been easy for them – like too many families with a child with complex disabilities – to have slipped through the net and not get the support they are crying out for, and have every right to expect. That is why Sense’s new strategy for 2019 – 2022 has made support for families one of our key objectives. There’s a lot of hard work to do, and progress will be incremental, but Sense is determined that children like Annie, and their families, will get the support they deserve.
This article was first published in Talking Sense, the Sense members’ magazine. Click below to become a member for free!