Care in Perspective

Daniel Franks, London

When I was asked to write a blog for Carers Week, I felt a bit of a fraud – after all, I'm not a primary carer. Then I remembered something I had heard at a talk for parents of children with special needs – it's not just the child who has special needs, but the entire family. With a five year-old daughter who has an extremely rare chromosome disorder, I am part of a special needs family - hopefully that's sufficient qualification to write for Carers Week.

For those of you who know me, I'm a private person (more on that below), so writing a blog about this doesn't come easily. Anything I have to say is, by definition, personal; others, even those in similar situations, will view things differently. But that's part of the reason for writing this – for many, there are few ways of letting the outside world know what it's really like to be in this situation. So hopefully this gives some insight into a world about which, five years ago, I knew very little.

So here are a few things that are probably not apparent to those who are not in a similar situation:

• The feeling of guilt that comes with being a parent of a child with special needs cannot be understated. Guilt that I leave Lauren (my wife) to deal with the brunt of caring responsibilities, while I am having a ‘normal’ life at work. Guilt at having to make difficult choices for our own sake and for the sake of the broader family – like taking a family holiday without Sophia, so that we get a break from caring responsibilities and our other kids get a ‘normal’ holiday without our attention being constantly diverted. Or attending family functions without her, either because access is limited or because she simply wouldn't handle the social situation well. So ‘family events’ aren't family events at all.
• I have a newfound sense of admiration and appreciation for Lauren. I can't help but admire the way in which she deals with things, with a strength that I couldn't muster personally. Her diary is filled with appointments (doctors, therapists, the school, the local authority….), so it's a full time job in its own right. Yet she does it while being a working mum.
• It's exhausting, both physically and emotionally. The physical strain of lifting a five-year old who cannot sit, stand or hold on to you (it's basically lifting a dead weight). The emotional strain of being on duty all the time – unless Sophia is actively engaged by an adult, she is unable to occupy herself. And if she's not occupied, she will make enough noise to let you know! So it's impossible to get anything else done. And then there's the sleep deprivation (complex special needs kids often have sleep issues – think of a newborn's sleeping habits and apply them until adulthood and beyond).
• There's a mixture of pride and heart-break seeing Chloe, Sophia's elder sister, handling having a disabled sibling. As well as putting up with the attention that Sophia gets, she has witnessed more than a nine year-old should. Watching your five year-old sister have epileptic seizures, being carried out of the house by a paramedic and whisked away in an ambulance must be frightening beyond belief. And she misses out on a ‘normal’ life with a sibling with whom she can chat and play.
• We're fortunate to have the support of our nanny, who has years of experience working with children with complex difficulties. She has achieved so much with Sophia and, time and time again, shows what Sophia is capable of doing. With that, though, comes a sense of failure - that we as parents are unable to nurture our daughter in the way that others can.
• Despite being fiercely independent people, having a special needs child means that it's impossible to handle things alone. So we are reliant upon the help and support of our families, for which we are extremely grateful (even if sometimes I stubbornly refuse until they won't take ‘no’ for an answer)
• As a fairly observant member of the Jewish faith, I never thought I would end up questioning my faith. But receiving Sophia's diagnosis gave rise to difficult questions – how could an omnipotent being inflict something so debilitating on an innocent child? Despite that, I still count my blessings – there are many families who have things much worse than us, and we are privileged to be able to support Sophia and give her the best chance of reaching her potential. To see her make progress, no matter how small, restores that faith.
• Planning for the future has taken on a very different meaning. We've now got to think about how we will provide for Sophia in the short-, medium- and long-term. There will come a point when we cannot look after her ourselves, and that's a difficult future to envisage.
• As mentioned above, I'm a very private person. Save for immediate family and friends and the odd (welcome) exception at work, people tend not to ask questions about how Sophia is progressing, or even how I am doing. Perhaps it's about the relationships that I have with other people (and their wish to respect my privacy), or perhaps they simply don't know what to say or ask. But being the parent of a special needs child can be quite isolating, as there are few other people who can relate to what you're going through.

Being in this unique position has also made me more conscious of how, despite having made great strides, society still has a long way to go before it is fully inclusive:

• Toilets – a taboo subject, so people rarely talk about it. But it's a massive issue for people with disabilities. The lack of appropriate facilities simply makes routine life inaccessible. Take, for example, aeroplanes. If you need a carer (or two) to assist and a hoist/changing bench, the choice is stark. Either don't fly, or accept the consequences if you do. It's not just planes – standard accessible toilets don't have these facilities. There's an initiative for fully-accessible “Changing Places" toilets, but there are only 1300 of them in the UK. So the choice is either not to leave the house, or to be changed on a dirty floor. (P.s. disabled toilets are designed for disabled people – if you're not in that category, you're probably able to find the nearest standard toilet. Some people don't have that luxury.)
• Language – I still hear people using inappropriate language. Surely there are better ways to describe ideas that you think are ‘retarded’ (you're saying that the idea is so bad that only a person with learning difficulties could come up with it)? Or perhaps it might not be appropriate to comment on where on the autistic spectrum you think someone might be?
• Perspective – it is so much easier to have perspective when you are faced with life's challenges. I've participated in conversations in which parents have said how “horrified" they would be if their child were to become a waitress. Frankly, we'd be delighted if this were something that Sophia could achieve. At the moment, though, we're working on the sitting and communicating.

Despite these challenges, I feel extremely lucky to have the family that I do. No matter what life throws at us, we will tackle it head on, as any parent would do. And all three of our children bring us joy in their own ways. But, the next time that you ask someone how they are and they respond “fine, thanks", realise that their “fine" and your “fine" might be very different indeed.