Decent people deserve a holiday, once in a while – even children with disabilities.
In theory this makes perfect sense and shouldn’t need saying. In practice, though – for some disabled children at least – it’s harder to achieve than you might think.
Home is an accessible environment for Isobel. As well as her trusty Triton chair and monkey stander, she has a Smirthwaite floor-sitter accompanied by a folding table, and a playmat surrounded by toys carefully selected with her motor impairments in mind. Her cotbed has been adjusted to a height where we can transfer her fairly easily without too much back strain, with high sides amply padded out so to minimise the risk of arms or legs getting stuck in between.
A small ramp connects the sitting room to the kitchen, so we can wheel Isobel around in her moveable equipment. We work with her on homework set by PACE, and through Manual Handling skills and everyday routine, we’ve learnt to hold her in a manner that encourages her to practise weight-bearing and postural control.
Not that it is perfect, of course – we could do with either a house move, or failing that an extension and lift. Nonetheless, outside of PACE, home is the best place for Isobel.
Going on holiday is a whole other story – especially if we’re going somewhere where people have little to no experience of working with disabled children. Unfortunately, that includes our own families.
I feel bad about what I am about to write. Isobel is surrounded by a lot of love from many members of her extended family; in particular my mother-in-law, who is always ready with a big hug upon entering the room.
Despite that, last Easter in the Wirral was probably the most stressful break we have ever had as a family.
The fault cannot lie with the in-laws. Just like ours, their home was built specifically with their and their children’s needs in mind. Like us, they had to adapt as their children grew. Effectively, the older Isobel got, the more obvious her access requirements became in that house.
“But you see them only once a year,” some might say. “Can’t you compromise?”
How can you, when bringing up a disabled child is your only normality as a parent, and you see your relatives just once a year? Anticipating exactly what issues could arise from travelling with your child – and how to compromise on them – is impossible when that child simply does not follow the standard infant developmental timeline. Trial, stress, error, and more stress is the only way you learn.
My nieces having turned ages five and seven respectively, the playmat that Isobel still needed at nearly three years old had long since been discarded, and due to the sheer volume of footfalls in the house, leaving a blanket on the floor was out of the question anyway.
At night we had to use a mattress on the floor with makeshift padding round the perimeter, as none of the children’s beds were safe for Isobel to sleep in – either they were bunk beds, or ordinary beds with no sides.
No chair or sofa (not even the sole firm armchair in the building) was comfortable or secure enough either for Isobel to sit on without crooking her spine and rigid elbows in a desperate effort to gain balance.
Imagine having to stiffen your legs, or twist your spine, just so you could sit in the only chair available to you. Multiply that by 12, times four. Compound that with the constant desire to stand or walk, whatever the circumstances, and the bleary-eyed nights of a toddler unused to sleeping in someone else’s house – and the discomfort becomes immeasurable.
That is exactly what Isobel had to endure all day, every day, for the entire Bank Holiday. Certainly, she needed full human intervention – something that became very difficult for Miles and I to do, given the amount of catch-up we needed to do.
On occasion, we had to leave Isobel on the armchair looking like a waste of space, unable to switch television channels with the remote or converse with anyone while her cousins excitedly played hide-and-seek in the next room. Either that or she was carried Pieta-style by relatives – a handling method that is frowned upon by her therapists, as it does not support her spine and encourages laziness.
But what other options did we have? Take the Triton chair with us? We’d need a specialist van to carry both that and the children, plus enough belongings for four days – and plenty of help at the in-laws’ to get it in, as it is extremely heavy and cumbersome, and can’t be packed up small. Would four days be worth the extra time and back strain? Leave Isobel at home? Specialist carer or babysitter aside, she would’ve missed out on both a fresh change of scenery and quality time with us – and the wonderful relatives she hardly saw – elsewhere.
Sadly, for some disabled children, this becomes inevitable with either age or severity of the impairment. Because their access requirements are so extensive that they cannot be met anywhere but home, loving parents like this one are forced to go on holiday without them. It’s a truly heart-wrenching decision that has to be made with the child’s long-term wellbeing, as well as the parent’s, in mind.
Of course, another alternative would be to invite all six in-laws to stay with us instead; a viable one if only we had enough sleeping, sitting and parking space to accommodate them all. Even if we did, we’d still need an extra room to house Isobel’s equipment temporarily. It seems that whatever we suggest, another conundrum arises to contest it.
Apart from one suggestion, that is – and an expensive one too. We are considering getting a campervan for future travel. It is probably the only way we can ensure Isobel’s optimal comfort away from home.
The whole point of a holiday is to relax. It’s fair to say that Isobel can never do that unless her access requirements are being met – and as a fellow human being, she does deserve a holiday as much as we do. Disability doesn’t stop at home – it’s a part of your life, wherever you go.
