We have just completed negotiations with the local wheelchair service (who also supplies buggies) and Isobel’s OT, whose opinion they had sought following our request for a tandem buggy that was light and easy to manoeuvre, parent-facing, and folded up small.
Of course we had our reasons. We have narrow doorways and corridors and a small gate – and in particular, given both steadily increasing specialist facilities (Isobel) and nappy-changing needs (Benedict), storage space is at a premium.
Naturally we wanted Isobel to be comfortable. But to necessitate a chunky, inflexible special needs buggy that possibly weighed a ton just because she was disabled? We didn’t agree. During a trial run of our desired buggy – the City Select by Baby Jogger, which has at least 16 different permutations – at our local John Lewis, she was perfectly snug and secure, laughing all the way.
The OT thought otherwise. Following a phone call to a local supplier for the City Select, she decided that it didn’t give Isobel the long-term postural support she felt she needed. Due to the child’s seat having just one layer, the OT claimed she couldn’t have padded the sides out accordingly as she had done with our previous buggy, the Stokke Xplory.
More irritatingly, she claimed that I risked more back strain lifting Isobel in and out of the buggy in the long term – especially if she still depended on it at age five for mobility. In her view the older child’s seat had to be placed at the lower back rather than the higher front for balance.
It was absolute rubbish. The OT wasn’t familiar with the City Select and had based her opinion on a phone call, not a physical trial. She wouldn’t acknowledge that the buggy had been specifically designed to maintain a sturdy balance, irrespective of which seat went where. There was no room in her head either for velcro-backed padding to stick on the sides (a suggestion of mine which, conveniently, the wheelchair service also overlooked). To further chagrin, the OT then recommended a single rear-facing special-needs buggy – as if Benedict didn’t exist.
In light of the one tandem buggy that they were prepared to give us NHS vouchers for – the Activate Tandem – being non-rear-facing, the wheelchair service suggested adding rear-view mirrors.
Mirrors indeed. Why not limit Isobel’s chances of communicating visually with us – additional bulk notwithstanding? We might as well build a second garage. They wouldn’t consider even a small contribution towards the costs of adapting the City Select should they become necessary.
I was perplexed. Upon visiting a forum on Special Kids in the UK – a website I’d heartily recommend to any parent with a disabled child – I’d learnt of a charity called Remap, whose volunteers created devices that enabled people with disabilities to lead more independent lives. Hoping to glean support, I asked if Remap’s designs were ever paid for with NHS vouchers. They said no, although sometimes they worked with NHS equipment.
Great scope for flexibility, hmm? Suddenly I could understand why some people with disabilities found the NHS so frustrating. As the epitome of the medical model of disability, they interfered with their lives. Sighing with resignation, we went ahead and bought the City Select anyway.
But perhaps we shouldn’t be surprised at the dearth of what someone once called “person-centred planning.” Experts like the OT think only in terms of the child, and nearly always at the expense of her parents. Once, when I was pregnant, the OT arranged for someone to try out several height-adjustable bases for Isobel’s Triton chair at home, so to minimise risk of back strain while shifting Isobel to her playmat and vice versa.
The best fit was a multi-height tilt base that placed the chair almost at the end of the dining table. It was so huge – and extended so far – that Isobel could have filmed a battle scene for The Lord of The Rings quite easily. Naturally, I sent it back.
Finding equipment that suits Isobel, her baby brother and us isn’t the only logistic we are having to consider. There is also the logistic of juggling a newborn with a two-and-a-half year old who still needs intensive one-to-one support. Despite a reduction of his working hours at his request Miles still has limited availability, so I have had to consider other ways of ensuring support for Isobel.
Before Benedict was born, I was awarded a local bursary to hire a carer from Crossroads agency to work with Isobel 10 hours a week for four weeks. Just as well really, because he came three weeks early, prompting the carer’s supervisor to bring forward the arrangement quickly. Frankly it was a godsend, enabling me to recuperate from the birth properly and focus on getting into a routine with Ben.
Since then, I seem to be managing an evolving team, with a childminder taking Isobel for four hours a week with an Early Intervention Grant up to Christmas on top of the respite care already in place (namely, the three-hour Little Breaks sessions at a nearby Children’s Centre on Wednesdays and Trish from Barnardo’s, who still visits voluntarily on Thursdays).
I wouldn’t have booked the childminder but for Isobel’s attendance of the local mainstream nursery being placed on hold, pending a specialist chair delivery. (This has also been made possible by an Early Intervention Grant, which funds 10 hours a week of childcare to “disadvantaged” two-year-olds.) Her start date is now anticipated for next term – provided, of course, that her SEN statement doesn’t place it under threat.
So there you go. Logistics are always going to be at the forefront of our minds, for as long as access and comfort are concerned. Even the most basic need, like learning through regular play, requires advance planning. You can’t just leave Isobel to get on with it while you’re breastfeeding her brother without booking someone else to initiate it for her.