There is no greater warrior than a mother protecting her child (N.K.Jemisin)
When Jackie turned one, she started at nursery two days a week. It meant that I could return to work, and that she could benefit from interacting with other children and adults. Although of course I missed her (I would run all the way back from work to pick her up, and not because I wanted to get fit), I was confident that she was ready for it: by that age she could toddle around to get the toys she wished to play with, could point to things she wanted but couldn’t reach, was starting to feed herself and to choose what – and how – she would eat. (Within the first week the staff reported giving her a bowl of pasta and a fork – she refused to touch it; they put pieces of pasta on the fork and tried to feed her – she refused to open her mouth; they tipped the bowl of pasta out onto the table and she ate every single piece with her fingers. That’s my girl!).
Although I would have loved for Benjamin to go to the same nursery as Jackie – and they would have been happy to take him and would have done their very best for him – it just couldn’t provide the support needed for him to thrive and grow. At the age of two, he still can’t sit up, can’t even roll towards something he wants, can’t feed himself, can’t make himself understood. Without the one-to-one facilitation of a specialist carer, which a mainstream nursery can very rarely provide, Benjamin would not be able to interact with other children, to show his likes and dislikes, to take part in activities, to learn.
So we were delighted when Benjamin was offered a place at a state-funded specialist early years centre, part of the special school he will most likely attend for his primary education. It’s a brilliant school, modern, well-equipped, with small classes and one-to-one care provided by wonderfully enthusiastic, patient, dedicated, trained staff. Although at this stage he’ll only go for a couple of hours, twice a week, I’m confident that it will make a huge difference to his physical, social and intellectual development.
There’s one snag: the school is twenty miles away, the session times clash with Jackie’s nursery hours, there is no direct public transport link, and we don’t have a car. And the council – at a panel meeting to which I was not invited – decided not provide transport for Benjamin (as they would for older children with special needs whose most appropriate school is not their local one).
So we faced a choice. We could rent a car twice a week (which would cost approximately the same as Benjamin’s entire disability living allowance), take Jackie out of nursery twice a week (which she loves, and learns from, and is entitled to) and drive Benjamin (and Jackie, and the new baby when it comes) to his sessions. Or we could say “thanks but no thanks,” to Benjamin’s place and have him miss out on the early years’ education which can make such a huge difference to the development of children like him. In effect, I had to choose between the needs of two of my children. One of them would have to lose out.
But, I take after my mother. Or maybe, as my starting quote suggests, I just am a mother. I’m not one to give up without a fight. I love a little campaign, me. So I started writing letters. I wrote again to the council expressing my disappointment. I wrote to my MP, my MSP, each of my local councillors. Several of them promised to get involved. I wrote to my local paper, the East Lothian Courier. Within a couple of days a reporter got back to me and agreed to do a story.
The very same day that the reporter contacted the council for comment, miraculously, I had a call from the service manager for early years, and then one from the transport manager. Out of nowhere, it seems, they had discovered an escorted bus travelling in the right direction at the right time to take Benjamin to nursery, and an escorted taxi doing the return journey. They were prepared to fit Benjamin into this existing transport as, the service manager repeatedly emphasised, a “grace and favour” offer. Problem solved. “Relief for boy’s family” ran the headline in the Courier.
What I don’t understand is why – when there was appropriate transport running so that it would not even cost anything extra – they couldn’t have found this solution straight away. I hear on the grapevine – and this explains the “grace and favour” thing – that they were averse to setting a precedent for fear that other two-year-olds would demand the same service. A precedent that vulnerable children should be enabled to attend the education that is so vital to their development? Shocking. And also not a massive problem, given that the class contains precisely three children at a time, of which Benjamin is by far the furthest from the school. Of course, had they just quietly allowed Benjamin to slot into the transport that was available, no one would even have been aware that it was an option. Now it has been splashed all over the Courier maybe their unwanted precedent has been set…
Forgive me if I sound cynical. A few details remain to be worked out and there is plenty of chasing up still to be done, but I am confident and relieved that a solution has been found that enables both my children to get the early years education they deserve. Yet the whole episode leaves a sour taste in my mouth. I feel, at the same time, guilty that perhaps by being pushy I have got something for Benjamin that other children might not receive, and also angry that I had to spend time and energy writing, fighting, for something that could so easily have been achieved without any trouble to anybody. Time and energy that I could have spent doing therapy with Benjamin, playing with Jackie, earning money, even sleeping.
We have received such wonderful support for Benjamin since we moved to this area. The foot-soldiers of the services – the doctors, the nurses, the teachers, the therapists, the social workers – they know Benjamin, understand his needs, appreciate that we only want the best for him, and strive to make that happen. They have been dedicated, flexible, compassionate and generally given above and beyond what they are contracted to provide. His visiting teacher even offered to drive Benjamin and I to his sessions at her own expense on her day off if it would have helped.
Where (I think) the system fails our families is in the mysterious ‘panels’ and faceless bureaucrats who control the money and decide where services should be allocated. Without meeting us or our children, without listening to our stories, they weigh us up against one another and against their budgets, policies and fears of ‘precedent.’ It is because of them that families like ours – who already face so many barriers and challenges – have to find the extra reserves of energy to fight. It is (partly) because of them that so many special needs parents face related battles with depression, anxiety and isolation. It is because of them that many do not have the energy to fight any more. I’m lucky – I am both new enough to this to still have some energy, and bitchy enough not to take anything lying down.
We have been so fortunate; our journey so far has been easy. Many parents have to fight from the very start. Fight for recognition that there is even a problem. Fight for treatment, fight for therapy. Fight for suitable education, suitable housing. Fight for respite, fight for benefits that should be an entitlement. On top of being a parent, nurse, therapist, teacher, accountant, PA – oh, and maybe hold down a job too – we must become warriors for our children. I am honoured to have joined their ranks.