School bus

Ben is now at school full time. He goes to the special primary school in our borough so we have to drive him there which takes 20-30mins.

Most children who go to the school get the school bus. I spoke to various people about this before the summer and was given the impression that the school bus is all or nothing – every morning and afternoon or not at all. I was grumpy about it on a day when I happened to be interviewed for a film about parenting children with special educational needs. I grumbled at length about the inflexibility of such systems.

I applied for transport assistance, thinking that I’d see what happened and we didn’t have to take it if we didn’t want to. I was told we could pretend we had physio every afternoon so Ben couldn’t get the bus. A woman who works for the transport bit of the council then came to visit us and assess Ben’s needs. She was really friendly, confirmed Ben would be offered a place on the bus due to his disability, and said it was totally up to us how often and when he used it. All of the scare stories about the inflexibility of the bus were totally unfounded!

We then couldn’t decide what to do because Ben is so young and time to fit in his breakfast in the morning is already limited (the bus arrives half an hour earlier than if I drive him straight there). I enjoyed taking and collecting him when he had gone to school 2.5 days a week last year and it meant I got to know the staff and kids at the school. But doing the school run for an hour every morning and afternoon five days a week is a lot of time – time that could be spent with my other child, or working, or making a dent on the Ben-admin/washing/massive piles of lego in my sitting room.

We came up with a complicated rota of Ben getting the bus on various mornings and afternoons after an initial few weeks of me driving him. Everyone nodded when I told them, looking kindly at me like I was nuts. We realised that no-one, including us and more importantly Ben, would be able to keep track, so we settled on Ben getting the bus each morning and being collected every afternoon.

On the first morning, we were ready at the front window looking for the bus – we had been given strict instructions that the bus would wait for 3 minutes from our allotted pick-up time but no more. We’d told Ben what was happening and he was totally fine. He was smiley and relaxed.

While waiting, James and I had some small misunderstanding about something and I burst in to tears. I found the whole thing so emotional – my little boy going all on his own on the bus with people he’d never met before. And Ben’s school bus is, by definition, full of disabled children. Happy, friendly, lovely kids, but there’s no getting away from your child being disabled in that context.

Non-disabled four year olds don’t get buses to school, they potter round the corner to the local primary. In fact hardly any British city kids get organised buses to school; there is no culture of school buses like I have seen in American films. (Aside: construction companies in Qatar buy old American school buses, so when we lived in Doha you would often be waiting at traffic lights next to big yellow buses with SPRINGTOWN HIGH SCHOOL written on the side, which were full of adult migrant labourers being driven to work.)

Then the bus arrived and we met Omar, the driver. Ben got lifted up on a platform on the back of a bus, and was all smiles as his wheelchair was secured. Then he was gone. Of course I called the school mid-morning and they said he had arrived happy.

That routine lasted three days.

On the fourth day we repeated everything as normal, Ben smiled at Omar, and then his bottom lip appeared in direct correlation to the height of the wheelchair lift. Ben’s bottom lip is legendary – he has used it to great effect ever since he was a little baby. By the time he was in the bus he was crying and wouldn’t open his eyes to say goodbye to me. ‘Ben’s very sad’, said Max.

So now each morning Ben is happy while we all wait for the bus. The bus arrives and Ben smiles at Omar. Then he sticks his bottom lip out as he gets in to the bus and cries as it leaves. Unless the lady who accompanies the children sings to him, in which case he allows himself to open his eyes a tiny bit and marginally retract his lip. As soon as she stops, off he goes again with the tears. It’s all heartbreaking.

I keep asking the bus staff how he was during the journey and each day they say he stopped crying as soon as they turned the corner. Every day each child is greeted by the headteacher or deputy head on their way in to school, and every morning they say he was happy. We collect him each afternoon and his class teacher says he was cheerful.

So I guess he’s okay and we all carry on until he gets used to the idea of leaving us on the bus. But in the meantime my heartstrings are taut and in danger of snapping.

Inquiry: failing disabled children

I wrote last week about our experience of getting Ben in to a nursery. It was stressful but in the grand scheme of things we were incredibly lucky.

Ben has been to that nursery for 2-3 days a week, year-round, for almost four years. Since last September he has spent 2.5 days a week at a local special needs primary school and then two days a week at the mainstream nursery. He is still a nursery age child so the time at school counts as ‘nursery’ from an educational perspective.

If we all just pretend for a moment that things are simple and linear, it is possible to track a path from Ben in 2010/11 who was startled by all loud noises, uncomfortable around young children and wary of new people to Ben in 2013/14 who took ONE WEEK to settle in to a new school, copes admirably with loud, unpredictable classmates and has made trusting relationships with staff. I don’t think that would have happened if Ben had spent the last four years at home with me, and I think a large portion of his development (particularly social) is down to nursery. Meanwhile, of course, I’ve been able to work a bit and have maintained some semblance of sanity while having some income.

We just got Ben’s first school report which makes me want to burst with pride. I won’t bore you with the full transcript, but two bits that illustrate my point here are:

‘Ben took no time to settle in and establish himself as a very popular young man! He quickly adjusted to his new school and new routine. He built really positive relationship with the adults in his class and it has been wonderful to see him make so much progress this year.’

‘Ben has participated in choir club together with some children from the local mainstream school, and really enjoys being with the other children. He is extremely popular with them too and is always the first to be picked by them for partner games. Ben clearly loves this and everyone comments on how happy he is in choir.’ [NB by definition, choir involves noise]

Ben has so far had a broadly positive experience of childcare and education but at a national level the picture still seems bleak.

The report of a Parliamentary Inquiry into childcare for disabled children was published this week and is full of extraordinary, but unsurprising, statistics about the difficulty, cost and inadequacy of childcare:

“Despite the huge progress made in creating a national system of childcare provision in the past two decades, the evidence received by this Inquiry clearly demonstrates that national policy has failed to create a childcare system that meets the needs of disabled children and their families. “

Some stats:

Only 16% of mothers of disabled children work compared with 61% of all mothers.

72% of families with disabled children cut back or give up work because of childcare problems.

86% of families of disabled children who use childcare pay above average

33% of parent carers don’t use childcare because staff don’t have the right experience.

41% of families with disabled children age 3 and 4 can’t access 15hr free early education offer (that theoretically all children are entitled to)

Behind all those statistics are real parents trying to go to work and bright, beautiful disabled children who deserve the opportunity to experience everything that good childcare has to offer.

The Inquiry took oral evidence from a number of mothers of disabled children. One of the striking things is the inconsistency of provision. I have crossed paths with Stacie Lewis a number of times – we live in neighbouring boroughs in south London, our children are close in age and have a similar level and type of disability. But her experience was totally different from mine. She went to more than 50 childminders and nurseries before she found one that would take her daughter.

The inevitable problem with providing good childcare for disabled children is it is more expensive than if the child were not disabled. They need more support, more staff hours, more meetings with other professionals, better trained staff, adapted equipment and buildings. It is no coincidence that Ben’s nursery is run by our local authority – private nurseries are unlikely (and generally don’t) take on children who will undermine their profit margin.

Our local authority ‘restructured’ Ben’s nursery last year which involved a new staffing structure and everyone having to reapply for their jobs. I wrote a number of letters expressing concern about the effect this would have on children like Ben which the council essentially ignored and so inevitably, come the summer, all of the staff who directly knew Ben had left. We kept Ben at home for a few weeks before we felt confident that he could return and be safely cared for. He then had to get to know new staff, who had very little training in Ben’s particular needs.

I’m glad we persevered – both in terms of making it work with new staff, and in fighting with our local authority for seven months so Ben could continue to go to the nursery when he started school part-time. Some of the children have known Ben for years now – they bring him toys to play with and read him books. The staff (who survived the restructure) know our family and supported us in getting Ben in to school early. There is real value in Ben being part of this and it is incredibly disappointing that thousands of disabled children are being denied such opportunities.