I met a woman recently who has two small children, one of whom has cerebral palsy. She would like to return to her skilled job but can’t find suitable childcare for her disabled child. A therapist recently asked her whether she thought it was right for her to go to work, didn’t she think she should stay at home with her disabled child who really needed her? I suspect no-one ever said such things to me because they somehow knew I might do something regrettable to them. Only someone who has no experience of looking after a disabled child would think it was a good idea for their mother to have no respite.
I went back to work when Ben was 10 months old. It was a bit more complicated than that sounds because ‘back’ meant to an employer who had last employed me three years previously and the job I had gone on maternity leave from was in Qatar. But ‘back’ I went, for two days a week.
We obviously needed some childcare. I had no real understanding of how it works in London and so had half-heartedly put Ben’s name down for the two nurseries I walked past each day – one a small private nursery who were perfectly friendly but didn’t seem optimistic about us making it to the top of their waiting list any time soon, and an Early Years Centre run by our local council.
I visited a potential childminder and sat in her sitting room as an evangelical Christian TV channel was put on mute. I explained Ben’s needs (being fed through his gastrostomy tube, medications, needing to be entertained, held, helped to sleep). She was happy with all this but she was recently qualified and had no particular experience of a child like Ben. Then she talked about how she would have up to four children with her. I left and phoned my husband, James, to tell him there was no way that woman could look after Ben; that she had no understanding of how relentless a job it would be.
We decided that if Ben was going to be in any kind of childcare it should be a nursery, where staff could take turns if he was miserable for hours and there would be more going on around him. So I called the Early Years Centre to check our progress on the inevitable waiting list and, in a moment of extraordinary luck, the manager answered. She listened to me describe Ben and called back that week to offer us a place for two days a week, starting in a few months.
Leaving Ben at the nursery was very hard. The first time I took him, I called James to weep – convinced that I couldn’t possibly leave Ben, that he wouldn’t be okay, that I could never return to work. It takes an incredible amount of trust to leave any child in someone else’s care – particularly a child who staff have very little experience of, when they have only just been taught how to feed him, when he occasionally chokes and turns blue with no warning. A child whose care involves liaising with physiotherapists, occupational therapists, speech and language therapists, community nurses, dieticians and who will vomit on you at least once a week.
At the same time it was very easy. All I had to do was go to work, stay there all day and pick him up. It meant leaving the house at 6.30am in the dark and crossing London but it was so incredibly liberating. I could walk up any flights of stairs I liked with no buggy, I read books for the first time in almost a year. I felt a bit duplicitous that people might think I was an average 30 year old woman and not realise I was Ben’s mother. At work, people talked to me about all sorts of things that weren’t related to babies or cerebral palsy or mothering. I could pee whenever I liked, and think about what sandwich I might have for lunch. It was restorative and important to remember I was competent.
James was very supportive but inevitably late for work having dropped Ben and a mountain of bags off at nursery. They had generally been up most of the night anyway – Ben’s sleeping was appalling and we had a deal where James got up with him before I worked. And he had a big job at the time so was normally coming home from work at about 7pm to help me get Ben to sleep, having supper, then working on his laptop until after midnight. It was brutal.
Going to work was absolutely the right thing to do, and only possible because I had a very supportive employer.
One of the challenges for a parent of a disabled child is that your child is highly dependent on you, but you need for your own sake and theirs to find a way to have a break. By the nature of Ben’s difficulty in independently eating/drinking/moving/playing, he needs adults around all of the time and they need to be people he and we trust. We feel we should have him with us all the time. But because his needs are so high, because he can’t entertain or occupy himself, because he can’t sleep through the night, we need to have a break and must learn to let others take care of him.
Ben’s keyworker at nursery was a Sierra Leonean woman (let’s call her A) with only one setting when she talked and that was LOUD. Ben had (still has) a startle reflex so he jumped at loud noises and often found this upsetting. He was totally confused by A but over time he accommodated the noise and the enthusiastic physical affection. A, meanwhile, became one of Ben’s fiercest defenders. She was just the first of a number of keyworkers that took it upon themselves to care for Ben, teach him to look and laugh, buy his favourite books out of their own money. Heaven help anyone who didn’t appreciate him (leading to a succession of agency 1:1 assistants who were deemed unsatisfactory and dismissed).
The nursery story isn’t all sweetness and light and I’m sure I’ll come on to the trickier moments (when I actually withdrew Ben for a bit), but at its heart Ben’s nursery is a place that is totally okay with the idea of difference. It has middle class kids living in the surrounding Georgian houses and working-class kids from the estate down the road, social service referrals and children who are there five days a week while their parents work in media, kids from all countries and permutations of families. It’s often a shambles, but as a lesson to kids that everyone should be included it’s doing pretty well and we were all very lucky to find it.
(Photos are of Ben at 10-12 months old, when he started at nursery)