Holiday?

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The summer holidays have really derailed my commitment to writing blogs. Despite Sam still going to nursery for two days a week though the school holidays a combination of my husband being away in June, our nanny being away for most of July, me trying to do some work, then us going on holiday for two weeks meant I was struggling to keep on top of basic tasks. And my house was a tip.

I had good intentions of writing when we were on holiday – wouldn’t it be the perfect opportunity, with all that spare time? But Sam developed a fever on Day 1 of our stay in Devon and spent a considerable amount of time vomiting (in a carpeted holiday home, hard to tell sometimes whether I was more stressed about Sam or the soft furnishings). Then his gastrostomy site got infected so he was really sore. Then we went on to Cornwall where we stayed with good friends and loads of kids so I was too busy sipping Aperol Spritz in the hot tub to be writing.

Talking of which, if Sam could talk I’m certain he would tell us the hot tub was the highlight of his holiday. He is at his calmest, stillest, most relaxed in the very hot water. I spent 45 minutes in there with him one morning. He would happily have stayed longer but I was concerned about whether he was actually being cooked and whether his fingertips would ever rehydrate.

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I had purposefully reduced the amount of Sam-admin I did on holiday – which meant I spent only one morning making calls and answering emails. On our return to London, I caught up with everything and we had embarked upon all the appointments we had postponed while we were away…

We returned to London on Friday and then (these are only the Sam-based bits):

Saturday – 1hr physio at home

Sunday – 1hr physio at home

Monday – 1hr physio at home and checking fit of a new chair. Cooked, blended and froze a week’s worth of food for Sam (approx 1.5 hrs). Confirmed Sam can attend a hospital appointment for some tests. Rearranged Sam’s specialist dentist appointment so he can go to a picnic with friends from nursery later in the week. Ordered repeat prescriptions from pharmacy.

Tuesday – Opthalmology appointment at hospital. Waited in for collection of Wheelchair Accessible Vehicle we had borrowed for holiday. 1hr physio at home. Tracked down spare part for Sam’s chair which had been delivered to the wrong house.

Wednesday – new chair for Sam delivered. Met with Assistive Technology team to start loan of eyegaze computer which wouldn’t work. Met with council transport co-ordinator to complete application for Sam to get the bus to school. Packed bags and made food so Sam could stay with my parents overnight. Dropped Sam off, then deliver medications that I forgot to pack originally. Called company to arrange fitting of spare part to Sam’s chair.

Thursday – picnic at Sam’s nursery to say goodbye to other kids/parents on his penultimate day. Spoke to community nurses about Sam’s sore gastrostomy site. Rearranged some hospital tests. Caught up with Sam’s speech and language therapist and arranged to meet next week. Met with Assistive Technology team to get eyegaze computer.

Friday – Sam’s last day at nursery. Traded voicemails with Community Dietician. Collected medicines from pharmacy.

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We are constantly trying to think about the balance between Sam being a small boy and being a disabled child. Other 4 year olds get to spend summer holidays playing in parks, going swimming, making cakes. Sam rarely has a day without an appointment. In this instance, he had just had two weeks of illness/recuperation/relaxation, and most of these appointments were important to ensure his ongoing comfort, development and nutrition, so I think it was okay. But it’s not fair. As his parents we have to keep reviewing whether the things we make Sam do are right, and that he isn’t missing out on too much of the fun stuff.

I often talk with friends/acquaintances about why I am not working as an architect, why I’m not employed on a permanent basis; weeks like this are why I’m based at home for now.

(P.S. In that last photo of Sam doing physio exercises, he’s watching a video on the iPad to encourage him to keep his head up. His favourite thing at the moment is an old BBC Jackanory film of Rik Mayall reading Charlie and the Chocolate Factory by Roald Dahl. He has watched it tens of times and thinks it is HILARIOUS.)

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Inquiry: failing disabled children

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

Sam 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 Sam in 2010/11 who was startled by all loud noises, uncomfortable around young children and wary of new people to Sam 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 Sam 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 Sam’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:

‘Sam 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.’

‘Sam 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. Sam clearly loves this and everyone comments on how happy he is in choir.’ [NB by definition, choir involves noise]

Sam 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 Sam’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’ Sam’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 Sam which the council essentially ignored and so inevitably, come the summer, all of the staff who directly knew Sam had left. We kept Sam 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 Sam’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 Sam could continue to go to the nursery when he started school part-time. Some of the children have known Sam 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 Sam in to school early. There is real value in Sam being part of this and it is incredibly disappointing that thousands of disabled children are being denied such opportunities.

 

 

 

 

Care/Trust

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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 Sam 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 Sam’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 Sam’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 Sam. 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 Sam; that she had no understanding of how relentless a job it would be.

We decided that if Sam 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 Sam and called back that week to offer us a place for two days a week, starting in a few months.

Leaving Sam at the nursery was very hard. The first time I took him, I called James to weep – convinced that I couldn’t possibly leave Sam, 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 Sam’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 Sam and a mountain of bags off at nursery. They had generally been up most of the night anyway – Sam’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 Sam 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 Sam’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.

Sam’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. Sam 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 Sam’s fiercest defenders. She was just the first of a number of keyworkers that took it upon themselves to care for Sam, 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 Sam for a bit), but at its heart Sam’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 Sam at 10-12 months old, when he started at nursery)

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