‘That’s disgusting’

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Sam was ill recently, which meant he was off school and had to come with me to take Eli to nursery. He was a trooper, considering he had a fever, and was not as grumpy as I expected as we walked round the corner.

Eli goes to Sam’s old nursery and since Sam only left a year ago lots of the kids (and most of the staff) still know him and are excited to see him. This means he gets greeted enthusiastically by various adults as we enter, and then lots of kids come over to him as we go in to the playroom. I think I enjoy this familiarity more than he does.

This time we entered the room with Eli holding on to me, because he wanted to go home, such is the whim of a 3 year old who likes nursery. As I negotiated doors that don’t stay open, a wheelchair with one hand, and a clingy Eli with the other, a whisper went round the room that Sam was here. A little gang of 2-4 year olds came over and crowded round Sam, touching his legs and holding his hands. Truth be told, Sam isn’t hugely keen on this level of physical proximity from a gang of small (unpredictable) small children, but it’s quite a lovely thing to watch.

Then, a girl (probably 3 years old) pointed at Sam’s face.

‘That’s disgusting’, she said.

She meant the dribble. Sam’s lack of control of his tongue and mouth mean he can’t talk or eat, and he also can’t control his saliva. He can’t stop dribbling, and in fact if he’s excited, nauseous or stressed (such as when six children are crowding him) his tongue whirrs around in his mouth, increasing the amount he dribbles.

‘No, it’s not,’ I said. ‘It’s just dribble. He’s dribbling because he can’t help it. Sam’s not disgusting.’

Then I dabbed his mouth with the bib he always wears, got distracted by Eli’s ongoing emotional crisis, and the kids talked about something else. While attempting to engage Eli in something that wasn’t holding on to my leg, Sam lost patience with all the hanging around combined with fever and children, and burst in to tears. Eli started crying in sympathy (increasingly common these days – really sweet but emotionally taxing) and a lovely nursery worker came to take Eli out of my arms so that I could take Sam home. It was a great little outing.

Obviously that girl didn’t intend to be mean. She isn’t old enough to realise any of the implications of what she was saying and is just repeating what she’s been told at some point. I mean, if we took everything small children said as insults, then the locksmith who came to our house yesterday might have walked out when Eli told him he was a bum, rather than fitting the window locks which will hopefully prevent us being burgled again. [Side note: they stole Sam’s iPad which we rely on daily. It’s unfeasibly irritating.]

This incident made me think again about how we manage Sam’s dribbling. In the past we have put Hyoscine patches behind his ears, which dry up secretions and so reduce the amount of saliva coming out of his mouth. However, Sam has a tendency towards a blocked nose at the best of times, and after nights spent holding him next to a hot shower in order to clear congestion, we didn’t feel reduced dribbling was worth difficulty in breathing.

In the meantime, we’ve just got used to it. Sam always wears a bandana bib to absorb any dribble, it’s become his signature look. The amount varies hugely – some days he can wear the same bib all day and we barely notice an issue, other days the dribbling is almost constant. We dab his mouth with the bib without even noticing.

But mainly, we haven’t done anything about it because we’re not sure Sam is that bothered. He occasionally gets a sore chin, but it’s easily treated with cream. I’m not convinced that Sam realises he dribbles, and if he does I don’t think he thinks it’s a problem. There are options to surgically reposition salivary glands, or take or increase medication. or inject Botox. All of these would involve recovery periods, side effects or disruption. Is any of it worth it if Sam doesn’t perceive a problem?

Unless. Did he notice the girl saying he was disgusting? How often does that happen that we don’t hear or realise? People stare at him sometimes – is this because of his disability or because he’s dribbling? Would reduced dribbling reduce the staring, or decrease some people’s level of disgust? How big a deal is some dribbling – I come from the perspective of having recently toilet-trained a small boy, so a bit or dribble is not high on my list of horrible things. If you’re an adult and really offended by some saliva, maybe you need to piss off.

My instinct is that we don’t interfere until Sam is annoyed by his dribble, or becomes aware of others noticing it. We can’t put him through invasive procedures or risk side-effects of drugs because we, or others, don’t like a bit of saliva, but I’m five years in to a world of bibs and dribble and am perhaps uncommonly blind to the issue. And maybe I haven’t factored in the honesty and unintended insults of children.

 

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Living in Camberwell

I wrote this article for a local publication and so it is pretty specific to our particular corner of south London: it first appeared in the Autumn 2014 edition of Camberwell Quarterly, the magazine of the Camberwell Society.

Living in Camberwell with a disabled child

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My son Sam will soon be five years old and has lived in Camberwell and Peckham his whole life. Sam is bright, loves books and is developing freckles in the summer sun. He also has cerebral palsy which severely affects his ability to sit, stand, eat, drink and walk.

Following his birth in Camberwell during a winter of snow, Sam lived in three different houses in SE5 and then, last year, the big move to SE15 – so we have spent his life pushing him around Camberwell and learning how to navigate this bit of London with a disabled child.

We have been lucky to live so close to Sunshine House, on Camberwell Church Street. This beautiful building is exactly what a child like Sam needs: inspiring architecture, totally accessible for a buggy or wheelchair, stuffed full of dedicated therapists and useful doctors. I spent many hours enjoying the walk down Camberwell Grove and through the churchyard, then regretting the weight of a laden buggy as I huffed all the way back up to the top of the hill.

We were also fortunate in Sam’s first year to stumble across Camberwell Grove Early Years Centre. Parents of disabled children frequently struggle to find adequate childcare for their complicated kids, but the manager of this nursery welcomed Sam with enthusiasm and I was able to return to work. Sam has been going there for almost four years now and his younger brother will start shortly. Collecting Sam when he is playing in the lovely, huge garden with children he’s known for years is something to treasure.

In terms of activities for Sam, Camberwell is poorly served. Now Sam is four and uses a wheelchair, I cannot think of any local playgrounds that have any equipment that Sam can enjoy. He loves books, but he can’t get down the stairs to the children’s section of Camberwell Library. So we often travel to the Horniman Museum which puts on wonderful story telling sessions on Sundays. Sam is usually the child laughing loudest and longest at an elaborate tale of how the lion got his roar.

Transport is a mixed bag. The new ramp and lifts at Denmark Hill station are a great development, and it is entirely our fault that we moved one month after they were completed. Our nearest station is now Peckham Rye which has a labyrinth of stairways which make it pretty much inaccessible for a wheelchair user.

As a result, it’s usually most convenient for us to drive. Unfortunately Southwark has a hardline policy on blue badge holders, meaning that – unlike in Lambeth – we can’t park in resident permit bays. Given that Camberwell is increasingly dominated by controlled parking zones, this often means we circle the area looking for an elusive disabled bay.

We work hard to include Sam in as many aspects of local life as he can be, but it’s complicated. It’s easy for disabled children and their families to become isolated because they struggle to be included in ‘normal’ activities. There is a real need for us all to fight for more inclusion for disabled people.

In the meantime, the world gets better by small acts of kindness and friendship. We appreciate and enjoy Sam having a place in the communities of Camberwell and Peckham, where mothers talk to him in the playground and shopkeepers return his smile.

‘I feel sick’

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I am having an incredibly boring couple of days. Sam has vomiting and diarrhoea. It has unfortunately coincided with the days when we do not have help from nannies/carers and Eli ‘settling in’ to a new nursery. Obviously Sam can’t go to school. It’s not really possible to look after both kids so James had to take yesterday off work. As always, my work gets pushed aside.

Any parent is familiar with the curious mix of boredom and worry that accompanies having a sick child. Eli’s developing speech means he can now tell you a lot of what he thinks or feels, so when he woke up vomiting on Saturday night he could scream ‘I sick!’. Over the next few days he could tell us that he felt sick, that he needed a cuddle, that we needed to be gentle when we changed his nappy. It’s not fun seeing him ill, but amazing that he can be so eloquent about it.

That’s the first time we’ve nursed a speaking child though an illness – we are much more used to a child who is unable to say how they feel or what they want. Sam is often sick; when he vomits we have to wait and see whether it’s a sign of illness or just another bit of reflux. It became clear yesterday that he was ill and couldn’t go to school. So ill that we stopped all food and he had small amounts of dioralyte (though his gastrostomy tube) while watching hours and hours of TV. Today he woke pale and quiet and withdrawn. By mid-afternoon today he’d had half a banana (whizzed up in the blender and pushed through his feeding tube) and was complaining that Bob the Builder was unsatisfactory entertainment so hopefully he’s on the mend.

James and I know Sam so well we can generally tell by his movements, facial expressions and noises whether he is happy or not, whether he’s in pain or content. But we never know what’s coming – he can’t tell us he feels sick before the inevitable puke. He can’t tell us he’s hungry to indicate his tummy is ready for some food. So we just have to guess, and sometimes that means what goes in comes right back out again. So. Much. Wiping. And entirely homebound.

Earlier this week Sam had a general anaesthetic in order to have some tests. Other people can have this scan without sedation but Sam would move too much. It meant a whole day in hospital while we prepared for and then he recovered from the anaesthetic. Sam’s five weeks in hospital after he was born has left us with a strong distaste for the artificial light, overheated rooms and lack of control of a stay on a ward. It never gets any easier leaving Sam after he’s been anaesthetised (he’s had two operations related to his gastrostomy), sitting around eating M&S sandwiches while wondering what’s going on, worrying that he’ll wake up and won’t know where he is. It’s horrible when they do say you can go and see him because he’s confused and upset, and looks tiny in the massive hospital bed.

One of the questions his assigned nurse had asked in the morning was whether Sam could talk. We said no, but that he understood speech. Throughout the day we told him who each new person he met was and explained what was going to happen. Sam hates any kind of fiddling (he cries when he is weighed, even though this only means being held by me while I stand on some scales) but after 45 minutes of ‘magic’ cream on his hands and a lot of warning, he was surprisingly okay about the cannula being put it. They took blood at the same time as preparing for giving him the anaesthetic. Sam has a yearly blood test to check he is getting all of the necessary nutrition, something he finds traumatic. At least this reduced the number of times he’ll need to be pierced with a needle.

In the afternoon, as he recovered and waved his bandaged arm around, he started complaining that the entertainment was not up to scratch. A sure sign that he was on the up. He then whinged when the nurse came near him with a pulse/sats monitor. His nurse understood what he was trying to say, ‘You said he couldn’t talk, but I’m in no doubt what he means.’ Indeed.

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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