School bus

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Sam 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 Sam couldn’t get the bus. A woman who works for the transport bit of the council then came to visit us and assess Sam’s needs. She was really friendly, confirmed Sam 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 Sam 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 Sam-admin/washing/massive piles of lego in my sitting room.

We came up with a complicated rota of Sam 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 Sam, would be able to keep track, so we settled on Sam 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 Sam 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 Sam’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. Sam 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, Sam smiled at Omar, and then his bottom lip appeared in direct correlation to the height of the wheelchair lift. Sam’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. ‘Sam’s very sad’, said Eli.

So now each morning Sam is happy while we all wait for the bus. The bus arrives and Sam 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.

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The Twits

The time has come to elaborate on the ‘stories’ part of ‘Stories with Sam’.

Sam loves stories. He’s always liked books. When Sam was almost one year old, we were on our way back from a holiday and due to huge snowstorms and a perilous motorway we made an unplanned stop at my sister Maddy’s house in Nottingham. At midnight Sam woke and was really struggling to breathe. My sister and her boyfriend got up to show us the way to the nearest hospital, where we carefully walked over the ice to reach A&E. As soon we mentioned breathing problems in a child with cerebral palsy who was not yet 1, we got whisked through to a bed where they gave Sam some drugs and a nebuliser. We were surrounded by doctors and nurses, Sam was very distressed and his breathing was really laboured.

While James briefed an Intensive Care doctor on Sam’s history, in case he needed to be sedated and ventilated, a nurse suggested I sit with Sam for a bit and do something he enjoyed to see if his breathing calmed down. So we read The Very Hungry Caterpillar. Sam smiled at the list of food like he always did, and by the time the caterpillar had become a butterfly Sam’s breathing was much improved.

The nurses said they had never seen a more dramatic response to a book.

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After school this afternoon I put Sam into his Brookfield chair (new, less supportive than his normal chair so he has to work a bit harder, a bargain at £750) and offered him a choice of four books to read, all of which he knows well: Sir Scallywag and the Golden Underpants, Watch Me Throw The Ball, Shifty McGifty and Slippery Sam and The Twits. He knows all of these books well – particularly the first three which are fun picture books.

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Sam chooses by looking at the book he wants. He chose The Twits by Roald Dahl.

The Twits is a more recent addition to our library. As I mentioned previously, Sam’s a big fan of an old video on YouTube of Rik Mayall reading George’s Marvellous Medicine. His uncle Harry then bought him a box-set of every Roald Dahl childrens book and we’ve been working our way through them.

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I think some people wonder how much Sam understands, how much he can learn. The kid chose the book with barely any pictures, no colours and a lot of words. He bloody loves stories. Even when his brother is trying to run over his hand with a truck.

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An hour later I found Eli sitting in the chair, drinking milk and watching TV. How many other kids get to relax unsupervised in furniture that valuable?

(Apologies for blurry phone photos – hard to take high quality pictures when you’re busy reading)

‘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.

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.)