Fear

Sam has a phobia of dogs. Or at least, we first noticed that he was scared of dogs. Then we found it was also cats, then foxes, and guinea pigs. And chinchillas.

IMG_0964

For a boy who has very limited communication, Sam found a very effective way to express his disquiet upon seeing these animals (or, as time went on, pictures of them): by gagging or sometimes actually being sick. Maybe the whole thing started because he happened to be sick when a dog was around, so the two became conflated in his mind and seeing a dog triggered vomiting. Who knows – Sam can’t tell us.

Either way, it started last summer and got progressively worse. At the beginning Sam would gag when we saw dogs in the park. Then he gagged at some dogs in TV programmes, sometimes being sick. Then it grew to include drawings in books, or dog-like bears, or cats. And plastic toys of animals. And TV adverts for plastic toys of animals. We sent the ’12 Dogs of Christmas’ DVD which someone gave him as an unfortunate but well-meaning present to the charity shop.

We get worried about Sam being sick for a whole number of reasons. Nutrition: because he needs all the calories he can get. Safety: because he chokes easily. Health: because he is prone to chest infections and repeated vomiting could lead to aspiration (breathing in stuff which doesn’t belong in lungs). And mess: because he tends to be sick on his chair or carpets which is a pain to deal with.

We got to the point where we would avoid or switch off TV programmes or books that had characters that triggered a reaction. One morning, a rogue TV show slipped through and Sam was so sick that we had to let the bus go and I drove him to school once we’d washed and changed him. He was unable to engage at all with the mobile petting zoo when it visited his school without gagging. He started gagging when we told stories about him gagging earlier in the day when he saw a dog. So much gagging.

It was having a significant negative effect on our day-to-day lives and we were wondering how to get some help. By coincidence, we saw a hospital psychologist about something unrelated and she arranged a course of therapy for Sam at the hospital with a trainee psychologist. We were very lucky to be offered this – the difficulty of access to Child and Adolescent Mental Health Services is well documented and I doubt we would have got such personalised treatment as quickly or easily if we had waited for a referral.

We have just finished a block of sessions where we worked with the psychologist to draw up a hierarchy of Sam’s fears – with talking about dogs with him in earshot at the bottom, through to him stroking an actual dog at the top. We figured that we’d focus on dogs and hope the chinchilla fear abated as a result.

Already, Sam has clearly demonstrated that he can learn to manage his anxiety – stories and pictures which made him gag the first time he heard or saw them are okay after a few weeks. We still have a way to go but are seeing real progress. I inadvertently tested this in our local shop last week. I went to get some milk and when I came back Sam was gagging for no apparent reason. Then I noticed I had left him directly opposite a card rack which featured literally nothing but photos of dogs! A few months ago he probably would have been sick, but this time we talked about it, and he recovered really quickly. You wouldn’t believe how many dog images there are in the world once you start looking for them.

It’s not going to be linear progress; Sam is now okay with the cat that visits our garden, but gags when we read him a new story about a dog. But we can now envisage a time when we can go for walks in the park without being on high alert. We’re currently on holiday and have been to a farm park* where Sam happily saw and fed goats, sheep, horses and turkeys. This is huge progress compared to our visit to a Miniature Pony Sanctuary this time last year which Sam DID NOT LIKE.

IMG_1151

What the therapy has made clear is that it is us adults who need to change our attitude as much as Sam. By immediately turning off offending TV programmes, or generally panicking at the first sign of Sam being sick, we were confirming to Sam that there was definitely something to worry about: these dogs must indeed be truly terrifying if all the grown-ups are so keen to get rid of them. We did all of these things for good reasons – it’s entirely justified to want to avoid Sam vomiting – but we were ultimately making things even worse and have had to retrain ourselves in how we respond. We also have to try to re-educate Eli, who has become so attuned to the problem that he shouts ‘DOG, DOG’ at the first sign of a canine, which isn’t hugely helping.

IMG_4545

IMG_4542

As with so much of parenting, it’s all about being calm and consistent, about forcing oneself to demonstrate to your kids that everything’s going to be okay even though they are scared. We have to risk Sam being sick. We can’t carry on visiting people’s houses, finding out as they open the door that they have a dog, and introducing ourselves by Sam threatening to vomit on their 100% wool rug.

When going through this process, we also have to bear in mind Sam’s consent. On the one hand, we are trying to improve Sam’s quality of life by helping him overcome the feelings of anxiety he gets when he sees or hears dogs (or cats, guinea pigs, bears…). But it’s perfectly reasonable for him to not like dogs. We have to respect his right to really not want to look at pictures of dogs for fun, or to be able to say ‘No’ if he’s terrified. Eli hates lawnmowers – we don’t make him stand around next to men mowing lawns.

We are treading a narrow and tricky path between pushing Sam’s comfort zone a bit, while respecting his right to move at his own pace. Ultimately, he should be able to express a dislike of dogs, or anything else, and have that view acknowledged. We would just like him to be able to express his dislikes like he does with other things he hates – by whinging, or sticking out his bottom lip, or loudly protesting – rather than puking all over us all.

* We went to the Cotswold Farm Park which was brilliant – easily accessible for wheelchairs, loads for both boys to do, and Sam particularly loved their maze. Unlike the Model Village in Bourton-on-the-Water which lets in those ‘confined’ to wheelchairs for free because they can’t actually get to any of the model village. Which would be sort of okay if they didn’t charge the rest of your family full price and be insulting and grumpy about the whole thing.

Listening to the lungs

IMG_0246

When you are a parent, there are times when you really can’t be sure you’re doing it right. Much like when you thought all grown-ups knew what they were doing and then got to your twenties and realised the world is full of clueless adults, it turns out a lot of parents are winging it with varying levels of success.

Sometimes I have days like this Saturday, when my three year old found out that the ramps installed to enable his disabled brother to get out to the garden also mean he can drive his outdoor toy car straight up and into the kitchen. Then he repeatedly barged my legs, and on the back of a major toileting incident and various other small but irksome exchanges, I found myself pushing the car (with him in it) back out to the garden, with a noticeable lack of good humour. I then ignored him for a few minutes, so when my husband returned from the shops he was a little alarmed to find Eli was standing at the back door screaming, wearing nothing but a pair of pants. At this point I wondered if I had any idea what I was doing.

IMG_0365

I have many moments along this theme – wondering or worrying whether Sam’s doing enough or too much therapy, whether the boys watch too much TV, feeling bad that we haven’t taken them swimming for weeks, or that we’ve made them move house for the second time in two years, and they’ll have to move at least twice more in the next two years, etc, etc.

But then some days I think to myself… Jess, you have this job totally nailed!

Sam had a heavy cold last week, caught from me. He was snotty and a bit feverish but not awfully ill. He started to have a bit of a cough, and on Wednesday night I wasn’t very happy with it. But his temperature wasn’t that high, and he wasn’t that miserable. We put him to bed as usual, and about 10 minutes later he was sick. Which wasn’t ideal, and is relatively rare these days, but it’s not extraordinary. Then he slept well that night, which was very unusual, and by this point my metaphorical ears were pricked.

Sam hasn’t had a chest infection for over two years, but previously he’s had a lot. And I remember the sound of them.

First thing on Thursday morning he still had a bit of a cough, so I phoned the GP. We can normally get an appointment on the same day but they were short of doctors so the best they could offer was going to the surgery and waiting an unspecified length of time to see someone. Nothing sounds less fun than taking a slightly ill boy with a low boredom threshold to sit in a room full of sick people for hours so I dithered a bit. But then Sam coughed and I decided we’d go.

As we arrived, I could hear the administrative staff behind the desk talking about how few doctors there were, and that there were too many people waiting without appointments. Then the doctor came and queried whether all of these waiting people really needed to be seen today.

I was feeling a bit sheepish – on the face of it, yes Sam is disabled and complicated, but his symptoms weren’t that stark: a cough that his mother thinks sounds wrong, a little bit of a fever, some snot, and a really good night’s sleep.

We waited less than an hour before being called in to the doctor’s room. I set out my concerns, and she took his temperature (a bit high) and listened to his chest: crackles on the right! Needs a course of antibiotics!

I mean obviously I’d prefer he wasn’t ill. But the feeling of satisfaction at being proved right was a parenting high point. I know this boy. I know his lungs. And some days I am ALL OVER this mothering (*smug face).

(Eli might not agree.)

‘I feel sick’

IMG_7851

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.