Having a break – the guilt of ‘respite’

img_6399

img_6401

For any parent of a disabled child, the subject of respite is a bit fraught. Often because accessing any is difficult, and will have involved tricky conversations/numerous phone calls with various professionals. Partly because the logistics of organising it and physically getting the child there with everything they require are onerous.

But mainly because it’s a double-edged sword. On the one hand we would really like a break. On the other hand we feel guilty for wanting a break. We are on the knife-edge of knowing that the respite place we have carefully considered is able to take care of our child, but also thinking that no-one is going to be able to take care of them properly.

Almost two years after we were first referred for respite provision, Sam has just had his first overnight stay without us. The somewhat casual timescale allowed us time to get used to the idea, due mainly to the first hospice refusing to feed Sam pureed food so us (and yes, I mean us, social services having still not managed to assess Sam) having to find a different place. We agreed to the new referral, then went for a visit, then spent a couple of hours going through aspects of Sam’s care plan, and then stayed there with him for a weekend, then the time came for him to stay there himself.

It’s a nice place. It’s run by nurses, so feels quite medical, but that means they are totally on top of medication and not at all intimidated by disability. It’s purpose-built building with lots of space, bedrooms opening on to gardens, a huge room for craft, fun and reading. Loads of books and friendly people floating around doing interesting things. There are other kids and their siblings, volunteers making bugs and Gruffalos.

To give some context, I am generally quite relaxed about being separated from my children. We are lucky enough to have lots of family in London who are willing to look after our kids. For the first three years or so of Sam’s life he spent one night a week with my mum, he’s spent loads of weekend with his other grandparents. Eli has had ‘sleepovers’ of up to five days with grandparents and my sister and her partner. Stella is somewhat testing the model by being more dedicated to breastfeeding than I would ideally like, but at some point we’ll manage to offload her too. But of course, these people are all in our family. And as Sam has got longer and heavier, and the kit he needs has got larger, it’s got trickier for him to stay anywhere that isn’t our home.

We have therefore shifted the model so James and I (perhaps with a child or two) can go away, leaving Sam in our house with various permutations of carers and family. We realise how fortunate we are to be able to do this.

What the respite hospice offers is an opportunity for us to stay at home and for Sam to stay elsewhere, allowing us to be one child down (which with three of them is a welcome release of intensity), spend more time with the other two, and perhaps get some of the stuff done that we have been planning to do for months but never have time to (e.g. unpack boxes from our house move 2.5 months ago, or actually tidy up our tip of a house). I am keen on this idea.

Except that it also involves Sam staying somewhere else without us or any other family, which makes me feel guilty and nervous.

On the morning of Sam’s solo stay we packed up everything he needed (a full car of stuff) and James and a carer set off. I used Stella as a convenient excuse to not be the one to do the drop off. I called the hospice to say they were on the way, and it transpired that there had been some administrative confusion that meant they weren’t expecting Sam until that afternoon. The idea that Sam was about to arrive for his first stay without us, and they weren’t expecting him, that they weren’t all standing around anticipating the arrival of Sam, made me feel so sad and unsure. Should I call James and get them to turn back? The journey can take up to an hour so that would mean spending most of the day faffing around which would be the exact opposite of respite. As I burst into tears, the nurse said no, they would make it work.

When James got there it was actually okay, and Sam seemed alright, and by the time James and our carer left he was happily entertained and content. We spent the weekend with Eli and Stella, and realised that looking after two kids is much easier that looking after three but still pretty relentless which was quite a helpful distraction. Eli burst into tears on three separate occasions because Sam wasn’t there.

img_6387

Then we went out for supper to celebrate our 11th wedding anniversary, and appreciated that organising babysitting for two non-disabled kids is really straightforward. We ate delicious food, drank too many drinks, faded far too early, and came home to Stella screaming in the babysitters’ face. We had called the hospice and they said Sam was okay.

The following day we woke up to a house that only had our kids in it and us. Sam sleeps badly, and we’re lucky to have nightcarers who get up with him during the night and help us in the morning. We also have day carers almost every day which makes our family life possible. But the flipside of having a lot of help is that there is almost always someone in our house. It is a luxury to wake up and potter around in a dressing gown with only Weetabix for kids to think about.

We went for lunch, where we were just about able to have actual conversations with other adults, at tables with benches that wouldn’t accommodate wheelchairs easily. I had fun. But we were with family, and I felt bad that Sam wasn’t there. Even though we probably wouldn’t have gone for the lunch at all if Sam had been, partly because of the wheelchair, partly because trying to go for lunch with all three of our kids and actually expecting to talk to anyone is an absolutely ridiculous idea. We called again and Sam was apparently happy.

When James went to collect Sam that afternoon everything was okay. He seemed relaxed. There hadn’t been any disasters. When Sam got back home and saw me, Eli and Stella he was totally thrilled. Eli was so happy to have Sam back, equilibrium had been restored. Eli was even content to not be able to watch his TV programmes because Sam doesn’t like them.

It was, by all measures, a success. Sam did fun stuff that he wouldn’t have done at home. Eli and Stella got more of our attention, James and I had a bit of a break (it’s all relative).

So why do I feel so guilty about it? It reminds me a bit of Sam’s first week at nursery, when he was almost one. I dropped him off and called James on the way out in tears, saying I would never be able to go back to work because we couldn’t possibly leave Sam at nursery… Am I just further along the continuum of internal conflict that starts at angsting about whether kids should go to nursery or have a nanny (or any childcare at all), and ends at going away for a week with no kids? Or am I just trying to justify something that’s not fair on Sam?

I don’t think there’s a right answer, but for now I’m shattered and have a to-do list that stretches over two A4 pages and Sam was happy during this last stay, so we’ll crack on (as Eli would say) and hope we’re doing the right thing.

Or at least not doing the wrong thing.

 

 

 

 

Advertisements

Feeding Sam food

Sam can’t eat or drink. He tried really hard to learn and we all spent a lot of time on it for 18 months but by age two he really wasn’t enjoying it. He got annoyed at the sight of a spoon and the amount he was eating was tailing off.

Drinking had been a problem right from the beginning. His dysphagia (difficulty swallowing) meant he found sucking from a bottle really difficult – if the automatic reflex to co-ordinate sucking, swallowing and breathing is messed up, it is incredibly hard to learn. The human anatomy at the back of the throat is an awful design and Sam just couldn’t get the hang of it. We spent hours trying to feed him by bottle, and later by cup but it was never enough and he was discharged from hospital with a nasogastric tube which we put milk through (the tube went up through his nose and then down in to his tummy).

At just over four months we started weaning in the hope that eating thicker textures would be easier than drinking and be more likely to stay down in his tummy. This was also hard work for Sam and he did incredibly well given the difficulties but he never got close to eating enough food to grow. Meanwhile he had constant and painful gastro-oesophageal reflux.

IMG_0509

So at six months old Sam had a PEG inserted in to his tummy, allowing us to give milk through a tube straight in to his stomach. When he was two this was changed to a button.

If you start out from the position that you have a small child and they have to have a tube inserted in to their tummy, which means even when you have given them a bath and they are lying on a towel all perfect and clean they will still have a tube dangling from their abdomen, this might be upsetting. Which it was in some ways. But if you start from the position that your child is unable to feed and you have spent six months putting milk through a tube in their nose which everyone can see, and keeps falling off/out, and their cheek under the sticky plaster is red raw, and when the tube needs replacing you have to get someone (sometimes your poor neighbour) to bind your screaming child in a towel and hold them down while you push a tube up their nose and down their throat, and every time you feed them you have to do a pH test to check the tube is still in their tummy and you aren’t about to pour milk in to their lungs… if you find yourself in that position, then a permanent tube in their tummy seems like a great idea.

James and I have fond memories of a holiday in Scotland when Sam was 18 months old when he could eat half a yoghurt pot for lunch. That was the highpoint of his eating and once we returned to London the combination of physical difficulty and chronic reflux meant he was less and less keen to eat food. To be honest, we were all weary. There are only so many hours you can spend mixing various mashed and pureed foods with baby rice and spooning them into an unwilling child before you feel there are better ways to spend time. Eventually we got to the point of not offering Sam oral food at all.

That gastrostomy tube is a lifeline – it is the reason that Sam is thriving and growing. It represents a choice to spend time reading books and enjoying ourselves rather than trying for hours to eat enough food and drink enough fluid and the inevitable chest infections that would result.

So for the first three years of his life, Sam was largely fed milk – various hypoallergenic, cows-milk-free and enhanced formulas that began to arrive in big boxes every month. As far as dieticians and general medical opinion is concerned, once a child has a tube they are then fed special milk. So on the one hand you have a typical four year old who eats some cereal, a banana, some chicken and maybe a cake. On the other hand you have a tube-fed four year old who is supposed to have 240ml Nutrini Energy milk for breakfast, 240ml Nutrini Energy milk for lunch and 240ml Nutrini Energy milk for supper.

A few years ago I came across ‘blended diet‘ (BD) which essentially means pureeing food with enough liquid to be able to push it through the gastrostomy tube. I am a natural law-abider (the kind of person who feels uncomfortable going in to a pub to use the loo if I haven’t bought a drink, who scrupulously observes any and every queue) and so having found an academic journal article that suggested children had experienced less reflux and eaten more while being fed puree rather than milk, I approached each of our doctors and asked their view before I started. They were generally a bit bemused but didn’t tell me not to. We started putting Ella’s Kitchen baby food pouches through Sam’s gastrostomy tube.

It’s not a complicated idea – we followed principles similar to when you are weaning a baby. We gradually made more complicated purees and replaced quantities of milk for boluses of puree. Our dietician made clear that she could not advocate this type of feeding (she is prevented from doing so by her professional organisation) but was happy to discuss principles with me. She analysed our recipes to see how much protein, carbs etc Sam was getting and suggested supplements.

IMG_8468

Sam is now fed entirely puree. Instead of being pumped full of high calorie milk with a 12-month shelf life he is fed a bespoke recipe of roast chicken, homemade chicken stock, tahini and avocado whizzed up in a high-speed, super-powered (obscenely expensive) blender. Since we have been doing this he vomits less, has fewer reflux symptoms and has been putting on weight (albeit slowly, but that’s always been the case). We add calorie and vitamin supplements to the blends. Doctors comment on how well he looks and how sensible an idea this is.

Through this process, I have rediscovered some of the mothering instinct that should be part of feeding your child. There is no pleasure in hooking up milk to a pump, but there is real and tangible satisfaction to be gained in roasting a chicken, making stock and feeding it to your child. There is enormous joy to be found in buying blueberries in the morning and giving them to your child in the afternoon; to seeing your child grow as a result of the food you have made with your hands even if it doesn’t arrive in their tummy via their mouth.

Health professionals (mainly dieticians and nurses) are concerned about this method of feeding – they are apparently worried the tube will get blocked (this has never happened to us), that there are problems with food hygiene (which the rest of the population manages when feeding their kids). They are uncomfortable that you can’t be sure how many calories are in blended foods. These concerns are such that our nearest respite centre refuses to give children puree via gastrostomy, and therefore Sam can’t stay there without us being there to feed him (which with the best will in the world, is not exactly respite).

It seems to me that a model of care where children automatically have long-life milk for every meal is better suited to those analysing calorie requirements and setting up pumps than it is to the recipient. I resent the idea that most parents feed their children what they want, with some public health encouragement to maximise vegetables, but us feeding Sam kale and quinoa rather than milk full of maltodextrin is somehow rogue. The world is upside-down when goody-two-shoes-Jess is seen as a rebel.

We all make parenting decisions for our kids. Our choice is to feed our son actual food.