All that really matters

When I write this blog, I hope that it is read by people who may find themselves saying things to me like ‘I could never do what you do’, or ‘I’m so sorry’ with their head tilted slightly to the side and a tone of pity in their voice. When I tell people I have a beautiful, thriving son who is eight years old and is also disabled, I don’t want people to react with pity or sadness because it is unnecessary and ignorant. And with those people in mind I write blog posts about triking! And fun playschemes! And ziplining! I write about why we are lucky, and why wheelchairs are enabling (not disabling). I have a feeling that negative portrayals about disability are so ubiquitous that I’ll try and write about disabled children who are well, having fun, happy.

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Then suddenly I realised that maybe I have become some version of all those irritating people on social media who have apparently perfect lives, whose children are never dirty and always engaged in constructive activities. Perhaps I am one of the people that I would unfollow because there’s only so many pictures of Mediterranean holidays and accomplished crafting in tidy houses I can take before feeling a bit shit that my kids are all currently watching Kids YouTube in mismatched clothes surrounded by junk.

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What ends up on the internet isn’t an accurate portrayal of everything going on in a person’s life, and I don’t believe it has to be. But as a species we inevitably compare ourselves to others and I would hate other parents of disabled children to think they are doing badly because they are looking at me with my family and our apparently nonstop wholesome adventures.

All of the adventures we do have are facilitated by me having an enthusiastic husband, a hugely supportive extended family, and a lot of paid help. For all my hatred of the pity faces, and even with all these people helping us, there are aspects of our lives which are tough. We have too many children with differing needs. Sam has specific needs and access requirements and that means we can’t do everything we would like to as a family. Our family is like an oil tanker that takes a long time to get going and has a huge turning circle. We need to be shovelling coal daily (though presumably that isn’t how oil tankers are fuelled these days) to keep the show on the road. The days that have been successes have been carefully organised and James and I will have been put considerable work in for the kids (and us!) to get fun out.

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The majority of days aren’t special days, they are bog standard normal days when the boys are at school, then at home and everyone needs to be fed and cleaned. We have just had two months of not having anyone to help me in the daytime on weekdays and I have to set my expectations accordingly. A good afternoon/evening is one in which I haven’t shouted that much, when the kids haven’t watched TV from the moment they got in the house to the moment they go to bed, when everyone has had some of the food they should and not too much of the food they shouldn’t.

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Some weekends we are taking Sam to a planetarium or an outdoor education centre, other weekends when we have no help and we are tired or have things to do, Sam might watch hours of TV. He’s happy, and he’s learning almost nothing from the second hour of Strictly Come Dancing but we’re enjoying a family chuckle at Bruno. We can go a whole weekend with no physio, ignoring the standing frame, forgetting to practice with the electric wheelchair, not having time to get the trike out, and Sam watching up to four films.

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I’m not particularly proud of those weekends, but I really resent the idea that parents of disabled children are held to a higher standard (by professionals, by themselves) because they have to work that much harder to support their child’s development. And I hate the idea (which I am 100% guilty of) that we look at other parents and feel crap because we’re not teaching our kids phonics, stretching their hamstrings and working on their fine motor skills all the time, every day.

It should be enough to spend time just keeping our kids alive and happy, enjoying their company, or getting done the stuff (and man, there is always a mountain of stuff) that we need to. The bureaucratic load of having a disabled child is tedious but ever present. It takes extra time to feed, bathe and change a child who can’t help with these things. There are extra pressures, more appointments, difficult conversations with professionals. All of this takes physical and mental energy. There is little benefit to a child of doing all the physio someone recommended but having a mother who is losing her mind.

Sometimes you have to just batten down the hatches, recognise your capacity at that point, and accept that you’re doing your best right now. If someone asks how Sam is and I can reply ‘fine’, then we’re doing well. So your kid hasn’t done their exercises, but you’ll probably never know if they would have made any difference, and meanwhile they are clean, fed, apparently happy (or not actively unhappy) and, most of all, loved. You might even have read them a book. That’s all that really matters.

 

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A House for Sam

We are adapting our house to make sure it works for Sam. We have moved out and have so far paid builders thousands of pounds to rip things apart and make a perfectly good house look like it’s been hit by a natural disaster.

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(Photo – what will be the lift, lift lobby and therapy/play room)

It’s a big, disruptive, expensive construction project of the kind we (hopefully) will only do once. We plan to move back in to the house next year and then never move again. Or at least not until the house doesn’t suit Sam any more, which we hope won’t be for an extremely long time.

This kind of project throws up a host of issues on every level from extremely detailed (what kind of sockets?) to big questions about the way we want to live our lives. Decisions about designing your family house go to the core of who you are and how you live (or want to live). I’m an architect and these are the issues that first drew me to architecture: how do buildings reflect who we are as people, what we care about and what we do day-to-day. This stuff is deeply personal and others in the same situation would make different decisions. We are extremely privileged to be in a position to be able to craft our house so carefully.

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(Photo – hole for the lift in what was the kitchen)

Most buildings in the world are inaccessible to Sam but we can create a little island of utopian level access, where he can go (almost) everywhere and everything is designed to make all of our lives as easy as possible.

But how do you adapt a house for a disabled person who is currently six years old but will hopefully still be living there when they are twenty six?

How to you make a house perfect for the disabled child, whilst not compromising the personality of the property and making it a house for our whole family?

Should we compromise on the kind of house we want to live in to make it disability-friendly? Is it possible to have have a house that works perfectly for a wheelchair user but that isn’t the first thing you notice?

There are two principles that we have had from the beginning: the house needs to feel like a family house, specifically OUR family house with all of the characteristics it would have had if Sam wasn’t disabled; and the house needs to work perfectly for Sam and enable social connections for him – between family and with visitors. We are currently hyper-aware of some of the downsides of being in a house that hasn’t been specifically adapted. It’s getting harder to give Sam a bath, and even small changes in level get harder to get his wheelchair over as he gets heavier. Because it’s less easy to carry him, Sam rarely comes upstairs to our bedroom or to Eli’s room.

If you go to as many adapted or accessible properties as I do, you’ll realise that ‘experts’ are often expert in how to make a house work for a wheelchair user and that isn’t the same thing as making a home for all of the members of the family in it. The cheapest and easiest way to adapt houses is often to tack an extension on to the back. This makes lots of sense, except it often involves siblings and parents sleeping upstairs and the disabled child never going to their bedrooms. If, like Sam, the child has carers then you can end up with unofficial zones within the house where the disabled person and carers spend most time in particular parts of the house and there’s not enough crossover with other members of the family.

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(Photo – widened doorway)

Sam will be at the centre of our house, literally. There are three floors, and his bedroom will remain on the first floor. We will all pop in and out, or wander past, his room all the time. It also means we, as parents, remain totally involved in every aspect of his life. Even if there are days when carers are spending most time with him, we are there in the background interfering and suggesting, as is the prerogative of a parent. This will be facilitated by a through-floor lift that will take Sam up to his bedroom, but also further up to our bedroom and Eli and Stella’s.

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(Photo – Sam’s bedroom)

Downstairs we will have normal reception rooms (one for family-only since we so often have carers in our house now) with wide doorways, a lift lobby big enough to turn a massive wheelchair and level (or near level) floor finishes. Not a single step on the ground floor. One should not underestimate what a feat this will be involving much chat about thresholds, demolishing a conservatory and building a new dining room. We will have a patio on the same level as the kitchen and dining room, which will ramp down to the garden. Sam will use the same doors as all of us and it should be a mere matter of pushing him where he wants to go, without bumping over ledges and going through alternative doors. The rooms are big enough that when Sam is in even bigger wheelchairs we will still be able to get round him. There will be enough room around the dining table that he should be able to sit anywhere, not just in the one spot that means we can still walk past.

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(Photos – demolished conservatory, building new dining room)

The house will have pieces of specialist equipment, at vast expense, though actually these aren’t as numerous as I anticipated. You don’t need that much stuff if the whole design of the house is built around the idea of a wheelchair being able to get everywhere. The lift is a massive thing (physically and in expense) but a simple idea. There will be track hoists mounted on the ceilings of four rooms (which will mean Sam can be lifted in a sling between wheelchair and bed, for example, rather than being lifted by us). There will be changing facilities on two floors. And there will be a bath.

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(Photo – what will be Sam’s bathroom)

The bath has the subject of much conversation. It is, apparently, easier to shower people in wheelchairs. Easier for carers that is. But we generally operate on the basis of what Sam likes and needs, rather than what suits others. The boy loves baths, so we need a bath. And if that’s a whacking great big thing that goes up and down, needs the floor to be strengthened and a new heating system to produce sufficient hot water, so be it. It will be in a bathroom with two doors – one straight in to Sam’s room so he can go bath-to-bed in one carer-friendly straight line, and one on to the landing that leads to his brothers and sisters bedroom. Because the bath is essentially just a really expensive bath and so it will be the bathroom for all the kids.

We are lucky to be able to ask ourselves how we want our family to work, and therefore how we want our house to facilitate that, and to have the opportunity to alter the fabric of the building accordingly. It is all very exciting but it feels like a huge responsibility – like all construction projects, we’ll only get to do this once and we need to get it right.

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(Photo – looking up three stories of the house through the hole made for the lift)

A friend of mine joked that once we have adapted our houses our kids will be able to visit each other, if not anywhere else. It’s not really a joke – as Sam gets bigger and his wheelchair gets heavier it is becoming harder for us to go to other people’s houses with him and we can’t visit places that don’t have disabled access. So the political becomes personal – we want to compensate for the world remaining inaccessible by making our house a truly welcoming place for Sam and his friends.

 

 

 

Having a break – the guilt of ‘respite’

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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.

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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.