TOTS 100 - UK Parent Blogs

Friday, 8 May 2015

Holidaying With a Disability

I wanted to share with you all the experience we had with our last short vacation to give you an insight into our lives living with a disabled child.

By way of background, we don't go on holiday very often! At least it seems in comparison to our network of friends and family, we go away a lot less than them. This is due in part to financial constraints but also because it's simply so much work and so stressful it's not worth the effort. We rarely travel abroad and tend to take holidays in the United Kingdom which suits us. We like to drive our own car and we don't care about the weather.

We have to take a lot of equipment when we go away with Enigma B. Even an overnight stay can result in taking the kitchen sink and a partridge in a pear tree. His wheelchair alone takes up half the boot space. We do use a roof box for longer trips but otherwise it's a case of playing boot Tetris with the bags and suitcases.

Last weekend we decided at very short notice (4 days in fact) that we wanted to go away on holiday to celebrate our 12th wedding anniversary. This is usually a celebration that takes place sans enfants but due to the short planning and serious lack of babysitting, we had the (not so) bright idea of going away as a family and celebrating WITH our children. After some internet research, we settled on a little cottage in Devon. An area of England we really love and it would afford us the opportunity to visit some much loved places in the locality. Main things we consider when looking for a cottage: how many floors does it have as B is not safe on stairs, especially in unfamiliar territory: will there be other people, B tends to be noisy, cries at night and generally disruptive when away from home: can we park easily: what are the bedrooms like: can we close the doors: are the windows safe: and of course sleeping. Beds are a huge issue for us. B sleeps in a custom-made single safety bed at home which for the most part allows us to all sleep. Sleeping away from home is an instant nightmare for me. If he cannot sleep safely where we stay then NO-ONE sleeps. We are trying to fund raise for a travel version of the safety bed (it's like a blow up tent with a zip) but whilst that is happening, we have to make do.

Prior to setting off for the trip, I searched high and low for the travel bed guard and couldn't find it anywhere. I wonder if it went missing when we moved last year. That immediately put a spanner in the works. With no time to come up with another plan, we packed late Friday night and set off early Saturday morning. When we arrived at the cottage, we immediately clocked that it was not a separate building but attached by a very thin wall to the main house of the farm. If the alarm bells hadn't been ringing already they were when we opened the door to a roaring open fire! Beautiful yet nerve wrecking for mum-of-a-disabled-child. My brain always goes into overdrive in new places. I'm scanning over the plug sockets, the fires places, trip hazards, poke hazards, sharp objects, steps, gaps, gates, catches. You get the idea! You can't tell from glossy pictures on websites what the reality will be. There are steps down to the kitchen but with a handrail that B seems to be able to navigate safely. However the main stairs to the bedroom are steep and unwieldy. He manages to go up the steps with support but can't come down by himself so he settles on the bum shuffle. Goes against what his Occupational Therapist teaches but at least he's safe and it's only for the weekend. The bedrooms aren't much better. The doors don't close properly and cannot be locked so that pretty much sealed the no sleep tonight deal.

That evening it comes to our attention that no-one (blame me) packed any wet wipes. Thank goodness we have B's incontinence pads though as you can no longer buy nappies that fit him. We are in the middle of nowhere on a farm so I have to improvise and I wash B in the bath. He of course finds this hilarious. After the second poo that night (and another poo in the morning) his third bath was getting tedious for me! Anyway that night we consider there is no point putting B to bed as he won't stay put and won't sleep. I'm seriously regretting not bringing the portable stairgate (why why why?) I think sometimes part of me is in denial and I'm trying to live as normally as possible. Imagine having a small toddler.. ALL... THE... TIME... that's what it's like having a child with Phelan-McDermid Syndrome. He's a baby that's never grown up. I went to bed in the double bedroom and the big kids were in the bunkbed in the same room and B climbed in with me His dad stayed up. I must have drifted off at some point because when I woke and reached out for B he was gone! It was dark and I panicked. Looking around in the dark, B had got in bed with his brother in the lower bunkbed. I couldn't get back to sleep properly then and just drifted in and out. B didn't sleep either and was up and about going backwards and forwards between my bed, Alex's bed and his dad who had gone to sleep in the twin room on the other side of the corridor. Every time B went from room to room I would get a cold chill worrying about whether he might suddenly veer off and fall down the stairwell. Turns out husband was worrying about this too and didn't get any sleep. If I'd thought it about logically we could have taken it in turns and slept in shifts. It had occurred to me to block the door but that's unsafe for different reasons!

I caught myself pondering how on earth have we ended up on our twelfth wedding anniversary sleeping in separate bedrooms! HAHA

The following day was then mostly spent in a tired blur. Our anniversary meal consisted of a romantic dinner for five at Harvester. At least the waiter sang to us! The next night was not much better although B did sleep for longer periods between wandering around the house.

On the morning we left, I went through all the cupboards to check we had packed everything and I found a blimmin stair gate! I can't believe there had been one there in the house all along...

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