Whenever we go on a family holiday I find myself making the same cliche joke up on return. “I need a holiday after that holiday!”
After being confined mainly to our house for the duration of the coronavirus pandemic, we were very excited when we chanced upon an advert for a 3 night trip to Fife, Scotland in a fully accessible accommodation.
I am a bit of a homebird. I love being home. I don’t really get bored. There is always something to do, and when there isn’t… and life permits… I like to sit in complete silence and enjoy doing absolutely nothing. You could call stabilizing my own breathing a hobby as I tend to rush around with a tight anxious chest all day and intermittently let out a deep breath when I finally remember to catch up with myself. Or more recently, I haven’t even had energy to do that… I do as little as possible but then can’t sleep for guilt at the time I wasted.
To me home doesn’t just represent comfort - it represents accessibility. The house has all of the equipment we need. As we are learning the hard way; much of the world is not like that, at least not to the extent it could and should be. So venturing out brings both excitement but also anxiety for us.
Prizing ourselves out of our home comfort zone was to bring some new scenery and landscapes to explore. Life very often feels like groundhog day, or like we are just going through the motions to make it to bed time. I don’t want to look back on Amy’s childhood and think we squandered it doing nothing fun or meaningful.
This was the perfect opportunity - the place had a shower trolley/wet room, hosts, a profile bed… even clever touches such as a breakfast bar at the correct height for a wheelchair user. The best thing was that there was space! So much space. Our house can sometimes feel like a game of tetris… moving the pieces around so it all fits in. one piece of equipment must be moved that another can go there, it’s a constant process. Here.. you wouldn’t notice our 4 big suitcases, dog crate, medical equipment, wheelchair, travel bed, tube feeding paraphernalia and so on. It was so refreshing. This in itself feels like a holiday.. Literal room to breathe.
Setting up the travel bed had us in an exhausted sweaty mess within an hour of arrival… the venue had a profile bed with a pressure mattress, but the sides aren’t high enough for Amy and sadly she has a lot of uncontrolled movement and no danger awareness. We only had room in the van for one physio mat, but it’s essential as it helps her stretch out nicely after being in her wheelchair for many hours. You would laugh if you had seen how crammed our van was with stuff. But everything there was essential. Really we could do with a coach.
I have mentioned before that Amy has quite challenging behaviour and sensory needs. Her mood can alter at the drop of a hat. We aren’t sure why. She’s a very clever little girl but we are still working on communication to try and lessen her frustration. It can however be a bit demoralising having someone with you crying and shouting constantly in spite of your best efforts.
We have to remind ourselves that we are doing our best and that's all we can do.
It doesn't mean that we are failing her, it doesn't mean that she dislikes us (I often take it personally.) Sometimes the crying is easily fixed with the right sing song and she will go from distraught to laughing. Other times I fear seizures, reflux, muscle pain and a whole other multitude of things no 6 year old should have to endure.
The pandemic has had a dramatic effect on all of us. Amy’s sleep pattern has worsened to the point of being up for the day at 2am screaming, and because we currently have no overnight respite, catching up on sleep is near impossible. If the wrong song comes on, this currently triggers up to an hour of screaming from Amy where we are unable to console her. So i knew from the get go that this holiday was really just going to be our normal life but in a different setting.
Knowing this makes me quite upset sometimes. I remember as a child going on holiday and having a lot of independence to go swimming, or exploring, and making sandcastles and so on. Notably one of my favourite parts of anything is food, and Amy cannot eat. I find myself trying to overcompensate for this and trying desperately to seek out ways to bring joy into her life. She deserves everything, but the world cannot always provide that. It hurts knowing that so many of my best childhood memories can’t be recreated with Amy. I have to remind myself that she probably doesn’t realise that, and is happy to enjoy life her way.
The accessibility and inclusion we found in Scotland was incredible.
We went to three parks, all of which had a wheelchair accessible roundabout. Amy’s face lights up when she sees them. She knows “I can do this” and “this is going to make my tummy get butterflies and make me laugh”. One park in particular had a wheelchair swing. We had only chanced upon this park and had done no prior research. It reminded me of when someone is lost in a desert and sees a mirage of the water they are so desperate to drink. Could it be? Had someone considered families like ours and gone to this effort and expense to make us happy?
It was accessed via a radar key, and you even couldn’t push the swing without unlocking it - which means it’s less likely to be misused or vandalised. It had a box you unlock with all the locks and fastenings to secure the chair down. The whole time my heart was racing and I felt quite emotional that we had gone to the park and been able to use not one but TWO things there!
Soon after the visit I wrote to our local council with pictures and a description asking if we could have similar facilities available here. I also wrote to Fife council to congratulate and thank them.
I was amazed throughout the holiday that somewhere with steep hills and cliff edges could be so easily traveled round by wheelchair. Much thought had gone into having flat smooth paths. I was impressed many times at how we were able to get to castles, windmills, and all sorts of beautiful historic sites. Sadly we weren’t able to rent the beach wheelchair but we will definitely go back again and do that. I wish more places had those paths that lead all the way to the sea so that Amy could see it without being lifted.
It’s strange how many highs and lows you can feel in one day.
I felt very tired most of the time from lack of sleep and tending to Amy’s various meltdowns. But I felt a lot of pride and excitement for those moments where she connected with us and the world and showed such joy at life.
Lately my hands have been getting sore from clenching the wheelchair handles, and my back is a bit sore from pushing her up various slopes. I am trying to push these woes aside as unfortunately this is part and parcel of being Amy’s mum. I need to get stronger and work on my own physical and mental health so that we can continue to make precious memories together and also fight for the inclusion and accessibility that isn’t around in our town still.