Wednesday, 8 March 2017

Planning a trip with a disabled young adult.

Our eldest child is in care in the UK, we now live in Dubai. We are getting older, she is getting harder to deal with.

I visit the UK several times a year and take her for days out or a few hours, rather than visit her in her home where she just does her own thing and I'm left staring at the walls or chatting to the care staff. I do this at the beginning, several times in the middle of my stay and at the end of my trip, depending on the length of my stay, anything between a 1-8 weeks.

Going out involves packing and carrying an adult sized baby bag, making sure I've hired a car big enough for her wheel chair, choosing somewhere to go based on the weather and her toilet changing needs, somewhere that sells food and drink and somewhere where I can hopefully get a bit of help. I try to coincide her visits with taking one of the other 4 kids with me and although they come with me willingly and do more to help their sister than I could possibly expect from them, it adds to the length of my day by collecting and dropping them off. I'm worn out at the end of the day.

We usually end up spending our days out visiting different supermarkets, we've been doing this since 2011.

Over the past 6 years we've not had a base where we can take her and usually her father and I make separate visits to the UK. She doesn't sit well in a car and has crawled out her seat belt before so longer trips to visit the inlays or take her back to my parents house for the day/afternoon are out of the question when you have to be driver, carer and support all rolled into one whilst driving up and down the M5.

Then there is getting her in and out the car, changing her nappies in the bathroom, dragging the supermarket trolley around with her pushing in the opposite direction. Trying to manage a tray with food, a queue and just having to clear the table and make sure nothing in front or behind her is in her reach is mentally exhausting, she just never stops.

Visiting family and friends, even with support is hard work, she has a habit of grabbing peoples hair, she spits excessively and will wipe her hands on you, your walls and soft furnishings, she grabs things, would swipe ornaments off a shelf and has a habit of throwing things and hitting you with objects in her hand. It's not fair on other people whether they are family or not.

We've bought an apartment now, but it's 40 miles from where she lives, it's also on the second floor, due to us leaving it empty most of the year and although she can climb steps with support, I can't then leave her unsupervised in the apartment while I run up and down the stairs to get her changing and over night bag.

My family live near by so I can arrange for them to meet me there and either a) supervise her for very short periods of time or b) they can do the running back and forth to get her bags out the car.

Then there is getting her in and out the bath, getting her used to sleeping in a new room, getting some sleep myself.

The town we will be staying in is old, with narrow streets and restricted access, with steep steps into  a lot shops as the pavements are too narrow to install ramps and while people will help, I just get fed up and tired of explaining and then when we get in the shop, despite strapping her in her wheel chair she has quite an extended reach and you need eyes in the back of your head.

So on my next trip, I'll just stick with days out to the local supermarkets and wait for Peter to join me over Easter, so we can have here at home for a night or two for the first time in 6 years, just because we want to.


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