Last September I booked a holiday in Devon. I was so excited, we had not been away since 2013, mostly because of Star’s operations and hospital appointments. It had been a tough couple of years and the thought of a few days away was just what I needed.
I picked a holiday camp in Devon as we had been there before six years ago when I was pregnant with The Little Man. We had such a wonderful time there and I have always wanted to return. I chose half term because our summer holidays are already way too expensive with four of my five children having birthdays. Also, with Star’s autism it’s generally better to avoid the most busiest of holiday seasons.
Before Christmas the holiday was always there in my mind. I was really like a little kid being so excited and looking forward to it. When my girls asked for ‘nice dreams’ at bed time I would talk to them about the holiday and all the exciting things we would be doing.
Shortly after Christmas, Transverse Myelitis struck and I was paralysed. At first I didn’t worry too much about the holiday, I had read that recovery could take two to eight weeks, our holiday was five months away I had plenty of time. I set myself goal posts for getting well again but I soon discovered that it’s not so clear cut. Transverse Myelitis is a very rare condition and although a third of people who get it can recover in two to eight weeks, another third can have longer lasting problems, and the final third never recover. It became apparent that as the months went by that I was in the second third. I can’t say I have no recovery, because I have made a lot of improvement since those early days. I can walk, it’s just so painful and tiring to do so I can’t walk very far.
So, as the holiday approached I decided to give up the goal posts and start making plans about having the holiday while being disabled. The first step was changing the holiday camp. The Devon camp was very hilly and it was not wheelchair friendly. So I made a call and we were changed to the flattest camp available which happened to be Blackpool. I was happy that we could still have our holiday but so sad that we couldn’t go back to the place where we made all those happy memories six years ago.
The next step was travelling there. As the only driver in the family we had to make other arrangements and booked a train journey. I also had to book passenger assistance for my wheelchair which was surprisingly easy to do and took away a lot of my fears of travelling in my chair. (I’m not the best of travellers generally, being in a wheelchair was terrifying me.)
I was still looking forward to going away but now my holiday was not so exciting because of my limited mobility and the change of holiday park. I had to make the best of it for my kid’s sake, they deserved a break as much as me.
The journey was not as bad as I expected. With travel assist I was met at the station and directed to the correct coach. As this was my first time, I did not realise that they were also supposed to make sure I was sitting in the correct place in the coach which this assistant didn’t and I was in the wrong place while a woman with a pushchair (and the child in a seat next to her) was taking up my place, and the seats of my companions. When the ticket inspector came around an hour into the journey he told the woman she HAD to move as she was taking my place and she was not happy about it and refused to move. Fortunately, her stop was next and she was off the train. I got into my correct place and my family joined me.
The next train was very busy but it was only a short journey so I was split from my family again, but luckily I was in the correct place for wheelchairs. And the woman who had to move her buggy did so without being asked, without as much as a sigh.
Then we arrived at our destination and our holiday began.
The first day we spent on camp and I soon discovered that people can be ignorant of wheelchair users. Sometimes I had to ask repeatedly for people to get out of my way so I could get past, and I lost count of the times some kind person (or one of my family members) opened a door for me only to find other, able bodied, people rushing through as though they had to get past me as I would be in the way. Towards the end of the week I stopped worrying about the ankles of people who deliberately got in my way.
We only went into the onsite club once. I knew it was going to be difficult, it was always packed. On the way in people were really nice and we were helped to a table where we could sit. The kids were fine at first but then Star decided it was too loud, too hot, too crowded and she couldn’t take any more so we had to make our way out. My partner let me go ahead, then ranted at me for going the wrong way. It was a nightmare navigating our way out and I am much lower down than normal, I had no idea where I was going. I got upset at him treating me like a child and the whole evening was a disaster, so we didn’t attempt the club again.
On the second day we had planned to go to the Circus in Blackpool town centre. It was a bus ride away, we had already checked the time of the buses, the route we needed and whether they were wheelchair friendly. We told the kids were we were going and they were all excited about the circus.
Then on the morning Star decided she didn’t want to go and got really upset. I talked to her and discovered that we’d talked a lot about how we were going to get there but had not mentioned how we were getting back. So, I told her that we could get the bus back, from a stop right near the circus and that if by any chance we missed the last bus we could always get a taxi. Then she was happy to go.
We had a great time at the circus all the kids really loved it and I’ll be writing about that in another post. Afterwards the kids wanted to go on the beach. It was such a lovely sunny afternoon we couldn’t resist. When we got to the promenade Star kept asking if she could take off her shoes and socks and go in the water. I told her, no, wait until I am ready. It was a bit of a pain getting out of my wheelchair and finding my way to the top of the steps. I decided that I couldn’t make it down so I sat at the top. The whole time Star kept asking about her shoes and socks. I said she could go in the water but not to take off her shoes and socks just yet. A minute later, I looked down and there she was, knee deep in water with her shoes and socks still on! What I had meant was that I didn’t want them to go into the water until their Daddy had finished looking after me and was able to be with them. She took it literally that I didn’t want her to take her shoes and socks off! Being an autism mum I should really have the hang of this by now.
We did have a lovely holiday, despite my frustrations of being wheelchair bound and my failures at being an autism mum. I was ready to come home though, I was so fed up of not being respected because I was in a wheelchair. I thought people would be understanding, and a lot were, and they were kind and helpful, but an awful lot of people were just rude and impatient. I could see that my partner was finding it all difficult too and that makes me sad. My one saving grace was getting an electric wheelchair (an absolute bargain Ebay find) before we went. He would have been worn out completely if he had to push me everywhere.
The journey home was much better than the journey there. At Blackpool we were allowed on the train before the other passengers which was great because the train ended up being really packed. Then at our changeover we were upgraded to First Class for free, so we even had a meal and drinks provided which really pleased the kids.
This was my first break as a wheelchair user and although it was difficult at times it’s not really put me off. Next week my other half is starting driving lessons which should make life easier (providing he can pass his test.) I will keep on trying hard to improve my mobility and I’m not going to think about how hard things are at the moment, but look forward to when we can enjoy things to the full again.
Despite everything it sounds like you had a great time….
hehehe! Good for you for not worrying about the people who deliberately got in your way….If they don't have respect for you and your wheelchair they deserve a bump to their ankles.
Good luck to your hubby with his driving lessons…
Anne you are doing amazingly well – never forget you've had a huge lifestyle change, that many others wouldn't cope with half as well. You have a brilliant attitude to it all and I'm glad you had a lovely holiday in my hometown with great weather! Ooops re the socks and shoes, funny how they can be so literal isn't it?! x
Thank you Kim, I can't wait until my other half is driving now…although it's my biggest dream to be able to drive myself again, even if I have to do it with hand controls.
I'm really sorry there were some rude people who got impatient about you being in a wheelchair and I'm shocked at the woman on the train refusing to move!! But I'm glad you had a good time overall and the part about the shoes and socks made me laugh. I don't think you 'failed' as an autism mum; I have done similar without thinking about the exact language I'm using.
I'm so glad it hasn't put you off. You deserve a break every now and again! You definitely didn't fail as an autism mum, sometimes it is easy to forget how literal some directions can be taken! Thank you for joining me on #spectrumsunday. Hope to 'see' you again this week xx