Reasons to be Cheerful 9.11.18

Another reason I love this linky is because I think it actually makes me do cheerful things to make sure I have something to report! And I do…

Christmas Songs

I was giving out on Twitter on November 1st when my disabled daughter’s favourite music channel suddenly began playing non stop Christmas hits. But B is thrilled! I had no idea she would like Christmas songs so much, but as my eldest pointed out, they’re mostly upbeat, tuneful and happy, unlike much of the stuff she sees.

Books

After a break of about 6 months, I am finally reading again: I really enjoyed and learned from a book by an autistic blogger I follow: Aspies Hate Christmas by Amanda J Harrington. And now I’ve begun reading the Killing Eve series by Luke Jennings after watching the TV show

Funrun

I took a chance and entered a family fun run in aid of Brian Tumour Ireland with B, planning to use her running buggy without any arranged help. But people are very good and within second of seeing the two of us plus two buggies someone offered to assist, both before and after the run.

Shrek the Musical

Tickets were bought for this to celebrate a joint birthday for B and my friend’s son and we all went together to the theatre. Sadly the evening did not end well for B, but I really enjoyed the chance to dress up and make myself up too.

A New hat

Another bargain from Lidl that’s warm snug and fleece lined. I love it!

New hat

Going to the pub

I brought B with me to a nearby pub for an hour to have dinner out with friends. She felt very grown up, and all was well at home while we were gone.

Exercise

The more demanding the better, as it gives my stressed head a break. This week I went to my zumba class and for a run with my running group in the Phoenix Park: the autumn colours were stunning.

Phoenix Park

Power chair

B got to try out a powered wheelchair with specially adapted switches and she got the hang of ‘Green means Go’ within seconds. She will need a lot more training before she would be approved for a power chair, but it was a great start and I was very proud of her.

Powerchair training

More reasons to be cheerful over at Mummy from the Heart.

R2BC at Mummy from the Heart 

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No place for disabled people

The handles of her wheelchair were touching the door. The footplate was touching the toilet seat. If she could stretch out her arms, she would easily have touched the walls on either side. This was the disabled toilet in our local accident and emergency department.

My daughter wasn’t even the patient. But I am her sole carer, so if I have to go somewhere outside the hours of her day programme, then she usually has to come too.

I had to seize an opportunity and we left the house in a mad rush, just a few random things thrown into bags and hung off the back of the chair. No time for her to use the toilet, I just had to hope that there would be a usable facility available and that we wouldn’t be waiting too long. I *may* have been a bit too optimistic.

Phone calls were supposed to have been made, and we were promised we would be met on arrival. It didn’t happen. And when I saw how many people were waiting to be seen I understood why. There wasn’t an empty chair to be seen. Luckily my daughter was okay – one advantage of bringing your own seat with you everywhere you go.

Once I realised we were in a queue of indeterminate length, my first priority was getting help, and this is where Facebook is a life saver for me. I did text a couple of people first, but they were not available. And yes it was close friends who responded again, but I felt more comfortable putting out a general plea instead of approaching them directly and perhaps making them feel pressurised.

Being stuck in A&E means very little choice of food and drink, especially if you have a disabled daughter who needs a mashed diet. Again my friends were able to bring something suitable for her, and later a bag of (very good) chips for myself and the patient.

But my friends couldn’t really help with B’s toileting needs. I had to sort that out all on my own. I sat on the toilet seat and changed her while she lay half out of her moulded seat – dangerous and uncomfortable for both of us. I’m still amazed I managed it at all.

Later she was crying due to needing to go again, but I was trapped while the patient was getting attention and there was nothing I could do to help her until I got her home.

Really hospitals are no places for severely disabled people, even though the busy staff were friendly and welcoming and made sure we were seen quickly.

This particular hospital is due to get a new Accident and Emergency Department soon, and I really hope that a changing places toilet with a bench and hoist is part of the plan.

My daughter is very healthy right now, but that could change at any time, and she should have the same right to a suitable toilet as everyone else.