Life with a profoundly disabled child is never easy, you find yourself constantly battling with things like trying to get in a lift that is full of fully mobile people who can’t be bothered to use the stairs or asking the council to put in drop curbs so you can go for a walk. There is a never-ending list, and I could go on and on but that’s not what my blog is about. Today I want to bring you the joy we get when things go right; surprisingly, it doesn’t take much to make our day.

We were traveling on our holiday recently and it was getting dark. Our daughter had her button extension in her tummy ready for her medications and feed; she is PEG fed. As I looked over to her, the end, where the syringes get attached to, was glowing. Someone had taken the time to really think about the needs of a person who is gastrostomy fed and had put into the design an illuminous end for ease of location whilst the person is asleep, and you don’t wish to turn on the light to disturb them. This is such a small thing but, in our world, it’s huge and made my day.

On this journey, we also had a fab moment enabled by an A/C inverter for the car. Its only small but made a big difference to our daughter. She had been sitting in the new swivel chair for a considerable amount of time, so we pulled over at a rest spot – Europe is great at providing loads of these – took out the Yawn bed connected it to the inverter and blew up the inflatable bed. She got to lie out for half an hour in the sun and rest up from the hard work of sitting up. Huge win.

Speaking of the swivel seat as I have already discussed in a previous blog, our daughters’ profound disability means even more compromise than usual which we discovered yet again when trying to find a fitter for the adaptation we thought would work for our Caravelle. The kit doesn’t come with a seatbelt – just to quickly explain the Caravelle has separate seats that roll up and down the main body of the car and have their own seat belts on the seats. The Kit required a stationary seatbelt which is notoriously tricky to fit. The engineer we met with at Martin Healy agreed to fit it for us, but the usual answer is no. A small word ‘yes’ made for a massive difference to our future holiday plans.

Theatre Royal in Newcastle has an amazing scheme for carers and their ‘carees’. Its a little white card that allows you to book shows at a reduced rate and with the highest level of care and attention to you and your party’s needs. My daughter and I have now seen Hey Duggee and Winnie the Pooh in the last few months and loved every minute – she sang and smiled all the way through. Such joy from a little thought. Apply for your access card here.

I remember early on in our ‘new world’ journey the pure joy of being able to take my profoundly disabled little girl shopping in the trolley chair. I thought I had won the lottery and all thanks to the GoTo chair having been designed at the time. A lot of the ideas come through the Cerebra charity innovation team – you submit your problem they come up with a solution and if its good enough it may even go into full production. How amazing is that!

Being part of this ‘New world’ it’s not always easy to find answers to issues you face, but there is a wealth of knowledge amongst the Access community on social media. I follow a page on Facebook called Don’t Pass the buck, recently they added a post that resonated with me on quite a deep level but was another ‘little things’ joy moment. Their ‘Lush’ store has a step so you need to ring the bell to get in but sometimes it’s so busy the staff don’t hear. As a result of taking the time to listen, there is a designated staff member who wears the bell and you are guaranteed to get in the shop round the back up the ramp straight away now. Solutions not problems – a huge little thing!

Let’s go out today and do something little to make someone’s day – even just a smile goes such a very long way.