Nine years ago when Pumpkin was diagnosed with a genetic eye condition called Leber’s Congenital Amaurosis which meant that he was severely visually impaired, I remember worrying about EVERYTHING. How would he play? How would he make friends? How would he learn? All the ideas I had about raising a child changed but one thing I don’t remember considering was keeping him indoors or limiting his access to the world. Of course my mummy instinct was to wrap him up in cotton wool but I knew instinctively that in order for him to have a good and full life I needed to focus on the things that he could do rather than the things that he can’t (which, there are few of).
We were living in South Africa when Pumpkin was born and the first time I took him on a plane was when he was two months old from Johannesburg to Durban. At the time I was battling through a very difficult breast feeding experience (a whole other story!) and as my name was called out over the airport tannoy I was sitting in a toilet cubicle cradling a crying Pumpkin trying to feed him. Following the last call I dashed to the gate and with baby in arms I stepped on the silent and crowded plane, Pumpkin STILL screaming. My seat was squeezed between two rather large business men and as soon as I sat down I scrambled my bag for a clean nipple shield (I told you it was a struggle!) and preceded to feed him. Stress!
Anyway, it didn’t put me off and since then Pumpkin has become a pro traveller. Of course there are difficult moments travelling the world, with all its beauty, alongside my visually impaired child. I am often hit with a familiar stomach punch with the reminder that he can’t see a spectacular view or a pretty piece of art high up on a wall but these moments are topped by his squealing happiness when the airplane touches down on the runway or when a high speed train whizzes past pushing wind in his face.
Even when doing things here in the UK my mission is always to get him as much hands on experiences as possible. If we go to the theatre we check whether they offer a ‘touch tour’ of which the charity VocalEyes are fantastic at organising and I’ve become quite the expert at calling ahead to see how an experience can be made more immersive for Pumpkin. This is often not necessary though, most places we have visited are more than willing to help him access an experience fully. Sometimes all it takes is for a staff member to see his cane (we call it his ‘magic wand’ for this reason!) and they go out of their way to help him and if they don’t, I ask! In New York City I wanted him to have an idea of what the Statue of Liberty looked like so I took him in to a gift shop to let him feel the souvenir versions. The shop keeper saw us and he was so kind, he let Pumpkin take two home!
When we visited Philadelphia he was even lucky enough to get his hands on the historic Liberty Bell!
Where ever we go I look for sensory experiences for him that will add to his trip and I’m not afraid to break the rules from time to time to let him touch things!
Last year I contacted the London Underground and told them what a huge fan he was after which he was invited to come up on two occasions once to make announcements over the loud speaker and then again to drive in the cab of a Jubilee Train! Needless to say he will never forget those moments!
Knowing his areas of interests I am always able to cater our travels to meet his needs and believe so strongly that he needs to have as much access to the world as anyone else, regardless of his disabilities. It doesn’t stop him, so why should I?!
For more about of our story click here.