Seeing as it’s World Down’s Syndrome Day, I thought I’d tell you a bit about how awesome I am

My name is James and I turned 4 last week. I’m obsessed with steam trains, love football, dancing, books and ice cream but most of all I love playing with my twin sisters (6) and my brother (22 months).

My mummy says that I’m lucky as I got an extra chromosome number 21 which means I have 3 copies of that chromosome instead of the usual 2. This means I have Down’s Syndrome, and according to my family, I am utterly perfect.

DS happens through chance and it’s not inherited, just like identical twins, which my mummy was also lucky enough to have before me with my sisters. We think she should buy more lottery tickets!

DS is not a disease and we don’t “suffer with Down’s Syndrome”. Approximately 40,000 people with DS live in the U.K. including me. It’s believed that people with DS have always existed and it is naturally occurring in all races, social classes and in all countries in the world! We are just different and are very happy with who we are. Trust me, there’s research on this ;)

Having DS affects everyone in different ways. People with DS can have health issues which vary greatly, the majority of which can be treated or fixed nowadays. I had a hole in my heart fixed when I was 3 months old (spent 4 days in hospital and all fine since then) and I wear glasses as I’m long sighted.

We have a learning disability which varies from person to person (My mummy says I am just differently able). Having a learning disability affects the speed at which we learn, but it DOES NOT mean that we can’t learn! I personally love learning and I’m a strong visual learner as are many people with DS. I love books and can spend hours looking through them and learning stories like Zog, The Gruffalo and Meg and Mog.

I also love letters, phonics and numbers and I’m starting to sound out words, which I’m very excited about as I can’t wait to read books on my own! I absolutely love going to mainstream preschool and I’m really looking forward to starting at my sisters’ big school in September!

Did you know that although we have a learning disability it is common for people with DS to have a high level of emotional intelligence and incredible empathy. My mummy sees this everyday, and she says sometimes I seem to be the only one that can get my sisters out of a mood :) but also know when to join in the fun and make them laugh. I’m highly attuned to the feelings of others which my mummy says is a real gift to everyone!

However, don’t confuse this with the common stereotype of people with DS that we are all “very loving and always happy”. I have the same range of emotions as any other 4 year old and I’m happy to express them. I also need a little extra help socialising at preschool this year as I didn’t interact with lots of children last year while I underwent my intensive chemo for leukaemia and I had no immunity.

Luckily I have lots of siblings to have fun with. I am getting much better with socialising with my friends at school and I am trusting them more now. I only have a few months left of treatment and I really have just got on with enjoying my life throughout my treatment just like everyone else in the oncology ward (although my mummy ALSO says that I have a unique way of not duelling on things and moving on quickly to the joy that I find around me).

DS affects my speech development which is delayed. However, I am becoming quite the chatterbox at home, making huge leaps everyday as I love practising. You should know that speech and language are separate things though, and even though children with DS may not talk much, we understand a lot. DON’T UNDERESTIMATE ME. I know much much more than I say, think more than I speak, and notice more than you realise.

Everyone with DS is different from each other and we are more like our families than someone else with DS. I look a lot like my sisters and my Daddy but I am an individual, just like you. Our abilities, hobbies and passions vary as greatly as they do in typically chromosomed people. I want to be valued, included and respected as I have a lot to offer.