As you may or may not be aware, October is Down’s Syndrome Awareness month. A cause of which is not only important but very close to my heart.
The month of October is about celebrating people with Down’s Syndrome and making people aware of their abilities and accomplishments.
I’ve decided to write this post as I feel we should all be educated and informed about Down’s Syndrome. We, as a society, need to eradicate the stigma that surrounds it and vocalise our awareness and understanding. Down’s Syndrome is not a disease – people with Downs’ are not ‘ill’, and do not suffer from the condition.
In order to raise awareness, we ideally need to know some facts.
Did you know?
- Down’s Syndrome is caused by the presence of an extra chromosome in a baby’s cells.
- In the majority of cases it is not an inherited condition. Down’s Syndrome usually occurs because of a chance happening at the time of conception.
- For every 1,000 babies born, one will have Down’s Syndrome.
- There are approximately 60,000 people with Down’s Syndrome living in the UK.
- There are varying degrees of learning difficulty in those with Down’s Syndrome. A majority of these individuals will walk and talk and many will read and write.
- Today, with the right support, people with Down syndrome can enjoy a life of sixty years plus.
My sister Jade (pictured), is beautiful, funny, caring, courageous, sassy and mischievous. She also has Down’s Syndrome. She is thirty one years old, the eldest of four siblings and is beloved by everyone around her.
Jade is not only my sister, she is my best friend. I mean, I still sleep in her bed, regardless of the fact that I have my own. It doesn’t get any closer than that.
When I was younger, I didn’t realise my sister was ‘different’. Yes, she needed more attention and care than my other siblings and I, but she was just my sister. Now that I am older and wiser, I can recognise that my sister may not be able to drive or go clubbing with me, but I am able to appreciate her for the sister I look forward to seeing after a long day.
Jade gets it, even when she doesn’t get it. She has a deeper understanding of emotion and empathy than I will ever know and has the ability to always put me at ease. She tells me to “calm down Priyaa, relax, breathe in and out”. She shares an honest, kind love that is so precious and pure.
In relation to Jade’s character, her personality traits make me laugh and cry (lol).
Jade has a hilarious sense of humour. When she has her signature cheeky grin on her face, I know I’m in for a laugh. There has been many occasions where I can’t find my car keys and I’ve turned around to find Jade jingling them, cue cheeky smile.
However, Jade can also be hard work.
Jade, like many people with Down’s Syndrome, uses coping mechanisms in order to ‘control’ the environment that surrounds her. She uses routine, order and consistency in order to do this. Jade has a weekly routine in terms of the days she attends college, what time she has her meals, etc. When things deviate too far from ‘her norm’, she becomes anxious and starts to act out. This routine is Jade’s security blanket if you will.
Jade is also very stubborn. A trait, in my experience, seems to be common in those with Down’s Syndrome. Stubbornness and a refusal to co-operate can be a signal from Jade that she doesn’t understand what is expected of her OR simply because she just doesn’t want to do something. She is allowed to have an opinion and within reason, we (my family and I) have to respect that. Jade has choices and options in all aspects of her life to enable her independence. It is imperative we do this, as Jade, like anyone, should be able to make her own decisions.
I have learnt to be calm and patient from dealing with my sister over the years. Sometimes it is easier said than done as Jade cannot always verbalise what is wrong, so it is up to us to figure it out. These skills have definitely helped in my work with children – thank you Jade!
Moreover, Jade is an active member of society.
- She goes to college three days a week, accompanied by her carer, where she does flower arranging, soap making and physical education classes, to name a few.
- She goes to a separate drama class, where she flourishes with her drama skills (lol).
- She uses public transport regularly and is happy to do so.
- She helps my mum with the weekly food shop and knows our local Sainsburys like the back of her hand.
- Jade and I go out on weekend adventures to the cinema, bowling, to get our nails done, etc.
These are just a few examples illustrating that Jade is able to life a fulfilled life and that having Down’s Syndrome doesn’t inhibit her from doing so.
Jade is different, not because she has Down’s Syndrome, but because she is special, special because despite her all of her set backs, she is so happy and content. She has been through so much in her life, things I couldn’t even contemplate going through, but she always comes out the other side – unfazed and ready to take on the next set of challenges. That fact in itself is so humbling. She is nothing less than a blessing to my family.
Children and adults with Down’s Syndrome must be able to enjoy full and equal rights alongside their peers. This includes the opportunity to participate fully in their communities as and when they wish with the right support.
I hope that this post was able to enlighten your understanding and awareness of Down’s Syndrome. It means so much to be able to share my story in the hopes that it may help in facilitating the learning journey of others’.
I would really appreciate it if you could share and repost this post on to any social media platforms so that we, together, can raise awareness for Down’s Syndrome, not only in October, but forever.