When Amber first messaged me, my heart instantly melted – I really struggle to find words to describe how I feel about Amber. She’s a vivacious little fire cracker with a heart of gold. She sees no different and is probably one of the biggest Down Syndrome advocates I’ve ever come across. Unlike the other stories I’ve shared, Amber has no direct relation to someone with Down Syndrome. At such a young age, she has chosen to dedicate her life to supporting those with Down Syndrome because, as she describes below, it’s changed he life. Plus she says most of her friends can do things that she’s still unable to do – Matt regularly helps her with her washing as she doesn’t know how to use a washing machine! Haha!
You’ll often see Amber going on a night out with some of her closest friends, who happen to have Down Syndrome who she is not a support worker for. She chooses to be friends with them as she genuinely gets along with them and has a fantastic time with them. She says her life would not be the same without them. She has a pure heart of gold and what I wish for is a world full of people with as pure a lens as she has.
Amber has dedicated her choice of studying to studying Down Syndrome and prenatal testing and isn’t shy to shout it off the roof tops just how proud she is of her friends.
She has held my hand through this journey – she is an absolute God send, any time I have any fears or worries, I know she’ll be able to answer them herself or through her friends or their families.
A big thank you to Amber for helping me to collate several of the stories I’ve been able to share.
Below Amber shares her journey.
What chose you to want to work with people with Down syndrome?
From around the age of five I knew that I wanted to have a job where I help and support individuals, I didn’t realise at that age that I would specialise in Down Syndrome I’d always thought it would be across-the-board.
Over the years I’ve had many jobs, including working at a law firm which I really enjoyed until I found that I could be doing more to help individuals rather than working 9-5 not achieving anything.
It sounds corny but I feel like the job I do now I was destined to do, I currently support individuals with learning disabilities whilst studying at university, as I hope soon to be a special needs teacher at a specialised primary school near me.
What have you learnt about working with people with Down syndrome?
This is a tricky question as there is not enough time in the world to possibly explain how much I’ve learnt. There are a lot of misconceptions surrounding adults with Down syndrome, like “Oh I bet the people you work with are dead loving” this is something that frustrates me as each individual has their own personality which cannot be dictated due to their learning disability. I have learnt that all of the adults I support and all of the adults that I count as my closest friends with Down syndrome all have their own amazing personalities they’re not given credit for the level of intelligence they have, sometimes when I’m upset Claire will call me and say some of the most inspiring words that just pick me up, which often makes me realise how much we take life for granted as most of these adults have some form of health condition yet you will never hear any of them moan about!
I sometimes get offended as I find that some of my closest friends have Down syndrome and many assume I support these individuals, so say if we go to the pub for a drink people look at me with a disappointed look, almost as if I were their terrible carer out on the razzle “you’re getting drunk on the job” which the girls actually notice people staring, but what’s funny is that the girls are all older than me by around 7 to 12 years and the misconception that they are very mentally young which is incorrect as I find that all individuals have tendencies to enjoy things from their childhood just like an adult with Down syndrome yet many a treat these adults like babies. One thing I can honestly say is that I have the best time with these individuals who society need to treat as individuals
How is what many perceive different to the reality for people with Down syndrome?
I find that many adults with Down syndrome get treated like babies which they themselves notice and tend to get upset by. Don’t get me wrong there are adults out there with Down syndrome that need extra support but isn’t that the same for adults that we class as ‘normal’ many parents that I know get cross with how their children are babied, as it can come across extremely patronising.
What would you like the world to know about people with Down syndrome?
The biggest thing that I’d like people to know is that adults with Down syndrome are capable of leading healthy, – what you would call ‘normal’ lifestyles if they have the correct support around them.
Over time I have met many different adults and I could be wrong but I have noticed many adults are a reflection of their family, so I know some individuals as the Down syndrome social scene is very tight knit that are not the best people what I would call a bit naughty sometimes then when you meet the families you see that the individual has either been spoilt and allowed to get away with bad behaviour or they have not had the support and encouragement to achieve what they want to therefore take part in negative behaviours in order to get attention. Whilst studying I found that many books are very scary to read as they make Down syndrome out to be tragedy “the end of the world” which that it is not I find that because most academic journals our extremely dated information is incorrect, as now in the 21st-century is a lot of promoting our adult independence, which I think is completely down to the individual and parent’s discretion whether the child needs an independent lifestyle.
I dedicate my words to Claire Ruth and Laura x
Amber x
