Friday, 21 March 2014

Myths and Misconceptions about life of a child with Down Syndrome

Down Syndrome, Make a wish, take a chance, Make a change, break away, my life my son my way, Sometimes I hear things in passing that I think 'actually you're wrong' but I feel like I can't correct it and find myself biting my lip to be polite because they 'mean well'...
This is mainly through misconceptions and ignorance (not nasty ignorance just general ignorance) and so until someone does say 'WELL ACTUALLY...' they will never learn and this will go round in circles.
I'm not on my own with this, parents across the country and even around the world have the same problem with the misconceptions of the general public.

 I would like to just set a few things straight today... 
In a polite way that you can read at your own pace...
That doesn't make things awkward for any of us, mainly because I can't see you or your awkward facial expressions and you can't see my ongoing frustration...
So here goes, these are some of the common misconceptions of Down Syndrome we've come across in the past 11 years...

Not ALL children with Down Syndrome have heart defects...

In fact a large number of children with Down Syndrome have completely healthy hearts and live their life to the full and until old age with no heart issues at all... Kyd included *touch wood*.

My Life My Son My Way, Kyd, Tiger, hearing aid, my life my son my way, Not ALL children with Down Syndrome progress at the same time...

They take their time to roll, sit, walk, talk or learn but once they get it, you can't stop them! This is usually because of poor muscle tone and joint flexibility which can be connected to Downs but they'll get there when they want to, they all do it eventually and when they do it is the greatest feeling in the world.
Patience is the key.

Not ALL children with Down Syndrome have hearing problems...

Children with Down Syndrome are prone to hearing issues like Glue Ear and hearing loss, just like hundreds of thousands of other children in the world without Down Syndrome. It doesn't mean they ALL have issues, they just have smaller ear canals and so their treatment is slightly more complicated to others for some things. Hearing problems can play a role in anybody's life, at any stage, just like people who have Downs, it isn't exclusive to them you know.

Basketball, Down Syndrome, cool, Kyd, my life my son my wayNot ALL children with Down Syndrome have speech issues for their entire life...

OK so most of them struggle with speech and language at some point in their childhood, that is well documented but most will catch up eventually and some don't even need any help at all... in fact some don't ever shut up, its just natter, natter, natter... just like other kids!

Not ALL children with Down Syndrome are over weight...

It is a fact that many people with Down Syndrome gain weight faster due to some metabolism changes as they hit puberty and it is, as you can imagine, difficult to lose. This isn't something that effects 100% of people with Down Syndrome though and is something mums of children, like me, get really scared of as they begin to leave childhood for their teens.
I have been working on fitness and health with Kyd throughout his childhood and hopefully he will remain at a healthy weight but if he doesn't we will try our hardest to help him be as healthy as he can be.
Please be aware of this before you say 'they gain weight really fast don't they' to a parent, they know this, they will do their best to control it... sometimes they can't though and it hurts them inside to hear people say their children are going to be fat and so those comments don't help... #JustSaying

Kyd, School, Mainstream, Down Syndrome, Marvel Bag, my life my son my way,Not ALL children with Down Syndrome wear glasses...

Some do, some don't.
My Dad does, I don't... same thing.
There are connections to more serious eye conditions but again that is a lottery, they may have the issues, they may not!
(Are you getting the theme here yet??)

Not ALL children with Down Syndrome attend Special Needs Schools...

In fact many children start at a mainstream school and stay in a mainstream school throughout their education. It can depend on both the child and the school. Kyd has just moved to a SEN school but mainly for medical needs. He loved his mainstream school but he equally loves his SEN school. Sometimes kids can do half a week at both too by the way, that is called 'duel placement' and is at the discretion of the local council.

Kyd, Rocky, iPad, Technology, siblings, learning, Down Syndrome, my life my son my wayNot ALL children with Down Syndrome struggle with their education...

In fact I read more and more stories everyday about teens with Down Syndrome passing their GCSE's and graduating high school or even College and University. They have their own pace for doing things and it may take them a little longer sometimes but actually they can achieve as much as we can.
Don't underestimate them!

Not ALL children with Down Syndrome don't understand instructions...

They understand a lot more than you think. They are more intelligent than you give them credit for. In fact, they often play on the fact that you think they don't understand you. Some children struggle a little more than others and their ability to understand instructions can take longer to tackle but actually if you make those instructions simple and clear they'll get it eventually, even if you have to show them a few times. Kyd is a little monkey, if he doesn't want to do something or is with someone new, he'll play on the fact that they don't think he understands it. He will play dumb, so to speak. He's hilarious with it but I'm very wise to his antics now!

Kyd, air guitar, Reading Festival, Festival, Down Syndrome, age 4, cool, kid, my life my son my way,Not ALL children with Down Syndrome are stubborn...

All children are pretty stubborn when they want to be, aren't they, lets face it, so when people say to me 'they can be so stubborn can't they' it doesn't half grate on me, I just reply with 'can't we all' and smile but inside I'm like 'you wanna see stubborn...' hahaha.

Not ALL children with Down Syndrome have bad dress sense...

This is an odd one isn't it, but I often get told in a shocked voice that Kyd has amazing dress sense for a child with Down Syndrome... why wouldn't he want to wear what he looks good in?... I get it though, as a kid I thought all people with disabilities wore hand knitted jumpers and joggers, I soon learnt they don't as I grew and that it was just an 80's thing. I did however over compensate for this and have created a mini Gok Wan/Fashion Monster.

Not ALL children with Down Syndrome like Mr Tumble...

Hahahaha I had to add this in. Kyd loves him but I know that it is a misconception that he is a must have accessory in the Down Syndrome world. He's not. However he did teach me everything I know about Makaton and so I thank him for that.

Kyd, Hospital, Ace Tube, Surgery, happy, Down Syndrome, my life my son my way,Not ALL children with Down Syndrome have bladder & bowel issues...

Although common, due to muscle tone issues, shockingly they actually wee and poo as much as we do, amazing huh?!
Some, including Kyd, have issues tied to Downs but are actually issues any one of us could get too. They tend to take longer to toilet train but that again is due to muscle tone and understanding of the feeling of needing to... but again some do it quicker than others.
Kyd has an ACE tube due to his chronic lazy bowel. This was 11 years in the making and is something that has changed his life for the better after just a few short months.
Kyd, Cafe, independance, Shed, Reading, Down Syndrome, Customer, my life my son my way,

Not ALL children with Down Syndrome will need help with everyday life as an adult...

In fact, more and more adults with learning disabilities are living independently in the big wide world and they cope incredibly well... better than most first time uni students or adults in general for that matter!

Not ALL children with Down Syndrome are 'So loving and good natured'...

No I'm serious... they really AREN'T!
Look, I am not being funny but yes they may like to smile sweetly and make you think they are all sweetness and light but you try and get Kyd to give you a 'Oh so loving' cuddle or kiss and he will shake his head and run away just like any other 11 year old boy. He can be a brat when he wants to be and he can also be mean, just like any other kid in the playground.
He is as loving as any other child of his age, this is standard across the board and if anybody tells you otherwise they are not a parent of an older child with Down Syndrome, we as parents to older children know otherwise... they'll soon learn.
He is loving, he is cute sometimes, he takes things to heart sometimes, he is quite a calm soul really, he may even kiss you... but only if he wants something!
He has the same feelings, emotions and ways of expressing them as any other child, he is no more loving than the average child... in fact Rocky is way more cuddly than Kyd ever was.
As I am writing this he is giving me daggers because he lost his PlayStation rights whilst being naughty on Tuesday morning... see just like life with any other child.

Kyd, happy, Down Syndrome, thumbs up, my life my son my way,Most importantly... and annoyingly...

Children with Down Syndrome ARE NOT ALWAYS HAPPY!!...

Seriously, the most frustrating thing for me is when people say
'ahhh they are always happy aren't they!'
no, no, no, No, NO!
You live in my house for a week and then say that without your nose growing.
They are not always happy, they have the exact same feelings as anyone else and are prone to frustration and tantrums just as much, if not more, than any other child or adult, especially when you accuse them of always being happy.
Kyd is happy when he wants to be happy,
Sad when he wants to be sad,
Angry when he chooses to be angry,
Excited when he chooses to be excited...
Just like us!


Now you have the true facts about living with a child with Down Syndrome.

Sorry if any of that has shocked you, worried you or patronised you in any way, but I tell you what it was great to get that out there and be completely honest, so thanks for reading. I know many will be nodding at all this, some may not, but all in all I hope you realise that you can't put all the currents in the same plain bun, they can go with so many other cakes too you know and are pretty versatile.
Life is a lottery of health losses and wins...
Even when you have an extra chromosome added to the mix. 

Down Syndrome, World Down Syndrome Day, 2014, Epic, positivity, parenting,
Happy World Down Syndrome Day!
If you want to read more about Kyd and our journey with Down Syndrome please visit the page in the menu above named Down Syndrome  for all the relevant links.
Alice, signiture, pocket watch, bird, my life my son my way,


  1. What a fantastic post. You know I feel ashamed to say that I may have had this impression about one of those things so I'm glad you set me straight. x

  2. Perfect post Alice. Why do people seem so keen to pigeon hole people. I guess it's neater for them if everyone's in a tidy little box.

  3. A really great post. People are fond of pigeon holes, it makes it easy to summon up a platitude- when often we dont want to hear a platitude anyway. My middle child is (probably) on the autistic spectrum- and people have their pre-conceived ideas about that too - mostly based on rain man! Everyone is unique and should be treated as such!

  4. A really informative post -taught me a few things which is just what the awareness day is all about.

  5. I truly have never understood why people generalize about any group of people. We're all different and unique in our own ways. And we all deserve respect and not to be put in a box as one thing or another. Fantastic post. x

  6. This is a wonderful post Alice - really informative and genuinely interesting. I really hope that people will learn eventually that each of us are unique and special. x

  7. maggy, red ted art21 March 2014 at 16:50

    Wonderful post, so important to look "past the condition" and see everyone as a child. a person, an individual. All children are different, have their ups and downs, learn at different rates etc etc.

  8. Bex @ The Mummy Adventure21 March 2014 at 18:23

    Love this post! I have to admit to not knowing much about downs but I do know that we are all individual and unique no matter what genes we have x

  9. Brilliant post Alice, you are so honest, love you (and love baby Kyd's face in that brotherly squeeze!) x

  10. Alice, you are just brilliant, what a fantastic post! I did laugh at the Mr Tumble point! :D xx


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