Language and Terminology with Down Syndrome

I start this blog by expressing that the words you read are my own independent views and that my only expertise here is to have raised a daughter (who is currently 10yrs old) with Down Syndrome. I have wanted to write blogs in this way for so long but have stopped myself for fear of judgement from others; but no more. If I can help educate just one person with this blog then I have succeeded in what I set out to do.
I personally believe that the language and terminology used when speaking about a person with Down Syndrome is so, so important as it is with any disability or learning difficulty.

So let’s begin with two definitions.
According to google
Language is

the method of human communication, either spoken or written, consisting of the use of words in a structured and conventional way.

Terminology means

he body of terms used with a particular technical application in a subject of study, profession, etc..

Therefore when speaking or writing about a person with Down Syndrome, to me as a parent, it is extremely important to use the correct terminology.
I expect my daughter to be treated with the same respect and dignity as I would hope for all of my family. You may have heard of the saying ‘person first’, but what does that mean to you? Quite simply the person should ALWAYS come before the diagnosis.
Please, please do not use Down’s child, Down’s or the disabled kid please use the prhase ‘The child with Down Syndrome’

To see some other common phrases that can be used easily enough, I have put together a download (keep reading) and used a great poster from the Down Syndrome Association which has a wealth of information.

Using incorrect terminology can not only be seen as politically incorrect but can also be taken offensively. I personally cringe when I hear it and hope it is due to lack of education rather than someone being unkind; hence why I choose to continue to raise awareness (with so many others) so that we can all learn from each other. I personally had never heard of Down Syndrome before I had Ellie, read my account of this here so I do understand that we don’t all know everything and we can all learn from each other.

Person First – Always

So please do tell me, does language bother you, have you learnt anything from today’s blog? Is there anything you would like me to explain about Down Syndrome and my journey with Ellie in future blogs.
Do post in the comments or feel free to email me directly here.

Until Next Time
Sharon x

Questions Parents Ask Themselves After Receiving A Down Syndrome Diagnosis

(Part One)

You may read this and wonder what a weird question! That’s ok but I thought it was important for other carers to be assured that any question they ask themselves after a diagnosis are all perfectly normal.
I collaborated with several parents in the Facebook community Wouldn’t Change A Thing Parent Support group to write this so please do read to see what questions often go through the mind of a mum when she is given a Down Syndrome diagnosis.

Social Questions

Will she get invited to parties?
Will she have friends?
Will he be bullied?
Will nursery have him?
Will she get married?
Will other children make fun of him?
Will she be beautiful/pretty?
Do I need to live until 100 to make sure they’re safe?
Will he be ostracised?
Will people understand him?
Will she look like me?
Will everyone love her?

Scary isn’t it, but most new parents do wonder about the community and how they will treat their child? I honestly feel that this can be overcome with more children with Down Syndrome being seen in the community with their friends. More knowledge passed on at nursery and schools to encourage friendships and more parents being aware of these concerns and maybe talking to their children about Down Syndrome.

Ellie with her school friends

Functionality Questions

Will she be able to ride a bike?
Will he be able to drive a car?
Will I be able to work?
Where will he go to school?
Will he be able to walk?
Can she fly abroad?
Will she talk?
What will happen when we are gone?
Will she be independent?

These questions can be answered by parents that have been there before and I feel it’s important to be part of your local community to meet other families. All of these have been achieved by children and adults with Down Syndrome so there is no reason why not. Your child may take longer and they may experience health issues or other complex conditions that could affect them from achieving SOME of these.
The only one that can not be answered is what will happen when we as parents are gone but by seeing adults with Down Syndrome living independently, working and getting married; the future is bright.

Check out Down Syndrome in the News

Family Questions

Will my family want to see her?
Will my son get picked on because of his sister?
How will the additional care impact her brother?
Will her brother become over protective and get into trouble?
Will this have an impact on her sister?
Can I still be a grandma?

Hard questions aren’t they as no-one knows how family will react when they know the news. What I would personally say to a new parent is try not to give these questions much thought. Yes you can still be a grandma, it isn’t impossible but by that time you might not want to be. To those that have family with children with Down Syndrome, did you want to see the new baby straight away, I would love to know.

By writing blogs like this, the aim is to help you understand a little more about Down Syndrome, the aim is to help new parents with the knowledge that generally, most new parents feel and act the same and whatever you are feeling, thinking it is ok. To everyone else in society please bear these questions in mind when a family, a friend tells you their news of their child’s diagnosis and help them with any questions, concerns they may have; be there for them and empower them with positivisism

As always thanks for reading and stay tuned for Part 2 coming soon. If you have any questions at all about this blog or about Down Syndrome, please do not hesitate to comment below or message me

Until Next Time
Sharon x

Bullying; How To Be an Expert at Avoiding It

Given that this week is Anti-Bullying week, November 11th – 15th I thought I would write a post to help children avoid bullying from both sides; becoming a bully and being bullied.
I am a parent therefore I am no expert so this blog is purely my personal opinion only but after being bullied for a few years when I was younger I certainly have had the experience of it.
In addition having children, especially one with Down Syndrome, it is something I really do not want them to experience even though I often hear regularly “Children are just mean….. they all get bullied”
This shouldn’t be the norm and I feel as parents it is up to us to educate our children on this behaviour as change does start with us.

Who is a Bully?

A bully is defined as
‘a person who habitually seeks to harm or intimidate those whom they perceive as vulnerable’
As a verb bullying is defined as
seek to harm, intimidate, or coerce (someone perceived as vulnerable)’

So generally this can be anyone in my eyes who is being nasty to someone else. Now whilst I get not everyone has to get on or like everyone, it doesn’t give any child or adult the right to intimidate or worse, harm another human being. Bullying doesn’t have to be physical, it can be vocal and not even in given face to face given that cyber bullying is on the rise.

How to Avoid being Identified as a Bully?

I would like to think it was quite simple not to become a bully but I do understand the pressures young children get today from peers, from wanting to be accepted to be part of the ‘right crowd’ however it does come back to us as parents to talk to our children daily. To explain and encourage positive behaviour,

Three Ways to Help Your Child Who Maybe Bullying Others

  • Talk to them to help them understand how much harm they are causing by bullying someone (many adults never forget these emotional scars and damage can truly affect someones life)
  • Talk to them to help them understand why they are actually bullying someone; is that the only way to know how to react to someone, are they angry at something else and if needs be speak to someone that can help them (a counselor)
  • Talk to them to understand the consequences involved in bullying others as it can often lead to expulsion and even arrest
    For further guidance check this guide out

How to Avoid Bullying

After being bullied myself this is quite hard to write but I feel so important. Bullies tend to pick on those more vulnerable, those less confident and those who appear unsure. Now whilst words can help a child ‘Say No’ simply saying to your child ‘Stand up for Yourself’ may not help them as much as putting actions into practice that can support your child on a daily basis.

Five Ways You Can Help Your Child Avoid Being Bullied

  • Instill confidence into them daily
  • Consider self defence classes to protect themselves
  • Practice affirmations together
  • Encourage them to make friends and ask for support from their friends
  • Get them to tell someone in authority immediately

A link that may guide you further with online bullying

I write this from a parents point of view and nothing else, not to patronise or sound condescending but I do believe that if we all choose to educate our children about the seriousness of bullying then it should start to reduce it. You could ask them to watch this

Be A Friend Not A Bully

I do hope one of these resources might help you as a parent and whilst this is something completely different to what I write about usually, I am all for inclusion matters, every child matters, education for all, changing attitudes and raising awareness.
I’m curious were you bullied at school? If you would like to reach out to me privately then please get in touch here

As always. thank you for reading and
Until Next Time
Sharon x

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