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