What is Down Syndrome – A Mum’s Opinion

What is Down Syndrome? There are many articles, websites and support groups on social media that can tell you the science, the facts and the up to date information of what Down Syndrome is. Here I share with you what I think it is in my own words, a mum’s opinion.

Only ten years ago I personally had never heard of Down Syndrome. When I received the diagnosis hours after Ellie was born it was met with a checklist and nothing positive. I cried, I cried not even knowing what I was crying about except I knew my daughter was disabled. The literature given to me to read was (now I know) out dated and weighed heavily towards the negative impact of ‘what could happen’ to Ellie.

You may have seen this literature yourself, you may in your own head know exactly what I am talking about; poor eyesight, heart problems, late learning, delayed speech to name a few. To read more about those earlier days do read my earlier blog. Today I wonder how other parents would feel if they got something similar, your child may grow up to be a murderer, a drug addict (you get the picture) and it was the word ‘may’ and the reason for this is all children with Down Syndrome are unique. Yes they may have to wear glasses, but there again they may not.

I truly wish I would have seen literature that stated your daughter ‘may’ be an actress, ‘may’ become a model, ‘may’ become a public speaker. It would not have felt so scary and that is why there are many communities and charities changing this by providing new parents with positive information and educating those in the profession how to support in a positive way. A community I am part of Wouldn’t Change A Thing are making this happen and have recently published a book to support new parents.

Wouldn’t Change A Thing
A book to raise awareness of Down Syndrome

So without the science and the facts, what does Down Syndrome mean to me, a mum ten years on and the simple answer is nothing. Ellie, my daughter, is Ellie, a young girl that enjoys music and dancing, loves her Ipad, has close friends, attends swimming and can sometimes be seen enjoying playing with her brother. I don’t see the disability or the label and whilst I can say that this wasn’t the case at the beginning, it sure is now.

To new mums and dads, however you are feeling reading this, it’s fine. Your child will grow up like everyone else and whilst I don’t want to paint a false rose tinted picture because your child will be who they are meant to be with your love, your encouragement and your family.

To mums and dads with primary school aged children, I hope this helps you and your children to see the person first and understand that nothing is more important to a child with Down Syndrome than being included.

I hope you have enjoyed reading this and please do comment if you have learnt something from this. If you would like to get in touch with me for any Down Syndrome advice or support please do reach out here

Until Next Time
Sharon x

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

T21Hub, The Review and What to Anticipate in 2020.

What a year and I know this is a late one for an annual review however I thought it would be a nice way to start the year off, with some intention. So let’s get started by beginning with what briefly happened in 2019, how did T21Hub start and what to anticipate in 2020.

Who Are We?

For those that are reading this blog for the first time, go check out my home page so you can see who and what we are all about. In a nutshell, T21hub began after a coaching call and 21 days of constant journalling. I was asked by my mentor, what and where was my passion?
It was obvious to me in the end, it was to raise awareness about Down Syndrome to support my daughter, Ellie and my family and to be part of a more inclusive society. That journey started with the T21hub website and along came my blogging for this passion.

The Highlights

Each month began the same, I wasn’t sure what I was doing, where it was leading but I continued to post on social media and make connections. Over time I began to see publications on other sites, there were many collaborations with others as in books, services to the BBC, communities such as Bury2Gether , Mums in Business Association and charities. It was incredible how it came together.

The Lowlights

I am pleased to say there weren’t many, but there were often doubts, worries about sharing too many pictures of Ellie, would family (Billy & Jason) want to support me sharing our lives. I worked daily and tirelessly to change people’s attitudes, make them more aware without initially seeing anything but a few comments here and there but I could not and will not stop. Honestly with the connections made, the feedback given and knowing that Ellie is making an impact will help us to continue.

2020 – What to Anticipate?

I am just going to put this out there, yes I am half way through a book!!!A book? Why? Simply that I do not feel there are many parent case studies to read and if what I write helps one other mum who has just been given a diagnosis of Down Syndrome then it will be well worth it. I know it would have been something I certainly would have read rather than the booklet I was given that was both outdated and not very positive.
I do have so many other ideas, including raising funds for teenagers with additional needs to access more activities. I as many others feel the support dwindles as children become young adults and this needs to stop. Isolation is damaging, a community without inclusion is wasted and I would love Ellie and Billy to grow in an accepting society.

Many people share their stories to help raise awareness for disabilities and one thing I would love to do is connect with them and share my experience of social media. We currently have a Facebook group set up for us all to encourage and support so if you know of anyone that is on a similar mission, please do share this with them Get Seen with Sen

Stay tuned, thank you for reading (as always) and if you think you can help with any part of this mission, please do contact me either by leaving a comment or emailing me at sharonc3966@hotmail.co.uk

Until Next Time
Sharon