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.
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.
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.
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.
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.
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 firstname.lastname@example.org
My blogging journey is all about educating people about Down Syndrome and I thought what an effective way of doing this was to create a simple A-Z to parents from parents who are raising a child with Down Syndrome. It is a collaboration with the help from other parents in our Facebook support group Wouldn’t Change A Thing (see attached). Together we devised this A-Z of words that we associate with having a child with Down Syndrome. https://www.facebook.com/groups/801281006738525/
We hope you like and as they say
“Let’s start at the very beginning, it’s a very good place to start……”
Let’s start with the beginning of the alphabet A – Ability; just because your child has Down Syndrome does not mean that they are not able. They may have alternative ways of speaking, of learning and at times to reach milestones but trust me – they do have the ability. Simply give them the space, the means and the encouragement B – Be Yourself; this is not just for your child who I firmly believe will never have an issue with this concept but more for you, the parent. Acknowledge the syndrome and then when you can, forget about it. Be yourself with your emotions, with your expectations and with the outside world….just be you! C – Chromosome; yes Down Syndrome simply means that your child has an extra chromosome on chromosome number 21. The End. It does not define them as you will see, if you continue to read. D – Determined; take a look at every day skills which are required to perform simple tasks. Now take on a learning difficulty, sometimes an additional disability, smaller limbs and do the same task. Well your child will do it as they are more determined than ever.
E – Education For All; many parents worry about mainstream and schools for children with additional needs. All children with Down Syndrome need educating. We are no longer in the 50’s and there is more than enough proof that mainstream is working. Look at what is being achieved today. Schools and councils need to stop worrying about budget cuts and concern themselves with education for all. F – Fun; who doesn’t have fun with their children (well when they’re not shouting at them)? To all new parents, this will become part of your daily routine. G – Genuine; this I personally love as my daughter Ellie just says it like it is. I have been told on more than one occasion that she is kissing the baby in my belly (yes you guessed it…I’m not pregnant!) and more recently hearing ‘No thank you mummy, I don’t want to move my plate right now’ H – Happy; it’s a biggy. NOOOOO children with Down Syndrome are not always happy. Ellie cries, screams and has moments as much as her brother Billy and I beg you to ask another parent ‘Is your child always happy?’ and watch their eyes role.
I – Inspiring; I understand that most parents feel inspired by their children but those children that have Down Syndrome do need to put a huge amount of effort in to simply get to the same milestones as their peers. This could be physically, mentally and more and because of this they inspire us parents each and every day. J – Jokers; I am not joking (see what I did there) children with Down Syndrome have a wicked sense of humour and whilst Ellie can be very dry, to the point and lateral she really can make you laugh out loud. K – Kindness; the type of kindness that children with Down Syndrome currently have comes from the heart rather than for a favour. L – Love; all parents have unconditional love for their children. Parents with a child with Down Syndrome have that little extra and they do become their No.1 fans.
M – Milestones; it is every parents dream when their child with Down Syndrome meets a milestone (whatever their age) because they have worked so damn hard to get there. I personally cried when Ellie first giggled which then resulted in her crying. We shrieked when she started walking (I think she was 2.5) but without any other complications they do all get there in the end and as they get older it does get less of a worry. N – Never, Never Doubt or Underestimate; I have watched some amazing videos recently which has motivated me more with Ellie can achieve. Our children can and will always surprise you. O – Own Agenda; Each child has their own agenda, their own journey and their own way of doing things. You will see children bottom shuffle to get to where they want to go. You will see children with Down Syndrome just find ways to get what they want and in their own time no matter how much you push and shove. Encourage but don’t force and watch the magic happen. P – Perfect; children with Down Syndrome are perfect in their own unique way to their parents and family and they really wouldn’t change them for the world. When families stop seeing that label (it took me a while) the magic begins.
Q – Quite Brilliant; do I need to say more or should I change that to Extra Quite Brilliant R – Resilient; truth! Many parents of children with Down Syndrome say their children are resilient, tough, bounce back easy enough and have the capacity to keep on going. Not a bad quality to have in a child don’t you agree? S – Superstar; trust me you will say this one day, your child is a superstar T – Truthful; now this is a fabulous trait when those words are kind however it has been said on more than one occasion from Ellie that she is happy for the baby in my tummy.
U – Unique; whilst facial characteristics are similar that is where it ends. Each child with Down Syndrome is unique in their own unique way; from character to both strengths and weaknesses and you will not be able to tell this from birth. V – Victorious; each year as a parent you will feel victorious, trust me. W – Wouldn’t Change A Thing; ask 90% or more of parents and they wouldn’t change a thing about their child. I now 100% believe Ellie is Ellie and she wouldn’t be Ellie without that extra choromosome. X – Xtra ordinary; that xtra chromosome provides xtra cuteness, xtra potential and xtra stubbornness don’t you agree?
Y – You Can Do Anything; without any extra health or mental issues each child really can do anything. Stop limiting your beliefs, let your child shine and believe anything is possible. Z – Zest; great enthusiasm and energy. Enough Said!
Do you agree with this A – Z, could you write your own; could these be said for any child? I would love to hear from you in the comments or contact me today. Thank you to all the parents of children with Down Syndrome whom contributed on this A-Z and as always, thank you for reading.
Welcome to our review series, this time we get to review a youth club based in Oldham. When I say we, I mean myself and my daughter Ellie who has Down Syndrome. Therefore we try to see how inclusive and accessible these places are. Why Mahdlo, read on?
The building is currently undergoing some work with extra space being added for more facilities which is brilliant. However there is no parking outside, which needs to be addressed but if you hold a blue badge you can park on near by streets and the main road. The building itself is over two floors with lots of rooms for various activities and has a cafe on site. The cafe is ideal for parents to grab a coffee or a quick lunch when the children are accessing the activities. It is a spacious building and the ground floor was extremely wide with enough room for several people to walk through at once.
The Activities Review
There are lots of activities at the centre for both children with and without additional needs and all be accessed via the website https://www.mahdloyz.org/ The one that caught my attention was the family afternoon which is every week on a Sunday for families with additional needs. Check out these pictures as I was openly in awe of everything that was going on, from climbing, to trampolining to cooking. There was nothing missing.
The Staff Review
The staff were both welcoming and friendly which is what you would like to see when visiting new places with a child with additional needs. There were several staff available in all the different areas at all times so you could easily get advice, support and the children were fully supported. There was a lovely lady called Amy who was due to have a baby within days and actually got on the trampoline with Ellie to guide her so she was safe. We even had a chat about atlanto-axial instability which showed their knowledge and I shared this link with them for further guidance https://www.downs-syndrome.org.uk/for-families-and-carers/health-and-well-being/neck-instability/ Amy Taylor, the Ability Co-Ordinator met myself and Ellie on the day and gave us the guided tour. I appreciated that she spoke to Ellie and not over her, she included her when she could and even asked for a high five at the end.
I cannot wait to go back to this centre and get Ellie fully involved. The membership is £5 annually plus 50p a visit or you can pay as you go for as little as £1.00. It’s only 20 minutes outside of Bury and I really wish every council had one of these sites available to allow access for those that cannot drive. Please do message myself or Amy if you would like any further questions answering and keep me posted if you go for a visit.
My goal is to get as many inclusive events and activities shared on social media to help other parents with children with additional needs stay informed. If you would like me to come and offer a review of your place, please contact me by email at email@example.com
Today is the day, my daughter Ellie, who has Down Syndrome starts year 6 and I am feeling very emotional. Since they broke up for summer I have always been on countdown for their return, yes I am that mum lol. We have had a lovely family summer but I truly believe six weeks is too long to be out of routine and that goes for both parents and children. So today is the day, the day Ellie enters her final year of primary and I am emotional. Here’s why.
I feel today, just like I did when Ellie started primary, nervous about what the future holds, concerned at how she will cope when she heads off to high school; which isn’t even for another year but I know this year will be just as fast as the last five have been and I really want it to slow down.
Ellie has Down Syndrome which means it takes her a little longer to get used to new routines and learn new topics. She has full support in class but this year we are hoping for a little less support to encourage Ellie to get on with her work more independently. This worked a few years back when the support stopped at lunchtime and has given Ellie the skills she needs to pick her own lunch, carry her tray and then find somewhere to sit.
Each year through primary, Ellie has kept up with her peers as best she could and for the last few years primary school has been a safe place for her but today I was emotional. I was emotional because it is her last year at primary, year 6 and it didn’t help, that me being that last minute mum, only picked up her new orthodontic shoes yesterday, so to Ellie they felt big and clumpy. She cried, she doesn’t like them and she didn’t want to go back to school 🙁
I know year 6 will be an emotional year for me, her last Xmas, last Easter at primary and her younger brother Billy, has started juniors too; it simply feels like they are growing up way too fast. So why have I chose to blog about this, well its therapeutic for me and if it helps one other parent to appreciate the emotions that most parents feel when their child goes into their final year of primary, more so when you have a child with Down Syndrome then it was worth it. These emotions are yours, accept how you feel and reach out to other parents, if need be, who have been there too. You can always contact me for a chat too, you can message me https://www.facebook.com/ShazandEllie/
Thank you as always for taking the time to read and do let me know have you gone through these emotions yet as your child went into year 6?
Until Next Time Sharon x
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