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.
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
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 email@example.com
After 10 whole nights and days I felt I had to review our family summer trip to Gouves, giving an honest account of whether it is an inclusive complex for a child with Down Syndrome.
August 2019, our summer trip back to Gouves which we know is quiet but that’s what we love, as a family we don’t do hustle and bustle but this holiday was going to be slightly different to what we were used to. Why? Usually we book a small family villa with one pool so we can get to know the other the staff and other families. This year as we had left it a little late to book we had a water park…..would we enjoy it, would it be inclusive? Read on to here my review.
Arriving very late we were greeted by a porter who helped us with our luggage and advised by reception that there was a cold buffet awaiting for us. The bar was open and we could purchase drinks as the all inclusive finished at 11. I thought this was very courteous after a long day travelling and immediately could tell the difference between a 3 and 4 star accomodation.
Reviewing The Hotel
The next morning we were greeted with sunshine and right outside our 2 bedroomed appartment (much needed as Ellie, my daughter who has Down Syndrome, needed here a bedtime routine) was our view.
On the first day we had a good look around, isn’t that what most families do, ‘find their feet’. I shouldn’t have been surprised, but the hotel was huge, with different areas and was immediately concerned about how Ellie would cope. In fact we didn’t even find two of the bars advertised or one of the restaurants and thought it was a shame that a mini map wasn’t issued at arrival.
On the second day we found a part of the water park, which I thought the kids would love but they never wanted to go back after one afternoon 🙁 I’m guessing a few scrapes and burns from the slides didn’t help but it was small enough for Ellie to access the steps independently and we had eyes on at all times.
The larger slides were a hit with my son Billy but Ellie wasn’t that keen after the first go. Maybe it was the waiting in turn that put her off as normally she is a water baby. However I did find the lifeguards and the queuing system a reassurance.
The food was incredible and I have to say one of the best we’ve ever tasted, different themes and often cooked whilst you waited. My only concern during August was how busy it was. Some days you felt like you were packed like a tin of sardines and often was left waiting to get items or banging into people. To give the hotel credit it did say what times were quieter for those that needed it. However I couldn’t trust Ellie to get her food by herself.
Reviewing The Staff
Once we had settled into holiday life it was nice to begin to get to know the staff and the animation team. The kids club which was open every day (am & pm), and whilst at first I was worried at leaving Ellie, the team were amazing and got to know her and what she enjoyed. Billy, her younger brother really enjoyed the club especially learning his new card game Uno and wanted to visit most days. This is a great facility when you want some shade for your children or just some me time. The entertainment was provided daily in the main pool, which we didn’t join in (we preferred it quieter) and having several pools helped. The mini disco at night, again was too hustle and bustle for Ellie and I have to point out though that on our last night, one of the ladies actually stood with Ellie so she could have a dance without being jostled proving just how much the staff wanted everyone to join in; inclusion.
Conclusion of the Review
Apart from the hustle and bustle at dining and some of the rude people we encountered I would definitely recommend this hotel. Overall the staff were helpful, the hotel was kept clean with regular maid service. However I wish I had known beforehand that two of the restaurants you actually had to pay for drinks (Smile on the beach and the Asian A La Carte ). The shop was fully equipped and there was plenty to spend your money on (yes I know it was AI) including arcade games, additional drinks, and extra’s for the kids such as slush and named ice-creams. All in all it was worth the money, it deserves it’s four stars and if you like water parks this is a hotel for you and for me and Ellie it was a thumbs up on inclusion.
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?
The first chapter with Ellie is something I’ve wanted to write for a long time but it’s not a happy story to begin with and I’ve debated with myself often but have decided it is always best to be open and honest, so please do continue if you really want to hear the truth.
I was 33 when I got pregnant with Ellie, I thought I was young but understood my biological clock was ticking. I had the regular 12 and 20 week scan which were ‘normal’ and I think I was asked about a blood test (it’s vague) but was reassured it’s unusual for someone to have any problems, therefore I declined.
After a very short labour I was delighted, I have a baby girl ( we knew due to the scan) and we had a name already picked out, Eleanor. I recall, whilst being stitched, texting my friends the good news. I also remember vividly Jason (my husband) pointing out that she had a ‘flat head’, my mum reassured me it was nothing and I tried to breastfeed but it wasn’t happening. A few hours passed and I went to have a shower.
Upon return there was a pediatrician with a trainee examining our baby. I sat watching with Jason, as they appeared to be going through a checklist. Every few seconds, the pediatrician would turn to his trainee and, pointing to something on Eleanor, would declare “mongoloid”. Mongoloid, mongoloid, mongoloid, mongoloid, again and again and again, purely for the benefit of the trainee’s training, this eventually reduced Jason to tears, I knew something was wrong. After an eternity, the pediatrician turned to me and simply stated “Your child has Down Syndrome. Normal child is strong. Your child all floppy”. I looked bewildered, I had never heard of Down Syndrome and at this point Jason was sobbing so I knew it wasn’t good. I sobbed with him and all I could think of was this must be some type of a disability; I had a disabled child.
The nurses were polite and asked did we want to go onto the ward or have a private room. I asked for a private room. I won’t lie the next few hours involved lots of crying and actually realising I did not know what we were going to deal with. The only thing I do remember is everyone asking ‘Did you not have the blood test?’ I felt it really was all my fault.
After several hours a nurse asked if we had fed the baby, we hadn’t and she hadn’t even cried. We were advised how best to provide the bottle due to Ellie’s large tongue, Jason fed her as at this point as unfortunately, at that point, I felt no attachment. Jason was in charge of telling the family who were very supportive which made me cry even harder. I did not want a child with a disability. Without knowing and in hindsight I had a stereotype mindset of what a child with a disability was and the picture wasn’t a good one. I didn’t know if we could cope.
For three days we were in hospital to ensure Ellie, her new name, was feeding well. We had decided on day 2 to change her name as we felt that the journey we thought we were going on had vanished and were now on a new pathway. On this day, I asked for some literature about Down Syndrome so I could get my head around what I was dealing with. It wasn’t nice, it was an outdated literature that explained practically how many issues Ellie was going to have to deal with from heart issues to sight, hearing to name a few. I continued to cry.
By day three I had chatted to Jason about our options, what could we do, we discussed adoption and we discussed doing our best. We knew deep down we couldn’t do anything but have Ellie in our life even though it wasn’t what we had planned. Friends were supportive and some family members said ‘She doesn’t even look like she’s got it’. We had to give blood tests at the hospital to confirm the diagnosis and I remember 100% the trainee taking the bloods saying ‘It could be 50/50 this’ and I clung to that hope.
By day three I was ready to go home, but we couldn’t unless Ellie had drank 50 ounces of milk. She finally did. Hooray! Jason picked us up and in the car I felt scared and alone, I had never had a baby, let alone one with Down Syndrome.
We were told we would get the results from the blood test on Friday, first thing that morning I was on the phone thinking ‘It could be a mistake, it might be Mosaic Down Syndrome’ ( which means there’s a mixture of cells affected by trisomy 21 ) and after several hours of anxiously waiting we finally got the call; the blood tests proved, Ellie has Down Syndrome. I sobbed.
I tell this from truth and from memory. I had never heard of Down Syndrome. I was never given any positivity towards the disability. Jason had only seen a home from his early child hood days where people with Down Syndrome were kept away from society and he remembered it well. The future looked bleak but it isn’t. Ten years on and Ellie is Ellie, she is my super hero and my pain in the bum. I certainly wish I had known back then what I know now. I wish the professionals had been more positive. I wish I had known and understood that people with Down Syndrome today are educated and included within society a lot more than they were back in the 1960s. I truly wish I could have celebrated Ellie’s birth way more than I did and that is why we go all out each and every birthday.
We really wouldn’t be without Ellie these days, she is our daughter, she teaches us so much each and every day. She is not a blessing; she is a young girl with her own mind and just needs a little extra help with her extra chromosome. Ellie has not only changed our lives but everyone she meets, we have been included in an extra special community that I did not know existed. I personally have learnt so much in these last ten years than I ever would have done without Ellie.
To Ellie, if you ever read this, I wanted to be honest to other parents to show them that all feelings, good and bad are human and allowable. We love you more than you will ever know and go show the world what a truly extra special person you are. Love mum & dad 🙂
It’s a common saying isn’t it? ‘If only I knew then what I know now’ but this couldn’t be more relevant to me as I recently celebrated my daughters 10th birthday. Ellie was born with Down’s Syndrome and diagnosed a few hours later; for those parents in the same situation you can only imagine the thoughts that ran through my head at that time (but that’s for a different post).
So I wanted to share with you some notions, with the help of other parents, that I wish I had known back then, in case you are reading this as a first time parent.
One important thing to remember is your child is unique and has your genes, so whilst there will be similarities with others born with Down’s Syndrome they will be more like you than you realise. In addition due to the wide spectrum of learning difficulty in Down’s Syndrome you cannot predict what your child will or won’t be able to do.
From a mum, here are her words “There is no need for fear, my son brings me more joy than anyone ever could…..he makes me proud every single day.”
You may become or you may not fixated with milestones (I sure did) but when your child hits them, and they will in their own unique way; you will be over the moon, jump up and down, record it and cry with laughter 🙂
Other parents with a child with Down’s Syndrome will become your best friends as they understand exactly what you’re going through. I can strongly recommend joining a supportive group as soon as you feel ready (one link is below and another in linktr.ee/shaz_crowley)
Yes there will be downs as well as ups, yes there may be lots of appointments, health issues and other additional needs to contend with but from one mum to another; you can do this. Have faith, trust your gut instinct every time and enjoy the delight of being a mum. There will be lots of happiness to come and your child will not only enrich your life but everyone else they meet. They will give you some fresh ideas on life and expectations so believe that everything is going to be alright.
After having my daughter Ellie I was suddenly surrounded by a lot of outdated facts, myths and stereotypes of Down’s Syndrome; some made me laugh and many I chose to ignore. However 10 years later I have chosen to challenge those myths. First let share my thoughts as a parent and to offer some education. Please note everything written here is just my opinion, however many myths have been contributed by other parents.
So let’s begin with the most popular one; all people with Down’s Syndrome are always happy and loving. All I can say here folks is ask a parent! All our children have every emotion just like yours, they are angry, frustrated, cry, have tantrums and can be very annoying (sound familiar?)
Another stereo type that may have come from the medical profession or just an outdated view was when another mum was informed that her child would not come to much. Seriously??? Have you seen the actors, the dancers, the pianists, and not forgetting the legend Sarah Gordy who received a MBE in 2018. Ellie is currently in mainstream primary, can read, do mental maths, spell, and goes to drama with her friends. She has achieved her 100m swimming certificate and recently went on her first field trip with school, without us.
One myth I admit to worrying about when Ellie was born, was what would happen to her as she got older. Yes our children are no longer taken to care homes to be looked after but would she live with us forever. It’s been a lovely surprise to see so many young adults including the awesome Heidi who moved out at 20 to live the life she wants here’s a link to her page https://www.facebook.com/Heidi-Crowter-Living-the-Dream-473919313091896/
Another common myth about babies with Down’s Syndrome is they simply cannot breastfeed. I admittedly tried only once with Ellie and didn’t pursue it but other mum’s have had no problems showing every child, as we should accept, is unique.
Age; the common stereotype that only older females have children with Down’s Syndrome. I personally was only 34 (I don’t consider that old, do you?) and statistics show there are more females under the age of 35 than older that have children with Down’s Syndrome. Down’s Syndrome is a chromosome abnormality and therefore has little to do with age.
Children with Down’s Syndrome stay babies for longer, have you heard this – many parents might feel like this when given the diagnosis due to stereotypes, but again ask a parent if you want the truth. I feel Ellie turned into a teenager when she was 7 with all the same fun attributes of moodiness, stubbornness and emotions that you would expect from those teenage years. Others have said the same. Many parents teach their children age appropriate behaviour to try to dispel this myth.
All people with Down’s Syndrome look the same. Yes many children have similar facial features (slanted eyes, small nose), a smaller stature and may need support with their gross, motor and oral skills; however each child is unique and will have similarities to their parents and siblings just as much.
So there you have it, some very common myths and stereotypes of Down’s Syndrome challenged. My last thought on this matter is terminology; a person is a person not a Down’s Syndrome person or a Down’s; a better way of saying something that is similar is ‘Here is Ellie, she has Down’s Syndrome’ – person first.
Thank you for reading and as always if you would like to connect, leave me a message or get in touch via the Contact Page Do you think I’ve missed one out, comment below? Until next time, Sharon x
Taking action to achieve your goals is imperative but what if you don’t have any goals or understand what you want to do, how can you? Last week I wrote about my next chapter titled ‘The Next Chapter’ which you can see here https://sharoncrowley.wordpress.com/2019/04/24/changing-attitudes/ so this week I will start to explain what I have been doing.
My first investigation was to see where I could go locally that was dog free as my daughter Ellie, who has Down’s Syndrome is frightened to death of dogs. Whilst we, as parents, work closely with her to encourage her to be brave and to let dogs walk on by. It was beginning to feel disheartening to find many let their dogs off leads in public and more recently I spotted a dog in our local children’s park. That was the last straw, as they say and the day I began to take action. I emailed, telephoned and researched and then went live on Facebook with Ellie to explain our findings (see here) https://www.facebook.com/sharon.crowley.14/videos/vb.707793674/10157347055773675/?type=3
Next stage; journalling which began on a daily basis, often twice a day, just writing down my thoughts, what I wanted to achieve in life, who was I, could I inspire or motivate others? During this time I felt that most children with Down’s Syndrome were supported very well from birth through therapists, community groups and lots of resources from the Down’s Syndrome Association but I felt it was a different story once they became teenagers and this was something I wanted to address.
I then turned my attention to social activities as I didn’t believe I had seen many for teenagers with Down’s Syndrome, but once again there are a few but still a lot of work in this area needs to be addressed. A local Down’s Syndrome group advertises such activities in the South Manchester area, (see here) https://www.facebook.com/SMDSSG and these include movie nights, pizza nights and plenty of football action can be seen at Manchester City. In addition, I am hoping to restart our local Bury support group and work closely with parents to see what other ways we, as parents and carers can support our children to help them reach their full potential and be included in the community.
So that’s me for this week, until next time. Feel free to connect with me via @linktr.ee/shaz_crowley or share to anyone that may also find these links useful and thank you, as always, for reading. Sharon x
When you find your passion, the reason to get out of bed each morning, you will give it 100% focus and make plans and take continuous action. This is what I have found recently, as I became a little jaded with the path I was on so therefore I took some time out and now I am back to begin the next chapter of my work from home journey.
What has changed? Let me introduce myself especially if this is the first time you are reading my blog. I’m Sharon, mum of two and full time carer to my daughter, Ellie who will be 10 next month. Ellie has Down’s Syndrome and my life changed direction when I gave birth to her. Not only did I become a new mum at 34, but I had a child with a disability and a disability until then that I had not heard of. Fast forward ten years and I am now a work from home mum. I take both children to school, to their clubs and not missing Ellie’s appointments. After being in work full time since I was 16, becoming a full time housewife was not for me and as such an enjoyable journey working from home. Three and a half years of Network Marketing has helped me build a network of friends, business skills and a lot of social media tips but the passion for me wasn’t there in the end.
Which brings me right up to today. After a coaching call with @LeonaBurton from #mumsinbusinessassociation I was advised to journal daily and reflect on what I enjoy, what excited me, what I don’t enjoy too and with a tonne of personal development daily I chose to find ‘me’ again. I want to find something I can do that will help others, something that is inspiring to others and that brings me to sharing my version of ‘Changing Attitudes’, the inspiration derived from my children. I am now on a mission to help, with many others, change the attitudes towards people with Down’s Syndrome. In addition, help my daughter and others feel accepted, included and above all reach their full potential.
Do I know how, not yet? But isn’t that the exciting part? I’ve taken the first step and put this blog out there for you to read and I hope you will follow my journey as I plan to play big and share regular tips, ideas and inspirational stories from now on.
Thank you for reading, if you would like to connect with me, you can via linktr.ee/shaz_crowley and comment below if you know someone that has Down’s Syndrome.
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