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

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

Winter Wonderland at Center Parcs – The Review

After an amazing time at Winter Wonderland recently, I often get asked what is Center Parcs like as we have visited a few times now? Therefore I thought I would share my honest opinion and write a review.
Here is my review of Center Parcs, Whinfell forest’s Winter Wonderland.

First as stated, this is not the first time we, as a family have visited Winter Wonderland, this theme is usually available from month end November until December. Full details can be found on the website here https://www.centerparcs.co.uk/discover-center-parcs/holiday-locations/whinfell-forest.html

The Journey

Previously we went when the children were in a double buggy and as it was my husband’s birthday we thought we would give it another go. The journey from our location (Bury) is an easy one, straight up the M6 and it takes approx 1 hour 50 on a good run. The check in is always friendly with a map given in your welcome pack to guide you to your lodge. Initially if not been before it can be a little daunting as the park is a one way system, but driving through the grounds at a slow rate and following the signs will get you to your lodge . After driving to the lodge and unpacking, it’s time to dump the car in the car park ready to explore the rest of the weekend on foot or bikes as cars are not allowed.

The Lodge

The lodges themselves are ideal for us,as a family; we regularly choose a new style wooden lodge with 2 or 3 bedrooms and it’s all on one floor so no stairs for Ellie to worry about. If additional accessibility is required this can be arranged. Clean linen, comfy beds, wifi, and a log fire what more could you ask for? I often get asked about the price and yes it’s not the cheapest for a weekend away, but I honestly believe it’s worth it and that’s why we always come back.

The Wreath

The Activities

To help with the expense of the weekend, we often take up plenty of food and alcohol and it is rare we pay for any of the amazing activities as the free swimming paradise is enough. Slides, rapids, wave pool and food all available as well as free lockers in the swimming paradise. There is an option for plenty of cycling and walking in the natural landscapes and you will often see squirrels running past you. For the last few years we have used a bike carriage for Ellie to travel around and whilst she has now outgrown it I’ll keep you posted of what we use next.

Ellie’s carriage

Winter Wonderland

So let’s get to the point; the Winter Wonderland. Many of the forest areas are lit up with Christmas lights and decorations, each lodge has a holly wreath attached to the outside front door, Santa;s Woodland Village is available to visit with a festive atmosphere complete with snow machine to make it all the more magical.The walk through was fantastic for both photographs and creating memories. In addition to Woodland Village, every Sunday (weather depending) you get to see a truly awesome firework display (https://youtu.be/g-NcIYSRq3w) which really is magical and moving.

Winter Wonderland – The Village

Would I go again, without a doubt?
Would I recommend, strongly?
Would I say this is one of the best Winter Wonderlands to visit; damn right?It has fun, family and festivities; the staff are friendly and favourable and the place is just fascinating and a favourite.

I would love to know have you been? Has this review helped in anyway? Please do leave a comment and share. If you would like to see other places recommended this year, check out our summer holiday in Greece https://t21hub.com/a-review-of-gouves-water-park-greece/

Until Next Time
Sharon x

A Review of Mahdlo Youth Club in Oldham

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?

I recently saw Mahdlo advertise an activity for children with additional needs on a Down Syndrome community page https://www.facebook.com/search/top/?q=dswestpennine%20registered%20charity%201140539&epa=SEARCH_BOXand began to investigate immediately as I still can’t decide whether more facilities are needed or if they are out there and simply not being shared. Thus I went along for a visit with Ellie to get a feel for the place and here is our review.

The Building Review

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.

Conclusion

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.

If you have enjoyed this review and would like to see our review of our caravan holiday this year, check out https://t21hub.com/2019/08/14/a-trip-to-wild-rose-caravan-park-with-ellie/

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 sharonc3966@hotmail.co.uk

Recently I found out I was listed in the Top 100 bloggers about Down Syndrome https://blog.feedspot.com/down_syndrome_blogs/ so there will be plenty more blogs coming from me. To stay tuned, follow the blog.

Until Next Time and as always thanks for reading.
Feel free to tweet, share or pin
Sharon x

10 Reasons to Celebrate your Baby who has Down Syndrome

I write this as part of my new series, ten reasons. The main reason I started blogging was to educate people about Down Syndrome and this began when Ellie, my daughter, turned 10 this will become and I’ve decided this will be a new feature.
In addition, this title is one I have thought about for some time after reading the amazing article https://themighty.com/2019/07/celebrating-baby-down-syndrome-diagnosis/ and decided there were many more reasons that five, so let’s begin.

First may I just add that I wish I had read a blog post like this when we received our own diagnosis with Ellie because unfortunately it wasn’t pleasant, see here
https://t21hub.com/2019/08/17/the-first-chapter-with-ellie/

Here Are My 10 Reasons

  1. You have been given a diagnosis of Down Syndrome and you now may have a preempt view of your new life as a mum. Stop!
    No new mum can predict their child’s day let alone their future.
  2. You may begin to worry about your child reaching milestones, such as walking and talking. Stop!
    Each child gets to where they want to be when they are ready, including yours.
  3. You may start to worry that your child will grow up lonely, with no friends or social life. Stop!
    You are just about to join an exclusive community, the Down Syndrome community, which will have enough friends in there for your child, for you and for your family.
  4. You may be concerned about your child’s immune system and overall health. Stop!
    Your child may or may not need additional support, such as intervention and wearing glasses; remember there are many children these days that need help with speech and sight these days.
  5. You may be feeling overwhelmed, I know I did and not sure what to do next. This is completely natural. I would not suggest going on Google or diving straight into an outdated book. I would suggest simply holding your child that little bit longer for a cuddle even if you are feeling emotional.
    Here’s a book I would recommend though
    https://www.wouldntchangeathing.org/product/wcat-book-by-celebrate-t21/?fbclid=IwAR1dwSxdh4_k1XhU3CwYqtmMnqgxkGMee8GCUqKZ8YztF5c6nmc6-EmQmys
Here is my daughter Ellie, just a few days old doing what all babies do; sleep and look cute.

6 Do not stereotype your child, they will grow up to be more like you than different and most stereotypes these days are extremely outdated
https://t21hub.com/2019/05/08/challenging-some-myths-and-stereotypes-around-downs-syndrome/
7. You may be concerned about future independence, please rest assure that many individuals with Down Syndrome are living as independently as possible. They are going onto find employment, become celebrities and get married. Have you not heard of the amazing Sarah Gordy
https://en.wikipedia.org/wiki/Sarah_Gordy
8. Are you worried about siblings, new or future ones? Stop!
Speak to other parents and find out the same as I did, future siblings are not guaranteed to receive the extra chromosome, that’s only for the privileged. Most children go onto love their siblings even more as they develop a true bond.

Ellie with her younger brother, Billy aged 10. Their love is real and doesn’t count chromosomes.

9. You may feel that your child will not be able to take part in the community. Stop!
They can and they will, if you want them too. Many children go to mainstream schools and lots of after school activities are inclusive or tailored to meet the needs of all children. Ellie enjoys drama and swimming, she currently has performed with http://Bamboo Studios several times in front of large crowds.
10. You have a baby, a baby that has an extra chromosome, that’s all for now> Enjoy the journey and take the pictures even though I promise you, you will never forget a milestone like many other parents do.

To Summarise

I’m sure with the help of other parents we could get these top 10 reasons to celebrate your baby with Down Syndrome to 1000 and one day you might read that blog. If you are reading this as a new parent, try not to be scared even though all emotions and reactions are normal, accept them. Enjoy being a mum you’ve waited approximately nine months for this.

If you are an existing parent to a child with an extra chromosome, can you add in the comments an additional reason to celebrate.

Finally if you are reading this as not a parent to a child with Down Syndrome but know someone that may benefit from this blog and website, please share and help us spread awareness.

If you would like to connect with me personally, please go to my Work With Me page
https://t21hub.com/contact-me/

Until Next time and as always thanks for reading
Sharon x



A Review of Ellie’s Inclusive Pamper

We love to review places to give others an opportunity to see if the setting would be inclusive especially if, like Ellie, my daughter, you have a disability such as Down Syndrome.
So let’s have a look at Ellie’s inclsuive pamper with Flawless UK based in Manchester.

How The Inclusive Pamper Began

One of the community groups that we attend regularly was gifted a voucher
http://dswestpennine registered charity 1140539
and one Saturday evening I chose to purchase it for myself and Ellie. We have very little mummy daughter time as she is a daddy’s girl and once purchased I wondered whether she would even enjoy it. However when Ellie turned 10 I realised that she didn’t experience a lot of activities that others her age would and I wanted to rectify that and share how many places are actually inclusive.

The night before we went, I told her we had a surprise adventure happening the next day and in basic terms explained our pamper session. She sounded excited by it all which was a great start. The next morning getting ready, Ellie said, ‘I am nervous mummy’ Bless.

The Inclusive Review

After a stressful morning driving into Manchester and locating a parking spot given half the streets were cordoned off for a police investigation, I suddenly realised Ellie had never been into Manchester (another one to rectify but maybe when it was quiet). Arriving late and apologetically the staff were very welcoming and friendly and actually let me leave Ellie with them for five minutes whilst I returned to the car to park right out side their building (please note it had double yellow lines and I was using our Blue Badge)

We were offered drinks and the morning was explained to us both. Ellie was then given her own make-up artist, Natalie who began to talk to Ellie like she was an individual. Natalie asked Ellie questions, rather than me and whatever Ellie wanted in relation to her make-up and hair, she got. This was one of the main reasons I chose to write this blog and share; Natalie treated Ellie like a young lady that she is and I couldn’t stop smiling throughout the morning as it was a pleasure to see. Many people are not sure how to talk to Ellie and often think she wont answer so ask me questions instead.
They both talked music and films throughout the experience. Whilst pictures should not have been taken inside the studio, I did manage to get this one.

Ellie let Natalie curl her hair even though she gets head sore

What Did the Voucher Consist Of?

The voucher itself consisted of
– Complimentary Drinks
– A Make Over including nail polish
– Your hair styled
– Photo session with 3/4 outfits
– A printed photograph to take home, additional can be purchased

All in it can take about 3 to 4 hours.

The Photography Session

The settings and tools for this part were outstanding from beds, to chairs to feather boa’s and once again the ladies were very flexible. If Ellie didn’t want to do something she was adamant she wouldn’t do it. I personally had no idea what we wanted so I let the professionals lead the way.
As we were heading into the final part, Ellie did begin to have had enough so I called it and asked could we finish.

Conclusion

Over all the morning was fantastic and I would definitely recommend doing something like this with your children to help them experience what other children do. As for the staff, I couldn’t fault them with their friendly, welcoming and inclusive manner.
Speaking of inclusion, the only thing I would adapt would be the stairs going down to the building, maybe have a ramp to help anyone with mobility issues access the studio.
The only downside, if there was one to mention was the cost of the additional photographs; whilst I appreciated their quality it was difficult to say no, once you had seen them as you always want to hold onto memories of a day like that and thus the credit card sneaked out of my purse.

If you would like to purchase a voucher with Flawless UK, here is their link
https://flawlessstudios.net/

The Model

So there you have it, thank you so much for reading. I would love to know have you had an experience like this with your child, please do comment and if you would like to read more reviews from me then do press follow. You can also check out our inclusive review of our summer holiday here
https://t.co/RJ7vcbk31i?amp=1

Until Next Time
Sharon x

Do you have a child with Down Syndrome going into year 6?

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 🙁

This image has an empty alt attribute; its file name is Ellie-year-6-1-768x1024.jpg
Ellie, after wiping her tears

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

The First Chapter with Ellie

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 🙂