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

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

Disney Character; who is Ellie's favourite?

When Walt Disney created Mickey Mouse, little did he know what a Disney Empire he would be creating and who would have thought it would capture the hearts of so many children years after. The first Monday of every December is International Walt Disney Day and to celebrate I thought I would talk about who is Ellie’s favourite Disney character and see if you can guess.

Describing the Character
First and what will become blindingly obvious is that this Disney character is female and a major player in a Disney film. The film itself was a huge box office success in 2013. The soundtrack to the film featured 10 original songs and one song in particular won an Academy Award, Grammy Award and Golden Globe Award. Are you close? This female in my opinion, leads the film and is both strong, sexy and sassy,
In addition she is quite different to other Disney Princesses that you may have seen in previous films. For me, she steps all over the stereotype of what a princess should and shouldn’t do and anything that steps away from the stereotypes I share.

Guessed Yet?
If not, here are some other clues; this Disney Princess has a sister and lives in Arendelle!
Yes, that’s right it’s Elsa; Princess Elsa.

Disney Princess Elsa

Now that we know which female Disney Princess we are discussing to celebrate Walt Disney Day, why does Ellie choose her as her favourite?
I personally found Elsa’s character in the film very strong and determined. The film itself (incase you haven’t actually seen it) begins with Elsa’s powers, which is freezing items and she struggles to control them. Due to an unfortunate accident where she hurts her sister, Elsa chooses to avoid her for the rest of her life, even if this means isolation for herself.

During the film and due to a turn of events, Elsa chooses, as a strong independent woman to live alone for fear of hurting others. During this phase of a life alone the Disney Princess has internal struggles believing she cannot be her true self. The change in character throughout the film is inspiring to watch; from a frightened child, to a runaway teenager into a fierce woman as she takes on many men in the bid to not be imprisoned.As you can read the film shows an evolving character who has many emotions, which can all be identified as a child; self belief, loneliness, being afraid.

Whilst adoring the amazing power of Elsa’s character through her transformation, her freezing powers cannot go unnoticed to another strong Disney character; a Disney Queen that could also freeze people; The Snow Queen. It is this film in which the Frozen film was built upon. However whilst Elsa’s freezing powers could and do hurt people they can also do good, once controlled as you will find out as you watch the film

What is a Princess Stereotype?
Many Princesses in Disney fall in love with a man and live happily ever after; whilst Frozen did have a happy ending it wasn’t from a love interest as Elsa had none. She didn’t need one! Elsa’s character literally carried the film with another strong female, her sister Anna. Therefore both Elsa and Anna have become amazing role models for girls globally; girls you can be free, girls you can be yourself and girls you don’t need a love interest to be considered successful and strong.

Since Elsa’s character was that of a strong woman and with the unforgettable soundtrack of the film, Frozen has become a firm favourite in our house; even more so that for my daughter Ellie. Frozen was the first full film that has kept her attention and enjoyment and as Ellie has Down Syndrome, usually 20 minutes is enough for her and that memory of her watching the film is one I’ll never forget.

Conclusion
In addition to the film’s soundtrack and storyline, Princess Elsa is Ellie’s favourite Disney character becasue she doesn’t fit the stereotype; she is her unique self

Ellie and Olaf

Thank you, as always for taking the time to read. Is Princess Elsa your childs favourite Disney character too, do let me know?
If you would like to follow Ellie’s journey, follow her here
https://www.facebook.com/ElliesSecrets/
or you can see what Ellie thought of her recent make over here
https://t21hub.com/2019/09/16/a-review-of-ellies-inclusive-pamper/

Until Next Time
Sharon x
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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

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 🙂