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 🙂

Inclusion in the High Street, does it exist?

Inclusion in the High Street,  does it exist?
In years gone by where many people with Down Syndrome have not been recognised for their attributes, their personality or their uniqueness; certainly not on social media and most definitely not on the high street with their advertising, pah!
But times are changing, albeit slowly, but they are changing. The high street are now starting to see individuals for who they are, individuals. They are beginning to be more inclusive as they ignore the label, the stigma of having a model with a difference and giving children and adults alike to be seen, to take centre stage just like their peers.

Why, Not Back Then?
As I was growing up, I do not recall ever meeting a person with a disability. I certainly did not know what Down Syndrome was. Had I led a sheltered life, I don’t believe so but maybe my eyes were closed? Why did the high street not use models with Down Syndrome to showcase their clothes and products? I don’t know the answer, there could have been a policy that discriminated against disability. Yet it seems more likely there were several other reasons as to why people with Down Syndrome were not considered, from the logistics, the unknown, to the fact that there not many models with Down Syndrome actually on any modelling agencies? Who knows?

Why Is It Important Today?
Quite simply, times really are changing, many are tired of seeing the same type of specific model advertise, you know the one, and the public have spoken, ‘We are not all the same shape and size and if you want to continue to get our money then we want to see more people like us – unique and individual’ (They might actually be my words but you get the drift). The high street listened and some started to offer advertising to a variety of models of size, shape, ethnicity and gender. The public started to see models just like themselves. This is so important for our future generations to understand that we are all different yet we all all can inspire others.

Here are some High Street Names & Businesses that are inclusive and have models with Down Syndrome on their portfolio

  • Very UK
  • Welshblood.org.uk
  •  M&S
  • Spanish Boutique
  • Little Betty’s Boutique
  • F&F
  • Rebecca Leigh Photography
  • Peekaboo
  • Sainsbury’s
  • Primark
  • Zebedee Management

Can you name anymore?
Inclusion in the high street does it exist, yes it’s getting there but as always more needs to be done. Thank you as always for reading and a huge thank you to the parents of the group  #wouldntchangeathing
(https://www.facebook.com/groups/801281006738525/)
for sharing these pictures below.

Until Next Time
Sharon x

Here is supermodel number 1
Here is supermodel number 2
Many supermodels

Taking Action

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.

However after various conversations and finding a Facebook group which provided this support, for secondary school age (see here)
https://www.facebook.com/search/top/?q=fod%20secondary%20school%20age%20support&epa=SEARCH_BOX
it appears there is plenty of material out there, just maybe not advertised as much which I could find and share.

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.

Activities

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