The A-Z of Words that Parents Associate with a child with Down Syndrome

My blogging journey is all about educating people about Down Syndrome and I thought what an effective way of doing this was to create a simple A-Z to parents from parents who are raising a child with Down Syndrome. It is a collaboration with the help from other parents in our Facebook support group Wouldn’t Change A Thing (see attached). Together we devised this A-Z of words that we associate with having a child with Down Syndrome.
https://www.facebook.com/groups/801281006738525/

We hope you like and as they say

“Let’s start at the very beginning, it’s a very good place to start……”

Let’s start with the beginning of the alphabet
A – Ability; just because your child has Down Syndrome does not mean that they are not able. They may have alternative ways of speaking, of learning and at times to reach milestones but trust me – they do have the ability. Simply give them the space, the means and the encouragement
B – Be Yourself; this is not just for your child who I firmly believe will never have an issue with this concept but more for you, the parent. Acknowledge the syndrome and then when you can, forget about it. Be yourself with your emotions, with your expectations and with the outside world….just be you!
C – Chromosome; yes Down Syndrome simply means that your child has an extra chromosome on chromosome number 21. The End.
It does not define them as you will see, if you continue to read.
D – Determined; take a look at every day skills which are required to perform simple tasks. Now take on a learning difficulty, sometimes an additional disability, smaller limbs and do the same task.
Well your child will do it as they are more determined than ever.

Ellie trying archery

E – Education For All; many parents worry about mainstream and schools for children with additional needs. All children with Down Syndrome need educating. We are no longer in the 50’s and there is more than enough proof that mainstream is working. Look at what is being achieved today. Schools and councils need to stop worrying about budget cuts and concern themselves with education for all.
F – Fun; who doesn’t have fun with their children (well when they’re not shouting at them)? To all new parents, this will become part of your daily routine.
G – Genuine; this I personally love as my daughter Ellie just says it like it is. I have been told on more than one occasion that she is kissing the baby in my belly (yes you guessed it…I’m not pregnant!) and more recently hearing ‘No thank you mummy, I don’t want to move my plate right now’
H – Happy; it’s a biggy. NOOOOO children with Down Syndrome are not always happy. Ellie cries, screams and has moments as much as her brother Billy and I beg you to ask another parent ‘Is your child always happy?’ and watch their eyes role.

Ellie’s serious face

I – Inspiring; I understand that most parents feel inspired by their children but those children that have Down Syndrome do need to put a huge amount of effort in to simply get to the same milestones as their peers. This could be physically, mentally and more and because of this they inspire us parents each and every day.
J – Jokers; I am not joking (see what I did there) children with Down Syndrome have a wicked sense of humour and whilst Ellie can be very dry, to the point and lateral she really can make you laugh out loud.
K – Kindness; the type of kindness that children with Down Syndrome currently have comes from the heart rather than for a favour.
L – Love; all parents have unconditional love for their children. Parents with a child with Down Syndrome have that little extra and they do become their No.1 fans.

Girls Trip

M – Milestones; it is every parents dream when their child with Down Syndrome meets a milestone (whatever their age) because they have worked so damn hard to get there. I personally cried when Ellie first giggled which then resulted in her crying. We shrieked when she started walking (I think she was 2.5) but without any other complications they do all get there in the end and as they get older it does get less of a worry.
N – Never, Never Doubt or Underestimate; I have watched some amazing videos recently which has motivated me more with Ellie can achieve. Our children can and will always surprise you.
O – Own Agenda; Each child has their own agenda, their own journey and their own way of doing things. You will see children bottom shuffle to get to where they want to go. You will see children with Down Syndrome just find ways to get what they want and in their own time no matter how much you push and shove. Encourage but don’t force and watch the magic happen.
P – Perfect; children with Down Syndrome are perfect in their own unique way to their parents and family and they really wouldn’t change them for the world. When families stop seeing that label (it took me a while) the magic begins.

Perfection

Q – Quite Brilliant; do I need to say more or should I change that to Extra Quite Brilliant
R – Resilient; truth! Many parents of children with Down Syndrome say their children are resilient, tough, bounce back easy enough and have the capacity to keep on going. Not a bad quality to have in a child don’t you agree?
S – Superstar; trust me you will say this one day, your child is a superstar
T – Truthful; now this is a fabulous trait when those words are kind however it has been said on more than one occasion from Ellie that she is happy for the baby in my tummy.

Ellie fighting pneumonia

U – Unique; whilst facial characteristics are similar that is where it ends. Each child with Down Syndrome is unique in their own unique way; from character to both strengths and weaknesses and you will not be able to tell this from birth.
V – Victorious; each year as a parent you will feel victorious, trust me.
W – Wouldn’t Change A Thing; ask 90% or more of parents and they wouldn’t change a thing about their child. I now 100% believe Ellie is Ellie and she wouldn’t be Ellie without that extra choromosome.
X – Xtra ordinary; that xtra chromosome provides xtra cuteness, xtra potential and xtra stubbornness don’t you agree?

Ellie s unique

Y – You Can Do Anything; without any extra health or mental issues each child really can do anything. Stop limiting your beliefs, let your child shine and believe anything is possible.
Z – Zest; great enthusiasm and energy. Enough Said!

Do you agree with this A – Z, could you write your own; could these be said for any child? I would love to hear from you in the comments or contact me today. Thank you to all the parents of children with Down Syndrome whom contributed on this A-Z and as always, thank you for reading.

If you have enjoyed this blog and are looking to understand more about Down Syndrome, please read Myths and Stereotypes
https://t21hub.com/2019/05/08/challenging-some-myths-and-stereotypes-around-downs-syndrome/

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 🙂