This week we have a blog written by Sharon Crowley, who runs the T21 Hub website. Thanks to Sharon for sharing this with us.
My blogging journey is all about educating people about Down Syndrome and I thought one 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 Wouldn’t Change A Thing parent support group on Facebook. Together we devised this A-Z of words that we associate with having a child with Down Syndrome.
We hope you like and as they say…
“Let’s start at the very beginning, it’s a very good place to start……”
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.
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 roll.
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 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.
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 have motivated me more with what 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.
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.
U – Unique; whilst facial characteristics are similar that is where it ends. Each child with Down Syndrome is unique in their own 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?
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!