If I Knew Then What I Know Now!

It’s a common saying isn’t it? ‘If only I knew then what I know now’ but this couldn’t be more relevant to me as I recently celebrated my daughters 10th birthday. Ellie was born with Down’s Syndrome and diagnosed a few hours later; for those parents in the same situation you can only imagine the thoughts that ran through my head at that time (but that’s for a different post).

So I wanted to share with you some notions, with the help of other parents, that I wish I had known back then, in case you are reading this as a first time parent.

Ellie on holiday aged 2

One important thing to remember is your child is unique and has your genes, so whilst there will be similarities with others born with Down’s Syndrome they will be more like you than you realise. In addition due to the wide spectrum of learning difficulty in Down’s Syndrome you cannot predict what your child will or won’t be able to do.

From a mum, here are her words “There is no need for fear, my son brings me more joy than anyone ever could…..he makes me proud every single day.”

You may become or you may not fixated with milestones (I sure did) but when your child hits them, and they will in their own unique way; you will be over the moon, jump up and down, record it and cry with laughter 🙂

Other parents with a child with Down’s Syndrome will become your best friends as they understand exactly what you’re going through. I can strongly recommend joining a supportive group as soon as you feel ready (one link is below and another in linktr.ee/shaz_crowley)

Forget the myths and sterotypes; most people with Down’s Syndrome are living a completely different independent life to those from only a few decades ago due to medical progress, interventions, inclusion and technology; Ellie is a whiz on her ipad (see previous blog)
https://sharoncrowley.wordpress.com/2019/05/08/challenging-some-myths-and-stereotypes-around-downs-syndrome/

Yes there will be downs as well as ups, yes there may be lots of appointments, health issues and other additional needs to contend with but from one mum to another; you can do this. Have faith, trust your gut instinct every time and enjoy the delight of being a mum. There will be lots of happiness to come and your child will not only enrich your life but everyone else they meet. They will give you some fresh ideas on life and expectations so believe that everything is going to be alright.

Pouty

A special thank you to the parents of this group (#wouldntchangeathing) for their words of wisdom and insights
https://www.facebook.com/wouldntchangeathingdotorg/

Thank you as always for taking the time to read and if you would like to connect with me, connect via @linktr.ee/shaz_crowley

Until Next Time
Sharon x

Challenging some Myths and Stereotypes around Down’s Syndrome

After having my daughter Ellie I was suddenly surrounded by a lot of outdated facts, myths and stereotypes of Down’s Syndrome; some made me laugh and many I chose to ignore. However 10 years later I have chosen to challenge those myths.
First let share my thoughts as a parent and to offer some education.
Please note everything written here is just my opinion, however many myths have been contributed by other parents.

So let’s begin with the most popular one; all people with Down’s Syndrome are always happy and loving. All I can say here folks is ask a parent! All our children have every emotion just like yours, they are angry, frustrated, cry, have tantrums and can be very annoying (sound familiar?)

Another stereo type that may have come from the medical profession or just an outdated view was when another mum was informed that her child would not come to much. Seriously??? Have you seen the actors, the dancers, the pianists, and not forgetting the legend Sarah Gordy who received a MBE in 2018. Ellie is currently in mainstream primary, can read, do mental maths, spell, and goes to drama with her friends. She has achieved her 100m swimming certificate and recently went on her first field trip with school, without us.

One myth I admit to worrying about when Ellie was born, was what would happen to her as she got older. Yes our children are no longer taken to care homes to be looked after but would she live with us forever. It’s been a lovely surprise to see so many young adults including the awesome Heidi who moved out at 20 to live the life she wants here’s a link to her page
https://www.facebook.com/Heidi-Crowter-Living-the-Dream-473919313091896/

Another common myth about babies with Down’s Syndrome is they simply cannot breastfeed. I admittedly tried only once with Ellie and didn’t pursue it but other mum’s have had no problems showing every child, as we should accept, is unique.

Age; the common stereotype that only older females have children with Down’s Syndrome. I personally was only 34 (I don’t consider that old, do you?) and statistics show there are more females under the age of 35 than older that have children with Down’s Syndrome. Down’s Syndrome is a chromosome abnormality and therefore has little to do with age.

Children with Down’s Syndrome stay babies for longer, have you heard this – many parents might feel like this when given the diagnosis due to stereotypes, but again ask a parent if you want the truth. I feel Ellie turned into a teenager when she was 7 with all the same fun attributes of moodiness, stubbornness and emotions that you would expect from those teenage years. Others have said the same. Many parents teach their children age appropriate behaviour to try to dispel this myth.

All people with Down’s Syndrome look the same. Yes many children have similar facial features (slanted eyes, small nose), a smaller stature and may need support with their gross, motor and oral skills; however each child is unique and will have similarities to their parents and siblings just as much.

So there you have it, some very common myths and stereotypes of Down’s Syndrome challenged. My last thought on this matter is terminology; a person is a person not a Down’s Syndrome person or a Down’s; a better way of saying something that is similar is ‘Here is Ellie, she has Down’s Syndrome’ – person first.

Thank you for reading and as always if you would like to connect, connect with me via linktr.ee/shaz_crowley.
Do you think I’ve missed one out, comment below? Until next time,
Sharon x