Those First Few Days to Help You with a Child who has Down Syndrome

Are you a first time parent to a child with Down Syndrome? You may have known about the diagnosis during your pregnancy or found out afterwards, like I did….either way I would strongly suggest turning off google, putting any leaflets away you’ve been given by the professionals and read on. This blog is for you and is not just written from my own personal experience but from shared parenting secrets to you from many that have been in your shoes.

Congratulations, you have a newborn! Now if like me this child is your first you’ve probably got ready or possibly even read the ‘parenting handbooks’. Put them away in a drawer for now, even if your newborn is not your first child; grab a brew and read these top tips that many parents of a child with Down Syndrome begin with

‘treat your child like you would any other child, through each and every stage. See past the diagnoses, love and discipline just as you would your oldest’

Ellie, days old

Enjoy your beautiful baby as that is what you have in front of you, a beautiful baby.
Stop worrying, stop reading and stop googling; take each day forward and when you’re ready to learn more; consider joining a supportive group such as
https://www.facebook.com/groups/801281006738525/?
to ask any questions you have from those that have lived through them.

Another main point that many parents agreed was to enjoy every minute, like everyone else your child will grow up just as quick. My daughter Ellie has just turned 10 and I feel like I’ve blinked. Additionally in those first few days and maybe even longer don’t refuse help; you may be emotional about having a newborn even without having a diagnosis of Down Syndrome, so don’t try and play super-parent and do everything, take help when offered. The storm of emotions you will be going through will pass and things will get easier, we all promise you that. Just breathe and hold your baby.

Be kind to yourself and one thing that personally worked for me was talking to my husband openly and honestly about how I was feeling. Emotions such as sadness, concerns, worrying too much about the future; you may even have health problems (Ellie has a hole in the heart) but don’t be scared and don’t look too far ahead. Cuddle and ‘squish’ your baby and enjoy the magical journey that you are on.

As your baby gets older day by day, don’t stress the small stuff, the milestones, the appointments; go to baby groups, the park and find other parents that will support you. Trust your parenting instinct always and remember your little bundle of joy will be as unique as everyone else so take those photos and videos and give yourself and your child time to get into your routine to begin your journey.

And finally,

‘look forward to the most enthralling, frustrating, beautiful, fulfilled, exciting, worrying, scary, proud, enriching and varied life journey you’ll be privileged to be on with your baby.

If reading this has helped you in anyway, please comment below or get in touch with me through any platform via @lintr.ee/shaz_crowley. Thank you to the parents of the above group #WCAT for helping me put this together and as always, thank you for reading.

Until Next Time
Sharon x


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