Secret Summer Holidays to Enjoy with Down Syndrome

Summer holidays are something to look forward too, aren’t they?
When you have a child with Down Syndrome you may just wish to consider a few other things before booking. If you are anything like me your holiday choices come with a list as long as your arm in addition to sunshine and cost from

  • Daytime flights (Ellie will not fall asleep on a plane)
  • Not to far from the airport (as my children are young the quicker we get there the better)
  • No hills to climb (this would just cause a lot more energy)
  • 2 bedroomed accomodation (Ellie fights her sleep unless she realises it’s bedtime)

The Lanyard Explained
Have you got yours?
I only found out about this recently and I think it is a fabulous service offered. The lanyard helps all airport staff assist a child with a disability (including unseen ones) and the family with extra support including reduced queuing times. This is perfect for children with Down Syndrome who just don’t comprehend the reason for queuing or have little patience to do so. I have since heard that Manchester Airport has now opened The Sunflower Room which helps those families that need to avoid noise and crowds because of their disability.

The Lanyard

Holiday Secrets
Each child and family are unique in what they are looking for from a holiday but you may find that when one destination fits you revisit it time and time again. I personally have found that Greece is ideal for us a family. Usually a family run hotel in a quiet area with the sea nearby and it must have a pool. Other places highly recommended by other parents include

  • Orchard Holiday Park in the Isle of Wight
  • Golden Valley in Derbyshire for camping
  • Butlins in Skegness
  • Centre Parcs
  • Lake District
  • Loch Lomond in Scotland
  • Florida
  • Newquay Wales
  • Menorca
  • Ribby Hall in St. Anne’s
  • Haven and Park Dean holidays camps in Dorset
  • EuroDisney
  • Canaries
  • Portugal

If you would like to see where you can get free admission as a carer, please refer to my previous blog
https://wordpress.com/block-editor/post/sharoncrowley.wordpress.com/907

Your Journey
What I love about children with Down Syndrome is that their likes and dislikes are all different so what will work for one child might not another. This is my own experience when we’re travelling, first I like to pre-warn Ellie of what we are doing and what is going to happen. When she was younger I would show her pictures of a plane or a video of a campsite so that she knew what to expect. Her Ipad is like her right arm as Ellie doesn’t enjoy crafts, so I will download as many video’s/games/educational apps as possible and ensure it is fully charged. We often carry a charge pack and ear phones too. Ellie amused me early on with plane journeys as she absolutely loved the butterflies we all experience with turbulence, I on the other hand do not!
I also ensure there are plenty of treats/food and drinks to hand.

Finally
I always take plenty of relevant medicine on our family holidays including Calpol and Piriton which have come in handy with bites and high temperatures and whilst it is no longer needed, in previous years I have had to inform our travel insurance where we were going as Ellie has a VSD.
Now there is no talk of surgery and no medication, this is no longer relevant so always find out with your travel insurance what do they need to be aware of.

I hope you have found this article useful. I would love to know if you holiday regularly to the same destination so I can add it to my list or if you are an inclusive holiday that would like to share your destination.

As always, thank you for reading and until next time
Sharon x

Self Care for a Carer

Self Care, what is that I hear you say? Well let’s talk about why self care is important and those little activities that you can incorporate into your every day life to take some time out from being a carer and should put a smile on your face.

Let’s start with what is self care? I have to admit, in my humble opinion, I believe self care has become a ‘buzz word’ of today that has been recently created but I still feel it is extremely important for survival as a human being, even more so as a parent and vital as a carer.

A definition of self care – the practice of taking action to preserve or improve one’s own health.

Now, how important was that for you to hear, ‘improve one’s health.’ As a carer you have to spend a lot of time looking after someone else’s health and needs; either older or younger and in addition to your own health and more often than not your own family.

Don’t get to this

Why is self care important? You may have heard the phrase if you’re running on empty how can you help others’ and that really is the simplicity of it. You cannot complete your role as a carer from your sick bed. Therefore it is vital to stay as healthy as you can and understand when it is time to take a step back here is what one mum said recently about self care.

I got myself into this really negative place where I’d just feel guilty and shit, that I wasn’t doing enough all the time. I’d get stressed super quickly because I put myself under so much pressure, then shout, then feel more rubbish and so on.

So I consciously took a step back and really focused on all the stuff I do that’s great, or even just the stuff that’s OK, normal stuff! We do so much every day that takes physical and mental effort but I definitely only focused on all the stuff I thought I wasn’t doing x

Next let’s look at what activities can be classed as self care and whilst some of these activities might seem unusual even ordinary to you, they do work for a few parents that I know. Self care is vital and it needs doing regularly for both our health and our sanity. There were several categories that were considered ordinary to turn to from crocheting, to hitting the gym, to even enjoying the (occasional or daily) glass of wine. Reading was another important wind down whether done before bed or sat in the car whilst playing taxi service.

Other additional self care activities that some might not even consider activities were watching the TV, simply eating, getting a decent sleep, having a shower or even a warm cuppa. Some considered more extravagant self care activities from pamper massages, spa breaks to drinking champagne and even hitting the beach. Gardening, horse riding, singing and yes it was said ‘locking yourself in the bathroom’ (we have all been there!), were many of the activities chosen from carers, hopefully there will be one that will suit you too.

Whatever activities you do decide on, choose to do some daily, some weekly and some less often, but do them. These self care activities will help you, maybe slightly, help your health, reduce your stress as a carer and just maybe put a smile on your face.

 

As always, thank you for reading and I hope you have found some value in this. I would love to know if you leave a comment, what your favourite self care activity is or message me directly via any of the links @linktr.ee/shaz_crowley

Until Next Time
Sharon x

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