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

Featured

Dog Free Zones

I wondered how I was going to write this blog as it is something that is extremely personal to me and I’ll explain why as we go, but I didn’t want it to come across as controversial. In the end I decided to write from the heart and be open and honest. For the record this is just my opinion.

Why did I want to write about Dog Free Zones?
My daughter, who is now 10, for the last eight years has had a phobia of dogs. I don’t know how it happened but it did and has since got progressively worse, it has also been passed onto other animals over the years. I understand phobias are not pleasant for anyone but when you have a learning difficulty, as in Down Syndrome, calm rationality is not even an option.

Over the years I have seen Ellie have a melt down on more than one occasion. I have seen her shake from head to foot, scream the place down and cry in hysteria. It has not been pleasant to watch and has caused the family great concern. We live in a lovely area that has many fields, parks and pubs that are dog friendly so knew it was important to get a handle on this.

As time has gone on, depending on Ellie’s emotional needs some days she can actually stand still, stay calm and let a dog walk past her, some days she can run past dogs cheering herself on for being so brave, but there are still days that involve emotions which result from having a phobia.

So why am I writing this? 
I am writing this quite simply because Ellie is not the only child to have a phobia of dogs. Ellie does not have a phobia of dogs because she has Down Syndrome, many other children have this phobia too and I wanted to let all the dog owners out there understand what can be happening when you walk past with your dog and see a child screaming.

Actions and Considerations
First, please consider that a child is literally petrified of your dog, therefore saying “She won’t hurt, just pat it” and bringing your nice dog nearer to said child, doesn’t actually help. Please ensure your dog is on a lead if in a public place, I personally was told by the police that in all public spaces, all dogs must be kept on a lead and it is a criminal offence not do so. A good friend shared this link with me, which clearly states that in public spaces that have PSPO’s, a dog must be on a lead.

https://www.gov.uk/control-dog-public/public-spaces-protection-orders

Other actions to consider if you have a dog with you, is that if you are asked to put your dog on a lead because a child is frightened (just for a few minutes), please don’t ignore it. If a restaurant or park has a sign saying ‘No Dogs’ please don’t take your dog in there. My daughter has seen her brother get jumped by a dog, her brother be chased by a dog and a dog ran that ran that close to her one day, off a lead, that she pushed it away.

I understand this is a work in progress for our family and I know there is wider support out there such as The Dogs Trust but for now, please be considerate as we will too.

Information relating to The Dogs Trust

If you are in the same situation as my family, here are some places that are dog free that you can attend and enjoy

  • Most beaches on the Isle of Wight (during the summer) are dog free
  • Most beaches in West Wales have summertime dog bans (eg Saundersfoot, Tenby)
  • RSPB Old Moor in Wath upon Dearne
  • Cleethorpes Beach is dog free between Good Friday and 30th September
  • Butlins
  • Haven Burnham on Sea
  • Fairthorne Manner in Botley Hampshire
  • Brockholes
  • Lytham St Anne’s beach in the summer
  • Lytham St Anne’s beach in the summer

I hope as always you have found this useful and I would love to hear from you if you have any coping mechanisms or know of any Dog Free Zones that I can add to my list.
Thank you as always for reading and if you would like to connect with me through any social media platforms please click on the button

Until Next Time
Sharon x

Carer’s Allowance and Free Access

Are you a carer, do you know what you are entitled to as a carer? Not sure, then stay with me and read on. Hi I’m Sharon (if reading for the first time) and I am a carer to my daughter Ellie, who is 10 and has Down Syndrome.

A definition of carer in the UK is ‘anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support’ according to The Carer’s Trust.

As a carer you are entitled to Carers Allowance, which in the UK is £66.15 a week if you care for someone at least 35 hours a week and they get certain benefits. There are other criteria and please refer to https://www.gov.uk/carers-allowance for assistance.

After speaking to several mums I was curious as to whether this allowance was justified. I know it was needed for our family as it has become the income I lost giving up work, but at the back of my mind was always the thought, ‘why are we entitled to it’ and the next paragraph sums up why every carer is 100% entitled.

Many carers give up work, like myself, and this allowance subsidizes the family income. Some put the money towards travel for additional appointments, many use it for specific items that can help their child; sensory toys, private therapies, specialised clothing/equipment and a few put it towards their children’s future needs. So yes every carer should apply for that allowance.

So now you get the picture about the allowance, let’s talk free access. Now every young child generally can’t go to an attraction on their own, but most teenagers and young adults can however people with Down Syndrome may often need a carer for some supervision and with some help from this fabulous group https://www.facebook.com/groups/DLAchildrensDaysOut/
we have created a list of places where carers go free.
Please see attached as this will be updated

I would love to know if you have found this useful or if you could add to the list, please comment below and as always thanks 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