‘Tell It Right® Start it Right’ is an initiative created by the Down’s Syndrome Association. Since 2010 they have been delivering training days to antenatal screening coordinators and midwifery services throughout England and Wales. The aim is to ensure that health professionals have up to date, accurate and balanced information about living with Down’s syndrome.
On 13 November, over 60 midwives and health professionals from Swindon and the surrounding area took part in the study day which is accredited by the Royal College of Midwives (RCM). The hope is the training will improve the way that new parents are told that their baby has Down’s syndrome and assist them to support expectant parents through the screening process by sharing the information in a non-directive manner.
The Swindon Down’s Syndrome Group are facilitating the training in our local area. “We know first hand what it’s like to find out your baby has Down’s syndrome. To be offered a termination or told your child will be “a burden” is not what you want to hear moments after your child is born.
It’s so important to hear a balanced view, find out what life is really like for someone with Down’s syndrome. It’s every families right to make a decision about what’s right for them, but they cannot do that without all the information. We want to support women and their families at whatever stage they are at in their pregnancy to understand more about Down’s syndrome.”
Midwives got to hear real life experiences from parents from the Group, with many midwives commenting how powerful the parents’ input had been. They listened to a speech from one of the Group’s young people on what it’s like to have Down’s syndrome.
New parents may have lots of questions or feel rather overwhelmed by what it means to have a baby with Down’s syndrome. It can be difficult at first to see past the diagnosis which is completely normal.
The Group had on display their new parent congratulation packs. The packs are given to new parents on the birth of their baby. Michelle James, New Parent Contact for the Group said “I wanted the packs to celebrate the birth of the new baby and not overwhelm them with information. The pack has gifts for the baby, a blanket, milestone cards, congratulations card plus some information about Down’s syndrome.” The packs will be available at the Great Western Hospital and will be given out by the midwifery teams.
There was a real sense of engagement and positivity throughout the day, with many midwives chatting to parents and trustees from the local charity. Cailey Whitcher, Trustee of the local charity said “We hope the midwives found the day to be a valuable experience, something they can apply to their professional practice and something they will share with their colleagues at the Great Western Hospital.”
Day five, well where did that all go? Two weekends gone in a flash and with so many fantastic memories to take with us.
First a huge thank you to the group for the incredible book and t-shirt. What an amazing way to celebrate the 10th Salamander course. I know every young person will wear their shirt with pride as they have achieved so much in the 5 days. From a nervous start to a fabulous finish.
I need to thank the young people for their hard work and dedication. This year we accomplished so much. A fear of heights was overcome, the dark in the smoke house is not so bad after all, Coate Water wasn’t as cold as you expect and swimming to the other side is fine. Climbing to the top of the ladder and down again is always good when your team mates are there footing the ladder and telling you well done. All these things can be achieved with support from friends and determination from the young people. And they did!
So as usual we started the day with a great breakfast. Thank you Nicky for getting into work so very, very early to cook for us, everyone loved the eggs, bacon, sausage, beans and toast and some loved it so much they went back for seconds! Once the plates were cleaned it was down to changed ready to practice the show. It’s at this point the rain starts!! Once in kit it was into the classroom to go over the jobs the teams were doing.
Rain didn’t stop the high spirts and excitement of the up and coming show. The RTC was run through and everyone was happy with their jobs. Next the second part of the show was rehearsed and again it was if they had been doing this all their lives. They are confident and ready to show their families what they have learnt on the course. At no point did any of them complain about the weather, they were having fun, so no one was bothered.
I hope you enjoyed the show as much as we all did. I am so proud of them all. Next weekend isn’t going to be the same without seeing them.
I would like to thank Ed & Mike from the Police who were fantastic with all the young people. You were both a hit from day one. Nothing bothered you even when you can hear your name over and over again (Mike.) I think you both have a permeant fan club now. Thank you both for helping where needed but not doing it for them. You are both so patient with every single one of them. Thank you for giving reassurance and encouragement where need.
To all the Firefighters who put so much into this course to make it the incredible experience it is for each and every person who attends. Steve, Liam, Nathan, Nev, Sean, Martin, Dan, Ben, and Daryl. Thank you from the bottom of my heart. You are all my heroes, for putting up with me as well as our young people. Each one of you adapts to what is needed from your team each day. Your patience is wonderful, even when all around it seems like chaos!
Jo, thank you for your support this week, you have been incredible. Nothing is ever to much trouble and you have gained some new friends as well as seeing old friends. Thank you for being hands on and taking part in all those things you thought you may just stand and watch, they all loved you for being involved. I think there may have been some firsts for you this course as well!!
Mark, the man who makes this course the best course you have ever seen. The person who doesn’t believe in boundaries and pushes every young person to the next level to ensure they have achieved everything they can. You are fantastic with every single participant, nothing is too much trouble and if an activity needs changing a little so a young person can benefit from it, you do that and that means the world to them.
I’m not sure what we had in mind 10 courses ago when you were approached to do this, but I know that this now far out does anything I could have ever imagined. It is better than anyone could have the thought. I don’t think you really know what you mean to our young people. You have made dreams come true.
Nicky, we would not be celebrating 10 fantastic courses without your determination to provide something that would be so very different and challenging. You had the confidence in our young people and wow, it has really blown all expectations. This is the best course of its kind and it’s down to your belief in people with Downs, showing the world that there is nothing they can’t do if a little time, belief and patience is shown. Thank you for putting up with me all these years and thank you for letting me be part of this amazing experience.
So I say goodnight to you all for another year and thank you all for letting me part in these incredible courses and be part of your young peoples lives.
I raise a glass. x
How does this course go so fast? Even with the break in the middle because of doing two weekends it has shot past and today is the penultimate day already and what a fun packed one it has been.
I don’t need to mention breakfast really as you know how it goes. Vast amounts of lovely breakfast are consumed and they are ready for the day.
Straight down to get changed as now they are going to be let loose with the hydraulic cutters! For those parents who have not had their young people do this before, we have asked the young people not to convert any family cars into sports cars but please remove all sharp objects just in case!! Immy and Jane took to this activity very well, too well probably (I’m trying not to laugh while typing this as all I can hear is Immy giggling as she removes another section of car.) Popping the windows before they cut the car up is also another popular activity. This also provides huge smiles.
Meanwhile the other side of the yard one team is heading into the smokehouse to rescue the baby, who once again is lost. This time it’s dark and they need to put all their skills to use and locate the baby and bring it to safety.
Around the corner in the classroom there is a lesson on First Aid with Mark. Who do they call? Is it important and needing 999 or will your parents/carers be able to help? We are delighted to how much our young people remember from previous years.
Soon it’s that all important time again and lunch is ready upstairs, again they enjoy their food and it’s down to the classroom for a briefing on who is going to do what tomorrow.
I can’t tell you much as it will spoil the surprise, but of course there is water involved and yes you get to witness the baby being rescued along with a lot more.
A few tired young people today, so early nights for all as we have a busy and important day tomorrow.
Again, can I remind you to park in the County Ground car park for the show as space is limited. The engines come into the yard at full speed on tight corners, I would hate for cars to be damaged and have to be put at the back ready for the likes of Jane & Immy to cut up because they love this so much and fresh cars are what they are after!!
Also be prepared to get wet as the weather is not looking to good and the show is outside.
I’m looking forward to seeing you all tomorrow.
Here it is Nicky’s favourite day of the course, Coate Water Day.
Of course, we need a good breakfast, you just can’t go swimming without a good breakfast. Sausages, eggs, bacon, and beans…..Mmmm beans and dry suits..!!! If water can’t get in, nothing comes out. I will leave you to your own thoughts on that one.
After breakfast it’s downstairs to get ready. As most of you know by now there is a lot to get on, a very fetching fleecey onesie to keep you warm in the water, then the dry suit, and then the shoes and a buoyancy aid jacket and gloves, oh and the helmet.
Once at Coate water it was time to get the suits done up and helmets on. Lucky we checked wasn’t it Cory & Mike! Could have been a very interesting moment as we entered the water…..
Off down to the water’s edge to do some rescuing. Ed, Mike & Steve needed rescuing. They all get a chance to throw the line in and pull the guys back. Some managed it well others did well not to follow the line in as they threw it, but all was good and Ed, Mike and Steve are safe and well.
There was some great endurance swimming from the group and some even made it across to the other side and back, while some were happy to splash about and sit on the walkway and be pulled around the water. We also saw some great swimming on backs having rescued a partner and swimming to safety. Immy and Jane made a great team and showed excellent rescuing.
The suits are designed to keep us all dry, well the girls didn’t find that at all, each one of us was a little damp to say the least when we got back.
All to soon it’s time to go back and have lunch ready to start the afternoon activities.
Blue team got to help clean the kit down while Red and Green watched a safety DVD and had a go at identifying hazards and planning fire escapes. Watch out for the Blu-Tac people so lovely crafted by Nicky & Mile! There talents are endless.
I hope they have enjoyed it all so far and you are ready for more action by next weekend.
These young people amaze me every day. The teams have bonded so well and they sit and chat and make each other laugh as soon as they get upstairs to breakfast. Gone are the days when we had to get a team at a time to do jobs, now it’s done without asking. Sophie on cleaning today, the tables were wiped to perfection.
As soon as the room is clear after breakfast it’s time to head off and get changed for the fun bit of the day. I love High Tower day.
Now for the last few years we have headed over to Westlea to do the tower, but today we used the one on the station. I’m sure it’s so much higher than Westlea but it’s probably not.
How brave are these young people? Each one of them had a go and practically all of them came from the top. Charlie was adamant he wasn’t going to do it but amazingly came from half way and enjoyed every moment. So next year Charlie your going from the top…!! Callum also went from half way and was proud of his achievement. Luke made it into his harness and walked with me to the bottom of the stairs but very clearly told me “not yet.” It’s work in progress and he will do it when he wants not when we want him to. Jane wasn’t sure about it all but after seeing Immy go from the top she marched up the stairs at full speed and came down doing a star impression. Go Jane…..
While one team was enjoying this the other was in the smoke house rescuing the baby and cat. All is good, baby and cat rescued each time…. They then swapped over so everyone got a chance. While they were all waiting around it was time to practise a few knots. Alicia came up with some great knot work which may take a while to remove from the rope!
We also had time to practice the recovery position. This is done with tender care and we are delighted to say that they remembered how to do this. Well done all.
They all work so hard and put everything into it. So I hope they sleep well tonight.
See you all in the morning……..
Nicky shares what the last 10 years of Salamander have meant to her…
Does it sound overly-dramatic to say that Salamander saves lives?
10 years ago, I saw a YouTube clip about a group of young people taking part in a fire service training course in Essex. They were running out hose, climbing ladders and having a brilliant time. They also all had Down’s syndrome.
Within minutes I had contacted the committee of the Swindon Down’s Syndrome Group to ask for permission to contact our local fire service to see if they ran anything similar here. I wanted my boys to have that experience, I wanted them to gain an understanding of the fire and rescue service and learn how to respond in an emergency but, most of all, I wanted them to have fun with their friends whilst learning and achieving.
Yasmine Ellis, a youth engagement worker, replied to my message on the Wiltshire Fire & Rescue Service website, as it was known then, to say that she would like to meet. Little did I know that this would be a pivotal moment in the life of my family. We met, chatted and enthused over the possibilities and then met with Watch Manager and Salamander Commander Mark Evans. He had already been thinking about how to make Salamander accessible to the wider community of Swindon – Salamander had previously been thought of as a tool to engage young people who were at risk of exclusion from school, working with community groups such as the Swindon Down’s Syndrome Group and Swindon Young Carers would extend that reach to include those that could gain positively in any number of areas: a break from caring, independence skills, social and communication skills, gross motor skills and safety awareness.
So, Swindon Down’s Syndrome Group’s annual Salamander course was born. That first year just 11 young people took part and what an amazing time they had. Nothing was adapted because we found that nothing needed to be adapted. These young people could listen, understand instruction, manage the heavy cutting equipment, crawl through tunnels wearing BA sets and swim across Coate Water. They enjoyed the company of the firefighters, enjoyed being with their friends and enjoyed learning important fire safety messages.
All that sounds wonderful but how does that save lives?
Well, just a few years into supporting our young people on their annual course I was invited to support on other courses to prove that our young people weren’t receiving a diminished service but that In fact, they were able to challenge every young person on a course in terms of ability, enthusiasm and a desire to achieve. This opportunity led to me volunteering on every course and then being offered a job and this is where saving lives becomes apparent.
The day I started paid work was the day after my husband’s funeral. Salamander became a life-line, a family, a reason to get up in the morning and to put one foot in front of the other. My new colleagues cared for me and my family. They were there to help in person as well as on the end of a phone or ever present on cyber-space. They went above and beyond to meet our needs. They heard our calls for help and responded if only to say, ‘We are here for you.’ They also continue to do so four years down the line and I and my family owe our well-being to them all.
Our young people have embraced this course; they consider the instructors friends, they quote safety messages and count down the ‘Sleeps to Salamander’ each year. They enjoy the company of friends and work as a team. They challenge themselves, encourage each other and celebrate achievement with cheers, dance and song. They welcome new-comers as only they can and mourn the loss of loved ones with maturity, bluntness and love, as only they can.
It has been an incredible honour to be a part of this project. We have learnt, loved and laughed together and it is now a major part of our lives and we will be forever grateful.
Jo Messenger looks back over the last 10 courses as part of our celebration of 10 years of Salamander.
10 courses … I remember the day that Nicky showed me the YouTube clip from a course in Essex that started this whole wonderful journey. Who would have thought that this would be the highlight of the year for many young people (and parents and carers) all these years on? I truly thought that we would do it for one year and it would be great but never to be repeated. How wrong I was! Once you have been involved with Salamander you are hooked for life.
This course has changed my life, meeting so many fantastic people and seeing the course members grow and develop as they learn their new-found skills. My passion for Salamander is only beaten by that of Nicky and Mark’s for this remarkable experience, as without these two it wouldn’t happen.
Everyone who takes part sees the course differently. Some take part once and feel they have achieved all and some email me the day after it finishes to check if they can apply for the next year. However our young people see the course they will remember it forever.
The best thing about Salamander week is seeing the smile as they achieve something new. Seeing their self-esteem grow throughout the week, seeing their sense of achievement as the roof comes off the car after they have just cut through it! Seeing a huge smile as they abseil down the tower. Seeing them forge friendships and bond with their team mates. Seeing the excitement on their faces watching the blue lights and the screaming fire engine as it hurtles around the yard. Why wouldn’t you fall in love with this course? There is nothing that can’t be done by the last day, even if it’s only the start of something, it will grow. Your young people also grow on this course, they grow into proud participants wanting to show off the skills they have learnt.
I’m so proud to be a part of this incredible course. I’m proud of each and every member that has ever taken part. Thank you to all the parents for putting your trust in me and letting me a part of their experience. Thank you.
How does this effect you?
1. It’s the biggest change to UK data privacy law in 20 years
Thanks to technological advances the amount of personal data being generated is rapidly increasing – every time you shop online, use your favourite app or ‘like’ a photo on Facebook you generate data – which is why the law needs updating to better protect people. As part of the General Data Protection Regulation (GDPR) all charities have to review how they manage all personal data – from members’ email addresses to phone numbers – and ensure they are GDPR-ready by 25 May 2018.
2. It will give you more control over your personal data
GDPR is all about giving you more control on how your personal data is used.
3. You can choose who contacts you, and how
Over the coming months you’ll probably notice a lot of organisations asking for your consent so they can contact you about offers, products or services they think you’ll find useful or interesting. To comply with GDPR, these requests need to be really clear and straightforward. You get to choose who contacts you and how, for example by email, social media or phone.
4. You can also change your mind at any time
If you give an organisation permission to contact you, it doesn’t mean you can’t change your mind in the future. Under the new rules, it should be easier to update your preferences on what you want to receive and how.
5. Your data will be better protected
GDPR also aims to make sure that all organisations holding personal data have the right processes in place to protect it.
What happens next?
As a Swindon Down’s Syndrome Group member, if your membership is due for renewal we will have recently sent you a membership form which asks you to choose how you‘d like to receive information from us and how you’d like us to contact you. If you’ve not yet returned your form, don’t worry there is still time. But remember, if we don’t receive one back with your preferences detailed, we cannot send information out to you after 25 May. If you’ve lost your form, you can download another one below. You always have the opportunity to change your preferences in the future.
Abbie amazes me in one way or another every day, whether it be something she say’s or something she does. She inspires me to make the most out of life and to live it with passion.
I was 29 when I fell pregnant with Abbie and as a second child coming after a problem free first birth my midwife explained about the new test to give a percentage chance of my child being born with Down’s Syndrome and said I was at low risk so I decided not to have the blood test and I never thought about it again. Abbie was born at 36 weeks, 4 weeks premature after an emergency caesarean as she was a footling breach. She was perfect, just very small. For 3 days after Abbies birth a variety of Dr’s came to see her making comments like “Doesn’t she have big eyes?” “Her tongue sticks out a lot” and “Look at the gap she has between her toes” all things that just didn’t mean anything to me. It wasn’t till a Dr came into the room on the forth day and said “Yes, I agree with the others your daughter is showing signs of being born with Down’s Syndrome” then my world crashed, I couldn’t breathe or think straight.
I made the mistake on being discharged from hospital of going to a bookshop and grabbing the first book on Down’s syndrome as I knew nothing and I just kept thinking it was the end of the world. The book was a very outdated one that said they all got Alzheimer’s in their twenties. It took me four months to approach the Swindon Down’s Syndrome Group and it changed everything for us, it gave us a support group that helped us understand so much more about what we were going through and what was coming up next in Abbie’s journey. So she may take longer to do somethings, it’s just the scenic route we take to get where we’re heading.
Abbie was in a mainstream school till Year 3, she had made amazing friends in Pre-School that went into Infants and then Juniors with her but it was obvious to us that the gap was widening so much between Abbie and her peers that she needed more. We were lucky enough to get her into Brimble Hill School for the start of Year 4 and the difference that the school made to Abbie and our lives was amazing and for that I’m grateful, Abbie thrived, her speech came on in leaps and bounds she started to do things for herself.
Abbie is now 13 and at Uplands school, I see a future for her, an independent life, she is learning skills that will see her through to adulthood.