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Jo’s Blog 2018 Day Five

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

Jo’s Blog 2018 Day Four

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.
Night night.

Jo’s Blog 2018 Day Three

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.

Jo’s Blog 2018 Day Two

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……..

Capable of great achievement

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.

 

The start of a wonderful Salamander journey…

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.

Do you know what’s happening on 25 May?

 

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.

Download membership form

I wouldn’t change Abbie for the world…

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.

 

 

 

Chris shares his story with us about what it’s like having a son with Down’s syndrome.

Chris James is a teacher of special needs children at Uplands School and most importantly a dad to his two wonderful children, Josh, 5 and Jessica,1. His son Josh has Down’s syndrome. 

J osh is an amazing young lad. He likes cars, dinosaurs, drawing, painting, reading and going to soft play. He has a fantastic sense of humor and never ever fails to make me laugh.

My favorite part of the day is, without doubt, bed time. Josh and I will sit on his bed whilst I read him story after story and he cuddles up to me. Every night I say to him “you are clever, clever, clever, handsome and funny”. He smiles and pulls me in for a cuddle. The other day he said to me “you’re my best friend daddy” which put a lump in the old throat.

Josh has just started school and despite our anxieties as parents Josh has just got on with it. He loves school! He loves his one-to-one and they have a great time playing – I mean learning together. He has come on such a long way since he started which is a huge credit to the school (Oakhurst) and we can’t thank the staff there enough.

When my wife Michelle fell pregnant we very quickly made the decision not to have the test for Down’s syndrome as there was a small chance of a miscarriage. We decided to just let nature take its course.

When Josh was born I was overwhelmed as all parents are when their children arrive into this world. I remember thinking his eyes looked oriental, but quickly brushed aside the thought as I just assumed that must be what all new born babies look like. After all he was also covered in goo!

Over the next five or six hours we had a lot of visits from a lot of different doctors. Again, I just assumed this was totally normal and didn’t think anything of it.

It was only at about one in the morning when a consultant announced “your son shows many of the characteristics of a child with Down’s syndrome”.

I was completely shocked when I heard these words. My head span. I didn’t know how to re-act. I think I just said “ok” and then sat down and waited for the doctors to leave the room.

At that point my head started to fill with a lot of negative thoughts. One of the first was that I was going to outlive my own child. I was very ignorant about Down’s syndrome and had only heard what I now know to be very outdated and old-fashioned things about it.

My second thought was that I was going to have to give up
my job to be his carer. Michelle was earning more than I at this point so it would make sense for me to look after him. How would we cope financially? What does caring for a “disabled” child, as I then thought, entail? Would I cope? Would I love him? What would my friends think? How was I going to tell people? Would he be able to speak?

All of these thoughts burst into my head in rapid succession. I remember looking over to Michelle and being surprised at how calm she looked. I think she took a lot longer to process the entire event. She also seemed to be immediately accepting of him. She is a magnificent mother.

I now feel ashamed of those thoughts, although I know they are normal when confronted by such unexpected news.

Now I feel completely different. I always say that we were lucky to have Josh. This requires no effort or self-deception to say this. He has enhanced our lives so deeply that I would be lost without him. If someone came up with a pill that could cure Down’s syndrome I wouldn’t want him to have it. I love the cheeky fella exactly like he is. He is my best friend!

When we told our family they went into overdrive searching the Internet for anything they could find about Down’s syndrome and almost immediately found the Swindon Down’s Syndrome Group page.

We contacted the Group almost immediately after we left hospital. We were desperate for information more than anything else. The next morning a lovely lady delivered a package with loads of information about children with Down’s syndrome. We looked through everything. One of the nicest things was looking at the pictures of the Group members on the web site. They all looked so happy and were having a great time. It was a relief to know that there was a community of people who knew what you had been through and what you were about to go through.

Being a dad to a little boy with Down’s syndrome is the most fun you will ever have. He loves to splash me when he’s in the bath and has just discovered that Calpol syringes make the best water pistols. Josh and I called his mum upstairs and then squirted her – naughty but funny! When we are together we are just a bad influence on each other (in the nicest possible way). We have pillow fights, build lego towers, tickle each other, hide from each other, chase each other, sing together. It is honestly such a laugh.

Now his sister is on the scene the trouble is most definitely double. It’s been so lovely to see how they have grown to love each other. When she first came along he kind of ignored her. When she could walk they just pushed each other around and now, finally, they play, share, cuddle, laugh, copy each other and well… still whack each other occasionally.

I am incredibly proud of him. It takes the wee man a bit longer to do things but it’s always worth the wait.

If I could share any words of wisdom I would say that you will love your child unconditionally, even if at first you have reservations. You will very quickly forget that your child has a syndrome and just see them as your child.

You will worry about your child constantly. Why is it taking them so long to walk? Why aren’t they talking more? My goodness my child gets horrendous colds, is that normal? My advice here is to talk to other people who have children with Down’s syndrome. Nothing you are going through has not been gone through before by other parents who have had this experience and all have them have come out the other side to tell the tale.

Finally I would finish by saying this. You will come to see this event as a gift. It is like you have been given a joy pill that you get to take every day. So have fun, keep talking and get ready to laugh… a lot!

We are looking for a Clerk to Trustees 

Can you spare a few hours once a month to support the trustees of the Swindon Downs Syndrome Group? We are looking to appoint a Clerk to the take the minutes at our trustees meetings.

We meet roughly every four weeks on a Tuesday evening from 7pm in Swindon.

The ideal person will have excellent communication and organisational skills, be able to work independently whilst at the same time forming effective relationships with trustees. No previous experience is required.

This is a voluntary role.

The clerk would be responsible for:

  • Recording the attendance of at meetings (and any apologies – whether they have been accepted or not), and take appropriate action in relation to absences, including advising absent trustees of the date of the next meeting
  • Draft minutes of trustees meetings indicating who is responsible for agreed actions with timescales, and send drafts to the trustees for review
  • Circulate the reviewed draft to all trustees and within the timescale agreed with the governing body
  • Follow-up any agreed action points with those responsible and inform the trustees of progress

To apply please email secretary@swindondiwnsgroup.org.uk detailing why you would like this role, your skills and any previous experience.

About Swindon Down’s Syndrome Group

We have been supporting people with Down’s syndrome, and their families since the Group was founded in 1984. We now have over 80 members who range from children and adults with Down’s syndrome, their parents, carers and supporters in the local community.

We work hard to raise awareness of the work we do to support people with Down’s syndrome.

Our aim is to support people with Down’s syndrome, providing information, help and activities to them and their families.

Our purpose is to help people with Down’s syndrome to have the same opportunities as everyone else. We offer support from the moment a child is born right through to adulthood. We have tailor-made resource packs to help parents at every stage of their child’s development. We connect people to essential services available in our local area.

Our toddler groups, youth club and family activity days allow our members to regularly meet with each other and build their own network.

We provide regular group activities for our people with Down’s syndrome, giving them a great opportunity to socialise and make friends. From term time football training to weekly tennis sessions; fortnightly and holidays swimming sessions to our Salamander Fire Course; and regular parties and family trips.