In response to the current COVID-19 situation in the UK, we would like to take this opportunity to provide you with some advice when attending SDSG activities.
You’ll all be aware of Coronavirus and the increasing concerns surrounding this and we understand that health worries are often heightened for those with a vulnerable person in their family.
We recognise that there may be concerns from parents/carers about attending events and our regular activities.
We want to make sure we can signpost you to up-to-date information and the latest advice – below is some key information.
Key sources of information and support:
What you can do to help
There are precautions we can all take to limit the spread of infections and help to keep ourselves well. The advice is to:
We thank you for your understanding.
Are you enthusiastic and passionate about supporting people with Down’s syndrome?
We are inviting members who would like to be one of our charity trustees to submit an application.
Being a trustee is about engaging with our members, attending monthly meetings, organising and supporting events as well as lots of other little tasks to do with the day-to-day running of the charity.
We are governed by a board which comprises up to 10 Trustees, including the Chair, Vice-Chair, Secretary, Treasurer and Vice-Treasurer.
If you’ve got specific skills or experience you can bring – perhaps you’re an excellent events organiser or fabulous fundraiser; you like to support new parents or raise awareness in the local community.
If this is you or you know someone who fits the bill and would make an outstanding trustee for the Swindon Down’s Syndrome Group – applications close on 31 January 2020.
- Please read: ‘What’s required of a charity trustee, including your responsibilities to your charity’
- Complete the nomination form
- Email it to firstname.lastname@example.org or post to: Secretary, Swindon Down’s Syndrome Group,
34 Periwinkle Close, Swindon SN2 2QH
What happens next?
All nominations will be considered by our current Board of Trustees, who will recommend those candidates to be put forward to the membership for election at the AGM on 29 February.
Download an application form
Would you believe Christmas is just around the corner? So it’s time to start planning our Christmas parties for this year.
As we did last year, we will be holding two separate parties, one for our younger members (year 6 and below) and one for our older ones (year 7 and above).
Children’s Christmas Party
Our Children’s Christmas party will be held on Saturday 30 November, from 3pm-6pm at Saint Barnabas Church Hall in Gorse Hill.
Join us for an afternoon of fun and laughter as we welcome along local children’s entertainers Razamatazz and not forgetting a special visit from Father Christmas.
Each child with Down’s syndrome and their siblings (under 12) will receive a present from Father Christmas. Food will be provided for the children only – please make your selection below and notify us of any dietary requirements.
Teas and coffee will be available for parents and carers.
Download the party invite here.
Our Christmas Disco, specifically for those in year 7 and above will take place on Friday 6 December at the Crossways Suite, Moonraker’s Pub, Cricklade Road from 6.30-10pm.
The evening will include a buffet, disco, raffle and each person with Down’s syndrome and siblings under 16 will receive a gift from ‘Secret Santa’.
Download the invite here.
Fancy coming along?
You need to let us know by 31 October if you’d like to come along as we need to make sure Father Christmas has time to get all the presents.
If you need more information please email email@example.com
Wow, what a brilliant day we have had today! So, let’s start from the top. Breakfast was ready when we went up and they all enjoyed their lovely plates of sausages, bacon, eggs, beans and toast. Anyone would think they’ve never been fed before! Today they will need a good breakfast because it’s Nicky’s favourite day of the course, Water Safety Day.
After breakfast it was down to the yard where the sun was out along with some chairs for everyone to sit on. No fire kit needed today as we get to wear the fluffy onesies and dry suits. First on with the onesies. Then the dry suits are squeezed onto the young people. There’s a couple of pictures of what happens when you don’t quiet get it first time and you lose the head inside the suit. This is the hard bit as the neck is designed to be very waterproof so is extremely tight to get over their heads. Once this is all done, they are zipped up and PFD’s are put on to ensure they float in the water, helmets and gloves are added to create an airtight young person. Now is not the time for the wind to be released from baked beans!!
Everyone is loaded onto the minibuses and Fire Engines and off we head to Coate Water. Once the other end off we get and the Walkway is inflated. Everyone carefully made it to the side of the enclosed area. It was at that point Mark made the call that it wasn’t safe to go in the water due to the vast amounts of algae.
Everyone is loaded onto the minibuses and Fire Engines and off we head to Buscot Weir. What a great place this is. Everyone is eased into the water and the fun can begin. Now we usually do a little water safety but due to the scenic adventure it was time for fun. All but two swam across to the weir and I don’t do it often, but I’m stunned to say so did I. Yes I made it across!! Those of you that know me well know I’m the one who stays at the side so pat on the back for me, after doing 10 courses I swam….
The Firefighters have been over here many a time so knew that a great game is putting your head through the water in the waterfall. Yes your young people couldn’t wait to do this and many of them more than once. What a blast it was. They are all mad.
Now it’s time to leap in and swim back. Some went in forwards, some went in backwards (some of us were misled into going in backwards..!! No names Mark !!) and someone did a somersault …..because he can.
So now we have a few moments for removing helmets gloves and PFD’s and grabbing a drink and biscuit. Time to head back to the station for dinner. Everyone was extremely hungry by now. Before we go back a quick visit to the toilets where Nicky discovered a Bat, yes you read it right, a Bat in the toilet. Don’t find one of those every day.
I really am so proud of them all today, nothing was an obstacle and the faces and screams of delight as they put their heads in and out of the water was a delight. This could become my favourite day as well..!!!
I hope they all sleep well.
See you in the morning.
Regular Speech and Language Therapy gives our young people the opportunity to develop their speech and comprehension skills, enabling them to go on to achieve far more than might otherwise have been possible for them, and to become much better integrated into the community.
Lily’s mum, Amanda, shares how speech and language therapy has helped her daughter.
Lily was a very smiley baby, enjoyed interacting with others and seemed very keen to communicate. However for a long time she was unable to speak.
During Lily’s sessions at Springboard Opportunity Group in Chippenham, and Portage, we were introduced to using Makaton. As a family, we all learned some Makaton signs and used them at home, alongside spoken words. Even Lily’s sisters Aislinn and Sophie (who was only 2 at the time!) joined in enthusiastically learning the signs and doing their best to encourage Lily to copy. Lily’s grandparents even learned to sign to her.
After persevering with this for some time, Lily slowly started using a couple of signs, waving ‘hello’ and signing ‘food.’ At Springboard she really enjoyed singing nursery rhymes and signing along with Makaton. We started to sing these songs to her at home. After a long time of doing this, she gradually started to copy some of the signs, singing the words. This really was a big breakthrough in her finding her voice – she still has a big love of singing!
Lily sees her NHS Speech and Language Therapist approximately once per term. She has been brilliant in helping Lily with swallowing problems and advising how to help Lily’s speech and language to develop. We were so grateful for the help Lily was receiving, but wished she could have more sessions, to help to bring her on as she was so behind with her speech.
We became involved with the Swindon Down’s Syndrome Group when Lily was around two and a half. After we joined, we were told that the group provide regular speech therapy (SALT) free of charge.
We were given a form to complete and promptly sent an appointment to see the Group’s therapist, Erica.
Lily really enjoys her sessions with Erica. She has given us so much useful advice on how we can help Lily to progress. Things that were easy to do, such as having Lily with me when I’m doing the housework, and describing what I’m doing to increase Lily’s vocabulary. Giving her choices such as ‘do you want the blue ball or the yellow ball?’, and even helping her to start ‘reading’ by matching simple words to photos.
Having the extra SALT sessions, which the NHS just can’t provide, with a Down’s Syndrome Specialist such as Erica, has made a huge difference to Lily’s progress.
Since Lily has been seeing Erica I have noticed huge improvements in Lily’s speech and understanding. Erica is so knowledgeable about Down’s syndrome and I feel very thankful to the Swindon Down’s Syndrome Group that they provide this extra service. It has been invaluable to Lily’s development.
This improvement in Lily’s speech skills have had a huge effect on her life. Other children at nursery find it easier to understand her, so she is more able to play with them and form friendships. She used to get very frustrated because no one could understand what she was saying. Life is so much easier for her now she can communicate what she wants.
Lily is now three and a half and her speech is going from strength-to-strength. She is still delayed in her speech & language development, but continues to improve all the time. She can now speak in sentences, telling us what she wants for breakfast or which episode of Mr Tumble she wants to watch! One of the best moments recently was when I was putting her to bed, and she suddenly gave me a big hug said ‘love you Mummy.’
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……..
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!
Make sure you have our 2017 Charity Ball event in your diary! Our James Bond themed Charity Ball will take place on Saturday 1 April 2017. What’s even better is we are offering a special early bird rate of £50 per ticket when purchased before 31 December 2017
For more information or to book your tickets visit our dedicated web page here.
Last week Swindon’s very own Jazz Carlin swam the best 400m freestyle of her career to win a silver medal at the Olympic Games in Rio.
Our very own Holly Sullivan wins three gold, one silver and one bronze in the Down’s Syndrome European Open event. She entered six individual events and the 200M relay. Holly won three gold, one silver and one bronze medal.
Holly, now 12, has been learning to swim since she was four years old and is a regular attendee at the fortnightly Monday night Swindon Down’s Group swimming sessions at the Thamesdown Hydrotherapy Pool on a Monday evening from 6-7pm. . Her family and the Group are extremely proud of her.
Could you help one of our young people become an Olympian? If you would like further information about our swimming or other sports sessions please email firstname.lastname@example.org