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.
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!
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.
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.
Earlier this month Swindon Down’s Syndrome Group received the exciting news that we have been awarded a grant of £1946.95 from Wiltshire Community Foundation to continue to provide our new parent and school transition packs.
The arrival of a new born baby is supposed to be a joyous occasion but unfortunately sometimes the post-natal diagnosis of Down’s syndrome can over shadow the happy occasion. We want to congratulate new parents on the birth of their baby with our congratulation packs. The packs contain a congratulations card, a toy, a blanket, a cardigan, milestone cards plus books on early years development and experiences of other parents.
Last year we revamped our new parent packs, reducing the amount of information we share with new parents in one go, creating additional packs to be given at three, six and 12 months.
School transitions can be scary for most children but for those with Down syndrome it poses many more challenges. Our children don’t adapt easily to change, especially a change in routine. A new school involves a change of teacher, classmates and syllabus. Our school transition packs help tackle these challenges.
Cailey Whitcher, trustee of the Swindon Down’s Syndrome Group said: “We are thrilled to have received support from Wiltshire Community Foundation, this project will allow us to support new mums and dads during those early days and help our young people transition smoothly to their new schools.”
Join us on Wednesday 14 February at Jungle Mania for an indoor soft play session
We would like to invite all our members aged 11 and under and their siblings to join us for a soft play session at Jungle Mania Soft Play Centre.
We will be meeting at 9.30am on Wednesday 14 December. The cost will be £1 per child (payable on the day to Michelle James).
It’s a great opportunity for the kids to play and the parents to chat. Please note children remain the responsibility of their parents at all times.
If you would like to join us please book your place by Wednesday 7 February. Simply email email@example.com with your child’s name(s).
Jungle Mania Soft Play
Unit 9, Crompton Road, Groundwell Industrial Estate, Swindon SN25 5AY.
Our Annual General Meeting (AGM) will be held at The Gateway Church, Swindon at 7.00pm for 7.15pm prompt start on Tuesday 27 February.
The AGM is the formal part of the evening. After the formalities there will be an opportunity for you to meet and chat with other members of the group. We will be joined by Holly Sullivan and her father Mike. In 2017 Holly earnt a place in the Down Syndrome Swimming GB Team. Holly competed in the Down Syndrome European Championships in October and came home with an array of medals. Holly and Mike are happy to chat about their adventures in Paris and I’m sure we can persuade Holly to show off her medals.
We would like to invite you to join us for some food – jacket potatoes with a choice of fillings. All we ask is for £2.50 per person towards the cost of the food. Please let us know by 13 February if you will be attending and staying for food, simply email firstname.lastname@example.org
Election of Trustees and voting procedures at AGM
At our AGM, all Trustee positions become vacant and elections are held to fill them for the coming year. We welcome nominations for our Chairperson and subsequent nine Trustees.
How to apply
The closing date for applications is 13 February 2018. Please complete and return the attached form or email your application to email@example.com
JOIN US FOR A CUPPA AT OUR REGULAR COFFEE MORNINGS
Saturday 3 February 2018 from 10.30am-12.30pm
Saturday 10 March 2018 from 10.30am-12.30pm
Sometimes all you need is good old conversation about the weather or your favourite soap. You might even want to pick the brains of another mum or dad or just catch up with your friends in the Group. Whatever you fancy talking about our coffee mornings are for just that… a good old chat and a cup of tea!
Join us at The Gate in Havelock Square, SN1 1LE. We will be on the second floor serving teas, coffees and some delicious cakes. We have toys and a dedicated play area for the little ones too. We’d love to see you and your families join us, feel free to just pop in for 10 minutes or stay for the whole time.
Our next Jumble Sale is Saturday 10 February, 10am until 12noon at St.Barnabas Church, Gorse Hill. If you have any jumble you can donate or if you can spare some time to help on the day we would love to see you! All the money we raise on the day goes back to supporting all the great projects to support our young people with Down’s Syndrome.