or both? work - Swindon Down's Syndrome Group · group of players to the DSActive Football Tournament in Birmingham. We travelled in style on the Swindon Town FC first team coach

Issue 4 | October 2018 www.swindondownsgroup.org.ukwww.swindondownsgroup.org.uk

SUPPORTING LOCAL PEOPLE WITH DOWN’S SYNDROME

www.swindondownsgroup.org.uk

SWIN

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Issue 4 | October 2018

Tell it right®

Opening aworld of

communication

Swindon prepares to train over 70 midwives how to deliver a diagnosis

Breast, bottle or both?

On ourbikes

Summer cycling success for our

young people

Myles’ way intowork

How sign language can make a difference to children with Down’s syndrome

Your stories | WorkFit: What does work mean? | Fundraising in action | News in brief

02 | downtime


THIS ISSUE

Editorial Policy and Disclaimer: We try to ensure the accuracy and appropriateness of all material, but cannot be held responsible for the content of any product or website listed. Whilst Swindon Down’s Syndrome Group makes every effort to keep the information in this newsletter accurate, we disclaim any warranty or representation, express or implied, about its accuracy, completeness or appropriateness for a particular purpose. Therefore, you assume full responsibility for using the information in this magazine, and you understand and agree that Swindon Down’s Syndrome Group are not responsible or liable for any claim, loss or damage resulting from the use of the information in this newsletter. Swindon Down’s Syndrome Group accepts no responsibility for the external services provided by groups or organisations in this newsletter and does not endorse the providers featured. Links to websites are provided for your convenience and inclusion of any link does not imply endorsement.

Awarded 2010

Registered Office 34 Periwinkle Close Swindon Wiltshire SN2 2QH T: 01793 538335 E: [email protected] Swindon Down’s Syndrome Group is a UK registered charity. Charity number: 1158449We are affiliated with UK's National Down's Syndrome Association.

It’s that time of the year again...

NEXT ISSUE APRIL 2019

Welcome...

CAILEY WHITCHERSecretary & [email protected]

I’m sure I’m not the only one thinking it but, where has this

year gone? I can’t quite believe it’s October already!

This means we are approaching one of the busiest times for the Swindon Down’s Syndrome Group. We are holding our annual pre-school and primary training day in November. The day always proves to be a popular one, with teachers and teaching assistants joining our speakers to learn more about the learning profiles of our little ones.

Over 70 midwives and maternity professionals will also be joining us in November for our first ‘Tell it Right’ study day provided by the DSA. The training is accredited by the Royal College of Midwives and has proved to be tremendously popular in Swindon.

We’ve got a number of parents from the Group coming along to share their experiences and help give the midwives a real life insight into what it’s like finding out your baby has Down’s syndrome. You can read more about this event in the magazine.

Once again this edition is packed with fantastic stories from our members. Erica Ford talks about the importance of sign language and infant feeding specialist, Kathryn Townsend, tackles some of the myths around breastfeeding.

I have to say a massive thank you to everyone who has contributed to the magazine, you really do make it come to life.

Salamander 2018: A decade of smiles10 |

Plus... News in brief page 4Your stories page 6We get on our bikes page 13Tell it Right page 14A world of communication page 16Fundraising in action Page 22What does work mean? Page 24

Myles’ finds a way into work at Cobbs Farm Shop08 |

Victoria and Harry’s breastfeeding journey20 |

Thank you to Big Lottery Fund for funding this edition of our magazine

Find out more and join here:easyfundraising.org.uk/swindondowns

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10 Nov 2018

JUMBLeSALE

St. Barnabas Church Hall, Gorse Hill, Swindon

10am until 12noon

If you have any donations of jumble please

bring it to the hall on the morning of the sale

before 9.30am

Jumble • Cakes • Toys Teas & Coffee • Clothing Shoes • Bags • Jewellery

Books • DVDs • Bric-a-brac

news in briefnews in brief

FAMILY FUN

Families enjoy day out at Drayton

In September families from the Group enjoyed a day out at Drayton Manor Theme Park.

Drayton Manor is home to some of the fastest and exciting attractions with roller coasters for the thrill seekers amongst us and the zoo and Thomas Land for the younger ones.

The rides are family friendly and a lot of fun. Adults can ride with the children on most of the rides in Thomas Land. If it rains there is always the indoor play area to keep the little ones dry.

The ‘bigger kids’ rides are towards the back of the park. Fans of white knuckle rides were not disappointed - Drayton is home to the Shockwave - the worlds only Intamin stand-up roller coaster.

The guest services team could not have been more accommodating. Each family took advantage of the easy access passes offered by the park meaning it kept the queuing time to a minimum. Everyone had a fantastic time - it really is a great amusement park for everyone!

In June Swindon DSActive took a small group of players to the DSActive Football Tournament in Birmingham. We travelled in style on the Swindon Town FC first team coach driven by Barnes Coaches - we always like to make an entrance!

Our amazing players proudly joined the DSActive All Stars team to play against many other teams that had come along to the festival from all over the country.

The All Stars started well winning their first game 2-1, spirits were high. Though these players did not know each other I was proud to be part of the Swindon team watching our young men play with respect.

They were coached well and didn’t mind being given instruction by total strangers who were leading the All Stars. Of course, they were all friends by the end.

Though the team did not win their league they played brilliantly together and did us proud.

DS ACTIVE

Football festival

The DSA are delighted to welcome a new member to their team, Chris Watson.

Chris provides specialist advice to parents, family members and practitioners about how to get the right support for an adult who has Down’s syndrome.

Chris’ areas of knowledge include how local authorities commission services for people with intellectual disabilities. He can advise on personal budgets, direct payments, individual service funds, housing options, cost of care and challenging local authority decision making.

Chris can be contacted advice through the DSA helpline on 0333 1212 300.

DSA

New Adult Services Specialist Adviser

During the October half term our younger members can enjoy a morning at Jungle Kingdom. It’s a great opportunity for parents to meet and chat while the little ones play.

Those aged eleven and under and their siblings can join us on Wednesday 31 October from 9.30am for just £1 each. Places must be booked through the Group to gain entry. *

*If you have not booked you will have to queue for normal entry and pay the full price. You must arrive by 10.30am.

Half term softplay fun!

Challenge one: 21 passes on the floorAll the players were more than capable of doing this and they were encouraged to count aloud so that I could check that they were not cheating! Everyone did a splendid job of this, so it was onto the next challenge.

Challenge two: 21 bounces on your racket The first one to try was Milo and once he found the rhythm there was no stopping him. He did them unaided and without any restarts. Next up was Sam who after a few dummy runs

From 1- 21 October, the Down’s Syndrome Association have been running the #Challenge21 campaign. Alan Elbourn, coaches our DSActive tennis sessions at the Delta Tennis Centre (Sun, 5-6pm), and shares how our young people took on some of the DSActive challenges.

Swindon do their bitfor Challenge21

found his stride and qualified easily. Charlie was the next to try and again after a few false starts was soon in the swing of it. Robert followed and being our most recent member he did this with no problem at all. Lastly Andrew stepped up to the plate and with a little help got to 21.

Challenge three: 21 shot rally over the net This was supposed to be the hardest but I looked on in awe as they all got to 21 and in some cases much more. Andrew was a revelation in this task and gets a special mention for doing so well.

DS ACTIVE

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your stories

storiesyourWe love to hear about what you’ve been up to...These are stories from families and young people within our Group. Each one is there to inspire, to highlight different aspects of living with Down’s syndrome, or simply to share what you’ve been up to.

I went on holiday in the summer without Mum and Dad. We stayed in a great place in Alton and I shared a room with two boys.

There were lots of people from all over the world on the Order of Malta International Holiday Camp 2018. I was in the GB Team with my friend Jeremy, Richard and Louisa. I got to carry the GB flag at the welcome parade. We had cool trousers to wear from PJ-S and I like wearing these at home. There was a bagpipe band.

We had a great day out at Arundel Castle where there was lots to see and do. It was a week of fun packed activities and making lots of new

Whatever your story or experience we are delighted to share them - we want to

hear from you

shareyour story

I started my dancing when I was five years old I’ve been dancing for 23 years.

I dance at Miss Emily's dance academy in Chippenham on Thursdays. I do two classes. I dance in the inters and adults. The dances I do is modern, tap, sometimes lyrical and musical theatre. I wear a colourful dance uniform with the name of dance company that I dance for on it.

Lorni’s loveof dancingI dance with my friend Laura . Every year we perform in a dance show. This year Laura and I did a dance to Flashlight from Jessie Jay we both enjoyed dancing to that. We practice musical theatre as well. The musicals I have enjoyed performing in are Grease. I played Danny and wore a T-Birds jacket, white t-shirt, jeans, jazz shoes. I also enjoyed being in the Lion King and I wore a hyena costume with a mask.

This year we are doing another show and the musicals we are going to perform are The Greatest Showman and Annie I can't wait to be in it.

friends. I went in a sports car, I drove a boat, I went on the London Eye. There was a disco every night, and one night a silent disco with headphones. There were animals one day and dogs and we played fun games. There was a Harry Potter night and I dressed up.

We made lots of friends and I really had fun. I hope I can go again one day. I want to say thank you to all the people who helped me have such an amazing holiday and looked after me. You are the best and I hope to see you all again soon.

adventuresolo summerOlly’s

Milo was really looking forward to starting secondary school at Commonweal in Old Town this September.

The school held a summer camp at the end of August just for the year 7’s and Milo was able to go and spend three days meeting children from other schools and getting to know his way around.

The school is very close to us so most mornings we start the walk together and then leave Milo to walk in to school with his friends.

Milo has a similar timetable to the other students but with different options and this is working really well for him. Milo loves his sport and has joined the football and basketball lunch clubs.

Milo says the best thing about Commonweal is all the lunchtime food and snack options and the worst thing is wearing a tie ever day.

Milo looksforward to

a new school

8 | downtime


Berkshire’s ‘Ways Into Work’ provide supported employment to individuals aged eighteen and over with a disability to help them into paid employment.

They help them develop the skills and confidence they need to gain paid work and continue to stay in paid work.

your stories

Myles’wayinto work

Working at Cobbs Farm Shop

Restaurant (on the A4 just West of Hungerford) is his first paid work. He started on Monday 6 August. Melanie Stevens from Berkshire’s ‘Ways Into Work’ has been very instrumental in securing this position for him and she continues to support him in this role.

He currently works Mondays from 14:00 to 16:00 and his duties include: Clearing tables, pre-washing dirty crockery then loading the dish washer, emptying the dishwasher and sorting the cutlery, cleaning tables and

laying them ready for next service. He is responsible for toping up the water bottles on the tap water table so customers can help themselves. Recently he has started taking orders out to customers at their tables.

Cobbs are very impressed with his work attitude and are considering extending his hours to three.

Myles has had several unpaid work experience jobs at various places including YMCA, Sainsbury’s, Tesco and a small café in Newbury. He has enjoyed these experiences but each one was for a fixed number of weeks and he was sad when they came to an end.

I can buy things I want.’

‘I love working at Cobbs on Monday

lunchtimes. All the people are

nice to me. I like being paid for my work.

Lane started has worked in various departments

including the enquiry desk and main parade room. His duties included administration, filing, dealing with post, helping to maintain police vehicles and supporting officers. Everyone wanted to offer their thanks to Lane and Supt Adrian Burt had nothing but praise for him

“Lane really had a positive impact, he has an infectious smile and a unique sense of humour that has really brightened up the station. We are really pleased that

At the end of June Lane Stow, 19 completed a six month WorkFit placement at Gablecross Police Station as a police volunteer.

we could give him this experience and thank him for all his hard work.There are limited placements available and we are privileged to be able to help out. We tried really hard to make sure that Lane gained skills and enjoyed his time with us, we tailored his duties to meet his needs and we have benefited from having his assistance.”Lane wanted to see a few other behind the scenes areas of the station before he left and along with Sharon Innes, who was instrumental in organising Lane’s placement, visited the Crime Scene Investigation Department where he learned about fingerprints. Then it was off to Custody where he had a quick experience of being in a cell.

Lane leaves a positive impact

Myles has written a few words about Cobbs

to wear my uniform’

‘The people are really nice and

I most enjoyed working in

the enquiry office... I was proud

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This year we celebrate the tenth Salamander Fire Course. I can’t believe how much these young people have grown up since we ran the first course in 2009.

WRITTEN BY JO MESSENGER

Salamander

Seeing those little faces on the first day of

Salamander 2009 to the confident young people we saw this year is incredible. Even our new joiners this year were full of confidence.

For me the best part has to be ten courses of smiles! With singing, dancing, photo opportunities and pure entertainment.

a decade of smiles

Salamander 2018

Celebrating 10 years

2009 2010 2011 2012 2013 2014 2015 2016 2017 2018

The Salamander Course has changed my life. I’ve met so many fantastic people and watched 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.

It is wonderful to see the young people develop during the five day course. Not every participant is a best friend when they arrive, we have new faces every year. It doesn’t take long to settle in and become one of the crew as if they have been doing this daily forever.

Every course is different. We work on the same activities each year, but they are always carried out to suit the young people and what they can do.

Confidence is built with the team building exercises on the first day. After that everyone is so supportive of each other in every activity they take part in.

You can’t beat seeing their amazing smiles as they achieve something new. Seeing their self esteem grow throughout the five days, 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.

‘For me personally these

courses have added so

much quality to my life...’ MARK EVANS (MBE)

12 | downtime


what’s happening

on our bikesWe get

Cycling offers those with a disability a magical combination of independence, individual challenge, the exhilaration of speed and movement and good old fashioned fun.

cyclingdiary

Andrew’s

MondayI sat on the seat and used my feet and put my fingers on the brakes to stop. I rode my bike round the cones.

TuesdayI pedalled on my bike with one foot and went really fast.

WednesdayI pedalled with one pedal and then did two pedals. I rode with Caroline and my dad holding me.

ThursdayI rode by myself. My mum and dad were proud of me and Caroline gave me a medal to go round my neck.

What’s great is we had a mix of ages on the course, proving its never to late to learn. Everyone was eager and keen to get on the bikes and enjoyed the freedom of cycling. Everyone achieved something over the week and it was remarkable to see Andrew, the eldest on the course by a long way, go from not being able to ride to being able to cycle independently (even though only for a few seconds).

During the summer holidays six young

people from the Group took part in a cycling course over four days. The lessons were designed specifically for people with Down’s syndrome. They weren’t using adapted bikes, the aim was to build their confidence and get them cycling.

First of all they learnt to scoot only on the bikes, developing their balance. When they felt more confident it was time to start peddling. When they were ready it was time to let go and let them ride!

playground by myself’

‘I tried really hard to

ride my bike on my

own. I rode it across the

Seeing them forge friendships and bond with their team mates. Seeing the excitement on their faces as they watch the blue lights of 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.

This year was a very special year, our tenth course. We could not let this milestone go unnoticed. To mark the occasion the Group produced a

commemorative photo book which was given to each member who had attended any of the ten courses so they too could look back and enjoy the memories. The sixteen young people who attended this years course each received a specially designed polo shirt with their name and both the Dorset & Wiltshire Fire and Rescue and our logos.

There is a huge amount of fundraising that goes into providing the Salamander Course and we must say thank you to everyone who has helped us fund the course over the last ten years. Here’s to another ten amazing years of Salamander!

“ Each young person is valued and a valuable member of a team, each young person is capable of great achievement...”

NICKY PARKER

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Issue 4 | October 2018 www.swindondownsgroup.org.ukwww.swindondownsgroup.org.ukIssue 4 | October 2018 www.swindondownsgroup.org.ukwww.swindondownsgroup.org.uk

what’s happening

It’s the use of the words ‘bad news’ that stays with most parents. Although

maternity professional are given some literature on good practice, most are given no formal training on how to deliver a diagnosis or how to share information about Down’s syndrome.

(midwives, antenatal screening coordinators, obstetricians and sonographers) need regular training in how to best support pregnant women who have had high chance screening results, ante-natal diagnosis or post-natal diagnosis. There is also a need for healthcare professionals to learn about and provide non-directive counselling – to enable parents to make personalised, informed, decisions about what is right for them.

“I’ve got some bad news...”, these are the first words many parents hear when they are first told of their baby’s diagnosis of Down’s syndrome.

During 2017/2018 we delivered seven ‘Tell it Right® Start it Right’ sessions to maternity professionals and seventeen sessions to student midwives. The delegates reported improved knowledge about Down’s syndrome and the common issues, particularly in the early weeks following delivery. They said it had been a valuable experience, something they will apply to their professional practice and something they will share with colleagues in the maternity profession.

We know how important it is for expectant parents to feel supported by their maternity team and to be given the most up to date and accurate information on Down’s syndrome. Parents need to know the joys and challenges of having a child with Down’s syndrome, the impact on families and what support is available in the community.In November the DSA, supported by the Swindon Down’s Syndrome Group, will be providing the Royal College of Midwives

accredited training ‘Tell It Right’ to over 70 midwives from Swindon’s Great Western Hospital. Jane McIlveen, Information and Training Officer at the DSA tells us more...

The Down’s Syndrome Association believe there is a real need for women to be provided with up to date and accurate information about Down’s syndrome with a balanced outlook of what life is like today for people with Down’s syndrome and their families. Health professionals

Start it rightTell it right®

Tell it Right, Start it Right

This RCM accredited study day, provided by the Down’s Syndrome Association, is for all health professionals working in foetal medicine, maternity and neonatal services including midwives, nurses, paediatricians, sonographers and health visitors.

Tell it Right aims to provide information about: • Down’s syndrome that is balanced, accurate and up-to-date • How best to support expectant parents through the screening process • How best to impart information to parents and families, following a pre/post-natal

diagnosis of Down’s syndrome • Some common issues which may affect a baby with Down’s syndrome in the early

weeks of life. Tell it Right also aims to encourage delegates to reflect on:

• The decision making process related to screening • The parents’ perspective • Life for a person with Down’s syndrome

We hope to be joined by parents who will share their experiences and also by a person with Down’s syndrome who will talk about their life.

www.downs-syndrome.org.uk

About the day Specific learning outcomes for the day are to ensure that delegates are best equipped to support parents, in-line with their professional guidelines (NICE, 2008) and care pathways.

Venue: Date:

Time: 9.00am-3.30pm

screening results’who have had high chance best support pregnant women ‘Health professionals need

regular training in how to

Celebrating our fantastic volunteersVolunteer

Week

During the week, hundreds of events

and celebrations take place across the country, saying thank you to volunteers and recognising their invaluable and diverse contribution.

Wiltshire Police have had three volunteers in their Force from the Swindon Down’s Syndrome Group; Lane, at Gablecross in

Volunteers’ Week is a time to say thank you for the fantastic contribution volunteers make.

Swindon; Jeremy in police headquarters in Devizes; and Edward in Salisbury.

As part of Volunteer Week, Chief Constable, Kier Pritchard let Jeremy and Edward be ‘Chief for the day’ - something negotiated by the pair when they first met Kier.

Both Edward and Jeremy were given uniforms so they felt the part. After exploring the headquarters at Devizes

Force from the Chief Constable downwards. There are some outstanding champions who have been more than generous with their time and support, in particular John Flynn and Roy Perrett who have gone the extra mile.

it was time for a ride in Kier’s car - of course with the blue lights on!

Edward and Jeremy got to meet the latest recruits to the Wiltshire Force and took the opportunity to share with them some words of wisdom - Jeremy insisted “they needed to do more press ups”.

The day ended with them being shown the mechanics that go into the police cars and a talk about road safety.

It is no surprise that Wiltshire Police have received the accolade of being the first Force in the country to achieve the recognition of being a top disability employer. The culture of inclusion permeates through the

‘As part of Volunteer Week,

Chief Constable, Kier Pritchard

let Jeremy and Edward

be ‘Chief for the day’

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speech & language

What is signing?

Signing is using your hands to get a message to another person. Ever made a ‘do you want a drink?’ gesture across a crowded, noisy room? You know speaking won’t work so you naturally gesture.

Signing is just a kind of gesture that allows you to communicate better information. It’s where everyone agrees on the gestures to use so that everyone clearly understands. Even if you don’t know signing you should still gesture to your child.

In the UK there is Makaton and Signalong. In Swindon we use Signalong and the local Speech and Language Therapy team run courses at regular intervals, free to parents (manual on loan for the course or buy a manual for around £20). In Signalong we teach you how to use the book to pick the signs most useful to you.

Opening aworld of

communicationThe use of sign language opens up the world of communication for children with Down’s syndrome. It supports the development of expressive language, meaningful communication and social skills.

Our children with DS are much better

learning from things they can see and they are usually later to learn to understand spoken language and to speak. It’s frustrating not to be able to tell people, you care about, what you think or feel.

First: You sign to them to help them understand what is being said to them more easily. It also helps their attention. For quite a while, they just watch and use the information.

Next: They try signs. Their signs won’t be perfect (words aren’t

when they start to speak), but

when you react, you know exactly

How does it work?what they want (not just guess). Imagine how that will feel to them?

Next: Most of our young people will start to use their voices to communicate and find that speaking is more accurate so they will slowly stop signing (after a period of mixing the two). Don’t stop signing to them – there will always be more complicated ideas that they will understand better if you are signing as well as saying them.

WRITTEN BY ERICA FORD

What puts people off?

It’s too difficult, there are too many signs. No one expects you to learn them all. To start just use two or three, that come up every day - toilet, drink, look - and use these whenever you say the word.

If my child signs that may stop them speaking. I have never known this to happen. Signing fills the gap before they start speaking, it stops frustration, helps attention and improves understanding. It shows them why communicating is worth doing and this encourages more use of speech.

I will feel silly. It’s easier if you try it first with a big group who all feel the same and if you involve lots of the people your child knows, so everyone is having a go.

I don’t want to go back to school. The course isn’t like that – there’s no pressure to join in and we try to make it fun! Ask your speech and language therapist to teach you a few basic signs that you could try at home with your child.

The sign for book

Give it a go... TRY THESE SIMPLE SIGNS

The sign for Dad The sign for time

‘We always speak as well

as sign. We just sign the

main words important

for understanding’

18 | downtime


new parents

Many mothers are told that they won’t be able to breastfeed their baby because they have Down’s syndrome, but how true is this?

Kath Townsend is a midwife and health visitor who works as an Infant Feeding

Coordinator for Swindon Borough Council. Kath talks to us about how to get support when feeding your baby.

Many mums are told that they won’t be able to breastfeed their baby because they have Down’s syndrome - how true is this? Having Down’s syndrome can make it more difficult to feed from the breast or bottle, but this is not the case for all babies. It is therefore important that we see all mothers, babies and families as individuals, regardless of their situation. If for any reason a mother can’t breastfeed her baby temporarily or longer term and wants her baby to have breast milk we can work to support her to provide expressed breast milk for her baby and to maximise her milk supply.

Patience and finding the right support, as low muscle tone, tongue thrusts, and a weak suck can affect the baby’s ability to breastfeed.

Why is it important to try and persevere with breastfeeding a baby with Down’s Syndrome? Persevering is important, as it may take longer to establish breastfeeding a baby with Down’s Syndrome. If a mother chooses to breastfeed her baby there are many benefits such as:• Breast milk provides extra protection

against infections and bowel problems, which are more common in babies with Down’s Syndrome.

• The action during breastfeeding provides stimulation to strengthen baby’s lips, tongue, and facial muscles; creating a building block for speech development. It will also improve mouth and tongue coordination.

• Breastfeeding promotes closeness between mum and baby, creating a special bond.

• Human milk is more easily digestible than formula and can help if a baby has digestive issues which is common in babies born with Down’s Syndrome.

Low muscle tone is a common characteristic of babies with DS, this has been known to cause challenges when feeding. Are their any tips and tricks you would recommend for both breast or bottle feeding?Health professionals recommend that parents feed their babies when they show hunger cues. Babies born with Down’s Syndrome are often more sleepy, so it may be necessary to wake baby for feeds to ensure they have at least 8-12 feeds a day. Skin to skin contact for feeding both from the breast and bottle helps promote feelings of love and closeness and increases the release of the hormone that helps with milk flow.

Low muscle tone can make it difficult for babies to latch on well. It is therefore important to support baby’s head during feeding. There are a number of ways to hold baby to support his/her head, neck, and back. ‘The Dancer’ hand position is especially beneficial to babies with low muscle tone (there are lots of pictures of this on the Internet).

Sometimes gulping and choking can be a problem. Positioning baby so that his/her head is higher than his/her bottom can help with this. If feeding milk from a bottle pacing the feeds can stop baby from taking too much milk at a time. Pacing feeds allows the baby to take breaks and not over fill their tummy.

What support is available in Swindon to new mums who are struggling with feeding?Midwives and health visitors receive training to support parents to feed their baby. They work with other professionals involved in caring for babies who have additional needs. If a baby is experiencing more complex feeding problems we have a specialist infant feeding service in Swindon, midwives and health visitors can refer a baby to this service. We also have Breastmates, which is a volunteer-led peer support programme of groups and social media.

Is there anything else you think would be helpful to a new mum? Self-care is really important, rest when you can, eat healthy foods, keep active, meet up with family and friends and accept all offers of positive support.

Breast, bottleor both?

For more information on breastfeeding your baby you can get help and advice with from your midwife, health visitor or go to www.KellyMom.com and search Down Syndrome and Breastfeeding.

20 | downtime


With full credit to my husband, he did a dash to Mothercare and bought the best breast pump he could find (although I now know that maternity wards have hospital grade pumps you can use); I began expressing. For those first few days we just did what we could to get the expressed milk into him, syringe, bottle or direct from the breast - those first few feeds are nutritionally crucial. At some point he became adept at feeding from a bottle, his heart issues made him tire easily and he could take more from a faster flow teat so I carried on expressing and giving it to him in a bottle.

new parents

Harry burst into the world at 10:30 one Sunday night in

February; he was delivered at 35 weeks by ventouse following a very quick labour, complicated further by concerns relating to a pre-natal diagnosis of congenital heart problems.

Harry weighed just 4lbs 10ozs. We had immediate skin to skin contact and, shortly after his birth, a rather brusque midwife helped me feed him for the first time.

I always wanted to breastfeed any children I had, and I had taken part in a breastfeeding workshop during my pregnancy. A couple of hours holding a plastic baby doll does not compare with trying to latch on a real life baby a few

Harry’s and my breastfeeding journey was neither straightforward nor easy. But with perseverance, advice and support it became a wonderful time of bonding, comfort and love.

minutes after you’ve given birth but, nonetheless, I had some useful basic

knowledge. The midwife seemed happy that Harry had latched properly and had a quick feed; we were soon moved up to the maternity ward and put in a private room.

The following day we received his diagnosis (that’s a story for another

day!); there was clearly so much more to think and talk about than breastfeeding... Harry was sleepy, floppy, small and barely feeding at all.

It quickly became clear Harry would need heart surgery sooner rather than later, and when he was 12 weeks old we went to Southampton for his operation. I expressed throughout - every three hours as if I was directly feeding a new born. I froze gallons of the stuff! I was told that, after his heart surgery, we would see a huge change in him and, sure enough, it wasn’t long after we went home that he had much more energy and stamina to stay on the breast.

In the weeks that followed I gave fewer bottles and did more breastfeeding until eventually I phased out the bottles completely; I went on to breastfeed Harry for a year.

During a period of his life when he was getting prodded and poked, tested and assessed, it was quiet time for us to settle and connect and enjoy just being a Mum and baby doing what Mums and babies do.

Breastfeeding was the first real challenge Harry and I faced together; with the obstacles of being born prematurely, heart surgery shortly after birth, hypotonia, and me being a first time Mum, the odds were stacked against us. Breastfeeding set the trend for how life would be for us. He would get there in his own time and I would go to any lengths to fight for what I believe is best for him.

There was a mixed reaction from hospital staff, some were super helpful, suggesting I strip Harry off and tuck him in next to me for plenty of skin to skin contact to stimulate my milk. I had help to hand express a little colostrum which was given to Harry with a syringe and I had a very helpful visit from an NCT breastfeeding counsellor. This said, we also had other staff trying to give him formula with no discussion about whether breastfeeding would even be possible.

‘Breastfeeding was the first real

challenge Harry and I

faced together...’

‘Breastfeeding set the trend for

how life would be for us. He

would get there in his own time and I

fight for what I believe is best for him’would go to any lengths to

“For those first few days we just did

what we could to get the expressed milk into him, syringe,

bottle or direct from the breast.”

breastfeeding& Victoria’s

Harry

journey

WRITTEN BY VICTORIA MCGUIRE

22 | downtime


Earlier this year the Swindon Down’s Syndrome Group were contacted by Project Linus UK, a network of needlewomen throughout the UK who donate homemade quilts.

They are a volunteer organisation who donate their time and skills to create beautiful blankets and quilts with the aim to provide a sense of security and comfort to sick or traumatised babies, children and teenagers.

“We cannot reach out to every child but we can help to provide them with tangible evidence that someone cares, along with the physical reassurance that comes with being snuggled up in a quilt.”

The blankets and quilts are being used in our new parent packs, being given to new babies born with Down’s syndrome in the Swindon area.

Fundraisingin action

Project Linus donate beautifulhand-made quilts

Thank youfor your support

fundraising

Toothill FarmhouseBlunsdon House HotelChildren in NeedWiltshire Community FoundationBig Lottery FundGlobal’s Make Some NoiseDiana RowlandsMr & Mrs MastersDominos PizzaBoots, GreenbridgeSian & Paul LavinMarina & Michael Billinge-JonesCopy ColorMr D Griffiths Mr P HiscockPrice ThomasJo MessengerN.Swindon Community Police Sister SisterPegasus Brass BandSwindon Phoenix Rotary

It was definitely a fun day at The Crown Inn Stratton back in August.

Over two hundred people turned up to enjoy

the brilliant bank holiday weather, BBQ, stalls, games and maybe a drink or two all in aid of two great charities, Swindon Down’s Syndrome Group and Phab Kids.

Swindon Pegasus Brass Band warmed the crowd up as they got the musical entertainment underway and were followed by the brilliant Sister Sister.

From cake decorating to rock painting, coconut shy to lucky dip, there was lots on offer for the whole family. It was fantastic to see so many members from the Group come along.

Honda dragon boat team raise £600

Elite Stainless Fabrications are a Swindon based company specialising in the manufacture and installation of stainless steel equipment including the manufacture of micro breweries.

Karen and Mark from ESF built a special edition 60L micro brewery which they decided to raffle to raise money for both Swindon Down’s Syndrome Group and Phab Kids.

Tickets to win the brewery were bought all around the world with the winning ticket being drawn at the fun day.

Bank holiday fun at The Crown

The raffle and fun day combined

raised a tremendous £3082.50 to be split

between the two charities.

Limited edition micro brewery raffle helps two great charities

Earlier this month Jenny Williams and her son Callum accepted a cheque for £600 on behalf of the Group. The donation came from ‘The Wannabes’, a team of 18 rowers, 14 Honda employees and four family and friends who took part in the dragon boat race. They chose us and Prospect Hospice to benefit from their fundraising. Honda kindly donated £500 to the team. And not to mention their brilliant costumes won them best fancy dressed.

24 | downtime


Over six months ago we introduced Jonathan, the Swindon WorkFit Employment Liasion Officer. Jonathan has recently been working with two new candidates, Vivian and Todd.

adulthood

Potential employers are never too far away. In Todd’s case an old family friend gave in to Todd’s persistence a few months ago. Martyn Coles the owner of Coles Scaffolding Contractors Limited had been nagged by Todd for some work experience. Eventually, as Martyn said “I decided to give him a chance”.

This chance has been so successful that Martyn now wants to make Todd’s position permanent. Todd’s mother Vicky, who has been a long standing member

Todd gets paid employment at Coles Scaffolding

24 | downtime

Jonathan is employed by the DSA but funded by the

Swindon Down’s Syndrome Group. Jonathan has been travelling the length and breadth of Swindon and Wiltshire doing a great deal of networking and promotion of the DSA’s WorkFit programme.

Work means different things to different people. Some people want a paid job, some people want to do voluntary or unpaid work and for some it’s all about experiencing work for the first time.

There are huge benefits in introducing work experience as early as possible. Part of Jonathan’s role is to support candidates, schools, colleges and employers to make this happen. Work experience can give our young people a positive experience of work and what it’s all about.

of the Swindon Down’s Syndrome Group contacted Jonathan Grew the Swindon Employment Liaison officer for WorkFit so that Todd and Cole’s Scaffolding could become part of the WorkFit programme.

Although Todd is “part of the furniture” Martyn welcomed the opportunity for his team to have WorkFit training to further their support for Todd. In turn Vicky has found it helpful to understand from Jonathan the paperwork that needs to be put in place prior to full employment, as did Martyn.

Todd has made the BBC news as Martyn and Todd shared their fantastic story to the wider community.

The police team at Gablecross are looking forward to welcoming their second Swindon WorkFit placement. Jonathan met with Vivian and her parents to talk about the types of work and workplace that she would like to work in.

Vivian will start her twelve month work experience placement at Gablecross Police Station working on the front desk.

Jonathan has been working with the team that will support Vivian, providing training and guidance ahead of her start. Jonathan’s role is to help employers to unlock the potential of people with Down’s syndrome in the workplace.

Vivian starts work experience at Gablecross

WorkFit® is a registered trade mark of the Down’s Syndrome Association

like being at the bottom’

‘People listen to me and

I make friends. The

heights are a bit scary but I

understanding...’

‘The WorkFit training

has been invaluable.

It has given us a better

Vivian has been assigned an in-work buddy who will work alongside her in her new role. Joe Beattie who heads up the in-work buddy system at Gablecross, said “The WorkFit training has been invaluable. It has given us a better understanding in general about Down’s syndrome. We appreciate that a structured approach will be a real help and as in any situation, communication is key.”

What doesworkmean?


26 | downtime

SEND services

It’s exciting to be part of the forum. We have been given so many opportunities to spread awareness and make positive change.

My favourite part of being part of the

forum is putting on events. Fully inclusive events where any family with SEND

children can come and feel

completely at ease. Over the summer we worked in partnership with Revolution Performing Arts and Positive Essentials (Mindfulness) to hold free workshops.

It was back in January this year that I received an

invitation to a meeting about forming a new Parent Carer Forum. I didn’t really know what that was but it looked interesting so I came along.

After learning about what the forum does, I felt it was something I could be a part of. I put my name down, got invited to the next meeting, and the next, until eventually here I am over six months later as the Chair of a wonderful committee of five dedicated, passionate ladies with an aim to make things better for families in Swindon with SEND children and to make them feel like they have someone they can turn to who will listen.

Swindon SEND Families Voice give families in Swindon the opportunity to have their say on a range of issues that impact their everyday lives.

Who are SwindonSEND Families Voice?

WRITTEN BY JACQUI WATT

What do we do?• Help give parents

and carers in Swindon a voice

• Work in partnership with Swindon Borough Council, the CCG (Health Services) and other companies to improve the services they deliver to us all

• Organise workshops, coffee mornings, family events

• Signpost parents and carers where to get information and support

Get in touch: 07486 873405 [email protected]

What is a Parent Carer Forum? Their aim is to make

sure the services in their area meet the needs of disabled children 0-25 years and their

families.

We have some exciting events coming up in November! A free Crafts and Sensory Play event and a free Challenging Behaviour Workshop. Please contact us for details on how to book a place.

I am a Mum to three children.

My youngest Max has a

rare brain condition called

Cerebellar Hypoplasia.

Shaping Swindon’s

One of the sessions that we offer is a fortnightly swimming session

at the Thamesdown Hydrotherapy Pool. This hydrotherapy pool gives our members a safe and quiet environment to both learn and improve their swimming techniques.

We use the services of Vicky Hunt, an experienced disability swimming instructor, to provide coaching at both a group and individual level. Vicky will tailor her coaching to suit the swimmers so that everyone can progress at their own pace.

“During the fortnightly sessions, I teach and encourage many swimming skills from learning to swim short distance and develop longer distances over time. I

what’s on

The importance oflearning to swim

The most important reason to learn to swim is safety. Swimming is a life skill, other factors also include a great beneficial way to help with your health and well being. Swimming helps with development of stamina, flexibility, muscle strength and relaxation.

also look at individual needs and develop other water skills including blowing bubbles to submerging to swim through hoops. Over a short period of time you can see the children and young people gain water confidence whilst having fun.”

The sessions are structured so that the learning is followed by some fun. A number of our members have learnt to swim through this route. Others have used it as an extra opportunity to learn technique, including Holly Sullivan, who is now a member of the Down’s Syndrome GB swimming squad. Whatever the aim, they all enjoy meeting up in the water with their friends. When numbers permit, their siblings can also join in the sessions.

WRITTEN BY JOHN STOW AND VICKY HUNT


For more information about joining a session email [email protected]

Thamesdown Hydrotherapy Pool, Jefferies Avenue SN2 7HJ, Monday’s, 6-7pm except for Bank Holidays

28 | downtime

Design by Cailey Whitcher www.nutmegdesign.co.uk | Swindon Down’s Syndrome Group is a UK registered charity. Charity number: 1158449

For more information visit www.swindondownsgroup.org.uk [email protected] | 01793 538335

Registered Office 34 Periwinkle Close Swindon SN2 2QH

@swindondowns @SwindonDowns Swindon Downs Group

Pre-School & Primary School training day

BOOK YOUR PLACE TODAY

For more information or to register for our training day email [email protected]

Wednesday 14 November 2018Venue: Swindon Town Football Club

Documents

or both? work - Swindon Down's Syndrome Group · group of players to the DSActive Football Tournament in Birmingham. We travelled in style on the Swindon Town FC first team coach