Making Chromosomes Count

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A NOTE

From MCC Stacey Byrne Co Founder Dear reader Ever since becoming a #LuckyFew mum over six years ago, I’ve had a vision for an all-encompassing platform about Down syndrome, where parents and relevant professionals could easily find whatever resources they were after, whatever the age group of their child, whatever the topic, and especially where their voice would be echoed Well, Making Chromosomes Count may have taken a village and six years to materialise, but within less than a year, we are now present on all social media platforms (Facebook, Instagram, Twitter, TikTok, LinkedIn) and have managed to produce this magazine, a step far beyond my original vision. I cannot tell you how immensely proud and grateful I am to hold this issue in my hands right now: a high-quality publication that I have no doubt you will enjoy because it is relevant, challenging, thought-provoking, and inclusive of a diverse range of voices and perspectives, including parents, families, friends, organisations, medical professionals and lots more, all connected to the Down syndrome community and all in sync with our mission statement: To showcase to the

world the wonderful kaleidoscope that is Down syndrome and its community.

This vision has been made possible thanks to a fabulous, passionate, eclectic, and international team of researchers, proofreaders, editors, contributors and other wonderful individuals who keep volunteering time they haven’t really got, in order to join us and help us in our quest to shift perspectives.

Please keep your stories coming because with each and every one of them that we receive, read and edit, we feel empowered and comforted by the fact that we are all in the same boat (ship, oil tanker even!) with the same destination in mind: acceptance, validation, normalisation, recognition, representation.

Until the next edition, in May ... Stacey Byrne - Co Founder and Trustee

Lucy, Layla, Rose and Carlyn

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Disclaimer Making Chromosomes Count is providing this magazine as a public service, but it is neither a legal interpretation nor a statement of our policy. Reference to any specific entity does not constitute an endorsement or recom-

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A DAY IN THE LIFE 4

Home is Where the Heart is

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Breaking Barriers

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Through the MCC Lens

10 Swimming for Great Britain

IN THE COMMUNITY 11 Family Fund, Introducing Kindship, Sibs - Support for Siblings 12 Positive About Down Syndrome 14 Fundraising Heroes 14 Leo’s Nurture Project 15 Electric Umbrella

ARTS AND LEISURE 16 A Tudor Heroine With Down Syndrome 17 The Good Hawk 18 3 Seats from the Hero 19 Steph’s Family Holiday Recommendations 20 Venture Arts 22 Innocence 24 3 Curious Caterpillars 26 Drag Syndrome

4 Sisters With Down Syndrome FEATURED STORY

PAGE 40

28 Brother of the Year

ALL ABOUT HEALTH 30 His Trisomy 21 is What Saved His life!!

34 A Story About Edwards’ Syndrome (Trisomy 18) 36 What is Diagnostic Overshadowing

ALL ABOUT EDUCATION 37 A Picture Paints a Thousand Words 38 Ava the Mermaid 39 Chloe Signz 39 Diff-Ability Makaton Choir

Issue1-January 2021

LIVING THE LIFE

PublishedbyMakingChromosomesCount Stacey Byrne - Founder and Trustee Sandy Nasonte - Founder and Trustee Denise Humberstone - Trustee and Editor in Chief MCC Editors

Through the MCC Lens

40 4 Sisters With Down Syndrome

Claire-May Minett - Host Kay Clarke - Video Editor

43 Then and Now

Proofreaders

Janice Jencarelli Corrado, Kay Clarke

Kay Clarke, Janice Jencarelli Corrado, Kathy Waghorn

Social Media Management

Magazine Design

Sarah Mayes

Jersey Girls Creative

MCC Admin

On the Cover

Julie Helen Williams

Claire-May Minett, Kathleen Humberstone, Douglas McLain, Evan Williams, Darcy Fisher,

42 Surviving and Thriving Together 44 We Found Love Through Down Syndrome 45 By Rights

IN THE NEWS 46 Don’t Screen Us Out 47 Useful Links

Lucas Bellamy, Evan Byrne, and Isobel Mayes

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Doug McLain

oug Bonnie and D

He’s my family.

I just introduced him and the world embraced him.

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d Doug with his da

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Home is Where the Heart is Bonnie Clayton Daugherty and her husband Mike opened their home to Doug McLain. Their story shares the challenges involved in creating the optimal adult living situation, and how listening to your heart and thinking outside the box can have excellent results for everyone.

Doug with his parents (the McLains)

a day in the LIFE

Meeting Doug For many years, I led a community-integrated programme to help adults with a wide range of special needs learn travel, job, cooking, library and banking skills. One of the most important aspects of this training was creating behaviour modification programmes to help adults in our programme interact successfully with the wider community,, using positive reinforcement techniques to help our clients gain employment skills so they could begin to earn a pay-check. Twenty-seven year old Doug had been assigned to my group because he had some challenging behaviours. Doug often struggled with following directions and adhering to workplace rules. He might show up to a job site wearing several layers of unnecessary clothing, his pockets filled to overflowing with items he didn’t need — often as much as twelve pounds of extra weight! Doug also had a compulsion to “sneak” and hoard items that didn’t belong to him. This behaviour could pose all kinds of problems in a work environment.

Overcoming these traits would help Doug integrate within the community groups he longed to be a part of, and my job was to help him get there. For our first assignment, Doug and I were scheduled to work at a small shop located within Superior Court in Santa Maria, California, US, selling snacks and drinks to prospective jurors. Given Doug’s behavioural challenges, I knew it would be important for us to establish a positive working relationship from the start. I felt confident that with the right programme, Doug would be successful. Our first day at the shop went smoothly, and I knew that Doug’s quick mind and joy in serving customers would serve him well.

Support from Doug’s Family After our first day of work together, Doug’s parents invited me to their home for coffee. Ramon McLain was the first parent ever to ask me what I

could do to help his son. It was obvious to me that Ramon and his wife Nellie were dedicated to improving Doug’s life in every way and would use every available resource to make that happen. After just a few minutes together, I knew that Doug’s family and mine would have a special bond.

We all agreed that Doug would benefit from participation in additional activities, so I began inviting Doug to some of the community events that my husband Mike and I attended. Soon Doug was spending time at our home for dinners and game nights. After he had joined us on a few day trips, it occurred to me that Doug might enjoy staying overnight in our home. This would broaden Doug’s experiences beyond life in his own family home, and offer his ageing parents some desperately needed respite. The McLains happily agreed.

Mike and I were delighted at how happy that first visit made Doug!

We enjoyed Doug’s quirky personality.

Doug had a habit of changing his clothes several times a day, and Mike and I would find ourselves giggling every time he appeared from his bedroom in a new outfit.

He insisted that Mike and I go to sleep at the same time he did, or he would stay awake with us until we turned in. Doug accompanied us at church, and we were delighted to see him display beautiful manners, shaking hands with everyone he would meet and even hugging acquaintances he’d met in the community. Before meals, Doug always said his special prayer: “Dear Father, my food is good in my stomach. Thank you for membership (meaning friends from church), Bonnie, and Amen!” In time, Doug’s overnight stays became more frequent, and Mike and I really looked forward to them. He brought such joy into our home! continued next page

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Finding a Home Placement for Doug Sadly, after some time with this arrangement, Doug’s mother Nellie passed away. Ramon did his best to continue to care for Doug on his own, with occasional help from Doug’s brothers Bruce and Rick, but as Ramon grew older, it became more difficult for him to provide the level of physical care that Doug required. By now, I was quite familiar with Doug’s abilities and challenges, and I was honoured to be invited to attend a family meeting to discuss Doug’s future living situation.

Ramon felt strongly that Doug would not do well in a group home situation, with other adults with disabilities, as he’d always lived in his family home.

Doug’s brother Rick lived in Brazil with his family, which would be too great a challenge for Doug to negotiate. Although Doug’s brother Bruce lived close by, his position as a minister servicing many churches required frequent travel, making it difficult to provide a consistent schedule for Doug.

As I sat with the family pondering these challenges, I suddenly realised where Doug could live and thrive.

“Mr McLain, Mike and I would love to have Doug come and share our home. Would you consider that option?”, I asked.

Ramon burst into happy tears, as did I! This seemed like such a perfect solution, one that we all knew would benefit Doug.

Becoming a Licensed Home Care Provider Legally, in the US, only family members of a person with a disability or a licensed certified group home provider are acceptable placements for adults with disabilities. Since Mike and I were not family members, we agreed to begin training to become licensed certified home providers. Having worked with agencies for many years as an instructor, I knew Mike and I would prove to be wonderful providers, and we were happy to sign a legal agreement with a local agency who would help us work towards officially welcoming Doug into our home.

Things started off great! Doug looked forward to agency staff visits, and Mike and I attended regular meetings as required. I learned how to keep detailed daily notes, financial and medical records, and logs of each community outing; far more paperwork than had been required as an instructor! I also carefully followed and documented Doug’s behaviour plan and monitored several weekly goals. Every decision about Doug’s care required a doctor’s visit for a signature of approval.

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It was a lot to juggle, but Mike and I were committed to making it work so that Doug could officially live with us.

All was going well until the agency area manager, with whom we had worked closely, retired. The new manager did not have the same level of expertise or professionalism. I’d always spoken honestly with the area manager, whenever I had questions or when issues arose. I never imagined that these conversations could be used against me, until I was referred to as “difficult” to our newly assigned support staff. The agency frequently reminded Mike and me of our confidentiality agreement, which prohibited discussing any concerns with Doug’s family. I felt we were being asked to keep secrets from Doug’s family, and became increasingly uncomfortable with the “support” provided by the agency.

The State Department of Developmental Services had scheduled an audit as part of the licensing certification requirements. Despite having diligently kept the books and records, overseen by the agency manager, there was one medication error

identified, which hadn’t been picked up by agency staff. As a result Mike and I were “sanctioned” and in danger of not receiving our certification. Our home soon became an endless stream of visitors, supervision, more records and more paperwork. It no longer felt like the warm, family-oriented environment that we wanted to provide for Doug. Even more upsetting was that confidentiality agreement with the agency, which prevented us from working hand-in-hand with Doug’s family, the way we had envisioned. Rather than supporting us, it felt that the agency seemed intent on shattering our dream.

oug Bonnie and D

Doug ick, and R , e c u r B Brothers

Bruce, R ick, and Doug

A Make-or-Break Decision Mike and I knew we had to involve Doug’s family in whatever the next steps would be. For our part, we were ready to walk away from the agency, but to do so we would need the McLain’s input. Thankfully Ramon, Rick, and Bruce all supported Doug continuing to live with us. That gave us the confidence to make our decision to leave the agency.

Meanwhile, the agency was hard at work finding a “better” placement for Doug. They told us to take a vacation to work things out, and organised another placement for Doug, far away from Santa Maria, refusing our offer to have a staff member stay with Doug in our home. That “better” placement fell through, and the agency didn’t include us in finding another solution; instead

they contacted Doug’s brother Bruce and asked him to keep Doug for a week, which Bruce agreed to do.

Mike and I went to visit a trusted friend in Florida, Linda Tuttle, whose adult daughter Jamie has Down syndrome. She understood our anguish as we sorted through the options in finding the best placement for Doug.

As the end of our holiday approached, Mike and I were more convinced than ever that the best option for Doug was to continue living with us. We scheduled a meeting with Doug, Bruce and his wife Margie to discuss the situation frankly, and we were relieved that the family agreed that Mike and I should fight to keep Doug in our home, where he was happiest. The next step was a team meeting with the home licensing agency, Doug’s vocational training centre, and his family. Doug was asked if he wanted to move. “I did

a day in the LIFE

that already”, he replied, and told everyone that he wanted to stay with Mike and me.

The Best Place of All Janet, Doug’s service coordinator at the vocational training center, came up with a solution. She helped us set up a regular roommate rental agreement with Doug, which allowed him to legally remain in our home.

Doug now rents a room from us, and we provide 24-hour support. Doug’s family agrees that we should work with whomever we choose to provide Doug’s activities and therapies; most of the time these are provided by Doug’s friends and family.

Today, twenty years later, our situation doesn’t feel “special” to us; it feels just like what we had envisioned from the start: a family life for Doug. We often see Doug’s brother Bruce, and he and Doug like to visit their favourite pancake house for special meals. Doug loves seeing his brother Rick when he comes back to the US for visits. Doug is now 72 years old, and as happens with us all, the years are changing him. While his mind remains sharp, he has some physical limitations. He has painful arthritis, and often needs to sit down to rest. But Doug continues to enjoy an active, engaging life. If you let him he’d drink coffee all day. His favourite game show is The Price is Right, and he’s a big fan of DC comics. He enjoys rock and roll, country, and gospel music. Doug loves spending time in the garden, pulling weeds or raking leaves. He has been known to yell at the weather person on television if the forecast is rain. Doug loves a good party, especially if there is cake involved, and he especially loves celebrating his birthday. For one memorable occasion, we travelled halfway across the country so Doug could share a very expensive cup of coffee with a friend who was also celebrating a birthday.

Our journey with Doug has had its twists and turns, but Mike and I have never questioned that Doug is meant to be with us. Doug trusts us, 100%. His family trusts and supports us as well. For any family considering a placement for their adult son or daughter I recommend looking beyond typical options. Trust yourself.

Know your heart. With a little effort, and a lot of faith, you will find the perfect home for your loved one.

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T

wenty-one years ago Chris Nikic’s parents were told their son might not live long. He was never going to amount to much. They were going to have to take care of him their whole life. At five months Chris had open heart surgery. At three years he needed a walker to walk, and at twelve he didn’t have enough strength to hold his neck up for Disney rides. At seventeen he had four major ear surgeries. His parents were concerned that, after his surgeries, Chris gained weight and was out of shape, so they looked at ways for him to improve his physical fitness. That’s when they embarked on the one percent better challenge. Rather than using his previous obstacles as an excuse to remain limited, they encouraged Chris to focus on motivations to constantly improve. His philosophy was to work hard, measure everything and get one percent better each day.

The initial goal was to do a triathlon, which he completed successfully. At age nineteen, as a keynote speaker in front of an audience of one-thousand people, Chris introduced himself as having a Down syndrome accent, and speaking like he’s from the deep south. Admitting he loves food, video games and his couch, he said it was a challenge for him to commit to training, but he kept focusing on getting 1 percent better each day.

He continued to improve his triathlon performance, then he set himself a new goal for this year, 2020: to compete in an Ironman competition.

An Ironman Triathlon consists of a 2.4-mile swim, a 112-mile bicycle ride and a marathon 26.22-mile run, raced in that order.

It is widely considered one of the most difficult one-day sporting events in the world.

With support from his family, and help from dedicated coaches Chris’s training was intense. An eight-hour training day could include riding one hundred miles on a bike, running for miles, as well as laps in the pool.

Through the training and competitions Chris was expanding his group of friends, and was finding himself included in more community events and activities. Those around him spoke of the joy he has brought into the lives of those he’s met along the way. He is an inspiration.

In an interview for WUFT News Chris said: “You cannot tell me what I can do, and what I cannot do.” He set out to show exactly what he can do, as he became the first man with Down syndrome to complete an Ironman. He did it in 16 hours, 46 minutes, and 09 seconds in Florida on November 7th.

Now he has a new challenge. That is to set a new and BIGGER Goal for 2021. Whatever it is his training strategy will be the same. 1% better every day.

Breaking

Barriers

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Chris Nikic Ironman 2020

Exclusive Interviews

First Person With Down Syndrome to Complete an Ironman

with Adam Pearson - British actor, presenter & campaigner

with Sally Phillips and Ollie - British actress, presenter & comedian

with Mallory Snellen and Tiffany Snellen McDowell - Mallory Paige Designs

View all interviews on our youtube channel:

channel/UC-aqpAW6L3z8ZKW4podc7HA a day in the LIFE

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AT HOME WITH ALFIE

Swimming for Great Britain We were just fourteen days away from departing for Antalya, Turkey, for the Down Syndrome International Swimming Organisation World Championships when we were told the competition had been postponed until October 2020 due to Covid-19.

For our swimmers at Down Syndrome Swimming Great Britain (DSS-GB), this was absolutely devastating.

A

fter so much hard work in and out of the water, they were all initially thinking: “It’s OK. We have a few more months to go.” But within days we were faced with lockdown, and some six weeks later we received confirmation that there would be no World Championships or major international competition for our swimmers until October 2021. For many, this would have been a huge blow, but at DSS-GB we have faced many challenges and, with our swimmers always our number one priority, we got to work with our usual motto: “Onwards and upwards.”

DSS-GB was formed as a charity in 2017 and currently has thirty-six elite swimmers who have qualified to be members, competing at national and international levels for DSS-GB and also within their regions and counties for their clubs. Swimmers currently competing for their country are not our only focus, and we are continually striving to help those who have high aspirations to compete for their country and gain access to club facilities and coaching at local, county and regional levels. Our swimmers just need that little bit of extra help, offered with patience and guidance. We work closely with organisations such as DSActive and UK Sports Association for People with Learning Disability (UKSAPLD), to educate coaches and clubs about our swimmers’ strengths and requirements. This enables us to develop our swimmers from a young age, and we are proud of the fact that we have the largest group of junior swimmers competing on the international stage compared to any other country in

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the world.

Our achievements to date have seen us become European Team Champions in 2017 and 2019 and runners-up to Australia at the World Champions in 2018. It goes without saying that we would love to be the next Team World Champions. In addition, we currently have the World and European Female Mosaic Champion, Ellen Stephenson, and European Male T21 Champion, Mark Evens, who are both multiple world record holders. Over fifty percent of our swimmers hold or have held World Records at either Junior, Senior or Masters Levels. Our success has brought us much publicity, and we are now looking to move the story on further, with the first British Down Syndrome Swimming Championships being held in November 2021, following their cancellation in 2020 due to Covid-19. Our sponsor for this event, The Powerday Foundation, has remained fully committed to making this a very successful event.

So, what’s next for DSS-GB? Lots more positivity and development of Down Syndrome Swimming, not only in Great Britain but also worldwide, where we will be looking to help our international bodies develop, and where we will also look to gain recognition for Down Syndrome Swimming from the International Paralympic Committee. Our work with other countries, such as Australia, and our planned work with our new partner, Teeside University, will hopefully mean that Down Syndrome Swimming in Great Britain has a very bright and successful future at home and abroad.

Home cooking brings along education and social skills for this young boy I was born six weeks early. I clearly couldn’t wait to get out into the world and start baking!

I have a severe speech and language delay, but I find making baking videos really helps my speech, language and my maths as I can practise in a fun, no-pressure environment.

Can you believe I actually used to be afraid of the noise the stand mixer made? I know, you wouldn’t believe it now, would you? Just goes to show you that in life you should always push yourself outside your comfort zone as you never know what you’re capable of achieving until you try.

You can follow me on #BakingWithAlfie

Chocolate Biscuits

Makes approximately 12 biscuits.

ingredients...

100g unsalted softened (room temperature) butter 50g granulated sugar 100g self-raising flour 25g drinking chocolate 1/2 tsp. of EITHER vanilla essence OR almond essence

method...

Preheat oven to 180˚C/160˚C fan/gas 4 Mix butter and sugar together until light and fluffy.

Add either vanilla essence OR almond essence.

Sieve the flour and drinking chocolate into the bowl (to get air in it!) and mix.

Then take out little bits and roll into balls and place on a lined baking tray.

Then using a fork press down onto the biscuits to flatten them. They do spread out quite a lot!

Bake in the oven for 10 minutes.

Leave to cool on wire rack

a day in the LIFE

Family Fund providing grants for families with seriously ill or disabled children

F

amily Fund, UK’s largest charity providing grants for families with seriously ill or disabled children, aims to improve the lives of low-income families by providing items and services that may be beyond their financial reach. These might include computers and tablets, kitchen appliances, sensory toys and outdoor play equipment, all of which can help improve quality of life and remove some of the barriers families may face. Last year, Family Fund provided 89,101 grants totaling over 33 million pounds.

Rachel Mewes, a Family Fund Parent Ambassador, shares the positive impact the charity has had on her family. “I applied to Family Fund for a family break so we could take our daughter Betsy away for a short holiday. Betsy had been born in 2017, two

months premature, with a diagnosis of Down syndrome and duodenal astresia. The first year of Betsy’s life was tough for our family, with repeated hospital stays and numerous tests and interventions. We desperately needed some time together to just enjoy our new daughter.

Family Fund provided us a grant for a five-day respite in a quiet holiday park in Scotland. Away from the pressures of home, we enjoyed exploring the area and taking Betsy swimming in the holiday park’s pool —just focusing on enjoying time together as a family.

It was the start of a healing process for us; we hadn’t realised how much we needed a break from the constant worries until we actually had it. We applied to Family Fund for a Scotland break the following year too. Knowing that we have a break booked, going somewhere we feel

Introducing Kindship

An App Connecting Parents Raising Kids With Disabilities

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arenting is hard. A joy, but hard. Parenting a child with additional needs can be even harder. There are medical terms to learn, there’s equipment to buy, therapists to find, and milestones that pass by unmet. For parents facing these and other challenges, friendship with someone who just “gets it” can mean the difference between coping and thriving.

Let’s say, for example, a Sydney mum was able to connect and arrange playdates with a local family who also have a little one with Down syndrome. Just think of what impact this friendship -- of feeling accepted, included and understood -- might have for these families.

Another mum, living in the US, has a new baby that’s been diagnosed with a rare genetic disorder. What if she were able to connect with and ask questions of at least seven mums living around the world whose children have the same condition? Imagine how reassuring it would be to hear about the lives of similar families that bit further down the road.

Both of these scenarios are true stories of parents who use AbleFinder, a free app and social network built in collaboration with 200+ families. Currently hosting thousands of parents, AbleFinder is a safe, private, and judgement-free space where you can match with other parents who have children of a certain age and diagnosis, live locally, or who have hobbies and interests in common.

Ready to meet, chat and learn from like-minded parents on similar journeys? Download the AbleFinder app or find out more about our community at kindship.co

in the COMMUNITY

safe and not too far from home, helps us to stay positive when times are tough”.

Family Fund offers grants to any eligible family raising a child with disabilities in the UK. To find out more about Family Fund and how to apply, visit: https://www.familyfund.org.uk/

Sibs

Support for Siblings

S

ibs’ mission is that every sibling in the UK with a disabled brother or sister will have access to information and support about the unique issues they face.

Sibs exists to support people who grow up with, or have grown up with, a brother or sister with disabilities. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.

Siblings have a lifelong need for “It’s great to information. They often experience social and read about emotional isolation and have to cope with diffiother siblings cult situations. They also want to have positive relationships with their siblings with disabililike me. It ties, and to be able to choose the role they play means that I in future care and support. don’t feel so Sibs aims to enhance the lives of sibalone.” lings by providing them with information and support, and by influencing service provision throughout the UK. The organisation believes that siblings have rights: Find out more at www.sibs.org.uk.

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PADS (Positive About Down Syndrome) We are here to tell the world the truth about Down Syndrome! Whether you are an expectant parent, grandparent, a new mum or dad, aunt or sister – we are here to help you!

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ositive About Down Syndrome (PADS) was launched in September 2017 - under the umbrella of Down Syndrome UK, a nationwide charity, created by and run by parents and young people with Down syndrome. We maintain close links and collaborate with many other professional organisations. Our ethos is to bring knowledge and empowerment directly to the “front line” where it is needed.

Our aims: to enlighten, educate and inform the public about the realities of life with Down syndrome to act as a critical network for parents and carers at all stages in their journey to provide the reality of all members’ everyday lives to features the experiences of young people with Down syndrome along with those of their family – We know that many expectant and new parents are often overwhelmed by medical information, and by all too frequently outdated, inaccurate attitudes and perceptions to work closely with maternity units, GP surgeries, children’s centres, etc. across the UK, by supplying them a range of professionally designed and produced literature, resources and training. to signpost parents and professionals to the website and to our social media support pages.

PADS has recently published “#NobodyToldMe: The truth about Down syndrome – a beautifully designed and curated book that has received phenomenal feedback. #NobodyToldMe is a

unique publication, full of real-life experiences, photos, passion, and love.

Parents, grandparents, brothers, sisters, and friends share their stories; and young people with Down syndrome write about their lives, hopes and aspirations for their futures.

Sally Phillips, actress and writer says: “Oh how I wish I’d had this book when Olly was born. Full of real families’ real-life experiences of living with and loving their children with Down syndrome, who are all different, but all bringing so much to those around them.”

PADS work with support groups across the UK to provide copies of #NobodyToldMe as well as PADS literature to maternity units, and to gift copies to new and expectant parents It is important to note that founder, Nicola Enoch, spoke at the Professional Midwifery Advocates Conference 2019, exhibited at Better Births 2020 and has been published in the British Journal of Midwifery and the Royal College of Midwives Journal. Nicola also gave a very candid and poignant TEDx Talk: How I nearly terminated my son through ignorance https://youtu.be/F4RDyT-pnMo Midwives have also advised how invaluable they have found PADS as a resource, with one midwife stating: “PADS have been SO valuable to me, as a midwife, and to the team! It has educated us on how to approach the subject around screening as a positive. To make sure we look at Down syndrome in a non-patronising and uplifting way. It’s also enabled me to offer screening advice to women with an unbiased view, setting the tone right. That if a diagnosis of Down syndrome, or any other, is a potential (as it is to all), that the onward journey is supported and that there is so much to look forward to.

“Great timing - the book arrived as I was having a complete meltdown physically and emotionally. I now feel so much more positive and excited to meet my little girl.”

- Expectant mum “If you’ve not read it or been sent it, please ask, as it really is amazing.”

- Expectant mum “This is amazing. Every new/expectant mother should receive a copy. It made my year to read something Down syndrome-related in a book that is not just scientific or dated.”

- Young person with Down syndrome “Just got my copy of #NobodyToldMe. It is so uplifting. What I really appreciate is the sheer scale ... You can’t argue with the weight of this book and the number of parents wanting to share positive stories.”

- New parent “Supportive stories, wonderful photos and beautifully put together.”

- New grandparent “Just what we needed, as existing resources are very dated.”

- Antenatal screening midwife

in the COMMUNITY

Our Support Facebook Pages: DSUK PADS Great Expectations is a closed, non-judgemental, extremely honest, welcoming, supporting, caring and nurturing Facebook page for pregnant women with a high chance or confirmed result of their little one having Down syndrome. We provide a haven to meet and chat with other women on a similar journey. Our dedicated team of mums and midwives are on hand to share experiences, answer any questions and generally provide care and support. https://www.facebook.com/ groups/415274562687672 “ Nicola has also set up pregnant and new parent groups, fathers groups, and she has worked with many professionals to set up groups to support parents with their kids’ speech, education, toilet training and more. Most recently, the #PantsForSchool campaign, with June Rogers, was launched.

Many professionals across the country tell parents to wait to toilettrain, when in reality our kids can be toilet trained in time for school too!”, says Cristina Bowman, Founder of Diff-Ability DSUK PADS Positive about Down syndrome - New Parents is extremely dynamic – with over 500 UKbased parents of little ones with Down syndrome. We understand that some new parents struggle with the news that their little one has Down syndrome. Everyone on the page is extremely supportive, understanding, and caring. Meeting with others is so important and we are delighted to see friendships blossom and parents celebrate as their children flourish. The page is a wealth of information sharing, signposting, encouraging and empowering. No one ever wants to leave! https://www.facebook.com/ groups/2188980851370457 DSUK-PADSPods - Positive about Down syndrome’s information sharing (#PADSPods) is an exciting new initiative featuring a series of video recordings by professional experts, parents (#TopTips), and people with Down syndrome (#MyVoice). We know there is much knowledge and experience around Down syndrome, and at PADS we are passionate about disseminating such knowledge to ensure that children and young people can flourish and to reach parents, professionals and indeed the public. https://www.facebook.com/ DSUK-PADSPods-Positive-about-Down-syndromesinformation-sharing-115042233559347 PADS Early Development Groups (OR PADS PEGS) introduced in September 2020, for children aged 6 months plus. https://www.facebook.com/ groups/4191291714278287 Midwives page https://www.facebook.com/ groups/424425338132698 Optometrists https://www.facebook.com/ groups/208133786565021 Research page https://www.facebook.com/ groups/334295433795793

To find out more about PADS, please visit https://positiveaboutdownsyndrome.co.uk/

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geta copy

via Gum r and Am oad azon

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Fundraising Heroes

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his first issue of Making Chromosomes Count could never have been published without the dedication and support of some generous donors and fundraising heroes. A massive thankyou to the following organisations and people, thank you for believing in our vision!

Alpha FX: not only have you made a very generous donation towards our mission, but we are super proud to announce that you took it to the next level by now displaying our Making Chromosomes Count logo on all your Enduro Motorsport racewear!

Don’t Screen Us Out who generously donated funds to our project.

Kerrie Burch for your consistent and relentless fundraisers within your own business, Butterfly Beauty.

Our very own MCC reporter Claire-May, who made and sold some very lovely face masks and donated the proceeds.

It goes without saying that we are also extremely grateful to Graham Curtis for the invaluable time and effort you spent preparing, organising and running quizzes during lockdown. Your muse has been your beautiful niece.”Every day, Betsy lights up every room she’s in and makes the whole family so proud of her. I wanted to do something useful for Making Chromosomes Count by fundraising. I believe in their vision to inform people about this genetic condition, provide a Down syndrome platform, and quite rightly make chromosomes count!” We know you enjoyed those lively sessions and we certainly appreciated your incredible commitment week in, week out. “I just want to spread as much joy as possible while also highlighting equality for all.”

Leo’s Neonatal Launches Ground-breaking New DS Care Pathway

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eo’s Neonatal, founded in 2018, is a charity providing support to families in the North East whose babies require care in a Neonatal Intensive Care Unit (NICU) or Special Care Baby Unit. Whether through peer partnerships, counselling or accessing community services, Leo’s offers a range of support options for families whose babies are born premature, sick, or with a disability.

Services provided by Leo’s include additional counselling for trauma therapy, eye movement desensitisation and reprocessing, nurture work, sibling support, and child development through occupational therapy and advocacy.

In June 2020, Leo’s made the ground-breaking decision to create a care pathway for families having a baby diagnosed with Down syndrome.

Lottie King, founder of Leo’s, shared “After working closely with a number of families that have babies with Down syndrome, listening to them and seeing first-hand the challenges they faced, we knew we needed to create something bespoke for them.”

Leo’s families are also signposted to specific organisations whose members have experienced the journey of Down syndrome: Down’s Syndrome Association and Positive About Down Syndrome.

And to all the other individuals who have kindly donated: Thank you. As the saying goes: “Every little helps”

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in the COMMUNITY

Follow Electric Umbrella Facebook: @ElectricUmbrella Instagram: @electricumbrellacharity Twitter: @electricbrolly Website: electricumbrella.co.uk

Electric Umbrella A new Christmas song featuring a host of stars performing alongside the learning disabled community, a Great Christmas Online Singalong, and an extraordinary album of songs, due out in February, all written and performed by an incredible learning disabled community alongside celebrities, singers, songwriters and musicians from the world of music and theatre across the globe.

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hen Covid struck in March, ELECTRIC UMBRELLA, a local Watford based charity who use music to enrich the lives of people with learning disabilities, rapidly moved online. It has become an extraordinary and heart warming journey of a small charity evolving overnight into something very special with an extraordinary and far reaching impact.

8 months later, they have delivered over 1500 hours of online programming, bringing much needed joy and opportunity, to people from their Hertfordshire base, across the UK and as far afield as the US, Australia and Uganda. They’ve released 3 singles, written and recorded a complete album, and recently passed their 100th Singalong session.

Electric Umbrella TV, their online magazine show has attracted guests including Sophie Ellis- Bextor, Tony Hadley, The Feeling’s Dan Gillespie Sells & Toyah Wilcox, plus stars from the learning disabled world - Andrew Self (BBC’s Greatest Dancer), Daniel Honeybourne (Autistic concert pianist), incredible bands such as The AutistiX and Electric Fire, Australia’s Got Talent’s ‘Find Your Voice’ choir and multiple stars from the world of musical theatre. Many of these guests have contributed their talents and voices to the album and Christmas single.

They’ve held songwriting sessions with Nashville based country musicians, partnered virtually with Nickelodeon “America’s Most Musical Family” contestants The Rees Family, and are regularly joined on zoom by a group of children in Kampala, Uganda singing their theme tune and wearing their very own Electric Umbrella T-shirts over 6000 miles away!

THE NEW SINGLE - THE BEST CHRISTMAS (in lockdown) epitomises the truly collaborative nature of this charity who are fast carving out a reputation for being the leading lights in online Learning Disabled Entertainment. The single combines over 100 voices of celebs and musicians alongside their learning disabled performers. It’s a truly uplifting celebration of the season in the vein of classic Christmas songs, despite the current circumstance. Very much what the world needs right now.

“The Christmas single happened completely by accident. We were close to finishing the album when Lockdown 2 was announced and someone said the words ‘I don’t want to spend Christmas in lockdown’...

in the COMMUNITY

and before we knew it, we were knee deep into writing a Christmas single! Via Zoom we gathered people’s thoughts, ideas, fears and hopes of what Christmas would look like this year and did our best to capture this weird moment in time. We had no idea what a lockdown Christmas would look like, but we did know it would be better spent together - even if it is virtually!

When we asked our EUTV guests and celebs to add their vocals to the single they jumped at the chance to get involved. Technically it was challenging recording the vocals via phones, ipads, tablets, laptop mics and all direct through zoom. I literally had to grab what I could, when I could. Some were recorded whilst people were in the shops, in the car, in the kitchen and in the bathroom!” Tom Billington, Artistic Director, ELECTRIC UMBRELLA. As the New Year arrives so does the brand new ELECTRIC UMBRELLA album packed with positivity and promise - due out February 2021. Entitled ‘Sunflower Avenue’ it’s been created with new friends and partners from around the world. It is a unique venture, a celebration of what we can achieve together and a fabulous uplifting musical experience.

Mel Boda, CEO, ELECTRIC UMBRELLA comments:“For many people with learning disabilities, living a life of isolation is something quite familiar to them already. The closure of activities, loss of routine, purpose and regular connection due to restrictions, has exasperated this situation leading to increased pressure on individuals and the families supporting them, with a tremendous impact on wellbeing.”

Listen & watch the singles here Full resource pack here: tinyurl.com/yagzrxkt The New Single: tinyurl.com/ycow6qjy The New Video: tinyurl.com/yc9w4p6w Available for Order across all platforms for just 99p: smarturl.it/thebestxmas

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beautiful rooms SHOPPING IDEAS

A Tudor Heroine With Down Syndrome Judith Arnopp is a prolific author of historical fiction set in the medieval and Tudor period. Sisters of Arden is available on Kindle and in paperback, and is available from Amazon and other leading booksellers.

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isters of Arden is a historical novel set at a Yorkshire priory during Henry VIII’s destruction of the monasteries. It follows the experiences of three novitiate nuns: the headstrong Margery, who was left as a baby at the priory gate; Grace, a fallen noblewoman; and Frances, a girl with Down syndrome.

I include every strata of society in my novels and I am fascinated as to how people with disabilities fitted into the Tudor world. We know how cruelly they were treated in the Victorian period, but recent research suggests it might have been easier under the Tudors. Historians have identified a few cases of Down syndrome surprisingly high in the social spectrum. Royal fools, far from being vilified, were valued members of court, provided with the finest clothing and their every need catered for. Henry himself relied on his fool, Will Somer, for companionship. He was one of the few people he could trust in his later years. Fools came in two categories, the innocent or natural fool, and the artificial fool.

“Natural fools” were those with learning disabilities and, although to the modern world this might seem shocking, they were better off than the peasantry.

A fool named Jane appears pictured in a doorway in a portrait along with Henry and his family and we know that after the death of Anne Boleyn, Jane passed into Princess Mary’s household and later entered the service of Katherine Parr. This was high company indeed, but what of other, less fortunate souls? The evidence is scant, but it seems likely that, abandoned by their family, a number ended up in monastic households. (Read more in John Southworth’s Fools and Jesters at the English Court and Philippa Vincent Connolly’s Disability and the Tudors: All the King’s Fools.)

The Tudor world was a complex society with many similarities to today. In my novels there are no villains and no saints. Instead I present a very human mix of flawed characters. I have written about queens, kings, princesses, prostitutes and costermongers. Sisters of Arden is my first novel to depict a person of disability as a lead character. Frances is dependable, straightforward, good with animals, loyal to her friends and bewildered by her sudden expulsion from the priory into the secular world. Frances is loosely based on a very dear mem-

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ber of my family who is also kind and funny and, like Frances, loves to sing – rather badly and off key. Frances receives no special treatment from her companions, but sometimes she takes the lead and they learn from her. She is taken for granted, but they love her, worry when she is in danger, and risk their lives on her behalf. Despite her challenges and her extra chromosome, Frances emerges as a brave, positive and resolute heroine. I thought it was about time.

“I thought it was about time.”

Judith Arnopp Author

arts and LEISURE

The Good Hawk

An epic fantasy set in an alternative version of Scotland 1. Tell us a bit about ‘The Good Hawk’.

The Good Hawk is an epic fantasy set in an alternative version of Scotland. It’s about a clan from the Isle of Skye that gets invaded and enslaved by warriors from across the seas. The only two people to evade capture are a fifteen-year-old girl with Down syndrome called Agatha, and a fourteen-year-old boy called Jaime, who suffers from anxiety and low self-esteem.

Together, these unlikely heroes must travel across the haunted mainland to try and rescue their family. It’s been described as ‘Game of Thrones for teens’ which I think sums it up quite nicely.

2. What inspired you to write a novel?

I was inspired by so many things: children I used to teach, Scotland and its stunning landscapes, books I’ve read and loved throughout my life, some of my favourite TV shows and films. The book is a real mix of all those things.

3. Why did you choose to have a heroine with Down syndrome?

I spent about five years working as a teaching assistant at a school for children with additional needs and it struck me that I’d never read (or even heard of) a book featuring a protagonist with Down syndrome. That didn’t seem right to me. I believe every child deserves to see themselves reflected in the books they read, so I wanted to create a book with an awesome heroine that they could relate to and be inspired by. The book is not about Down syndrome. It is just a part of who Agatha is. She is flawed and makes mistakes - just like we all do - but she is also loyal, kind, and wonderfully determined. I wanted readers to look past her disability and see her for the incredible human she is.

Q&A Joseph Elliott with a copy of his novel

with author Joseph Elliott

Twitter: @joseph_elliott Instagram: @joseph_elliott3 Website: http://www.joseph-elliott.net Links to places it can be bought: HIVE (Which supports local independents): https://bit.ly/3bWswMs FORBIDDEN PLANET (Exclusive signed edition): https://bit.ly/2JJuBz6 AMAZON: https://amzn.to/34bNlAS

arts and LEISURE

4. What did you enjoy most about writing the novel and what did you find hard?

I loved writing Agatha’s sections. In many ways they often seemed to write themselves; I could hear her voice so clearly in my head, and she would often make me smile with some of the things she came out with. I found writing the final chapter hard; the book is the first in the Shadow Skye trilogy, and I wanted an ending that felt conclusive, yet also left the reader wanting. It took lots of editing, but I’m very happy with how it turned out.

5. Who do you think would enjoy reading this novel?

When I first started writing the book, I didn’t write it with a particular audience in mind. I was simply writing the kind of story that I like to read. As a result, I’m hoping adults will enjoy it as much as children. It’s suitable for anyone aged eleven or over, and I think it will appeal to fans of Game of Thrones, His Dark Materials, Michelle Paver and Garth Nix. The Down syndrome community has also been really supportive of it, which makes me incredibly happy.

6. What do you hope this novel will achieve?

I’m hoping it will challenge people’s perceptions of what it means to have a learning disability and to inspire all readers that no matter who you are or how others view you, you can achieve remarkable things. makingchromosomescount.co.uk

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3 Seats from the Hero Matt Wixon has never met “Teddy”, a boy with Down syndrome who is the main character of his new novel, 3 Seats from the Hero, but the author says he can hear Teddy’s voice, see his face, and imagine the way he interacts with everyone.

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att Wixon has never met “Teddy”, a boy with Down syndrome who is the main character of his new novel, 3 Seats from the Hero, but the author says he can hear Teddy’s voice, see his face, and imagine the way he interacts with everyone.

“Teddy is fictional, but he feels very real to me”, Wixon said. “I wrote about a seven-year period in his life and that felt like spending time with him. It’s strange to find yourself rooting for a character when you’re the writer of the story, but that’s how it felt.”

Wixon’s wife is a special-education teacher who works with children of varied abilities, and as a journalist for the Dallas Morning News, he got to know a young man with Down syndrome. Those were among the inspirations for the book, and especially the charming character of Teddy, who is described as: “The baseball star’s little brother, the boy who dreams bigger than his challenges, the boy who longs to prove he is more than special.”

The author believes that people with different abilities are not represented enough in books and movies, and often they are not portrayed accurately. That was motivation to make Teddy the centre of the novel, but Wixon said he didn’t want it to be a novel about Down syndrome.

“It’s a novel about Teddy and all the people around him”, Wixon said. “I wanted Teddy to be like everyone else because people with Down syndrome are like everyone else. Teddy has strengths and weaknesses just like all of us, and he makes mistakes and learns from them, as we all try to do.”

The novel follows Teddy and his best friend, Michael, along with their families, during the inevitable highs and lows of growing up. The book is described as: “A story of parents and children, brothers and sisters, the things that bring us together and the heroes who emerge when we’re falling apart.”

The title of the book comes from Teddy’s love of superheroes, along with his great desire to be the hero himself. But Wixon said the title applies to all the characters, and he hopes readers will see that 3 Seats from the Hero is a story about families and friendships, understanding and redemption, and the heroic potential in each of us.

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Teddy, the character he knows so well, is at the heart of it all.

“I wanted to fully develop all the characters so I could show how much they were affected over the years by Teddy. All the characters grow and change throughout the novel, and at the centre of those changes is Teddy,” Wixon said.

“Teddy might not always realise it, but he is a giant force in the lives of the people whom he loves and in the community beyond.

He’s a great example for all of us, because we all have our own special gifts, and heroism comes in many forms.”

arts and LEISURE

Steph’s Family Holiday Recommendations When we first started on our journey with our daughter Jossie, we would never have dreamed that we would be such frequent travellers. We envisaged that it would be too challenging.

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his was before we realised that our son, Micah, would also have challenges, due to a rare chromosome disorder. Now, four years into our journey with Jossie, we go on regular adventures throughout the UK. The hubby and I started married life whilst camping in a field in Cornwall, so it seemed only right to continue with this tradition. We initially started our adventures in a little trailer tent, but we are now fortunate enough to venture off in our motorhome. For us, it’s our reset button, a way to bring the daily chaos to a slower pace. You see, Micah doesn’t deal well with unfamiliar places. Hotel rooms bring their own challenges. So a tent, and now the motorhome, have become familiar spaces, and one less challenge. And we all need less of those.

One of our favourite places is the Isle of Wight and in particular the Orchards Holiday Park. We like their accessible bathrooms and family bathrooms. They have plenty of space to manoeuvre. The island itself has many beautiful walks that are wheelchair friendly. You can walk from Appley Beach all the way along the promenade to central Ryde. Although the beach at Appley has no ramp, it does have only a very low step down to the sand. Further down the promenade, in Ryde, there are ramps. The water goes a long way out, but that has its benefits if you worry about the dangers of the sea being close. There is a wonderful café at a place called Fort Victoria. Café Verde is a beautiful spot for a coffee or a bite to eat.

The inside is a little small, but the outside is the perfect spot to sit on a nice day. The lovely lady on the till has two children with autism and is great with the children. A few miles away, Monkey Haven is also great for an accessible day out. There are a few slopes, but overall, they’re manageable. Yet another good trip is to the Isle of Wight Steam Railway, which is fully accessible to wheelchairs. If, like us, you are picnic-lovers, pick up some delicious goodies at the Scarrots Lane Bakery. They have everything from giant French fancies to tasty pies. Then, why not take a drive to Cowes and park near Egypt Point. Take a walk along the promenade and picnic on the green, and watch the yachts sail by. The Hartlands, which featured on Escape to the Country, is also located on the Isle of

Wight and is a holiday centre for those within the autistic community.

Another of our favourite destinations is Keswick. It’s an area of outstanding beauty and you can’t help but feel relaxed. There’s something magical about watching the sun set over the peaks in magnificent swathes of colour. We tend to stay at the Camping and Caravan Club Site. For us, it’s the perfect spot. We could happily park up there for a week and not drive anywhere. The site has dedicated, accessible facilities. The town of Keswick is a short accessible walk away, and there are plenty of lovely places to eat. We went at Christmas and it was stunning. We went to a lovely little café called Laura in the Lakes. We sat outside and had a bite to eat. The food was delicious, and the service was some of the friendliest we’ve ever received. They were keen to respond to Jossie in Makaton and they asked how to sign. This is always a bonus. Alternatively, if you turn right out of the camping site and walk over a field, along a good, solid wheelchairfriendly path, you’ll come to an ice cream parlour, café/restaurant, and a theatre. From there you can enjoy great views of the lake and surrounding peaks and, in the evenings, look up at the stars.

Yet another of our regular haunts is Golden Valley, Derbyshire.

Now, in all honesty, when we go to this site we tend to just stay put and enjoy it. We go several times a year as well as attending an annual meeting of families from the Down syndrome community. The campsite has three play areas, a couple of sandpits and an on-site pub. They also have an accessible shower room which is useful. The staff are always very friendly and great with our two little ones. In the local area, there are a variety of places to visit. Midland Railway is nearby, and wheelchair users can travel in the guards’ van, accompanied by a carer.

So, if you fancy a camping adventure why not give it a shot.

We’ve found it’s an easier option, and lots of fresh air and freedom is great for a family. Then, when the youngsters are worn out from the day and you can relax, put on the kettle, or open a bottle, and just enjoy.

There’s something quite healing about raising a glass under a canopy of stars.

Life is short and the world is wide.

arts and LEISURE

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beautiful beautiful rooms rooms SHOPPING SHOPPING IDEAS IDEAS

Dominic Bennett

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Dominic Bennett has creativity running through his veins. Since joining Venture Arts in 2013, he’s produced remarkable work exploring graffiti and hip-hop through to Little Shop of Horrors and The Wind in the Willows. He has become a highly skilled ceramicist and multidisciplinary artist.

“You can come here and do anything you want. You can become a famous artist.”

Venture Arts

Artist Spotlight

In the last few years, Dom’s desire for fame has started to become a reality as he makes waves in the art world. In December 2018, he won the title of “Young Creative of the Year” at the Manchester Culture Awards. His journey to success was already underway in 2017 when he created a playable arcade game – Weasel Nation – to be exhibited in the foyer of HOME Manchester. Dom was the only learning disabled member of “Project X” – HOME’s collective of young, emerging talent that took over the venue for a whole year.

More recently, in 2020, Dom exhibited in the Manchester Open Exhibition at HOME. Two of his works were selected, one inspired by Little Shop of Horrors and one by Wind in the Willows.

Dom said, “In the exhibition you can see my Army Of Weasels. I made the weasels out of clay. I made samples of them which are part of this piece.

They went in the kiln and I glazed them with red because they have been in a battle. Then I taught lots of people to make their own members of the weasel army at galleries like Waterside Arts Centre and a group from HOME. Now they are part of the weasel nation”.

The Army Of Weasels received another boost this summer when, across Manchester, one hundred families with children with learning disabilities, were sent materials to make their own clay weasels. The project was funded by Manchester City Council and led by Dominic, who produced a video tutorial for the families on how to make ceramic weasels. The families got to keep some of the weasels themselves, on the condition they submitted one weasel to join the Army Of Weasels. And so, Dom’s weasel nation continues to grow! In addition to the new weasels one lucky creation is to be immortalised in bronze. After Dom and his weasels made an appearance on BBC news, Bronzecast contacted Dom and they are now in the process of creating a bronze addition to the army.

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arts and LEISURE

Empowering People to Create Phenomenal Art For over thirty years, Venture Arts has been supporting learning disabled people to reach their life potential through the visual arts. We run a busy art studio in Manchester six days a week throughout the year, and work with over three hundred learning disabled adults and children every year.

At Venture Arts we see potential and take the time to foster talent. Our artist tutors work collaboratively with our artists, learning from each other through the process. Many of our artists have big ambitions, as do we. We want to shape a world in which people with learning disabilities are empowered, celebrated, included and valued in the arts, culture and society. To that end, we create opportunities that place people with learning disabilities at the forefront of Manchester’s culture, as artists, audiences, participants and workers.

In doing so, we help to debunk stereotypes about what is possible, as those organisations who have worked with us can attest to.

Amy Ellison

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my Ellison has been coming to Venture Arts since 2013 and gets involved in as many events and projects as her hectic schedule will allow. She’s a member of our learning disability-led steering group and is a talented artist in many art forms, including photography, textiles, ceramics and illustration. Amy is especially passionate about photography and led a project in 2018 in which she invited children with Down syndrome and their families to our art studio, where she took portrait photos of them, beautifully capturing their spirit and personality.

Amy is one of three Venture Arts artists who took part in our Conversations Series II project, a collaboration with emerging contemporary artists that asks questions about labelling and identity of artists. She said she felt proud to be part of it.

“I’ve been making iPad drawings and clothes. My work is going to the Tate. I’m so happy and grateful.”

Amy Ellison Artist

Most recently in 2020, Amy had work exhibited as part of the Conversation Series II: Other Transmissions exhibition, at both The Whitworth Art Gallery in Manchester and the Grundy Art Gallery, in Blackpool. Although the exhibition was cut short at The Whitworth due to the COVID-19 pandemic, the gallery has chosen to extend the run of the exhibition, so Amy’s work will be on display when the gallery re-opens in Autumn. In another proud moment for Amy, her piece “Cocktail”, has been purchased by the Grundy to form part of their permanent collection.

At Venture Arts we are working hard to ensure Manchester’s artists with learning disabilities are visible, valued and able to play a full and active role in our city’s culture. Given the invisibility of learning disabled people in cultural spaces, this is essential.

We hear of people being talked down to, underestimated, discriminated against – or outright ignored. makingchromosomescount.co.uk

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Trailer: https://vimeo.com/333123248 Disability Awareness video: https://www.youtube.com/watch?v=0w3gYUS44QQ

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arts and LEISURE

Innocence

Starring Tommy Jessop (BAFTA Nominated Coming Down The Mountain), Alice Lowe (EMMY Awardwinning Black Mirror), Laurence Spellman (Ready Player One), Richard Glover (Rogue One), Bethany Asher (Wild Bill) and Faraz Ayub (Bodyguard)

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nnocence, a film presented by Portsmouth Down Syndrome Association, is a fast-paced crime drama created by the BAFTAnominated writer-director Ben Reid. This topical film shines light on the need for a more nuanced representation of disability on screen.

When a worker falls to his death at a care home, it appears to be a terrible accident. But when a detective questions a young man with Down syndrome spotted at the scene, they uncover a crime more shocking than anyone imagined.

This short has been selected for over twenty film festivals, including Foyle Film Festival, Aesthetica Film Festival and was long-listed for a 2020 BAFTA. Innocence has won numerous high profile film awards including the Don Quixote award at the OSCAR qualifying 60th Kraków Film Festival.

Director & writer Ben Reid works in the fields of drama, documentary, and commercials. His films have been broadcasted on BBC, Channel 4, Sky, National Geographic, Discovery, NBC and Netflix.

Producer Ken Ross is an award-winning filmmaker. After having his son Max, who has Down syndrome, Ken has spent sixteen years making positive changes for diversity and inclusion. He is a Vice-Chair at Portsmouth Down Syndrome Association as well as a trustee.

Producer Tibo Travers is the founder of Sweetdoh, a production company whose short films have screened at festivals including Palm Springs and Galway Fleadh, His films have sold worldwide to Vice, Canal+, and RTÉ.

Innocence was screened at the Disability Film Festival from Thursday 3rd December - Sunday 6th December.

Award-winning short starring actors with Down syndrome redefines representation in film

makingchromosomescount.co.uk

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3 Curious Caterpillars

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e are thrilled to introduce you to a very special children’s book which is due to come out sometime next year. It’s called The 3 Curious Caterpillars.

Written by Denise Humberstone and wonderfully illustrated by the very talented Sandy Nasonte, this book is very exciting for a number of reasons.

The seed was planted during the first Lockdown. Sandy and Denise (both on the MCC team) had a dream of creating a fun children’s book featuring fantasy characters, some with various disabilities, others mainstream.

Following many back and forth zoom calls, they decided to go with a great trio of caterpillars being looked after by a butterfly. One of the caterpillars has Down syndrome and uses Makaton to communicate. His brother is on the autism spectrum.

The third brother is mainstream. The butterfly who is looking after them has Down syndrome and is very able and independent. Together, they go through many exciting adventures with a very diverse community right behind them.

Their vision is to create a platform through a series of books where not only disabilities are represented, but where mainstream children are exposed to those disabilities with up-to-date language and can ask whatever questions about it.

It will hopefully convey the message that no matter what you look like 24

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Hector the Butterfly outwardly or cognitively, you are worthy of love and friendship.

In the meantime, until the book is out, Sandy wanted to put together a colouring book showing the characters at different stages of their development and acting as an introduction to the endearing characters.

Hector the Butterfly is a self-advocate with Down syndrome. He looks after his 3 little rascal caterpillars.

Cheeky Charlie also has Down syndrome and is non-verbal, signs to communicate, has a great sense of humour, is very cheeky indeed, wears glasses and is a bit crossed-eyes at times.

Hippy Henry is on the autism spectrum.

Fit Freddie is mainstream and into health and fitness.

Sandy and Denise trust these characters will be great conversation starters about differences between the children and the adults reading the books with them.

What a better way to start inclusion? They think it’s yet another way of raising awareness about our children. They hope you enjoy reading them.

We will make sure to let you know when and where the books are available.

arts and LEISURE

Cheeky Charlie

Fit Freddie

Hippy Henry

Exclusive Colouring Book

28 pages

An exclusive colouring and activities book created for Making Chromosomes Count

arts and LEISURE

All monies collected through the sale of this colouring book will go towards the funding of our magazine: Making Chromosomes Count.

A relevant, challenging, thoughtprovoking publication featuring an inclusive and diverse range of voices and perspectives from parents, relatives, friends, organisations, medical professionals and more, all connected to the Down syndrome comhelp su pp munity.

MCC m ort the

geta copy agazin e

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Drag Syndrome Culture Device is an art organisation that focuses on artists with Down syndrome, producing high class dance, theatre, drag and other art forms. Their director, Daniel Vais, met with us to talk to us about Drag Syndrome.

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wo years ago, Culture Device set up Drag Syndrome, but how did it begin? “We went to a venue that invited us to perform and the venue held a party. I went along with Sarah Gordy to see the space. During the party there were a couple of drag queens performing and Sarah said, ‘That looks like an interesting art form.’ I asked her if she would like to try performing and she was delighted. I then asked the rest of the artists who were all very excited. They researched drag and the history of drag and all types of drag. We did a one-off experimental performance and it was incredible. They were absolutely fantastic and the audience went crazy about how good they were. We then set up another event that was sold out in five minutes. And then it took off. We started performing in festivals and other venues and we started touring the world to great success.”

The stars of Drag Syndrome are Horrora Shebang, Justin Bond, Gaia Callas, Nikita Gold, Davina Star, Jonny Medals, Lady Francesca, Lady Mercury and there are always new artists joining the group. The newest edition to the troupe is Miss Christytina and she joined in for the first time at an online event.

Drag Syndrome has performed all over the world, in Star Davina such varied locations as the USA, Mexico, Italy, Sweden, and of course the UK. In 2020 Drag Syndrome had another world tour booked, but unfortunately it had to be postponed due to the coronavirus pandemic.

Daniel describes the reception of Drag Syndrome from the audience as “Incredible. There are full houses everywhere we go with an interesting crowd attending.

We have a mix of people who are into drag, who are into contemporary art and culture, people with learnang Sheb a r ing disabilities. So it is quite a mixed o Horr crowd.”

Yet, Daniel told us that it has not always been plain sailing. “In the USA we had backlash. It was all over the news in the USA and reached the New York Times. A big arts festival invited us to perform, but the week before the show the owner of the venue pulled out.” He questioned that the performers had decided to be drag kings and queens themselves. “It started when a parent who had a child with Down syndrome complained to the venue and 26

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put pressure on the owner to cancel our act, and he did. What he did was completely wrong and very discriminatory. People infantilise people with Down syndrome and that’s the problem. Nevertheless, we found another venue and it sold out and so we had to add another show which also sold out. We had great support. The media really supported us. It got us into the mainstream art media.”

Despite this one unpleasant experience, Drag Syndrome have found that they have incredible supporters. Renowned UK singer Annie Lennox is one of their biggest fans. Daniel states that Drag Syndrome performers are “Accomplished.

Professional. The artistic level is high. That’s why people love us. They don’t love us because of the extra chromosome. When Nikita Gold you focus on the positivity the haters can wait in line and queue. We don’t really react to haters. Some people just don’t want people with learning disabilities to be at the front of art and culture or to have a voice. You are missing out on incredible wisdom Lad y Fran Lad y Fra cesc a sca nce and talent if you don’t allow people with learning disabilities to express themselves. You experience a fresh way of looking at things. Drag Syndrome don’t do what we do for society. We are not activists. We are an art company.

Our action is what we do. We do it because we want to do it and because we enjoy doing it and the artists are master performers.”

Justin Bond So, what is it like to attend a Drag Syndrome performance? “A Drag Syndrome show is high energy performance, highly entertaining, edgy, exciting and wonderful,” Daniel describes. “It’s just mind-blowing. They get the audience all hyped. Most people say, ‘I am so glad I left my house to see the show.’

They leave high spirited. Also, this is exposure to people who may have never met a person with Down syndrome performing. There is also a surprise element. You see what people thought about people with Down syndrome shattered”.

arts and LEISURE

Daniel expands upon the perceptions of Down syndrome he has come across outside of the arts world. “I’ve heard a lot of stories from parents that when they give birth the first thing they heard from the medical staff is ‘I’m sorry’ instead of ‘Congratulations’. They don’t know the value of people with Down syndrome.

They are a gift to humanity. I see more love and wisdom and high spirits in my friends with Down syndrome than in anyone I know. We are blessed to have them. So instead of seeing it as something that is bad, we have to celebrate it.

They have something that we all want: Kindness, compassion, humour and love. A lot of people read a lot of self help books just to reach this point. Instead of reading self-help books, spend time with people with Down syndrome and you will learn a lot. This is something we should cherish as a society to have what they call a ‘disability’. It’s not a disability. The more we can give people with Down syndrome space in society, the better society will be. Especially these days. If we can’t be kind and compassionate then we’re going down. It’s time for people with Down syndrome to lead and teach us.”

What kind of impact has Drag Syndrome had? Daniel states,”Our videos on social media are being viewed 20 million times.

We have a big audience. This is a great platform to educate people. A lot of art and performance festivals invite us which means we are already out there and we have made an impact in art and culture. In places like the Tate Modern, South Bank Centre, Royal Festival Hall and the Royal Opera House. This is what we will continue doing: putting artists with Down syndrome in high places where they belong. We are affecting society by people being exposed to us and learning about us and really enjoying the craft of the artist. So that anyone that can see someone with Down syndrome will see their potential.”

“It’s just mindblowing. They get the audience all hyped.”

What are Drag Syndrome’s [OR CULTURE DEVICE’S???] plans for the future? “We want to continue developing research and development on Waiting for Godot, we want to keep touring with Drag Syndrome and we want to tour other dance productions. We have a couple of big projects in the pipeline with major art institutions with a famous artist that is in development now.

We want to collaborate with other artists and create online activities. We will continue creating amazing work and show our work around the world”.

To find out more about Culture Device, please visit https://www.culturedevice.org/

Rowan and Matt

Brother of the Year

You’re nineteen. You’ve invested £3000 as well as eighteen months of the past three years into studying what you love the most: Sound Design for Games. You’re all set!

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nd then the bombshell drops. Your fifteen-year-old brother, who is obsessed with YouTube influencers, is begging you to not only create a YouTube channel for him but to take it to one million followers. You love your brother. Your brother has Down syndrome. What do you do?

At first, you laugh it off, then brush it off, or try to. Matt is relentless, though and won’t take no for an answer. Nevertheless, the dreaded seeds of doubt are planted: whether to give up your own aspirations in order to pursue someone else’s dream.

It took Rowan five months to make a decision. Five months of weighing up the pros and cons. Five months of agonising introspection.

If he was going to do this, he wanted to do it RIGHT. He wanted each video to be different, each with a theme that Matt would come up with. And it doesn’t seem like Matt is running out of ideas anytime soon. Rowan would never film Matt unless Matt wanted him to (which is a given!). He didn’t want the videos to focus on Down syndrome; he wanted them to be fun, humorous, and reflect Matt’s hilarious personality.

Rowan had a long chat with his parents, and with their full support, he took a sharp turn from his career path as well as a giant leap of faith. For this project to even have a remote chance of success over the next few years, it would have to become a full–time, unpaid job. Rowan knew what he was about to embark upon: Forty to sixty hours a week of preparation, footage and editing, in order to upload one video per week, in addition to the marketing side of things (definitely not his forte by his

Youtube: Matt and Ros homemade videos tinyurl.com/y8sdjq8n

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own admission, but working on it), promotion, phone calls and emails.

Two years on, half of Matt’s dream has materialised. Their YouTube channel is up and running and each video will leave the viewer in stitches and not necessarily for the right reasons! We can vouch that Rowan has remained true to his principles, and we love how he raises awareness of Down syndrome without even trying! We urge you to go and have a look at their labour of love and subscribe so that Matt can have the other half of his dream come true. But, beware, there may be a bit (a lot) of swearing involved (from Matt of course). If you can, leave them a message in the comments.

Rowan had never really reflected on his brother’s condition. He’d grown up with it and just took it for granted. But lately, he’s started to notice people’s stares and looks, all of which became additional seeds for a new project: a documentary on what it means to live with Down syndrome. It’s in its gestational stage but it will have Down syndrome at its core. On the one hand, Rowan wants to document the growth of their YouTube channel until it reaches its goal of one million followers (however long that takes) but he is also very keen to explore the various avenues of his brother’s condition and disability in general, here in the UK, in other countries, now and in the future.

You’ve guessed it, Rowan is a deep thinker, but he’s also a doer.

The teaser of his documentary was featured on BBC upload (Facebook) which is how he grabbed our well-deserved attention.

Facebook: Matt’s Mad World Instagram: @Mattonyoutube Twitter: @Rowanfilmsfilms

arts and LEISURE

Like sugar and spice, siblings make things extra nice.

AQUAMAN...but lower budget

Ollie and Cameron

Matt is the Anti Christ (666 sub special) Oscar, Alfie and Flo

FIFA 21... but lower budget

GHOSTBUSTERS...but lower budget arts and LEISURE

Bertie and Dei

Ellis, Cameron, Marcus, Leah & Mason makingchromosomescount.co.uk

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“His Trisomy 21 is What Saved His Life!!”

Medical professionals, we do love you, but please don’t be blinkered by Down syndrome when assessing our children!

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’m not saying you shouldn’t take it into account, of course not, but see it where it belongs and that’s in the background. I know. My four-year-old son was on the brink of death because of blinkers. And he’s not the only one. Please listen to us!

We see it time and time again; Down syndrome being the designated culprit of a symptom or of an unexpected outcome.

It is a concern that needs highlighting both for medical professionals and parents. Medical professionals, so they remain more vigilant and unbiased in their assessments and listen more to parents’ “gut feelings.”

Parents, so they are more empowered, less intimidated, so they dare to question doctors’ solutions when their gut feelings scream at them that something doesn’t tally up.

Evan’s case, although extreme - I grant you that - is the perfect illustration of how wrong things can get, how fast they can

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escalate and how even faster they can deteriorate when an extra chromosome is thought to be the sole explanation.

Let me give you the full picture. Let me tell you about that extraordinary medical ride our whole family wish we had never been on.

There are days when, no matter how hard I try not to, my brain gets sucked into the claws of that very unpleasant time of my life and plays it on a loop, and I can’t find the stop button. It’s been described as Post-traumatic stress disorder (PTSD) episodes, triggered and accentuated by our current way of life in lockdown.

It all started at the end of November 2018. Evan was four and a half years old. He went into hospital to have his adenoids and tonsils removed, which meant he was off school for three weeks. Everything went well.

all about HEALTH

Sam, Matt, Evan, Olly, Stacey, and Owen

beautiful rooms SHOPPING IDEAS In January 2019, he went back in for a scheduled heart operation.

A vascular ring around his oesophagus was causing him all sorts of issues such as respiratory problems, recurrent chest infections, aspirating episodes, stridor, etc. He was in hospital for eleven days and off school for four weeks. Unfortunately, the operation itself was not a success as the damage to the oesophagus was greater than anticipated. Whether Evan will still have to undergo surgery to remedy this is under investigation.

Stacey and Evan

intubated him and fitted him with Comes the fateful day: April a nasogastric tube. They told us he 14 2019. Evan’s skin was motley, would have died within the next and he had a high temperature that hour had they not intervened. wouldn’t come down with Calpol.

I still get the shakes when Not wanting to take any risks, I I remember the ambulance passing took him straight to the hospital me by, siren full blast, with my fourwhere he has open access due to his year-old son in it, in a coma, fighting heart issues. It looked like a nasty for his life, his dad by his side. The viral infection, so they decided to trip seemed to take forever. How I keep him. The blood tests was able to drive, I have no idea. I showed he also had a guess I was on autopilot while my bacterial infection, brain was trying hard not to lose but they couldn’t the plot. I had another three sons to tell where. And think about. I needed to sort out lothen it all gistics of some sort so that we could started going focus entirely on Evan. We were downhill right in the middle of Easter break. over the We don’t have relatives who can next four days. An X- help out so Owen, my twenty-yearray revealed old son, ended up taking two weeks off from work so he could look after a chest his two brothers: Sam, 11, and Olly, infection, our non-verbal, three-year-old with so naturally autism. I must have done somethey gave him thing right in my life because Owen antibiotics, but stepped up to the plate brilliantly, there was no imand was thankfully able to work on provement. He was reduced hours when school actually getting worse, We eventually arrived at the so they tried another, and hospital. And guess what? It wasn’t another… because Evan had And here is Down syndrome where the pivotal mis“THE that the antibiottake was made. Pivotal ANTIBIOTICS ics were taking because everything that longer to work. went down from then ARE TAKING NOT AT ALL! on cascaded from it LONGER Brace yourselves where a lack of action TO WORK now: Turns out created a life-long ‘’butterfly effect.’’ A BECAUSE EVAN he was admitted into their Paeconsultant told us: HAS DOWN diatric Intensive He was in fact SYNDROME.” Care Unit with … DYING. pneumonia in My husband both lungs, Lower Respiratory Tract demanded they do something, Infection, Acute Respiratory DisNOW! They weren’t concerned at tress Syndrome with significant venall but obliged and agreed to call a tilatory requirement and hypoxia to consultant from another hospital such a degree that Extra Corporeal for advice. Lo and behold, when the Membrane Oxygenation (ECMO) consultant on the other end of the was considered. He had to have a phone was given all the details, he drain inserted into his right side for sent for a retrieval team immediparapneumonic effusion, and he had ately. What a difference! They set to a pneumothorax (collapsed lung) as work straight away. Evan needed to be blue-lighted to the other hospital, a result. The list goes on … but not until they could perform continued next page intensive physiotherapy on him.

They put him in an induced coma,

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beautiful rooms SHOPPING IDEAS As the fluid in his lungs had turned really hard, he needed intensive physiotherapy twice a day, during which he was taken off the ventilator. Those sessions were brutal. I had no idea how brutal.

I stayed in the room the first time they performed it, not expecting at all that it would look like my son was being beaten up. I left the room each time, convinced that I could never put myself through attending another one. And yet, those sessions were vital.

It took a nightmarish week to finally stabilise Evan, but they did it! At some point during that week, when he was touch and go, we were told to prepare ourselves for the worst. I will always be haunted by the words uttered by one of the consultants: “RIGHT NOW, EVAN’S TOES ARE AT THE EDGE OF A CLIFF.” Another week went by during which Evan was steadily weaned off some of the medicines in anticipation of the next stage.

Then came the big day. The day we had been waiting for.

The day we thought we could finally relax and go uphill again. They decided it was time to wake him up! Well, Evan did wake up. We dared to let out a tiny sigh of relief, that quickly turned in a big sigh of worry. We noticed straight away that he wasn’t moving his left side and his eyes were fixed to the right. We voiced our concerns and he was taken straight away to have a computerized tomography scan (CT scan) which revealed he had suffered a significant stroke while he was in a coma. We were beside ourselves. After everything that Evan had been through, now this? The butterfly effect was still going strong…

The hospital was great. They immediately put an extensive, daily, long-term physical therapy plan in place, starting that very day.

There’s more -- that same day, Evan started having seizures and dystonic movements for which he was given more medicine.

He was then taken for Magnetic Resonance Imaging (MRI) and Magnetic Resonance Angiography scans of his head and neck to assess the damage of the stroke, while still intubated, and for which they had to sedate him again. Two days after waking him up from the coma they decided to try and take him off the ventilator and check whether he could breathe by himself. This time, we were holding our own. And the little rascal did manage to breathe by himself! What a joy! A short-lived one … that butterfly again …

First, he suffered terrible post-extubation stridor and had to be put on strong steroids for two days to reduce the inflammation (not uncommon when you are taken off a ventilator). Then, a few days later, as we were waiting to be moved to a ward, I noticed a spot on his head and mentioned it. Yep, you’ve guessed it: chicken pox! So, on top of all his medication, he was given antiviral drugs to try and diminish the chicken pox symptoms as he already had enough on his plate to deal with. Evan, being Evan, was covered in no time from head to toe. There wasn’t a single space left for another spot! Needless to say, they quickly moved us to an isolation ward. He was later moved to High Dependency Unit care for a few days, where due to his stroke he had to be monitored every thirty minutes!

Finally, Evan was moved to a regular ward where he was monitored “only” every four hours.

Two days later, he had another MRI scan as there was a fear of another stroke. He went for a third MRI in December to rule out Moyamoya disease. The results have only just come in and they are negative. Phew!

The medical specialists wanted Evan to stay for another six weeks to make sure he was being monitored properly and that he was being given all of the necessary therapies, but my husband had already taken five weeks off from work and if he didn’t return to work, we would lose our house. My son also had to go back to work full-time. So, we made the decision that I would take over all the various therapies at home following a very strict schedule and programme set up by therapists:

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“THE ANTIBIOTICS ARE TAKING LONGER TO WORK BECAUSE EVAN HAS DOWN SYNDROME.”

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beautiful rooms SHOPPING IDEAS Occupational Therapy Physiotherapy Speech and Language Therapy: Primarily to retrain Evan how to swallow again. The left area of his brain that was damaged by the stroke is the one that controls all the muscles in the mouth and throat. He had to be reintroduced to food again: soft melts, purées, things he wouldn’t choke on. It is also interesting to note that a mainstream four-and-a-half-year-old would have woken up without speech, but as Evan is non-verbal, we’ll never know the real impact of the stroke on that front. Before we could take Evan home, I was given training to manage his nasogastric tube; he needed to maintain a certain amount of fluid to keep his brain hydrated. Despite my best efforts, Evan kept pulling the tube out, and it was agreed that it would be better to remove it and try to monitor his fluid intake, which we continue to this day. He’s never been a great drinker so that’s another daily worry.

To inject him twice a day (for which I had to overcome my phobia of needles!).

We had left the house on April 14 with a four-and-a-halfyear-old, and a month later we brought home a baby. It was scary.

I had no idea how I was going to manage, but I was determined. It seems you just get on with it when there are no other viable options.

I had to treat Evan like the new-born he used to be, teaching him everything from scratch again. Celebrating every milestone a second time, we were torn between joy and bitterness. Slowly, he went from being able to lift his head, to eating, to walking. To think he was able to jump and ride a bike before that infection! The stroke took a heavy toll on Evan’s cognitive abilities too.

He will always have issues with his left arm and leg, and we are considering an operation on that leg to make it easier for him to walk.

A year down the line, we know we’ll have to permanently keep a close eye on Evan as he is likely to develop epilepsy which is very common after a stroke. We’ve been told what to look for and what to do should it occur. The stress of being constantly on the lookout is constant, wondering if that sudden jerk was normal or simply due to his hemiplegia, worrying you might have missed it, hoping it will never happen…

Not that you can tell by looking at him now, but this sixyear-old is pretty much a walking miracle, with a limp, but a walking miracle nevertheless, with an incredible zest for life! Three operations within seven months. On the brink of death a few times.

How does our little hero keep defying the odds? How does he keep soldiering on to this day? Well, this final quote might explain it, said to us by another consultant: “IF EVAN DIDN’T HAVE DOWN SYNDROME, HE WOULDN’T HAVE MADE IT. THERE’S NO QUESTION DOWN SYNDROME SAVED HIS LIFE. I DON’T KNOW WHAT IT IS ABOUT THIS EXTRA CHROMOSOME BUT IT MAKES INDIVIDUALS WHO HAVE IT A LOT MORE RESILIENT.” So yes, the irony of it all: his congenital diagnosis had nearly had him killed, but it is this that saved his life in the end. Go figure!

The thing is, the impact of those four weeks in hospital has left indelible stains on my mind. We were pretty much in a bubble there fighting for Evan’s life, and just when we were about to relax our paranoia, thinking that he was out of trouble, Covid-19 entered the scene with its associates “Shielding” and “Lockdown”, forcing us into another kind of bubble, this time to keep him alive. Somehow, this has triggered PTSD-like episodes for me that pull me back into that first bubble. The butterfly effect has extended its scope to me and to all the members of my family. All because of a lack of intervention, brought upon by a lack of education, brought upon by textbooks, brought upon by etc., etc., … (the butterfly effect in reverse…).

The Byrne Family - Matt, Olly, Stacey, Sam, Owen with Evan

May it never happen to another family…

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A Story About Edwards’ Syndrome (Trisomy 18) Doc, never say never about a child…

U

ntil five years ago, we were just an ordinary family, with a three-year-old son and a baby on the way. The baby became our daughter, Isabel, who is a loving, happy, beautiful little girl, much loved by her family and friends.

What makes us a little less ordinary now is that Isabel has Edwards’ syndrome—she has an extra copy of chromosome 18. The way that medical professionals have responded to this fact has had a major impact on us, in both negative and positive ways. We are lucky; local paediatric doctors treat her as a valued child and focus on her symptoms rather than her syndrome. But we have had some unnecessarily difficult experiences with others, especially in the early days.

Three days after Isabel was born, we were given her diagnosis. This was devastating enough to deal with but made even worse by the fact that it felt as if some of the doctors had stopped viewing her as a child worth helping. A particularly negative paediatric consultant told us categorically that Isabel would die within days, or at best weeks, and then gave us no support at all. One of the hardest things we had to deal with was when he told us quite bluntly that it was “not appropriate” to resuscitate Isabel should she need it; a conversation that still horrifies us.

After the initial gloomy prognosis, every subsequent illness at first made us wonder, “Is this it?”

What made this so much harder for us was that in the first two years of Isabel’s life, we were asked, at every hospital admission, whether she was for “full resuscitation”. Our answer then, as it is now, was always, “And why wouldn’t she be?” Isabel has a fantastic quality of life as an important member of our family.

Being asked the resuscitation question so often made us feel that doctors were questioning Isabel’s right to live, and to receive treatment and that maybe they didn’t feel she was quite as important as other children. We cannot fault the medical treatment that Isabel received, but we minded very much that we were routinely asked this question. Isabel has no ongoing pain, and nor does she have a progressive degenerative condition. So, is it asked because of her disability, and because she doesn’t have a “normal” quality of life?

How do you assess this? In any case, many perfectly able children have a much worse quality of life for some reason or another.

Isabel has a joyful, shining personality, and she is very determined. We started a daily exercise programme last year and have noticed that this has helped hugely with her strength and development. The thing we focus on is that she is making progress, however slow, and we never say never in our house any more.

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soft.org.uk ​​ OFT UK provides information S and support for those affected by trisomy 13, trisomy 18 (Patau’s and Edwards’ syndrome) and related conditions.

Isabel and Harry

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“Statistics can tell you what may happen, but they can never tell you what one individual will do”

We know that Isabel is an exception and that she is defying the statistics. We hope though that she may be an inspiration for others to accept what our current wise paediatrician said: “Statistics can tell you what may happen, but they can never tell you what one individual will do.” For us, where there is life, there really is hope, and we would like more doctors to have the “never say never” view too.

The bottom line: Be aware of your ability to create self-fulfilling prophecies. The most dramatic of these is clearly the question of whether a child with an unknown future should have life-saving surgery, but it is also easy to limit a child’s chances by being pessimistic about what they will or won’t be able to do in the future. Isabel is here enjoying life because we ignored the predictions and advice of many medical professionals.

For parents to be asked whether their child should be resuscitated or not is deeply emotive and a decision that has huge consequences. We strongly believe that if the question does need to be asked, it should be discussed once and then recorded, with parents to agree under what (if any) circumstances they should be asked again. It is definitely not a “tick box” question to be asked routinely at every admission—that in itself trivialises the decision.

In the early days, one doctor appeared to think that we were being too positive, so it seemed like he was trying to drum out all of our hope. But hope is what kept us going, kept us able to put one foot in front of another, helped us hold our family together. There is no such thing as false hope—hope is today’s dream for tomorrow—and whether or not that dream comes true, it can help today to be manageable.

Remember that parents need help too, not just babies and children. It is easy to overlook the physical and emotional needs of the parents when a baby is very ill. It helps us when healthcare workers treat Isabel as though she will recover, rather than assuming that she won’t; when they acknowledge that Isabel is our beautiful, happy, much-loved daughter; when they are noticeably pleased by Isabel’s progress, or how well she is recovering from an illness, and let us know about good news as well as bad.

Using terms such as “dysmorphic features” and “a lethal condition,” as well as talking about Isabel’s “end of life pathway” in front of Isabel and her big brother is simply not respectful of us or our situation. We would urge you to think carefully about the words you choose to describe children to their parents and to be mindful that even quite young siblings may overhear your conversations if they are present, even if they seem not to be listening.

facebook.com/groups/T18Mommies

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What is Diagnostic Overshadowing

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first experienced the phenomena of diagnostic overshadowing when I sat in Accident & Emergency with my younger brother David while he winced in pain. He had an abdominal hernia with intestinal obstruction.

I knew if I was the one lying on that gurney I would already be on a morphine drip for the pain.

“They don’t experience pain the same,” said the junior doctor as he fumbled through the examination, failing to explain to my brother what he was doing at each step, including intimate examinations. A medical student myself, I felt scared for my brother and uneasy about the care he was receiving, but I couldn’t quite say why.

Years later, now a qualified doctor and in the field of psychiatry, I finally understood what happened that day. Diagnostic overshadowing is when medical professionals attribute a symptom or set of symptoms to someone’s previously held diagnosis or characteristic. For example, when someone with autism who is restless, avoiding food and showing some challenging behaviour and the doctor says, “Oh, that’s normal for autism” when in fact they have a toothache.

First described in the 1980s by Professor Steven Reiss in people with mental health issues, it has sadly become clear that diagnostic overshadowing is a widespread problem affecting those with disabilities, the elderly, those with chronic health issues and other underserved groups.

By now you may be thinking of the last clinical encounter you had with your loved one with Down syndrome and you’d be right to. Here at the Downs Syndrome Research Foundation UK, and clinicians like Dr Erica Peirson (a specialist in Down syndrome) frequently hear reports of missed diagnoses, ignored pleas for help, and outright medical neglect within our community. Conditions may be missed, ignored, or under treated, by professionals for many reasons.

The reasons you may have experienced it personally will be unique but could include: a lack of training; myths about Down syndrome passed down as “medical education”; communication difficulties and discomfort in the professional; or, sadly, outright discrimination.

Lack of research into what constitutes a “healthy” person with Down syndrome still seems to be weighing us down as a community. Are separate growth charts still warranted today when we can fully treat all biochemical differences seen in Down syndrome? Or is there a risk we normalise poor growth when we print a new chart just for people with Down syndrome?

In a world where parents and carers must advocate for education rights, I am saddened to tell you that you must continue to be vigilant in doctors’ consulting rooms. Not all doctors (or health professionals) are likely to fall foul of diagnostic overshadowing but it can happen to everyone in healthcare - young or old, “nice” or “arrogant”, professionals.

What can you do?

Listen carefully and ask the professional to talk through their reasoning in the treatment of your loved one:

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Ask yourself: “Are they making assumptions before taking a full history, examining and performing investigations?”

Have they included the phrase: “Normal for Down syndrome?”

This can be an indicator that they have turned off their diagnostic curiosity and defaulted to an assumption that the situation in front of them is just a typical one for someone with Down syndrome. For example: sluggish; constipated; or sleepy, when in fact they could have hypothyroidism.

Ask the professional what their treatment plan would be if your loved one did not have Down syndrome. This question alone can often rouse a lazy or reluctant doctor to think more deeply about the child or adult in front of them.

Don’t be afraid to speak up. Ask for a manager, senior doctor or nurse if you are unhappy with the care they are, or are not, receiving. If you feel unable to do this, ask a friend or patient advocate to join you and help you to speak up for their rights.

We’ve come far but we’re not home yet.

Those who have gone before us fought long and hard for heart surgery to be offered as standard when congenital heart defects are present in babies with Down syndrome. However, having Down syndrome can mean a candidate isn’t eligible for the transplant list should the patient develop a need later in life.

In 2020, prejudice and medical neglect still affect the care that those with Down syndrome receive. Lack of recent studies is often used as a reason to ‘undertreat’ people with Down syndrome, keeping expectations and hopes of good growth and healthy progression hard to grasp.

Through our continued efforts funding medical research to improve the health and outcomes for those with Down syndrome, we at the Foundation are doing what we can to make low expectations a thing of the past. We need your help to do this, though. Together, we can ensure that professionals are educated about Down syndrome, and that families feel empowered to advocate for their loved ones.

all about HEALTH

A Picture Paints a Thousand Words …

From holiday brochures (remember those?) to YouTube hack videos, human beings are visual learners, hungry to see their future holiday destination before they jet off, or to simply watch how to empty the waste tray on the washing machine.

Charlie said, “The positivity in the Looking Up book gave us so much excitement for what our future would hold with Mylo.” Another parent shared, “Receiving the Looking Up book and pack was like being given permission to celebrate, when we were hesitant to know what to do, say, think, or feel next.”

Based on parents’ reactions, a second book in the series was created, Going to School. Again, using only photographs, it tells the tale of a typical school day where children with Down syndrome learn alongside their peers in the classroom, enjoying physical education, lunchtime play and numeracy. Thanks to the fundraising efforts of CDSSG families, Going to School is gifted to every preschool child in Cornwall via Bookstart Treasure packs — over 30,000 have been distributed in the last three years. A Makaton download accompanies the book which holds all of the signs and symbols to support communication about the school day.

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hen you are an expectant parent, you have dreams of what your baby and your family will look like. Will he have his dad’s mass of curly blonde locks? Will she have mom’s sunny smile and deep brown, all-knowing eyes?

Will he love to potter in the kitchen, “helping” to prepare dinner? Will she shine on the football field as her dad did as a youngster?

Receiving a prenatal or antenatal diagnosis of Down syndrome can cloud those dreams, as many new parents have not had the opportunity to engage with children or young people with Down syndrome.

Luckily, the Cornwall Down Syndrome Support Group (CDSSG) charity made it their mission to provide real life, positive imagery about what family life with Down syndrome actually looks like. Their Looking Up book series, co-authored by Angie Emrys-Jones in collaboration with social, medical, and educational experts in the research and study of Down syndrome, offers a glimpse into what life is like at all stages for a family just undertaking the journey.

Angie shares, “Back in 2014, we realised the need to balance the dry, medicalised, often negative information that abounded in leaflets given to new families. Particularly elusive was information on the lived reality of contemporary family life — birthday parties, family holidays, Cubs and Brownies — the everyday stuff of life that, in the raw newness of receiving the news that your child has a lifelong disability, suddenly seems very far away.” So Angie set about changing the narrative by creating the first book in the Looking Up series. Each page tells the story, in pictures, of the first five years of life of a child with Down syndrome, not posed pictures but real snaps of ice creams on the beach, bike rides, muddy walks in the woods, all the everyday things families do in life.“ This book tells parents, “’You’re going to be okay,’” Angie says.

“The earth will keep turning and the sun will rise tomorrow, and you will be a family just like you planned, only with a little extra.”bond between grandparent and grandchild via the medium of family album snaps.

“Don’t tell A Looking Up book is gifted to every me. Show set of new parents of babies born with Down me” syndrome in Cornwall via a new parent gift bag. “The bag contains all of the things you’d traditionally give any new family, and that’s important,” says Angie. “This is a celebratory birth like any other.” Parents have fallen in love with the book the minute they received it. Zoe and

all about EDUCATION

A third book, Tea at Grandma’s, is “a wonderful hug of a book,” according to Angie, showing the depth of the bond between grandparent and grandchild and helping grandparents to support the new family.

In 2020, two additional Looking Up books have been launched. Looking Up 2 is an updated version of the first book, showing Down syndrome families living their best life, from potties, breast feeding, and first steps to preschool graduations. Book five is a collaboration with the National Health Service, Going to Hospital, showing children and young people in pictures what they might encounter during a hospital visit. Funding from the Down Syndrome Research Foundation, Mencap and Royal Cornwall Hospital provides Going to Hospital and its accompanying Makaton download free of charge.

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Ava the Mermaid

​​Maya, Ava, Eleanor, and Oscar

Ava the Mermaid is the third in my series of books, which are all named after my children. I wrote Maya the Unicorn and Oscar the Dragon before Ava was even a twinkle in my eye! The story in each of these books is written to encourage confidence and self-belief in children as they grow up. When I was pregnant with Ava, I knew I also wanted to write a story for her, but I had no idea what the theme of her book would be.

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e received a postnatal diagnosis of Down syndrome for Ava. She was our gorgeous little surprise. At three days old we found out that she had a hole in her heart which would require heart surgery. Her surgery took place at four months old, when her heart failure was becoming harder to manage and she was failing to grow. She was a teeny tiny 4kg at the time of her surgery but being the fighter that she is, Ava was home less than a week later.

I started to think about the story I would write for Ava and with help from my mum, we came up with a mermaid as I wanted to keep with the theme of mythical characters.

I wanted to raise awareness through this book and came up with the idea of encouraging and promoting kindness and inclusion regardless of difference, disability or difficulty.

Although there are a few nods to Down syndrome and my little heart warrior in the book, I wanted to make sure that it was also applicable to all. If you look closely you will see Ava’s heart warrior scar. Ava’s and Betsy’s tails have three colours instead of two, like the other mermaids. And their fins are slightly shorter, making it harder for them to swim as fast. The story highlights that although we all have differences and we all struggle with different things, it’s important to realise that we can help each other out and ultimately, there is so much we can learn from each other.

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As with the first two books, there are activities at the back in line with the theme. There’s a space to write or draw about who helps when you struggle, who you help, as well as the things you are good at. It’s all too easy to forget what we can do, and sometimes it’s nice to have a reminder. I hope the book encourages children to be kind and show support to one another, realise that nobody is perfect, and that we can find ways to include everyone in games that we play and the lives that we live.

In order to make the book more accessible, I’m currently looking at ways to create an audio version with the pictures and I will be sharing readings of it being signed in Makaton on my social media pages.

So far the book has had a great reception with a number of charities and groups using it for various projects. One mum is using it to sign a story with her local support group for World Down Syndrome Day. Positive About Down Syndrome has included them in their packs to schools, also for World Down Syndrome Day. If you would like to order a copy they’re available at http://www.eleanorbaggaley.com or get in touch with me via social media.

all about EDUCATION

Chloe Signz

Grace, Chloe & Danielle Hello, my name is Chloe and I’m twenty-three years old. I started a page on Facebook and Instagram called Chloe Signz just over a year ago. I share daily Makaton signs and some fun things about what I’ve been doing. And TikToks … I love doing TikToks with my sisters. They’re so funny!

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ello, my name is Chloe and I’m twenty-three years old. I started a page on Facebook and Instagram called Chloe Signz just over a year ago. I share daily Makaton signs and some fun things about what I’ve been doing. And TikToks … I love doing TikToks with my sisters. They’re so funny!

I started using Makaton signing when I was little. My first sign was “more!’’ Signing helped me let my family know what I wanted, and I picked it up really quickly. I loved watching Dave Benson Phillips’s videos and was super excited when I got to meet him at a Singing Hands show! My mum encouraged me to sign as sometimes people couldn’t understand what I was trying to say, and it became frustrating having to repeat myself or have my mum tell them what I was saying!

Signing helps me to slow down my speech, so that more people can understand me, which is great!

I hope that by showing people signing that more people will use it and understand it, so that people like me who do sign will be understood in our communities. I also like to show people that I’m the same as them and like to laugh, have fun, party and go to concerts the same as everyone else. I have received lots of positive feedback from my followers: “I love Chloe Signz! Her videos are so much fun and really helpful for me practising my Makaton and learning new signs.

Chloe is so dynamic and charismatic; you can really get a sense of her personality through her account.”

“What I really like about Chloe Signz is that I’m learning signing in an easy and fun way. Chloe makes each word topical, so you get a chance to use it that day - particularly “mask” during this pandemic was very relevant! I also share Chloe’s posts with my two-year-old granddaughter as I think it is

all about EDUCATION

never too early to be involved. “ I completed foundation Makaton training with a lovely tutor, Fouad. It was really good fun and I’m hoping to do my Level 3 with him soon. I run singing and signing workshops for the students at Dramatize, which is lots of fun, and I’d love to teach more workshops. In the future I’d also love to perform on stage with Lewis Capaldi, be in a show with Charlie Stemp, and live in my own house. My mum says I can do anything I want!

Recently, I was diagnosed with Graves’ disease. This has made me really tired, made me lose my hair (which is slowly starting to come back), gain weight, and made me feel unwell. Chloe Signz has helped me get my confidence back.

My family are really important to me; They are really proud of me and they help me with my videos. My sister Danielle says: “Ever since she could walk and talk, my big sister Chloe has been the out-going, loud-mouthed, boisterous member of the family where her bubbly personality, unique sparkle and dry sense of humour has the ability to make everyone around her feel joy. She is just Chloe to me - my big sister - not an adult with Down syndrome. Chloe has done so many amazing things in her twenty-three years; from indoor sky diving to volunteering at a local café. One of Chloe’s biggest achievements is completing her Makaton training course. I am so proud of her and I love her so much for all she has done to change my life. Chloe is the single most influential person in my life from whom I have learnt patience, compassion, and complete acceptance. My life as a sibling of a person with Down syndrome has not been a life overshadowed, or a life filled with worry, or a life restricted. It has been a life enriched, a life open with possibilities, a life filled with a little more happiness.”

Diff-Ability Makaton Choir

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efore Covid-19 changed our lives, Diff-Ability had been planning to set up a Makaton choir at a venue near Penrith, Cumbria.

Of course, the pandemic meant we couldn’t do that, but getting together virtually had become a way for people to communicate through these difficult times. We decided to trial Zoom for our sessions.

With the help of Julie Aicheson from Signs for Life, Diff-Ability started the Makaton choir. It was lovely to learn new songs together. Not only this, but we were also learning the Makaton signs so that we can communicate better with our children and others who use Makaton.

We soon realised the Makaton choir meant more to people than we could have imagined! Claire-May, who has Mosaic Down syndrome, said: “Joining the Makaton choir has helped me to learn more about Makaton. I’m a self-advocate for the Down syndrome community and I wanted to learn it some time ago. I tried to join a course, but it didn’t happen. Fate led me to the choir so I can learn something to communicate with my Down syndrome family. I’m enjoying the choir as sometimes I get to meet someone new.’’ Claire has not only learned some new signs but also taught us some of the songs she has learned.

Grace, who has Trisomy 21, has also taught us some of the songs she already knew. One of which she had performed at the Special Olympics. It has been brilliant for the parents of younger children who are learning Makaton to be taught by our children’s older peers.

Rachel said: “I am thoroughly enjoying learning how to sign Makaton to songs.

I find it easier to learn new signs when they are alongside music. It’s been great to meet the other members of the choir and I’m looking forward to each week’s practice.’’

The Makaton choir is free to join and just for fun! You can find out more on the Diff-Ability Facebook page: https://www. facebook.com/DiffAbilityCIC makingchromosomescount.co.uk

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beautiful rooms SHOPPING IDEAS

4 Sisters With Down Syndrome Layla, Carlyn, Rose and Lucy …

These are the names of Lorraine and Derek Cridge’s four daughters.

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he couple adopted all four young women, each at the age of five or six months old. The Cridges wanted a typical family life, with parties and picnics and days at the beach. They wanted to attend sports days and Christmas concerts. They wanted a family life full of fun.

Just one other detail. All four of their daughters happen to have Down syndrome.

Lorraine always knew she wanted to adopt a child. “I knew from quite a young age that I would adopt children,” she explained. “I was one of those very empathetic kids who worried endlessly about children living in poverty or hunger.” After she and Derek had been married for ten years, they took the plunge and at the ages of thirty-three and thirty-five, decided to begin the adoption process. “We chose to adopt a child with Down syndrome, much to the shock of social services counsellors. Derek and I thought, Why not leave those ‘perfect’ babies for people who felt they couldn’t cope with anything viewed as ‘less’?

We knew we wanted loads of fun and birthday parties and holidays and days out and, as we all know, nobody knows how to have fun better than a child with Down syndrome!” The couple adopted Layla who Lorraine describes as “the perfect baby,” always smiling and sleeping like a dream.

Lorraine and Derek couldn’t wait to adopt another baby. Their social worker had other ideas they should adopt two more babies – and along came twins Carlyn and Rose. This time there were some medical challenges because the twins had been born prematurely at twenty-nine weeks. But with the loving care of their parents and big sister Layla, the little ladies grew stronger. Once Carlyn and Rose reached their second birthdays, Lorraine and Derek thought: “Let’s do it again!” and completed their family with Lucy.

The Cridges now had four children, all under five years old, and all with Down syndrome. It’s safe to say that some family members were concerned and thought Lorraine and Derek had taken on way too much, but as Lorraine explains: “It was all Derek and I wanted, and we were very happy.”

Life carried on for a couple of years, and then tragedy struck.

Derek suffered a catastrophic brain injury. After many weeks in an intensive care unit and rehabilitation, Derek came home. Lorraine now found herself with five people to look after. But as a family, they got through that tough time.

Derek was unable Life is good, just as to return to work and could no longer drive. He also Lorraine imagined all needed Lorraine’s support as he suffered from those years ago. confusion and memory loss, which continues to this day. So Lorraine, who had worked as a secondary school teacher before welcoming the children, returned to that profession, this time teaching in a special educational needs setting. Lorraine secured a position at the same school her daughters attended and was there to watch every Christmas performance and to cheer them on during each sports day. This had been part of the family dream.

When Layla was eight years old, the family encountered another challenge. Layla was diagnosed with type 1 diabetes. Lorraine has always felt that this diagnosis was “harder to deal with than a learning disability”. But, as had become their way, the family undertook Lucy the necessary diet and medication plans in order to take Layla’s diabetes in their Layla stride.

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Rose and Carlyn

living the LIFE

Lucy, Layla, Rose and Carlyn

All four girls have always remained very active and engaged in activities such as trampolining, gymnastics and drama in addition to their schooling. All four girls went on to further education in college and stayed until they were nineteen.

These days Layla (33), Carlyn (31), Rose (31) and Lucy (29) still live together in the family home which Lorraine and Derek sold to a learning disability housing association. They receive 24-hour support from a small team of Adult Services support workers. While Layla, Carlyn and Rose are quite independent within their home and play a full part in the domestic running, Lucy has significant learning difficulties and needs a lot of support. At the weekends, Lorraine, now retired, and Derek take over and try and take them all away on mini-breaks as often as they can.

Like most other families, the Cridges are facing the challenges imposed

by Covid restrictions. “Although I was worried that the girls would become depressed at their active world shrinking away, they’ve coped quite well with lots of Zoom and Skype sessions and trips to the park,” says Lorraine. “The absolute worst has been no holidays to Butlins for the

living the LIFE

first year since 1992!” The family hopes to make up for the lost holidays next year.

Life is good for the Cridge family, just as Lorraine imagined all those years ago.

“Let’s stop “tolerating” or “accepting” difference, as if we’re so much better for not being different in the first place. Instead, let’s celebrate difference, because in this world it takes a lot of guts to be different.”

Kate Bornstein

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Kurt and Betsy

Surviving and Thriving Together A First Year Story From a Dad

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he day after being made redundant from a job I loved, we headed to our final, bonus, ante-natal scan. I remember being upset, but not too worried about losing my job. The pay-out would help us through a few months, and I knew that seeing our little girl on the screen again would cheer me up. It did. Then the sonographer left to get a doctor.

There were complications. That scan resulted in an emergency C-section, followed by surgery for our little one. Mam wouldn’t be going home for a while. I wouldn’t go back to my job.

Baby Betsy survived the birth. I will never forget when the surgeon held her up for the briefest of moments. Our little girl was here, the smallest baby I had ever seen. I was overwhelmed, shocked, ecstatic, and deeply worried, all at once.

Two glorious seconds before they took her to start lifesaving procedures.

She survived that day. Intensive care. Ventilator. Wires. Tubes and beeps. High risk surgery followed. I wheeled Mam, still recovering, alongside Betsy’s incubator towards theatre. I felt helpless as my heart pounded with dread. Putting my faith in surgeons, but worried Betsy was too delicate to undergo an operation. We gave her a kiss, as the nurse absent-mindedly referred to a kiss “goodbye”. That word swam around my head as I wandered aimlessly through the streets of Newcastle, waiting.

Betsy came through, thanks to a surgeon who will always be my hero. The nurse who told us, a stranger, delivered the greatest news of my life. I felt myself go limp and start slipping off the chair with sheer relief.

The next month was touch-and-go as Betsy made it through each day’s challenges. I’d leave the hospital and, without a car, ride the ten-mile journey home by motorbike, sobbing into my helmet. The thought that I couldn’t do anything to help my child wrenched my soul. Then we discovered Betsy had an extra chromosome.

After months of recovery and therapy Betsy finally came home. Redundancy allowed me time with my little girl 24-7 for her first five months. A new job meant leaving my two loves at home, but life went on and we were all healthy. Two months later, coming home, accelerating up a country road at dusk, a deer’s antlers crashed into my visor. My bike went from under me, and I tumbled along the wrong side of the road for what seemed like a mile.

We had a new, different type of anguish. It was Daddy’s turn in hospital.

While thankful I’d survived, I now couldn’t work. But Mam could. With one shoulder in a sling, I adapted to look after my daughter at home. I would wince moving Betsy from cot to changing mat, from bouncy chair to pram, doing everything without the use of my right arm, even strapping Betsy into a car seat to take her upstairs.

As our paired confidence grew we ventured out around our vil-

Betsy came through, thanks to a surgeon who will always be my hero. .

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living the LIFE

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The value of a loving father has no price.

Then and Now: Frankie and her dad, Scott

lage. We got on buses; went to the seaside, to parks, to the aquarium. We went out for lunch together, we had picnics - my feeding her, h Betsy one-armed, in her adjustable Dad Kurt wit pram-to-buggy. Changing Betsy’s nappy with two hands, but only my left arm. The challenges were tough, but Betsy helped me.

We tackled challenges together. Betsy accompanied me to physio appointments, then we’d have ice cream since Daddy was so brave! I learned how to cope and how to “Dad” in these absurd circumstances. Betsy guided me. She gave me a will and a strength I didn’t know I had. Your kid will do that for you if you let them.

I’m thankful that stag leaped out of the trees when he did(rest assured I saw him walk away as I pulled myself off the road, and the police assured me they checked and didn’t find him in a similar state to me). And while I wouldn’t want to lose a beloved job again, I wouldn’t change anything.

I’m thankful those circumstances allowed me such a special bond with my beautiful daughter, Betsy, who just happens to have an extra chromosome.

living the LIFE

Then and Now: Zephy and his dad, Matthew

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We Found Love Through Down Syndrome My name is Nicola, and my partner is called Thomas. Our love story is unique. We found love thanks to Down syndrome.

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y name is Nicola, and my partner is called Thomas. Our love story is unique. We found love thanks to Down syndrome.

In 2007, I became a single parent to my beautiful and very lively three-year-old daughter, Jessica, when things didn’t work out between her Dad and me. We ended our ten-year relationship somewhat acrimoniously, and although Jessica still enjoys seeing her Dad at weekends, parenting her on my own has made me and Jess inseparable.

We did everything together. Wherever Jessica was, I was not far behind. I was lucky enough to be able to give up work when she was born, so my life was completely devoted to her from day one. I didn’t know where Jessica ended, and I began. When we started our journey on our own, we clung to each other and lived in our own little bubble.

I was not expecting to meet someone who was in the same situation as me.

I had heard many unhelpful comments such as: Nicola, Charlotte, Dad Thomas, “Who will take you on with a disabled child?” and “Men and Jessica don’t love other men’s children,” but I didn’t care.

If it ended up being just me and Jessica for the rest evening in 2009, and we of my life, I would have hit it off straight away. everything I needed. That We nearly missed our was true until I received an meal booking because email from a man named we were talking so much!

Thomas.

We instinctively knew In 2009 when the light and dark side of Jessica was five, I decided having a child with Down to step out of my comfort syndrome and we were zone and challenge myself both passionate about to trek The Great Wall actively changing negative of China. Jessica had restereotypes of people cently had emergency heart with Down syndrome and surgery and her bravery supporting their families inspired me to be brave too. like she was. I was so a The weeks turned ol ic N d an , a, Patrick proud of her, and I wanted into months and it was tte, Jessic lo ar h C , Thomas her to be proud of me too. time for the girls to meet I wanted to raise money each other. Despite for the Down Syndrome our anxiety, Jessica and Association and for our local support group, Down Syndrome Liverpool. Charlotte got on like a house on fire! I heard Jessica whispering, not very And that’s where Thomas and I connected. quietly, to Charlotte: “My Mum likes your Dad.” And that was the deal Thomas was a committee member of Down Syndrome Liverpool sealed. and was responsible for publishing stories in their newsletter and on their Thomas and I are now celebrating our tenth year together and website. He emailed to ask if he could feature mine and Jessica’s story although it is far from easy at times, our relationship has withstood more and hopefully raise the profile of the fundraising mission. After a few extreme highs and lows than most couples will ever go through. The emails backwards and forwards, I discovered that he was also a single unspoken understanding of being a parent of a child with a disability is parent with a five-year-old daughter, Charlotte, and both Jessica and the solid foundation upon which we have built our life. We now have Charlotte were born with the same heart defect which needed open-heart a child of our own, Patrick. Patrick is three years old and is very lucky surgery, at around the same age. to have two older sisters to care for him and play with him, alongside Curiosity got the better of me and I did some delving online; Thomas’s two older children from his previous marriage, Thomas, 25, the more I found out about Thomas, the more I was intrigued. Over the and Christopher, 20. months, the emails became less about the China trek and more about From a personal relationship point of view, meeting Thomas has each other, talking to each other nearly every day, until he asked me out transformed my very lonely world into one with vibrant colour, noise, on a date. I thought he’d never ask! laughter and, most importantly, love.”

We met in a pub in Liverpool on a cold and windy October

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downrightjoy.com

By Rights

Hazel, 9yrs

By rights, my child should be talking by now. She’s eight years old you see.

By rights, she should be running around, climbing, jumping, falling, and scraping her knee.

By rights, these are skills that are just delayed.

She’ll get there in her own time, don’t fret.

Her extra chromosome is championed by those of us in the know.

Though I think even we get it wrong by the examples we hold up for inspiration: actors, dancers, TV stars, athletes, some are even politicians.

azel ghter H u a d & Alison

Look how much these people with their extra chromosome are contributing!

As if they need a reason to be here.

Nothing to fear they tell me; she’ll make her own way in this world, like them.

By rights.

By rights, my child shouldn’t even be here.

Such is the overwhelming view of the world to people like her.

By rights, I could have deleted her life. I should have done so, according to some and by rights for which others have fought.

My choice? My right not to do that?

Of course! But you’re on your own.

Stop. Let’s go back to the beginning, where it all seems to go so wrong.

So very wrong and not at all about rights.

My child’s very existence is a cry to be loved.

She is not to be measured on a scale.

Scales of achievement that judge her, proclaiming her worth in how much she can bring to the table.

By rights, she may never measure up to societal scrutiny, or even that of her own community. Who knows when or if she will talk or run?

Truthfully, she is not here by rights – for society says she has none.

She is here by love.

It is love she is attracted to.

Not achieving or being the best.

She has no desire to acquire more knowledge or power or fame, or the rest.

She has a desire, a need to be loved. Let’s face it, don’t we all?

She is not here by rights; she is here as a gift.

A priceless gift of discovering that to love is not always easy but is of greater value than anything else.

Tell me … what gift was ever a right?

living the LIFE

Hazel

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Don’t Screen Us Out Government announces roll-out of new Down syndrome test that will likely see rise in abortions. which would support those with Down syndrome and their families.

The group adds that cfDNA may only worsen the culture of informally eugenic anti-disabled discrimination that exists in the Fetal Anomaly Screening Programme (FASP).

Lynn Murray, spokesperson for the Don’t Screen Us Out campaign said: “As a mother of a daughter who has Down syndrome, I see every day the unique value she brings to our family and the positive impact she has on others around her.

Figures released earlier this year show that the fears of the Down syndrome community, namely that rolling out these tests would lead to a large drop in the number of babies with Down syndrome, were not unfounded.

While the screening itself is being heralded as a move to reduce the number of miscarriages associated with invasive amniocentesis, figures published in The Sunday Times last December revealed that the number of babies born with Down syndrome he number of babies with Down syndrome that are aborted fell by 30% in NHS hospitals that have is likely to increase following a decision announced by the already introduced the new test. When this test is rolled out across the Government. country, we can expect to see this situation replicated elsewhere. Such People with Down syndrome, their families and outcomes are likely to have a profoundly negative impact on the Down campaign groups are very disappointed that a new prenatal test that syndrome community. is projected to lead to a profound increase in We are calling on the Government to halt the number of children with Down syndrome the further roll out of the tests in the NHS immeAs a mother of a screened out by termination, is going to be rolleddiately, and to undertake an urgent inquiry into the out by the Department of Health and Social Care, daughter who has impact that these tests are having on birth numbers without responding to the very real concerns of with Down syndrome.

Down syndrome, I see of babiesThere those in the Down syndrome community. also needs to be greater support The UK Government has announced for parents who are expecting a child with Down every day the unique plans to procure and roll out the Non-Invasive syndrome.

Prenatal Testing (NIPT) technique called ‘’cell-free value she brings to our Despite Nuffield Council of Bioethics’ 2017 DNA’’ (cfDNA) to all health boards in England. call for the College of Obstetricians and Gynfamily and the positive aecologists Royal Recently, an investigation by The Sunday to take immediate action and introduce Times found that the number of babies born with professional guidance to cover the continuation of impact she has on Down syndrome has fallen by 30% in the small pregnancy after a diagnosis of foetal anomaly, there number of NHS hospitals that have introduced others around her. are still no guidelines to support women who choose the new form of screening. to continue their pregnancies after finding that their This situation is set to accelerate as the Government intends to baby has Down syndrome. roll out the test across England.

There is mounting evidence that unconscious bias exists in the The National Institute for Health and Research RAPID evaluation study FASP programme. We need the right reforms to turn things around and forecasts that the proposed implementation will result in more babies ensure that the tenets of diversity and inclusivity extend to screening with Down syndrome being identified each year, and based on the curconversations in the NHS.” rent 90% of parents with a diagnosis that terminate a pregnancy, this is projected to result in more terminations where babies have the condition.

In its 2017 report on NIPT, the Nuffield Council of Bioethics warned that the UK National Screening Committee should take better consideration of the consequences, some perhaps unintended, of prenatal screening programmes where termination of pregnancy is an option.

The Don’t Screen Us Out campaign calls on the Government to halt the implementation of cfDNA screening, and to introduce reforms

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in the NEWS

Useful Links ​​Down’s Syndrome Association

downs-syndrome.org.uk

Singing Hands

The Kindship app is a free social network for parents raising children with disabilities. Meet, chat, and learn from like-minded parents on similar journeys. Download the kindship app today

singinghands.co.uk

kindship.com

Oliver Hellowell Photography

Zebedee

​​Down Syndrome International

ds-int.org

Kindship

Making learning Makaton multi-sensory & fun for everyone. We believe inclusion and communication is everything.

​​Down’s Syndrome Research Foundation

dsrf-uk.org ​​Mencap

​​mencap.org.uk ​​Mosaic Down Syndrome

imdsa.org

​​Dont Screen Us Out

dontscreenusout.org

Wildlife and landscape photographer, with Down Syndrome, whose amazing second book “Oliver’s Britain” has just been published by ACC Art Books, following ‘Oliver’s Birds’ published 2 years ago.

Specialist Talent Agency. Supplying disabled, visibly different and diverse models and actors globally. Online applications reopen in the UK in January.

oliverhellowell.com

zebedeemanagement.co.uk

Positive About Down Syndrome

positiveaboutdownsyndrome.co.uk ​​Stroke Association

stroke.org.uk

​​Soft UK - Trisomy 13 & 18

soft.org.uk

​​SIBS - For brothers and sisters

sibs.org.uk

Mallory Paige Designs

Amelia May Personalised Gifts

Beautiful jewelry designed by someone with a MAGICAL chromosome and handcrafted by someone who loves them. Each piece is handstamped with the initials of the designer who benefits via commission from your purchase.

I make personalised gifts, clothing (including Down Syndrome awareness tops) and I also do a full wedding range.

mallorypaigedesigns.com

Facebook: @ameliamaychangingattitudes

​​National Autistic Society

​​autism.org.uk

Advertise with us

​​Down’s Heart Group

dhg.org.uk

​​Learning Disability England

learningdisabilityengland.org.uk Wouldn’t Change a Thing

The Lejeune Clinic

Providing Speech & Language and Occupational Therapy support for babies and children with Down syndrome.

wouldntchangeathing.org

Please contact us at MCCNews@gmail.com for more information

lejeuneclinic.com

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To showcase to the world the fascinating kaleidoscope that is Down syndrome and its community

Maryanne and Tommy Pilling

Aidan Musa

Douglas Mclain Lucas Bellamy

Kathleen Humberstone

Evan Byrne

Maximus Bowman Mallory Snellen Zara Hamill

Claire-May Minett

2021 Maisie Colhoun

Darcy Fisher

Annette and Charlotte Prescott

Amelia Budhia

Evan Williams

Isobel Mayes