Multiple Matters Summer 2020

Summer Edition | June 2020

No matter what Our urgent appeal to support new mums through Covid-19 crisis

Doing well

Triplet dad, eight years on

Through the cracks

Shedding light on multiples with autism

Cancelled

The exams that never were

twinstrust.org

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Allows you to combine seat units, carrycot and the car seat in any way depending on age

Combine two full size carrycots at the same time

Simple fold to the size of a single

Seat units can face each other for more closeness and interaction

Easy to handle and negotiate even in the tightest of spaces like shops and lifts.

German designed, high quality functional and stylish.

STYLISH. LUXURIOUS. EXCLUSIVE.

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Multiple Matters • Summer 2020

w w w. abc-de s ign. uk / dia m ond

Welcome letter from the chief executive

A

s a sci-fi fan, I never expected to live through something that could have featured in a film. And like many others, the enormity is sometimes overwhelming. But as my mum always said, “you can only ever do your best”.

With those sentiments in mind, everyone here has stepped up.

Working from home, the team has produced blogs and webinars with top tips and strategies for coping in isolation. A new community forum has launched, with virtual twins and triplet groups and daily video clips posted on how to keep your children entertained. These were shared with 60,000 families for free.

With most maternity and postnatal and neonatal units still open, we have been answering concerns from expectant parents and have set up virtual classes to help them prepare for life with multiples, including breastfeeding. Q&As on Covid-19 and a video from Professor Asma Khalil followed, and we shared this potentially lifesaving information with our expectant parents.

We put out a call for volunteers and floods of you kindly stepped up to make sure no expectant or new mum would be left on their own, with calls, texts, emails or video calls available to postnatal or neonatal units or when new mums get home. We also asked all our supporters to help raise awareness of the support on offer, and 10,000s of you helped.

Thanks to your efforts, your charity helped the NHS and thousands of fellow families in a time of crisis. And the need continues. Alas, our fundraising has been hit hard and we are fighting to keep our services going, so please do make a donation if you can via the website at twinstrust.org.

In this issue...

Regulars 4 16 24 28 31

6 8 10 11 12 14

20 22

ESSENTIAL CONTACTS: Twins Trust office: Manor House, Manor Park, Church Hill, Aldershot, Hampshire, GU12 4JU T: 01252 332344 E: enquiries@twinstrust.org W: www.twinstrust.org Office hours: Monday to Friday 9:30am to 4pm Twins Trust freephone helpline: 0800 1380509 (10am–1pm and 7pm to 10pm, Monday to Friday) Family support team: support-team@twinstrust.org Twinline and support groups: louisebowman@twinstrust.org Courses: amygallagher@twinstrust.org Advertising and fundraising: luciewigley@twinstrust.org Membership enquiries: membership@twinstrust.org Twins Trust in Northern Ireland: Kelly McDonald T: 07525 117010 E: kellymcdonald@twinstrust.org Twins Trust in Scotland: Helen Peck T: 01786 465744 E: helenpeck@twinstrust.org Magazine editorial: multiplematters@hotmail.co.uk, alysonchorley@twinstrust.org MULTIPLE MATTERS – ISSN 2049-5765 Charity number 1076478, Scottish Charity Number SC041055, company number 3 688825.

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URGENT APPEAL

Maternity support in Covid-19 crisis

ASK TWINLINE

Anxiety, phones and sleep regression

PHOTO GALLERY

Lockdown and beyond

NOTICEBOARD

Ads, discounters and more

Features

18 Keith Reed @CampaignsKeith keithreed@twinstrust.org

NEWS AND CAMPAIGNS

Adapting services for challenging times

26 27

THIS TOO SHALL PASS

Coping with extreme morning sickness

NOT NICE

Hospitals ignoring maternity guidance

GOT THE T-SHIRT

Our breastfeeding peer support team

CHILD’S PLAY

New play booklet is full of great ideas

YES SHE CAN!

On solo-parenting twins

NEVER GIVE UP

On travel, babies and dreams

NO RUSH

Early babies start school late

THROUGH THE CRACKS

Mum, multiples and autism

‘WE’RE DOING WELL’

Bereaved triplet dad, eight years on

CANCELLED

The GCSEs & A levels that never were

DON’T CALL

On phone use and teenagers

This issue’s cover stars are Paul Mason and his triplets Sarah, Mattias and Lukas.

You can read more about their story on page 20.

Twins Trust’s individuality policy encourages the development of multiples’ individual identities, for example by dressing them differently. Whenever possible we use photographs that promote this policy.

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NEWS:

Campaigns

Latest ROUND-UP

‘BABY SURGEONS’ AT WORK Channel 4 series follows complex pregnancies

Twins Trust is working hard to provide extra help for our families in the face of challenges brought by Covid-19

Now more than ever Twins Trust has stepped up to help, says CEO Keith Reed

W

ithin days of the lockdown in March, we were finding ways at Twins Trust to adapt our services to support multiple birth families in challenging times.

With concerns among expectant parents running high, we asked Professor Asma Khalil, a specialist multiple birth obstetrician at St Georges University Hospital, London, to respond to your questions online, which you can access via our Covid-19 support page at twinstrust.org.

We have adapted our Family Crisis Support service (formerly “Helping Hands”) to provide remote support for mums who are having to look after their babies on postnatal or neonatal wards

Our adapted service provides remote support for mums on the ward and after leaving hospital without the support of their partner, due to current restrictions. It’s also available after families return home.

Some women are finding they are having fewer scans because of staff illness. We are sending out information to help equip expectant mums so they can look after themselves and their babies.

We didn’t want anyone to miss out on our antenatal and parenting courses, so we’ve adapted them and they are now available online, along with our webinar on “Parenting twins, triplets or more in isolation”.

Twins Trust, like other charities, is facing tough times during this crisis and experiencing falling income. Your continued support through membership, any virtual fundraising, and your donations are much appreciated and will make a huge difference.

For more on our Covid-19 response and appeal, see page 16

A new two-part series following women experiencing complex pregnancies – including twins and triplets – through to birth and beyond at St George’s Hospital, London will be broadcast on Channel 4 later this year.

“Baby Surgeons” – the working title – will highlight the work of fetal medicine, neonatal and maternity units alongside related services such as paediatric surgery at St George’s.

The series aims to show the highs and lows of parenthood through more complex pregnancies, and the decision-making that goes with them, by both the families and St George’s clinical teams.

As one of the UK’s leading fetal medicine units, the series will showcase pioneering baby surgery performed by specialist teams to save and improve the lives of babies both inside and outside the womb.

Two of the clinicians featured are Professor Asma Khalil, with whom we work closely at Twins Trust, and Professor Basky Thilaganathan, clinical director at the Fetal Medicine Unit at St George’s.

TWINS TRUST RAFFLE There’s just a few weeks left to buy raffle tickets. We’re offering great prizes, including holidays (stay-by dates are extended due to Covid-19), an Indesit Washer Dryer and a Dyson V8 Animal cordless vacuum.

Tickets cost just £1 and can be bought online at twinstrust.org/raffle.

Thank you!

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Multiple Matters • Summer 2020

NEWS:

Campaigns

Thank you!

Celebrating those who donate their time and experience

O

ur annual volunteer day in March offered the perfect opportunity to personally thank those who so generously donate their time to help others.

More than 50 volunteers joined us, with a number of presentations. Nikki Roberts, our head of communications, spoke about why we changed the charity’s name and the positive impact it is having in terms of enabling us to reach more families.

Sharon, our bereavement group co-ordinator, and Tracey, a bereavement befriender, shared their stories of loss, which moved the room to tears and was a poignant reminder of the vital work the team does.

Claire Burgess, a Twins Trust honorary consultant, spoke about what can cause children to become anxious and how parents and caregivers can support them.

And our president, Judi Linney, had special thanks for volunteers who had completed 5, 10 or 15 years of volunteering for the charity.

New community forum brings members together

John Garden, bereavement befriender, with Twins Trust president Judi Linney

VOLUNTEERS’ ROLL OF HONOUR Preparing for Parenthood: Rosy Lynch, 5 years, Catherine Carter, 5 years, Sarah Howard-Jones, 10 years. Breastfeeding peer support: Ali Cutler, 5 years, Alison Lohmann, 5 years, Nicola Smith, 5 years, Wendy Rees, 5 years. Twinline: Sonia Hopkin, 5 years, Zoe Sands, 10 years, Clare House, 15 years. Bereavement

Befrienders: John Garden, 5 years, Richard Boyd, 5 years, Sarah Miles, 5 years, Tracey Kirby, 5 years, Claudia Belardo, 5 years, Suzie Schofield, 5 years. Peer Support long service awards: Sue Plenty for all her work with our triplet families, and Lucene Hughes for all her work with the one-parent families group.

SUMMER G I V E AWAY S. . .

Celebrate everything multiples with our summer books giveaway: “The Book of Twins”, containing insights from over 120 twins, friends and family and produced by the K&E Twinning Store – “a community of twins that follow our blog, stay posted on our social media and rock our twin clothing and accessories”. To win, email your name, address and membership number to giveaways@twinstrust.org with “Book of Twins” in the subject line by 30 June. Winners are the first out of the hat after the deadline.

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You asked, we delivered Twins Trust has created a new community forum for the website, providing all our families with a place they can learn from each other, ask questions and share experiences.

It’s a great way to keep talking to people and stay connected. The Twins Trust forums are also monitored by a team of staff and volunteers, who can signpost members to resources if needed.

Louise Bowman, Twins Trust’s family support senior coordinator, said: “We’ve launched with four topics – parenting, pregnancy, Covid-19 and introductions. I will be on there along with our family support officer Carla, and we can help you navigate the forums and answer any questions.

“If you haven’t looked yet, the forum is simple to use. You have to be registered with Twins Trust, so we need your name and email address, and then click on forums to get chatting.

“You can have a look at the forum feeds without being registered, but you won’t be able to join in with the conversation.

“We’re so pleased that with our new website we’ve been able to bring you this valuable resource and hope as many as possible will log on and get chatting.”

We want our forum to be a real community where people can home in on specific topics

TEEN-TAMING FOR BEGINNERS Parents of teenagers and tweens should keep their eyes peeled later in the year for the arrival of a brand new webinar, aimed at helping to support parents with children from 10 years onwards and into the teenage years.

This new resource will focus on the youngsters’ brain development, as well as the challenges of being a parent to two or more teenagers.

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P R E G N A N C Y:

Sickness

This too

shall pass‌

Getting through extreme morning sickness takes determination and, sometimes, medical help

By Alyson Chorley

6

Multiple Matters • Summer 2020

P R E G N A N C Y:

Sickness

T

he early days of a surprise twin pregnancy for Charlotte Romp were not ones she would like to repeat.

The primary school assistant headteacher from Suffolk suffered with hyperemesis gravidarum (HG) from when she was four weeks pregnant up until her 32nd week.

If the condition sounds familiar, Kate Middleton, the Duchess of Cambridge, had it so severely during her first pregnancy with Prince George that she was hospitalised for dehydration. She then had it again when expecting Charlotte and Louis.

According to the NHS website, unlike regular pregnancy sickness, HG may not get better by 16 to 20 weeks. It may not clear up completely until the babies are born, although some symptoms may improve at around 20 weeks.

This was sadly the case for Charlotte, who was on medication throughout her pregnancy.

“We felt very lucky to get pregnant soon after we got married, but at four weeks, just as I had done the test, I began suffering with sickness,” said Charlotte.

“It was relentless, then just a week later I became very ill and collapsed in A&E.”

The medication helped, but I lost a lot of weight and had to find foods that I could tolerate Charlotte was again admitted to hospital at eight weeks, and it was during this time that an early scan revealed she was expecting twins.

“Even though my husband is a twin, this still came as a bit of a surprise.

“I was put on medication for the HG. Although the severity of the symptoms eased, the nausea did not go away. I had to have time off from work and eating anything was extremely difficult. ”

At the 12-week scan, Charlotte was told there were two placentas. Two months later, at the 20week scan, however, she was told there was only one placenta and that the twins were identical (monochorionic diamniotic MCDA) and classed as high risk.

Charlotte was then seen every two weeks at the West Suffolk Hospital and the Rosie Hospital in Cambridge, and gave birth to Oscar (5lbs 5oz) and Harry (5lbs 15oz) by C-section in March 2018.

Her HG had only completely stopped a few weeks before the birth. She and her husband, James, moved into their new home only the day before her planned C-section.

“We were elated when the boys arrived, even though Harry was taken to neonatal care due to a lung infection and both babies were jaundiced. We took them home just a few days later and they thrived.

“When I look back to how poorly I was with HG it makes me think twice about having more children.

“The medication helped, but I lost a lot of weight and had to find foods that I could tolerate. I think people just have to try to find what works best for them. I found pureed fruit and sparkling water the best things for me in the beginning.

“I would advise anyone who is unable to keep fluids down when pregnant not to ignore this as it could lead to dehydration and you may have HG; seek medical help as soon as you can. ” After a first year together at home, new challenges arose when James was deployed to Afghanistan in July 2019. “It was a tough time as not only did I have the twins to look after, but I had just gone back to work part-time, and James would be away for six months. Fortunately, I am lucky to have my family around me. We’ve always felt that it was important for the boys to have a good routine and it certainly helped throughout this time with James away.

“Now we’re all back together and adjusting to life as a family again.”

Help and info Pregnancy Find out what antenatal care you should have on our website at twinstrust. org and watch our experts answer your FAQs in online videos Book our antenatal course or Preparing for Parenthood class via the website Talk to expectant parents on Twins Trust’s dedicated dedicated community forum online or visit the Twins Club page on our website to find your nearest club Download our guides on ‘Healthy Multiple Pregnancy’ and ‘Preparing for Parenthood’ from twinstrust.org, where you can also read guides on Breastfeeding, Neonatal Care, TTTS and Postnatal Depression Ring Twinline, Twins Trust’s freephone listening service, to discuss any concerns on 0800 138 0509, open 10am-1pm and 7pm-10pm, Monday to Friday

Charlotte needed a hospital stay to help her during her pregnancy with Oscar and Harry

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B A B Y:

Medical care

Twins Trust research shows babies’ lives are being put at risk by hospitals ignoring multiple birth guidance.

By Alyson Chorley

NOT NICE O

There are no excuses left for hospitals not to change – we’ve even set up our own team to help them

8

ur new report, BeCOME – standing for “Better Care of Multiples: an Exploration” – reveals shocking variations in clinical practice and care in twin and triplet pregnancies throughout the UK. Babies from a twin or triplet birth are still not getting the correct level of care from many NHS hospitals, and Twins Trust has found that healthcare staff are failing to follow multiple birth guidance QS46, as set out by the NICE (National Institute for Health and Care Excellence), despite recommendations to do so featuring in the government’s new guidance.

Called the “Saving Babies’ Lives Care Bundle”, this aims to halve stillbirths and neonatal deaths in England by 2025.

NHS England is already paying units in England more to deliver a higher level of care via a tariff system, under which each multiple pregnancy attracts an “intensive tariff” for antenatal care and an “intermediate tariff” for postnatal care, adding up to an additional £2,368 per pregnancy.

But the evidence shows that this money is not getting

to the front line. If units don’t improve their care, they will also be in breach of their new NHS contracts.

More than 1,000 parents of twins and triplets who had given birth in the past four years responded to our survey, and the data clearly highlighted variability in practice.

Keith Reed, CEO, said: “This report shows that opportunities to save twin and triplet babies’ lives are being repeatedly missed.

“What’s worrying is that it’s almost a decade since the NICE guidance showing how good care can be delivered was published. But this report shows huge gaps in maternity units delivering care in this way. There are no excuses left for hospitals not to change. We’ve even set up our own quality improvement team to help them.”

Using funding from the Department of Health and Social Care, Twins Trust set up a quality improvement project in 2016 with the specific aim of improving care for families expecting twins or more. In just 12 months, there was a marked improvement in outcomes in 27 units which took part.

Multiple Matters • Summer 2020

B A B Y:

Medical care

The most recent results come two years after the first phase of this groundbreaking project was carried out. They show a 23 percent reduction in neonatal admissions, an 18 percent reduction in neonatal deaths, 7 percent reductions in stillbirths and a 6 percent reduction in emergency C-sections.

“Good care is saving babies lives,” said Jane Gorringe, who manages the project at Twins Trust, “and we have the evidence to prove it. What is frustrating is that only 10 percent of the units we contact take part in the project, despite the evidence showing the improvements it creates.”

Twins Trust will be stepping up its efforts to get all maternity units to engage in the project, under which multiple birth midwives visit individual units, audit them and discuss how following the correct appointment schedule and delivery timing for each type of multiple pregnancy maximises the chances of good outcomes.

They provide access to multiple birth care plans and twin-specific growth charts, and show how the guidelines can be followed in practice.

Jane added: “Continuity of care is a huge factor to improving outcomes. Giving care in this way creates the chance for more in depth conversations to take place.

“Parents who see someone different at each appointment often have to describe their situation over and over again, which limits the effectiveness of the discussion.

“This can increase the risk of parents receiving inconsistent and conflicting advice which can lead to anxiety. A few simple changes can have astonishing outcomes.”

More than 10 units have signed up to pay for the project themselves since the health department ended

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Read the report at twinstrust.org/become-report

Key findings from our BeCOME Report

BeCOME e rienc expe not

Twins Trust has temporarily paused its Maternity Engagement Project in light of Covid-19. We are continuing to support our families and healthcare professionals as best we can during this time.

Room to improve

ithin ns w atio c li p

s did dent spon of re 61%

its funding in 2019. Sadly, though, uptake has dropped by two-thirds.

Keith added: “Trusts are being paid to deliver care in this way, via the tariff, and getting huge amounts back from the Maternity Incentive Scheme (which rewards trusts that certify they meet 10 safety standards) – millions, in fact. Our quality improvement scheme costs each unit just £8,000.

“The average cost of a stay in neonatal care for one baby is £6,112, and improving care in this way saves this many times over.

“We call on the Department of Health and Social Care to acknowledge that our project is a key contributor to achieving the Better Births ambition, especially the improvement in continuity of care among a vulnerable group as set out in the NHS Long-Term Plan.”

Professor Mark Kilby, from Birmingham Women’s Hospital, said: “These data published in the BeCOME Report outline that multiple birth antenatal clinics are far from universal in the maternity services infrastructure, and care organised in specialist clinics is at best patchy within the UK. “There are, of course, areas of satisfaction and good practice in maternity care. However, this report highlights that there is no room for complacency in the care of women with multiple pregnancies.

“There needs to be improved investment of resource by the Department of Health and Social Care and commissioners so that... continuity of care is universally established, and to allow the momentum reducing perinatal mortality in twins and triplets to continue.”

“ “

had much experience of I don't feel I saw anyone who t once, on other visits I twins. I only saw the consultan (DCDA twins) saw a trainee or assistant.” t then after that I I initially saw my main consultan After a couple of began seeing registrars instead. rs who didn't frustrating experiences (registra identical and nonunderstand the difference between who did not know identical pregnancies and another ) I found that I could ask to critical dates on my pathway time.” (MCMA twins) see the main consultant every

Just 28 percent of parents had discussed the risks and signs of pre-term labour – often a sign that a unit doesn’t have a specialist team for multiple pregnancies Only about half of parents had seen the same consultant, midwife or sonographer all or most of the time, showing a widespread lack of continuity of care Just 38 percent of parents whose babies subsequently needed neonatal care had been offered the chance to visit the unit before the birth Several parents had a negative experience of postnatal care, which may reflect the move from multiple-specific antenatal care to general postnatal care (a recurring theme: see the Health Survey March 2012 on our website) Healthcare professionals were more positive about adherence to NICE guidelines than parents, suggesting parents’ experience of care may not be as positive as professionals think

Page 33 Twins Trust BeCOME Report

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B A B Y:

Feeding advice

They’ve got

the T-shirt Let’s hear it for Twins Trust’s team of NCT-accredited breastfeeding peer supporters, helping out mums of multiples since 2012 By triplet mum Janet Rimmer

Our focus is simply on supporting the mother to find her own way as a parent

WHO ARE WE?

HOW DOES IT WORK?

We are mothers who have been there and got the T-shirt. We are not breastfeeding experts, but we have the lived experience of breastfeeding our twins or triplets and know the highs and the lows, the joys and the challenges. We know it can be tough to find knowledgeable support with breastfeeding multiples, especially one-to-one support, so we are filling the gap with an approach which is different from, and complementary to, support available via social media groups, baby cafes, health professionals and paid-for support.

NCT peer support training focuses on training mothers to be really good listeners, to listen carefully with respect and warmth, alongside knowing how breastfeeding works and when to signpost to other support.

Mothers and partners are invited to email us at breastfeedingsupport@twinstrust.org and one of our peer supporters will respond within 48 hours (though often quicker). Some emails ask for information on a topic which we send out via email. Others might be trying to find a way through a particular situation, so we often find a telephone call works best to talk things through. Sometimes, though, mothers prefer to chat via messaging or text, and we are happy to follow their lead.

WHAT DO WE DO? Our focus is simply on supporting the mother to find her own way as a parent. Given the space to talk things through, we believe that each mother is the best person to make the decisions that will be right for her and her family. We are happy to share information, tips and suggestions with mothers if that is what they are looking for. However, we know that what worked for us might not work for another mother, so we don’t encourage any particular approach or set of actions.

WHAT DO THE MUMS SAY? Mothers tell us that it is particularly helpful to have someone take the time to truly listen to how they are feeling and to give them the space and time to think through options. They really appreciate the lack of any pressure to go down a particular route, and that they feel able to discuss any aspect of feeding their babies, be it breastfeeding, mixed feeding or bottle feeding with breastmilk or formula milk (or both).

CAN I HELP? There are no plans to do more training at the moment, but if you are already an NCT-trained peer supporter and would be interested in joining the team, we would be keen to hear from you. Please contact our team leader Janet Rimmer via breastfeedingsupport@ twinstrust.org for more details.

Help and info Feeding Babies For help from our breastfeeding peer supporters, email breastfeedingsupport@twinstrust.org and say if you prefer to be contacted by phone, email or text Visit twinstrust.org to book and view Twins Trust’s webinar on breastfeeding, and watch video clips of our consultants answering your FAQ about feeding Read about feeding multiples on our website, where you can also find out about early development, routines, bonding and common concerns Ring Twinline, Twins Trust’s freephone listening service, to discuss any concerns on 0800 138 0509, open 10am-1pm and 7pm-10pm, Monday to Friday

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Multiple Matters • Summer 2020

PRESCHOOL:

Learning

LEARNING IS

CHILD’S PLAY

Twins Trust’s new booklet on play is full of brilliant but simple tips

By Helen Regan

PL AY

for twins, triplets and more

P

lay is central to children’s lives. It’s how they learn about the world, develop social skills and learn to express themselves.

Language development and play are very closely linked. From an early age, children learn through being sung to and talking with their caregivers. Just by talking and singing to children, parents are helping them to develop their speech and language.

Twins Trust has produced a booklet with tips and suggestions on how to play, and the advice also takes into account families who may have children with additional needs.

The booklet, “Play: for twins, triplets and more”, covers play suggestions from babyhood up to three years and beyond. It includes tips from childcare professionals, as well as parents sharing their experiences.

One mum told us: “We’ve definitely had more noticeable playtime since my twins were about four months or so, when they started really reacting to our voices and playing with toys.”

As well as play ideas there are “how to” pages which include lots of fun activities, from everything you need to know about making a sensory basket to creating an exciting den to hide out in or read stories.

There are tips about great toys, musical instruments and using what you already have at home. For example, a saucepan turned upside down and a wooden spoon makes a perfect

twinstrust.org

drum! There are also great tips on messy play and a recipe for making play dough.

Pretend play and dressing up is a key area.

This is important for all children, as it is through this type of play that they work out their place in the world and sort out what is real, what is possible and what is impossible in their own lives.

This kind of play is where twins, triplets and quads can really come into their own, as they have a ready-made group for pretend play.

Another great tip in this area is to keep some old recycling boxes and bottles. Once washed, these can not only be used in a pretend shop, but can make for wonderful craft activities.

One mum of twins told us that she kept some toys away from her children in a cupboard and only took them out when she went out and about, which meant the children were excited to see these “new” toys.

The booklet also lists advice on how to have one-to-one time with your twins, triplets or quads.

It offers practical suggestions, such as getting relatives – grandparents when that is possible – and older siblings involved. “I took my daughter swimming while my husband took my son to the park,” one mum told us. “They both had a wonderful time and keep asking when we can do it again.”

Please do download the booklet from our website for free at twinstrust.org. We hope you have fun!

Through pretend play, children work out what is real and what is possible in their own lives

Help and info Preschool years Visit twinstrust.org/play to download the new booklet, ‘Play: for twins, triplets and more’, and to read more on individuality, behaviour, language and development in preschoolers Visit the website to view video clips and webinars answering your FAQs, including advice on being housebound with multiples Make contact with other parents via local twins clubs, listed on our website under ‘Clubs’ Ring Twinline, Twins Trust’s freephone listening service, to discuss any concerns on 0800 138 0509, open 10am-1pm and 7pm-10pm, Monday to Friday

11

B A B Y:

Going solo

YES SHE CAN!

Journalist, writer and ‘double parent’ Jane Deith on the challenges and joys of bringing up twins solo

A Breastfeeding was tricky – no one to hand me the babies when I was installed behind my feeding pillow

12

t the midwife-run antenatal class, I was the only woman having twins. I was also the only one there on my own.

I didn’t mind being the odd one out. But I was surprised the midwives assumed people had “husbands”. Their top tip on night feeds was to make the 11pm or “late feed” a bottle, so hubby could do it.

Of course, as a solo mum, every feed was down to me. Either holding the babies rugby-ball style to breastfeed or, before I got the hang of that, sitting on the floor with a bottle in each hand, one for the baby propped up on my thighs facing me, one for the second baby in a bouncer chair.

My twins, a boy and a girl, were born early. They were in special care and my diary was suddenly full with meetings with neonatal doctors, demands for colostrum for the babies, blood pressure checks and painkiller for me. The twins were on ventilators on different wards, which meant I was constantly running between the two. In the fog of new motherhood I

didn’t even think to ask for them to be moved to the same room.

After a few days, they were able to leave special care and they were on the maternity ward with me.

Small things become more involved when you don’t have a partner. I had no one to babysit if I wanted to have a shower, so I had to wheel them into the bathroom with me – although actually, this became a quiet window, away from the hubbub of the ward.

Back home, three things got me through those first weeks. First was that my friends each signed up to a night shift. Second, my mum came up for stints. She couldn’t pull all-nighters, but she told me she would take up the baton at 5am. It meant I could doze or maybe sleep until around 9 or 10 and feel a tiny bit human. Some mornings, by 4.55am I was waiting outside her bedroom door with the babies in their Moses basket!

Thirdly, I paid for a doula to visit one night a week.

Sarah would walk through the door at 9pm and stay till 7am. At first she brought me the babies to feed,

Multiple Matters • Summer 2020

B A B Y:

Going solo

then changed and settled them. But soon I just wanted a night’s sleep, so she bottle-fed them. Knowing my babies were someone else’s responsibility for just one night was heaven. I simply couldn’t have done every single night (and day) solo.

Sarah would always say how well I was doing.

When no one else is telling you you’re a hero, that’s very welcome.

Breastfeeding twins was tricky. There was no one to hand me the babies when I was installed behind my feeding pillow. I remember getting one baby on board and thinking, how do I lift the other baby on here without the first one falling off? Google had the answer: get a firm grip on the babygrow using a “kitten hold”!

Sleep, or the lack of it, was my obsession for our first nine months. When my son went through a phase of frequent waking, I felt I had to whisk him into my bed so he didn’t wake his sister. A sleep consultant helped point me and my son in the right direction.

After a few nights we saw the light at the end of the

twinstrust.org

tunnel. Now I have twins who get themselves off to sleep and stay that way until a reasonably social hour – most nights, at any rate.

I’d recommend any parent to talk to the charity Homestart*. They matched me with a volunteer who had twins herself and understood the practical and emotional challenges. She helps out for a couple of hours a week – a crucial window when I can cook some stuff for the freezer, mow the lawn or even clean the bathroom.

One unexpected upside of solo parenting twins is that it has made me more outgoing. When they were babies, if we went out and I needed to change one of them, I would ask the friendliest person in the café – or the waitress – to look after the other baby while I went to the loo.

I accepted every offer of help.

Sometimes they came from people I didn’t know that well, but have since become great friends.

Some days I feel lonely. But other days I feel relieved I don’t have to worry about how a partner is feeling. And I don’t have to consult anyone else about the decisions I take.

Money is tight: my childcare costs are twice my mortgage. But what I would like more of is time. To do anything for myself, whether it’s going for a jog or getting my hair cut, I usually have to pay for a babysitter. But never leaving them would drive me mad sooner or later.

The twins are now toddlers. They play together, have each other in hysterics in the bath, and give each other kisses before bed. Their favourite things are dogs, puddles, bubbles and books. I read somewhere that those of us who are flying solo shouldn’t say we’re single parents but “double parents”, because we’re doing the work of two people. I’m proud of myself and I’m proud of them. We’re a team. The three musketeers. All for one and one for all!

You can visit Jane’s website at www.janedeith.com/ We also run a closed Facebook page for one-parent families. To join, please email support-team@twinstrust.org

Sarah always said how well I was doing.

When no one else is telling you, that’s very welcome

Three musketeers: Jane and her twins

*Twins Trust offers support through its Family Crisis Support service. For anything else email support-team@twinstrust.org or ring Twinline our freephone listening service on 0800 138 0509 between 10am and 1pm and 7pm and 10pm, Monday to Friday.

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FOCUS:

Travel

Never give up

What to do when a determined traveller has babies?

Lockdown aside, just keep going…

By Clotilde Passalacqua

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was immediately fascinated with the idea of two ​​ identical children. Since I was a child I had always dreamed of having a twin sister, and I’d always been curious about twins. Of course, very quickly we went from our idyllic dream to the reality of everyday life.

At the beginning, with twins, we were never ready to go out for a walk before three in the afternoon. Our sense of dread only increased when we listened to the advice of several friends who, despite having only one child, no longer seemed to have time to do anything.

We were often told to forget about travel, museums, cinema, or any other adult interest.

Although intimidated, I knew there were things I was not willing to sacrifice and I would commit myself to nurturing my interests, especially my deepest passions: I would never stop exploring.

Mark and I had always loved to travel. We had ventured on a road trip from Texas to Alabama when I was six months pregnant. What could stop us now?

Well, travelling now requires more organisation.

We need more information, but while it is certainly different, it is not so much more difficult than before.

Since Liam and Santiago were born in May 2016, they have been to about 15 different countries, including Italy – my home country – Japan, Egypt, Hungary, Peru and Turkey, to name a few.

The children won’t remember these adventures, but I will. I’ll remember the wonderful places we’ve explored, but also discovering new things to teach the boys. I will never forget their faces as they met a lama for the first time in Peru, or seeing them swim in the Nile with our boat captain.

Although intimidated, I knew there were things I was not willing to sacrifice We started small, however. Our first two trips, when Liam and Santiago were three months old, were to Northern Ireland and Italy respectively, to meet their grandparents. These first steps made a virtue of necessity. But for our first real holiday with Liam and Santiago we went to Madeira. It was November and Mark didn’t want a long flight, while I wanted the sea... it was perfect. In truth, with a fivemonth-old baby any place is fine, but Madeira was compact and not too hot.

We’ve had disasters too, and we generally do learn something from them. When Liam and Santiago were 13 months old we went to southern Italy for a two-week beach holiday. In Italy, if you don’t take your kids for a

Multiple Matters • Summer 2020

FOCUS:

Travel

beach holiday in the summer you are judged to be a criminal! The sea air is good for them, everyone says, it helps them to grow, it strengthens the bones, blahblah-blah...

I had thought it would be perfect, and it was the biggest travel mistake we have made. A beach holiday with 13-month-olds is not relaxing. Eating sand, collecting rubbish, trying to drown in the sea or get roasted in the sun… all these seemed to be at the top of the “to do” list for a 13-month-old. What I learned from this beach holiday with toddlers was not to try it again.

Meanwhile, we found that being flexible was the best thing for travelling with children. Despite detailed planning, something unexpected always happens. The second time we flew with them we missed the plane, not having considered that with children every single thing takes more time – much more time. In this case, one unexpected nappy and clothes change meant we arrived just after check-in closed. Luckily, they kindly booked us on a later flight – but as a result, where we used to arrive at the airport one hour beforehand, we now leave three.

I love planning as much as the trip itself. Having an idea of ​​how the days are structured helps me to be realistic about what we can do, and identify what we

twinstrust.org

need. Is it better to move around with a stroller or with a baby carrier? Will we stay out the whole day and need snacks/lunch/water, and are there supermarkets and restaurants easily accessible? Do we have to bring milk formula and nappies for the duration, or can we buy more there?

These details make the whole trip more relaxing.

When we went to Japan, for example, Liam and Santiago were 18 months old and still in nappies – a common product found almost everywhere, you might think. Well, almost everywhere. In the central tourist area of Tokyo it is very difficult to find nappies for babies; for adults, as many as you want, but for babies just forget it! Luckily, we had gone prepared.

With little children, we found that taking direct flights is money well spent. Even the neatest, most organised parent finds themselves after a few hours with half the hand luggage spread over seats, on the ground and on tables. Packing all that up again, only to disembark, re-embark, unpack, repack again… Nightmare!

Determination is probably the other great thing you need to travel with young children. Perhaps the biggest thing to remember is that if you really want to achieve something, you will do it. So my advice for anyone who is becoming a parent would probably be, believe in what you really want to see happen.

Clotilde and Mark reckon their children Liam and Santiago have already clocked up visits to 15 countries

At first we were never ready to go out for a walk before three in the afternoon

15

FUNDRAISING:

Appeal

No matter what Covid-19 Emergency Appeal A message from Krista Pound, our chair of trustees, on how Twins Trust is stepping up to the Covid-19 challenge to help our families

We don’t want multiple birth mums to feel alone, no matter what the coronavirus throws at them, and Twins Trust has gone into overdrive since the Covid-19 pandemic began.

We have seen unprecedented pressure on NHS maternity and neonatal services as clinical staff fall ill, are self-isolating or diverted to the front line to help fight Covid-19, leaving our expectant and new families needing us more than ever before.

Since the lockdown began we have adapted our services, and our staff and volunteers have worked around the clock to maintain our vital services, while adding new, additional support for our families as more pressure is put upon the NHS. Lockdown has been hard and I’ve been thinking a lot about anyone who is pregnant or has newborn babies, and I really feel for them and can only imagine their anxiety.

We saw very early on the effects of the pandemic on some families and stepped in to help them. Lucy’s story, opposite is one example. We then stepped up more as the coronavirus crisis got worse and demand for our services increased.

April alone saw a 400% increase in demand for our Family Crisis Support Service which extended its reach to help families in neonatal care and new parents arriving home during lockdown. We also put our antenatal classes online (with an 88% increase in attendance in April) so multiple birth families didn’t miss out on potentially life-saving information.

Our support is still desperately needed and we want to continue to be there for our families no matter what.

BUT, like other charities, our income is falling as fundraising events have been cancelled or postponed and other funding sources disappear due to the pandemic.

We know your world will have been turned upside down by the coronavirus pandemic too, but, if you can, please donate to Twins Trust’s Covid-19 Emergency Appeal to help us continue to support families with twins, triplets or more.

Thank you.

We URGENTLY need your support so we can continue to provide immediate help to expectant and new families and to support our phenomenal NHS. We don’t want any mum to feel alone 16

Multiple Matters • Summer 2020

FUNDRAISING:

Appeal

HELPING LUCY “It’s frightening when your babies arrive prematurely. You’re not prepared mentally or physically,” says Lucy. This is how any parent would feel having their babies prematurely, but for new parents Lucy and Justin, there was the added stress and uncertainty of coronavirus restrictions.

Lucy was in hospital from 33 weeks due to pre-eclampsia, and when Cole and Liam arrived shortly afterwards on 5 March by C-section, they were taken straight to neonatal care for help with their breathing.

During her 10 days in hospital Lucy was able to visit her babies in neonatal care, but after she was discharged she developed a cough. She was told to self-isolate, and that she couldn’t visit them for seven days. “I was so upset, I just wanted to be with my babies. I just wanted to touch them and talk to them and make sure they were ok,” she said.

Devastated, Lucy got in touch with our Scottish Co-ordinator Helen Peck, who contacted the hospital. She asked if a staff member could video-call Lucy from the neonatal ward. This wasn’t allowed for safeguarding reasons, but the neonatal consultant spoke to the health visiting team, who said they would try to visit the babies in hospital and video-call Lucy.

In the meantime, on day six of Lucy’s self-isolation she developed a fever due to mastitis. Once again she was told she would have to self-isolate, this time for a further eight days. “Six days had passed and I hadn’t been able to see my babies,” said Lucy. “I felt numb, sad and upset. I wanted my babies to know I was there, I wanted them to hear my voice.”

Helen told us: “I was desperate for Lucy and Justin to see their babies. I can’t imagine how they must have been feeling.”

Finally, Helen had an email from Lucy to say that the Health Visitor had been into the hospital and FaceTimed Lucy so she could see her babies. “I can’t tell you how much it meant to me,” she said. “I want to thank Helen so much for supporting me. I was so upset I was unable to think clearly.”

Lucy visited her boys in neonatal care once the isolation period was over, but only one parent was allowed in per day, with no return allowed once she had left the unit each day. She was allowed to stay overnight, but “I couldn’t even go upstairs to shower or get food,” she told us. “I could not leave the neonatal unit for the whole two days I was there. Justin struggled a lot, especially for the two days I was with them and he was at home alone.”

Happily, Lucy, Justin and their boys are now doing well, at home at last and over the moon to be together as a family.

HOW YOU CAN HELP We know not everyone will be able to donate during this time of economic hardship, but if you are able to, it will make a huge difference to us and those families who need us the most.

If you can, please donate now by visiting www.twinstrust.org/emergencyappeal or maybe you could take part in a virtual fundraising challenge?

Please email luciewigley@twinstrust.org for ideas or to tell us about your challenge.

twinstrust.org

17

PRESCHOOL:

Prematurity

Extra time Early babies can benefit from starting school later, giving them more time to play and develop.

By Alyson Chorley

I’d heard about TTTS, but as I’d gotten to 34 weeks I absolutely thought I was out of the woods

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wins Luca and Noah are looking forward to starting school in September as 5-year-olds after Twins Trust helped their mum, Renata, defer their start for a year.

The boys are enjoying their time at preschool, but Renata, who is a secondary school teacher, knew they would not be ready for fulltime school just a few weeks after their fourth birthday.

Born prematurely, the boys had endured complications following a relatively straightforward pregnancy.

“I’d heard about TTTS [Twin to Twin Transfusion Syndrome], but as I’d gotten to 34 weeks, I absolutely thought I was out of the woods,” said Renata.

It was around this time that she started experiencing tightness and pain around her bump. Already with one child at home, she took herself into the Royal Cornwall Hospital in Truro where her blood pressure was checked. She wasn’t in labour and was sent back home to Newquay and told to return if anything changed.

“They were very busy that day, but in hindsight I probably should have been scanned,” said Renata.

Twenty-four hours later, she felt that all was not right.

“I went back in on Saturday morning, not knowing what to expect but after being checked with heart rate monitors, within 15 minutes I was rushed in for a category one emergency C-section.

“I feel some of this speediness was down to luck – a friend I saw when I was in there, a registrar gynaecologist who assessed me and ended up delivering the twins. I will be eternally grateful to her.

“Normally in a Category 1 emergency C-section the patient goes under, but luckily I had an epidural as I wanted to be awake when my babies were born. When Noah came out, he was white and wrinkly. His sac was dry. Luca was bright red with a sac full of fluid that my friend struggled to burst.

“If we had waited another 12 hours, it could have been a different outcome altogether.”

Renata had been diagnosed with acute TTTS, when babies who share a placenta divide the blood supply unequally, to the detriment of both. This particular kind of TTTS tends to happen quickly due to sudden differences in blood pressure between the twins during the last three months of pregnancy. It can also occur during labour, or even after the cord of one baby has been clamped.

Renata was surprised at the diagnosis. “I thought TTTS was something to look out for around the 16-20 week mark and as I had passed that stage I thought I was in the clear.”

Noah weighed 4lb 10oz and Luca 5lb 12oz; both were cared for in the neonatal unit for two weeks.

Noah needed a blood transfusion, while Luca needed

Multiple Matters • Summer 2020

PRESCHOOL:

Prematurity

Help and info phototherapy to break down the oversupply of red blood cells – what’s known as “sticky blood”.

“I feel incredibly grateful that they are now happy, healthy and lively four-year-olds,” said Renata.

“Whilst they have hit all their milestones, I knew they were not emotionally ready for school, they are still having a nap during the day and not completely independent with toileting.”

Renata got in touch with Twins Trust and one of our voluntary honorary consultants helped her write a letter to the authorities setting out the case for deferring the twins’ school start date.

“I was prepared for a fight, but Lorna’s knowledge and expertise made the process run so smoothly and I am so grateful to Twins Trust for offering this unique service, and so relieved that Luca and Noah are enjoying an extra year of play, as they should have done if they had not been premature, without being in the school system at four years and two weeks.”

And if Noah and Luca look a tad familiar, they played Doc Martin’s son James Henry when they were 18 months old in series 8!

“It was a wonderful experience,” said Renata.

“We filmed over four months during the summer.

Living in Cornwall it was easy for us to get to Port Issac, which is the fictitious Portwenn in the series.

“My six year-old daughter Lara was an extra in the latest series. It is wonderful to have these episodes to look back on.”

Noah and Luca – pictured left with big sister Lara – went on to play Doc Martin’s son, James Henry, in the ITV comedy drama

Prematurity and school Twins Trust has Honorary Consultants for Education, Speech Therapy, Family Therapy and Educational Psychology.

If you would like their support, please check eligibility at twinstrust.org, where you can also fill out a referral form Download Twins Trust’s ‘Schools Admissions and Appeals’ pack from our website Ring Twinline, Twins Trust’s freephone listening service, to discuss any concerns on 0800 138 0509, open 10am-1pm and 7pm-10pm, Monday to Friday

I am so relieved they are enjoying an extra year of play, as they’d have done if they hadn’t been premature

Are you worried about the shape of your baby’s head?

Being a twin is one of the factors that could lead your baby to have a condition called Positional Plagiocephaly or ‘Flat head syndrome’. If there is no natural improvement by the age of 4/5 months you might want to seek advice. The London Orthotic Consultancy (LOC) offers an initial FREE consultation at its clinics during which your baby’s head shape will be assessed and measured and treatment options discussed. The first option is normally repositioning but if this does not work the LOCband cranial remoulding therapy will produce measurable improvements to head shape.

To speak to a clinician or book a FREE initial appointment at any of our clinics ring 020 8974 9989

Before Treatment

T: 020 8974 9989 E: info@londonorthotics.co.uk W: www.londonorthotics.co.uk

The LOC mark and Emblem are registered trademarks of The London Orthotic Consultancy Ltd

Multiple Matters ADVERT 003.indd twinstrust.org

1

LOC Plagiocephaly treatment clinics.

The LOCband treatment is also available at Hampshire Orthotics in Southampton and at Prestige Healthcare in East Barnet.

After Treatment

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15/04/2020 9:31 am

FOCUS:

Crisis suuport

We’re doing well

Paul with Mattias, Lukas and Sarah: ‘The three of them are just great’

Eight years on, Alyson Chorley catches up with the family whose bereavement led to the creation of our Family Crisis Support service

When I look back at that time eight years ago, I honestly don’t know how I would have got through

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wins Trust has been helping families in desperate need since we supported bereaved triplet dad Paul Mason following the devastating death of his wife, just a few days after their babies were born.

Isabel had been “on top of the world” after welcoming Mattias, Lukas and Sarah at the Royal Hampshire County Hospital in Winchester on 2 March, 2012. Tragically, the 34-year-old died a few days later from hemopericardium, where blood leaks into the heart from a tear in the artery.

The family’s health visitor got in touch with Twins Trust to see if we could help. When we shared with members what had happened to Paul’s family, we were overwhelmed with offers.

This led to the formation of our crisis service, once known as Helping Hands and now rebranded as Family Crisis Support. It started with a fundraising page we had set up in Paul’s name. But we also got in touch with the Norland Agency to see if their qualified nannies could offer any voluntary help.

We didn’t know what to expect, but Norland put out a call and was inundated with offers. In a matter of days, a team of Norlanders arrived to help Paul over a period of four weeks.

He says the help he received was invaluable.

“It soon became apparent to me that it would be impossible for one person to look after triplets singlehandedly 24/7, so they were the difference between having a workable way forward or slowly grinding myself into the ground,” he told us.

Not only did the Norlanders help him through a difficult time of grief just by being there, but

they offered Paul tips that accelerated the process of settling the babies into their new environment and helping them to get to sleep, and stay asleep, between feeds.

It’s why Paul, who now works as a learning support assistant (LSA) at his local primary school, is supporting the rebranding of our service from Helping Hands to Family Crisis Support.

“I love this new name for the service. It’s so clear – you are there to support families in the multiple birth community through times of crisis. This was a true lifeline for me, and I’m sure has been for other families.

“When I look back at that time eight years ago, without the support of Twins Trust (then known as Tamba) I honestly don’t know how I would have got through.”

Mattias, Lukas and Sarah are now eight years old and thriving at school.

“There have been tough times, and there will be more to come, I’m sure,” said Paul, “but things are going well. I love my job as an LSA – it’s a little bit different to what I used to do before in Ordnance Survey, but it means I can be around more for the children.

“And the three of them are just great – lots of fun!

We’re doing well.”

Family Crisis Support has helped countless families over the years and its first ever evaluation report showed that the service is greatly valued.

Evidence shows it has made a significant difference to parents’ ability to manage babies’ sleep, develop routines, organise feeding, get out and about, and

Multiple Matters • Summer 2020

FOCUS:

Crisis support

CRISIS SUPPORT Help at the right time

Heartbreakingly, Isabel died a few days after her babies were born

guide children through behavioural issues.

The evaluation also noted that anxiety and depression were commonly cited by families who sought help, so we are now using the Hospital Anxiety and Depression Scale measurement as part of our service evaluation. That data has yet to be fully analysed, but initial results suggest that families experience an improvement after support – evidence that this unique service really does change lives.

Keith Reed, CEO at Twins Trust, said: “In many instances our intervention has prevented a very serious situation deteriorating even further.

Everyone who has been helped by the Norlanders are overwhelmingly positive about their character, manner, expert knowledge and willingness to help.

“As an organisation, it has been extremely easy and rewarding to work with the Norland team. Their professionalism is exemplary. Their communication with us and our clients is open and respectful at all times and their knowledge base is first rate.

“We are delighted to be able to continue to offer this service to our most vulnerable families.”

A Birmingham mum is full of praise for our Family Crisis Support service after we stepped in to help when she lost her husband suddenly.

Beatrice was struggling with baby twins Braxton and Brandon and toddler Belvin, following the death of her husband in a car crash. “My health visitor referred me to the Twins Trust service and it was the best thing because being on my own, it was so hard,” she said.

Our childcare support practitioner, Gemma, visited Beatrice at her home several times. She helped Beatrice with practical support like buying highchairs and advice on feeding.

“She was very good at explaining things to me at a time when I was grieving,” said Beatrice. “I really needed the help and it came at the right time.”

Her twins are now one and doing well, while Belvin is three.

She told us, “[Gemma’s] handson help and positive attitude towards me and my children helped me feel empowered rather than judged and incapable.”

This was a true lifeline for me, and I’m sure has been for other families

FAMILY CRISIS SUPPORT Who does it help, and how?

This service offers practical help to parents of multiples who are in severe need or crisis. They may be struggling with mental health challenges, ill health, or coping with a bereavement or other extreme circumstance. These families have exhausted all other avenues of help and have nowhere left to turn.

Twins Trust employs a childcare support practitioner in northern England and in the south has the support of the Norland Agency. We have adapted the service to support more families during the Covid-19 crisis. Please visit www.twinstrust.org/family-crisis-support

twinstrust.org

Braxton and Brandon, now thriving one-year-olds

21

PRIMARY:

Development

Through the cracks

comes the light

Journalist Angela Cuming shares her experience of parenting twin sons with autism

You used to wish you could hear the words ‘I love you’ from your twins. Then you realise they had been telling you all along

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hey were identical twin boys born at 34 weeks and you named them Tommy and Henry. They were so tiny and fragile and so covered in wires that you were afraid to touch them in case they would break.

And then they came home and started to grow and were happy little things who ate well and slept even better and you breathed a sigh of relief and thought the hard part was over.

They turn one, and then two, and you think one is trying to say “mama”, but you’re not sure.

They are looked at by doctors and specialists but you are told there is nothing to worry about, that they will start talking soon. But now they are three, and now four, and there’s only a few words and something just doesn’t feel right.

So now there’s a room and so many faces and names and clipboards and the diagnosis is given onthe-spot: Autism Spectrum Disorder.

And now life with autistic twins is your new normal but it all seems so surreal because life with twins should get easier, not harder, and now it seems like you just made it over one mountain to stand at the foot of an even bigger one.

“Our life is basically divided into 10-minute blocks now,” your husband says that night over the sound of wailing cries and toys being thrown across the room.

You nod and keep folding laundry.

There are tough moments.

You take your eldest son, six, to see Santa and later look at the photo, the two empty spaces where his little twin brothers should be sitting.

That same boy will later scream with frustration into your chest as he cries and asks why his brothers won’t stop wrecking his stuff. “It’s not fair,” he sobs and you can’t think of the right words to comfort him.

There’s a kind of grief that comes from moments you may never get. At least not for now. No bedtime stories with your twins. No trips to the playground (they aren’t fenced) or the local museum or even a walk down the high street for an ice-cream. Home is both your sanctuary and your prison.

There’s awful, wrenching guilt too, about all the times you put your precious twins in stressful situations not knowing they were autistic. You wish you could do so many things differently. You look at their kindergarten photo, see Tommy trying to smile through tears, and realise he wasn’t being difficult that day. You take the photo down off the wall.

“Are your twins even real? I never see them,” says one mum at the school gate.

You cry when you get home.

There’s moments of visceral anger, too. You read a National Autistic Society report that 28 percent of

Multiple Matters • Summer 2020

PRIMARY:

Development

Angela’s twins, Tommy and Henry, were born at 34 weeks

Help and info Special needs

autistic people have been asked to leave a public space because of behaviours associated with being autistic and your heart breaks.

You log on to Twitter and there’s Karen and Kevin complaining about kids crying on planes and kids using iPads and kids making noise in cafes, and that’s your beautiful little boys they are talking about.

You read that people reckon Australian prime minister Scott Morrison is autistic because he was so uncaring towards bushfire victims, and then see Tommy wipe tears from Henry’s face after he falls and hurts himself, and wonder how people can get being an insensitive idiot and autistic so mixed up.

You ask your eldest son’s school where the disabled parking spaces are so you can pick him up from school with his little brothers, and you are told there are none.

Your family feels like it is cracking, but through the cracks comes the light.

The twins begin speech and language therapy and slowly the words start to trickle out.

One day, out of nowhere, Tommy says “hi mummy”, and it’s the most beautiful sound you’ve ever heard. A friend gives them a toy tea set and Henry has a brief but spirited tea party with you and his toy dinosaurs.

Big brother Charlie starts to build his little brother’s toy trailers out of his prized blocked collection for them to play with.

twinstrust.org

You used to wish that you could hear the words “I love you” from your twins. Then you notice that Tommy always strokes your hair and says “so cute”, and Henry will press his face into yours and smile, and realise that they had been telling you all along.

There’s less heads banging against walls and floors, fewer meltdowns, professionals are called in to prepare them for school.

One day, out of habit, you ask Tommy if he would like some toast and he answers “yes please, mummy”, and you almost fall over in delighted shock.

You realise the world is filled with people who are kind and understanding towards autistic children. The neighbour who drops around dinner without being asked. The work colleague who tells you the best and most interesting people are neuro-diverse anyway. The local supermarket worker who sweeps you up in a big hug on a bad day and whispers “it will all be okay, you know”.

You watch your twins cuddle into each other in an exhausted sleep, watch their mouths curve into little smiles when they reach for each other’s hands, and you know she is right, it will be okay. They have each other, they are each other’s lighthouse on a stormy night.

Now your village is speech and language therapists, social workers, occupational therapists and psychologists. They stop talking about Steve Jobs and Greta Thunberg and instead tell you that yes, it will get better. That’s all you need to hear.

You learn the Maori word for autism is “takiwatanga”. It means “in their own space and time”. Tommy and Henry’s paediatrician tells you it’s his favourite word in the whole world. You agree with him.

Twins Trust has a closed Facebook page for parents with a special needs child or children so they can share experiences and chat with others in privacy. For access, email support-team@ twinstrust.org If your multiples have special needs and you would like help, please visit twinstrust.org/let-us-help/ support/resources-andgroups.html Ring Twinline, Twins Trust’s freephone listening service, to discuss any concerns on 0800 138 0509, open 10am-1pm and 7pm-10pm, Monday to Friday

You learn the Maori word for autism is takiwatanga.

It means, ‘in their own space and time’

Angela is a journalist based in New Zealand.

You can follow her on Twitter @AngelaCumming

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ADVICE :

Problems shared

Ask Twinline The family support team at Twins Trust answer your questions PANDEMIC ANXIETY I have 12-year-old twin boys. One has special educational needs and has become anxious about the Covid-19 outbreak. We have tried to shield him from the news, but he has started obsessing over it and displaying worrying behaviours, such as repeatedly washing his hands and not wanting to hug me. How can I support him?

A: These are worrying times, so it is understandable that your son would feel anxious when hearing the news or other conversations around him.

Your son will be reassured by watching how those closest to him are responding to the situation. If you can remain calm and reassuring, this will help lower his anxiety levels. It may also help if you encourage his twin brother to become involved in reassuring your son that he is safe and well at home.

Obsessive behaviour, particularly the compulsive washing of hands, feeds off uncertainty and doubt, so you need to address

LOCKDOWN PHONE USE these issues. Your son may be reassured to know what measures have been put in place by the government to help protect you all. Share selective trustworthy news with him and keep him away from social media, as these stories can lead to more anxiety.

Set up a routine for handwashing, such as before eating and when coming home from outside, for example; but no more than is necessary. Explain that this is enough. Encourage both of your sons to do this together. Ensure you keep communicating with your son and encourage him to continue to share how he is feeling. Continue to hug your son who isn’t anxious, and reassure your other son that you are ready to hug him when he feels comfortable to do so.

You may want to consider joining our Special Needs Facebook group for further support. If so, please email us at support-team@twinstrust.org.

For more advice on supporting children and young people during the pandemic, visit http://ow.ly/VcM250z0ECg

He is repeatedly washing his hands and not wanting to hug me. How can I support him?

24

During isolation, we let our girls have access to their phones 24/7 (we have 14-year-old twins) because we wanted them to be able to stay in touch with their friends. Whilst I am looking forward to things getting back to normal and for everyone to be safe, I am also wondering how best to bring back the phone rules we had in our house before the lockdown.

A: You certainly won’t be alone with this problem! Many children and teens will have had more screen time during the lockdown than usual. Make sure that your girls understand that “special phone rules” are in place because of special circumstances. They should be aware that when they are able to mix with their friends again in person, the old rules slot back into place. Make sure that these rules are consistent for both your girls.

Try to lead by example. You may have found yourself relying on your phone more during the isolation period too, so make sure you reign this back. Try to maintain certain “old” phone rules.

So for example, no phones at the dinner table, or in bedrooms after 10pm. These rules are still beneficial, even in times of social isolation.

Finally, after the isolation period try to ensure your daughters are too busy to have their phones in their hands 24/7. Keep them socialising and actively encourage the sports, hobbies and interests each one enjoys. After a long isolation period, this should be welcome – and they will naturally rely on their phones less and less. (For more information, see page 27).

Make sure they all understand that special rules are in place because of special circumstances

Multiple Matters • Summer 2020

ADVICE :

Problems shared

SLEEP REGRESSION My six-month-old boy/girl twins have started waking up quite a few times in the night.

They have a blackout blind in their room and nothing has really changed in the house, but it happened after the clock went forwards.

A: We can appreciate how frustrating it can be when your babies appear to be regressing in their sleep habits. In fact, it is quite common for babies around this age to go through a phase where their sleep is more unsettled. This “sleep regression” can occur for several reasons. Babies of this age still commonly wake for night feeds. It might be that they are feeling hungrier now due to a growth

spurt. Now that your babies are six months old, it might be time to start weaning them.

This is also an age when your babies may be teething, which can unsettle them at night. Signs of teething include sore gums, one or two flushed cheeks, more dribble than usual and the desire to chew down on things. The babies may need extra cuddles to reassure them. Gently rubbing their gums with a sterilised teething toy (whilst letting them bite down) may help soothe their discomfort at night.

For tips on weaning your twins, triplets or more, please visit the blog page on our website via twinstrust.org/blog/parenting.html and selecting the weaning blog.

At six months, babies often go through a phase where their sleep becomes more unsettled

PROBLEM? Why not write to Twinline and let our team of experts – all fellow parents of multiples – lend a listening ear?

Just email asktwinline@twinstrust.org.

We respond to all emails.

We have courses designed specifically for parents of multiples • • • •

Antenatal Breastfeeding Practical preparing for parenthood Webinars

For more information about courses email

support-team@twinstrust.org or call 0800 138 0509 www.twinstrust.org

twinstrust.org

25

TEENAGERS :

Exams

Getting let off exams might seem a boon to this year’s GCSE and A level students but it’s not all gravy…

By Alyson Chorley

I know it’s out of my control, but it’s the same for all year 11s and 13s everywhere

Help and info Teenagers For more support with teenage multiples, visit https://twinstrust.org/let-ushelp/parenting/secondary/ teenage-multiples.html The booklet ‘Multiple Birth Siblings as Adolescents’, available at twinstrust. org, has information on topics such as developing at different rates; identity; the detachment phase; friendships with others; support networks; decision making; and working towards adulthood.

Ring Twinline, Twins Trust’s freephone listening service, to discuss any concerns on 0800 138 0509, open 10am-1pm and 7pm-10pm, Monday to Friday

26

T

his has been an unprecedented time for everyone, but not least for our teenagers, who will be known as the Covid-19 generation – the ones that didn’t do exams.

Teenagers have mixed emotions at the best of times, but the announcement by the prime minister this Spring that all exams were cancelled came as a huge shock.

The initial announcement might have been exciting, but the novelty soon wore off. We saw lots of messages about students in year 11 missing out on proms, as well as not having the symbolic farewell and signing of shirts. For some it was heartbreaking.

At one school we know in Somerset, the 700 or so pupils from other years applauded the year 11s on 20 March as they left for home on what was to be their last day. Maybe this happened at lots of schools. There certainly wasn’t much time to prepare.

Those teenagers with good predicted grades were probably breathing a sigh of relief, but others may have been left anxious about what will happen when the grades come through the door this summer.

With GSCEs, many students hope to revise their way out of trouble over Easter and thereby pull a better grade out of the bag come the summer. That is what happened in our house: extra work was put in and reflected in the final grades.

We now know, though, that teachers and lecturers can change predicted grades. I would advise parents to encourage their teenage twins

and triplets to stay in touch with school or college as much as possible, and to complete any work set.

My daughter Emily is in the final year of A levels.

She has good predicted grades in English, History and Graphic Design, and like many others had been offered a place at university which she had accepted. However, as the history syllabus was not finished when the college closed, she continued to be sent work by her teacher. She was encouraged to do as much as possible – despite a certain “what’s the point?” attitude, which I’m sure was echoed in many households across the UK. The government has said it is down to teachers to submit “carefully considered” GCSE and A level grades for their students, but that regulator Ofqual will also use a “standardisation model” to stop any over-generous marking.

“I think it is good that teachers will be able to have a say in the final results because they will know the effort students will have started to put in before the schools and colleges were closed,” said Emily. “But I still don’t know what the summer will bring, or even if I will go to university in September.

“I do sometimes feel anxious, but I know that it’s out of my control, and it’s the same for all year 11s and 13s, everywhere.”

On the bright side, being a teenage twin or triplet does mean having brothers and sisters to share this novel experience with. “I’ve found talking to my friends and my sister has helped as we’re all in the same boat,” said Emily.

Multiple Matters • Summer 2020

TEENAGERS :

Communication

To phone

or not to phone?

Triplet mum and Twins Trust Fundraising and Advertising Coordinator Lucie Wigley on denying phones, trying phones, and the signing of contracts

W

hen should you get your children their first phone? We couldn’t decide.

For a long time we felt they didn’t need them because they walked to school, and we knew exactly where they were. We used to tell them they could get a phone when they were as tall as the light switch. Unfortunately, when that day came, we as parents weren’t ready!

At about 11, we did buy one phone for all three children to share. It was only to be used when someone went out and needed to be contacted. From our point of view, we wanted to see if they would lose it, answer it or call back when agreed. Then, as they got older, we found that at times both our girls would sometimes be out at different places at the same time, and I wasn’t comfortable with there being only one phone between them.

Decision made, the children were only interested in the make of the phones, but for me it was about how best to set things up. I found a contract online that was very useful: it listed the things I felt we needed, including talking to the children about parents having access to the phones, about security and bullying, and rules around posting on social media.

I asked everyone to read it carefully, and to sign it if they understood and agreed to the rules.

twinstrust.org

Christina, Ben and Emma

CAUGHT IN THE WEB It may appear controlling, but the phones do take over their lives, so I felt the rules had to be laid out up front to avoid future confrontation.

A year on I have also installed an app on their phones that switches apps off at certain times in the evening, otherwise they might go on forever.

Talking to other families has been useful, too. Some families have a rule that phones stay downstairs overnight. Others don’t allow phones upstairs at any time. I have spoken to parents who allow phones only at certain times, some who turn off the wifi, and some who insist on a phone-free day each week.

I would say overall that the phones give my children independence and me peace of mind when they are out. All the same, it can sometimes be frustrating – you can’t do much about a phone on silent mode!

It may appear controlling, but the phones do take over their lives so rules need to be laid out up front

7 tips to stay safe online

• Discuss internet safety as soon as children start to use any internetconnected devices.

• Chat to them about what they like to do online and how it makes them feel.

Visit www.childnet.com/parents-andcarers for conversation starters.

• Establish routines for the whole family: where devices are kept, how long they are used and when. This could form part of a phone contract.

• Be clear on strategies your child can use if something worries or upsets them online, such as turning over the device and getting help.

• Get to know safety features on your devices. There’s helpful information at www.safeinternet.org.

• Be curious, not furious. If your child sees something inappropriate online, remain calm: that way they will feel they can come to you again.

• Keep the conversation going. It’s important to keep talking about online safety. Find quiet moments together or use news stories as a way in.

27

P H O T O G A L L E R Y:

Celebrations

Multiple

a Juliet and Elizabeth Evans enjoying ths mon 17 aged ther, toge bubble bath

Joys

Spring brought our families plenty of moments worth snapping, both before the lockdown and during it

Evie and Finley getting ready for their 1st birthday party – a che eky girl and a laid-back boy

ry, 24 Janua born on , ra o N rt d a n inutes ap Stanley a nd 14 m 1 hour a

Cruz and Remi on their first world book day, aged 6 weeks!

A mad lockdown tea party for the Ches hire cat, white rabbit and Alice in Wonderland – also known as Carson and Blair Lobban, 4, and big broth er Lennox, 6

Eight-month-old Florence, Elsie and Tillie

28

Emelia and Tilly Mae, 7, who were born at 29 weeks and survived TAPS (Twin Anaemia Polycythemia Sequence)

Multiple Multiple Matters Matters •• Summer Spring 2020

P H O T O G A L L E R Y:

Celebrations

ella, Imogen and Arab

Huey and Huxley on their 1st birthday cake smash!

y pard kind of da 2, having a leo r, ille M d an Franky

3, by the sea

Esmai-Grace and Pennie -Rose show off their cheeky personalities say ing ‘Cheeeeese!’

Carmen and Rafae l, 3, and sister So fía, 6, on a pre-lockdo wn football stadiu m tour with Papá an d his twin Javier

SEND US YOUR SNAPS

Jared and Jayrem, after representing their school at Dodgeball

twinstrust.org

We’d love to see pictures of your children as they mark special days or just get outside for some fun. All we need is your photos – but please take pictures on a high resolution setting so they are good enough quality for print.

Email photos (jpeg files are best) to multiplematters@hotmail.co.uk with ‘Photo Gallery’ in the subject line and 15 words, including the children’s names. Twins Trust has a policy of building individuality which is used to prioritise submissions (www.twinstrust.org/individuality).

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Expert Hand. Human Touch.

We’re proud to support Twins Trust

In times of change, our focus remains the same. If you need legal advice and support, we’re here, just like we’ve always been.

So you’re able to focus on what really matters.

30 irwinmitchell.com

Multiple Matters • Spring 2020

NOTICEBOARD :

Ads and more

Twins Trust

discounters Twins Trust has set up dozens of discounts exclusively for our members. Just visit the website at twinstrustmultiplesavings. org for details of discounts on holidays, clothing, equipment and more, and for the codes to claim your money off. And of course, if you know of any organisation wishing to offer discounts to our members, then please do ask them to contact luciewigley@twinstrust.org.

NEW DISCOUNTER The Milky Tee Company themilkyteecompany.com

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RENEWING DISCOUNTERS Bobux bobux.co.uk

Bobux firmly believes the world would be a better place if kids’ shoes were both healthy and awesome looking. Foot health, comfort and performance is paramount with all Bobux’s shoes. Get 25 percent discount online with a code.

Forest Holidays forestholidays.co.uk

Escape to a luxury self-catering woodland cabin with private hot tub with Forest Holidays and enjoy a 10 percent discount – the perfect getaway for families. The freedom, the fresh air and the forest are yours to enjoy at your own pace, whatever the season. And our pet-friendly cabins mean you can bring your dog too!

With 36 holiday parks around the UK coastline, featuring entertainment, leisure and sports facilities, including pools, golf course, activities, restaurants, musical shows and much more, Haven will help you relax and have a good time. You can save up to extra £50 on your next seaside break as a Twins Trust member!

Simply call 0333 202 5248 and quote the code, or visit www.haven. com/twinstrust.

Hummingbird by Victoria hummingbirdbyvictoria.com

Hummingbird by Victoria offers personalised apparel for multiples families. Whether it’s a personalised apron for Grandma, matching t-shirts, or a personalised hoodie for a triplet mum, we’ve got it covered.

We offer members 10 percent off their purchases.

Telephone: 01206 26 22 61

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REMEMBER TO TELL YOUR FAVOURITE SHOP TO JOIN OUR DISCOUNTER LIST! In Car Safety Centre

Smart Cells

incarsafetycentre.co.uk

smartcells.com/baby

In Car Safety Centre is the UK and Ireland’s leading children’s car seat specialists, with showrooms in Milton Keynes, Essex and Belfast. Twins Trust members get 5 percent off when purchasing two or more seats for twins or triplets. Use our expert fitting service at a centre, or call Milton Keynes on 01908 220909 to place an order for home delivery.

Smart Cells store stem cells from baby’s umbilical cord blood and tissue. Smart Cells will arrange to collect the sample at the time of birth and process and store the samples for your family should you need them in the future for treatment purposes. Visit our website or call 01895 424430 for discount details.

Little Footprint

The Roof Box Company

littlefootprint.co.uk

roofbox.co.uk

Our independent family-run, award-winning baby boutique offers cost-effective, beautiful and safe alternatives to products on the high street for mother and baby. Use the online code at checkout to receive a 20 percent discount.

A good quality roof box should last for years. For friendly and knowledgeable advice visit the UK’s specialist roof box and bike rack supplier. You’ll find a huge choice of products for all budgets – 10 percent discount for Twins Trust members.

Muddy Puddles muddypuddles.com

Our mission is to enable children and families to spend time outdoors whatever the weather by kitting out young adventurers aged 0–12 in waterproof jackets and suits, wellies and ski-wear. Twins Trust members can purchase Muddy Puddles products with a 20 percent discount

Browse our extensive list of discounts at www.twinstrustmultiplesavings.org twinstrust.org

/gladwinsfarm

www.gladwinsfarm.co.uk

DISCLAIMER: Multiple Matters is published by the Twins Trust, registered charity 1076478, registered company 3688825. Multiple Matters © Twins Trust 2010. ISSN 0967 – 8867. Twins Trust would like to point out that items in the magazine are collected from individuals and excerpts from newsletters etc. The views and suggestions are taken in good faith and the opinions expressed are not necessarily endorsed by Twins Trust. Likewise, advertising or the use of product names does not constitute a recommendation or endorsement by the charity.

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Now 20% off use code

TT204

It’s such an uncertain time right now and firstly we would like to send our very best wishes to you and your families and hope that you and your loved ones are keeping safe and well.

Routines may be a bit more relaxed right now and getting our allowance of fresh air plays an important part of our daily lives.

From experience we know that getting out of the house with multiples can be a very time consuming and frustrating business, so let us help keep all your journeys as safe and simple as possible.

Just pop your Morrck Baby Hoodie travel wraps in your car seats, pushchairs, prams or travel systems, strap babies in, wrap & go.

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Helping make your everyday easier www.morrck.com hello@morrck.com 01908 263925

Proudly made in the UK