Reaching Out Autumn 2022

This edition’s highlights include

CEO introduction

A white man with dark hair wears a suit and smiles at the camera

Dear Sense supporter,

As you will no doubt be aware, the arrival of autumn brings with it rising bills like never before. Many parents of children with complex disabilities are full-time carers.

The cost of living crisis is hitting them the hardest and they are really struggling. A lack of long-term government support means the only place they can turn to for help is to Sense and you.

Your support has been, and will continue to be, crucial in helping families to weather the storm. If you are in a position where you feel able to give a gift – whatever the amount – I would be so grateful. Your gift can ensure Sense is there for them and for more children like Hugo, Logan, Mylo and Annalise – especially during this particularly dark autumn and winter.

Richard

Hugo will need your support every step of the way

“Since he was 18 months-old, Sense has been an important part of Hugo’s life. From one-to-one sessions with Support Workers, to help preparing for school, to Family Days – Sense and you are there for each new challenge.”

Hugo’s mum, Claire

Hugo was born with CHARGE syndrome, which has caused deafness, visual impairment, a heart condition and respiratory problems. Yet CHARGE syndrome does not define Hugo, and this happy, cheeky little boy gets so much joy out of life and brings so much joy to his family.

Mum, Claire, explains how different it was when Hugo was a baby, “there was a time where I had no support and effectively no hope. I used to worry, ‘will life always be this hard’. I was very isolated”.

Hugo with his mum sitting in a restaurant

Then Claire got in touch with Sense, and – thanks to kind people like you – Hugo and his family have had our support ever since. Most importantly, they know we’ll always be there.

Having help in his early, formative years through one-to-one sessions with Sense Support Workers, has been crucial to Hugo’s development. Sense was also there to guide Claire through the process of finding the right school. “Sense’s support is pivotal in managing day-to-day life”, says Claire.

“We look forward to Sense Family Days. My other four children in particular love them because they meet their peers or other children who have a disabled sibling. And so many of the friends I’ve made I’ve met on Family Days.”

When it came to the lockdowns, outside support for Hugo stopped overnight, which is why Claire is supporting Sense’s Covid Inquiry Campaign. It’s vital to ensure disabled people have their voices heard. Throughout this hard time, Sense’s support never stopped though. And with your kindness, we can continue to be there for children like Hugo no matter what.

£15 could go towards the cost of a Sense Family Day – where the whole family is included and there are activities for everyone to enjoy.

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You’re helping Annalise connect with the world around her…

Annalise sitting in her chair at a table wearing a hat

Ten-year-old Annalise loves lying on her resonance board and feeling sound vibrations. With your help, Sense can continue to introduce her to new and exciting sensory experiences.

When ‘Reaching Out’ last featured Annalise in 2019, Sense was helping mum, Jennifer, with ideas and resources for home-schooling activities.

Annalise can’t attend school as her immune system is severely compromised. It’s just one of the ways in which CHARGE syndrome, a rare genetic disorder, affects Annalise. The condition also means she is deaf, has visual impairment, and heart and lung problems. For Jennifer, Sense’s expertise and knowledge of CHARGE syndrome is a source of constant support, always just a telephone call away.

With your help, Sense has introduced Annalise to so many new sensory activities which she can enjoy at home! Annalise attends weekly virtual Sense groups, including the Little Dragons pre-school group and a resonance board session, as well as a virtual forestry school. Annalise loves discovering the feel of autumnal forest textures, like crispy leaves, twigs or silky feathers!

“I’d never heard of CHARGE before I had Annalise. The help that Sense offers, you couldn’t put a price on it really. They have tons of advice and are always there to ease any concerns I have. Since the pandemic, Annalise can now take part in so many virtual groups too, so we feel even more connected to Sense.”

Jennifer, Annalise’s mum

Logan relies on Sense and you

Logan sitting in a chair wearing a home made hat

Eight-year-old Logan has been supported by Sense since he was just eight months old. With your help, we can continue to be there for him every step of the way.

You may remember reading about Logan in previous issues of Reaching Out? Logan was born with cerebral palsy and has no hearing and limited vision. Sense has been a constant source of support and fun in his life.

Logan spends three days a week at Sense’s Woodside Centre, making use of the sensory rooms, getting involved in his favourite messy play and craft activities, as well as attending the Twiglets group run by Danielle (see below).

Your support is helping Logan express his likes and dislikes, make choices and learn through play. “At Sense, I can trust that Logan will be safe, understood and have lots of fun”, says mum Philippa. “Knowing that Sense will always be there for him is everything, so please thank your supporters from the bottom of my heart”.

£35 from you could cover the cost per child of running a face-to-face Twiglets group session at a Sense centre, where children like Logan can experience music and messy play.

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A teddy bear with a sense t-shirt on sits behind a pack that reads 'Sense Sign School' and has cartoons on it

Teddy Sense is learning too, at Sense’s Sign School!

Will you join Teddy Sense as one of the latest students to enrol at Sense’s Sign School? You too will receive a set of cards every month, teaching you different signs in British Sign Language. You’ll be learning a new way to communicate. And with your £10 gift each month, you’ll be helping more children who are deafblind find ways to communicate and learn too, thanks to support from Sense.

Find out more about Sense Sign School

Meet the team – Danielle, a Support Worker here at Sense

What’s the best part of your job?

The best part by far is working with children like Logan; getting to know their personalities. Watching their enjoyment and progress makes everything worthwhile! I love the fact that I can have an impact on children and their families. The most challenging part is wanting to help everyone straight away, knowing how many people need the support.

What is it like to have familiar faces back at our Sense Woodside Centre?

Every Friday, I run Twiglets, a preschool group, there. It’s lovely to watch the children socialise and feel so confident here. It’s nice for parents to be together too, especially after the lockdowns.

How important is it to families that you still run virtual activities too?

The virtual groups mean that children who can’t attend for a medical reason or live far away can still join in the fun. It has also connected lots of parents who otherwise wouldn’t meet because they live in different parts of the country. They have made friends virtually and are a source of support to each other.

Supporters’ Corner

Your very special Sense passports

Thank you to everyone who took the time to send a message to Sense Holiday first-timers and their families.

Mylo had a brilliant Sense Holiday this year, thanks to you

Together, kind Sense supporters like you raised a total of £212,826 for this year’s Holiday Appeal, so that children like Mylo could have a very special holiday.

A boy in a football top sits on grass with his dummy in

Mylo has a congenital condition, Cytomegalovirus, which causes loss of hearing and vision among other disabilities. Getting out and about for a day is a real challenge for his family with all of Mylo’s needs to consider.

On his Sense Holiday at Macaroni Wood in the Cotswolds, everything could be tailored to Mylo. He loved feeding the pigs, collecting eggs from the hens, and joining in with messy play and crafts. But most of all, Mylo couldn’t get enough of the disco hot tub – the warm water, flashing lights and the beats from the music all made for a brilliant sensory experience.

“Mylo became more confident with each day of the holiday. He felt safe to try new things and soak in all the sensory delights the holiday had to offer.”

Scott Woods, Mylo’s Sense Holiday Leader.
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