Amos’ story: “He’s a great tonic!”

Meet five year old Amos!

If Amos isn’t at school or watching his favourite TV programmes (Mr Tumble and Hey Duggee) he’s reading a book or enjoying being outside. He’s also known for cheering people up – people often say seeing Amos is a great tonic, with his happy and caring attitude to family and friends!

Amos’ mum said: “Amos has global development delay in one sense, apart from making people feel amazing, no delay there! He is medication to the soul.”

For Down Syndrome Awareness Day (21 March) Amos’ mum Bess is sharing their experience with the condition, their healthcare support and advice for parents, carers and healthcare professionals.

Bess, who volunteers for the Sheffield Down Syndrome Support Group, looks back five years ago when Amos was born: “Amos was born at Jessops in Sheffield. We didn’t know he had Down Syndrome until he was born, and it’s been such a blessing. What other typical child would be checked up this often! We were looked after really well and talked through the genetic make-up and felt like we could ask any questions.”

Amos is supported by lots of services across Sheffield Children’s such as speech and language, physiotherapy, occupational therapy and the vision support team – all rated ‘top notch’ by Bess and Amos.

Bess said: “Julia and Rachel in physio and occupational therapy have been completely on it and very encouraging. If Amos hasn’t managed the thing you’re working on you don’t feel like you’ve failed. The focus isn’t that children ‘can’t’ do something, it’s that they ‘can’t yet’. It’s an amazing mind-set of having no limit and aspiring to things, which is amazing.

“When you’re talking to a parent with a child with additional needs, we need to use language which is aspiring and encouraging for families rather than ‘this is it, this is how it’s going to be.’

“Particularly with children with Down Syndrome, always assume competence, always assume there are great things to come.”

Amos has had other visits to Sheffield Children’s for other conditions too. Bess explains:

“For the first ten months we enjoyed him growing up like any other baby. That’s an important thing for people to remember as a parent with a child with a lifelong condition. So often you can’t help but look to the future but we just need to enjoy them in the ‘now’. At ten months we needed help from the vision support team as Amos had a shake of the eye (Nystagmus); they have been fantastic.

“Amos also started to have infantile spasms around ten months old and I asked my GP for a referral to the Ryegate Centre to look into it. The neurology department at Ryegate were brilliant and within 24 hours, after tests, he was diagnosed with West Syndrome and given medication. The neurology team at Ryegate and in the Stephenson Wing were so amazing and so patient with us. Even though Amos couldn’t talk, they were so understanding and knew how to look after him. Although getting the right treatment was time sensitive, they gave us all the time and space to get it right. They understood that you can’t ask children to do something straight away!

“The way they looked after us really showed the value of caring and empathetic language with an understanding of how to communicate with children like Amos. I knew I could always contact someone and check something, and they checked in with me. They were so attentive so us as a family, it was wonderful. You know it’s a good service when you’re sad to be discharged!

“Amos also had to get an MRI to help with his diagnosis and there are so many amazing people there from the porters to the anaesthetist. When I left Amos with the team at the MRI the porter walked me back and he was so reassuring. He said: ‘you feel like you’ve left something behind, don’t you? He’s in safe hands – go and get yourself a cup of tea.’ Just acknowledging my feelings was so important at that time, it really shows how language and connection is so valuable.”

More recently in 2019 Amos visited the Emergency Department and stayed on one of the wards with a skin infection. Amos had erysipelas, (an infection caused by bacteria getting into the superficial layer of your skin) which was caught just before it affected his major organs.

Bess said: “Even though getting the diagnosis and having to stay in hospital for 12 days was stressful, particularly as Amos had surgery, the staff were great. The nurses were brilliant and often fought over who did rounds as they wanted to speak to him all the time! The porters, nurses, doctors, support workers were all lovely and the catering staff would sometimes even deliver his breakfast so they could say hello. That helped me a lot as I didn’t have to leave him to get his food.

“Everyone really engaged Amos in his care, explaining things and asking to take his temperature, it was fantastic. Just because he doesn’t talk back or engage with you each time doesn’t mean it’s not valuable to acknowledge him – it is his healthcare after all. I think that it’s really important to remember to talk to people even if they may not have the communication skills.”

Throughout their healthcare journey, Amos and Bess have seen lots of good practice supporting them.

Bess said: “One of the really important things we’ve experienced is when someone relates their language to the patient and family. Ask yourself, ‘what would I want to hear?’ and explain things in full e.g. why medication needs to be taken as a full course and explain the long term benefits, and so on.

“Parents are emotionally involved but if healthcare professionals found themselves in the same situation out of their depth, they would want reassurance and lots of information explaining it too. We’ve experienced some lovely healthcare professionals who deal with it with grace and space for listening, it makes such a difference.

“I’d also say draw diagrams! Amos is a visual learner and so am I, so when people have drawn us diagrams and explain it visually – rather than just talking it through – it really helps.”

Bess, her husband, Tom, and their nine-year-old daughter, Ælfwynn, have enjoyed the inclusive and holistic approach to Amos’ care.

Bess said: “It is lovely when children with special educational needs are treated like other children. However, it’s important we treat them equally too as humans who are able to do things. Don’t put them on a pedestal in comparison to other siblings. Being aware of the children and being aware to include them is fantastic, as you would other children, but don’t go too far the other way.

“We’ve had some lovely experiences with Amos’ sister while Amos has received care too. When Amos had to stay in hospital over Christmas they were great with Ælfwynn, and acknowledged that him being in hospital affected her too. They even offered her extra ice cream or jelly and made her feel involved.

“No one wants children to be afraid of hospital, so it’s great that Amos’ sister saw it was a positive place to be.”

What Amos is up to now:

“Amos is having a great time at school and is learning to communicate verbally. Being home with us during the pandemic has actually helped as he’s had direct teaching from us! His cognitive understanding is incredible.”

We asked Bess what other advice she would give to healthcare professionals

“Sometimes children can get left behind if they can’t communicate. From a professional perspective, our kids may have delayed development, but it doesn’t mean they don’t deserve being acknowledged. The more interaction they receive (visual learning, signing, etc) the better! If they don’t see things or aren’t included, they don’t have as many opportunities to learn. If they’re not involved then it isn’t holistic healthcare.

Bess is part of the Sheffield Down Syndrome Support Group and is happy for anyone to get in touch for advice about caring for children with Down Syndrome – there are lots of families with years of experience.

Bess also recommends this website, https://www.languagecreatesreality.com/ which is a series of cards exploring the importance of language when talking about Down Syndrome. She also recommends https://positiveaboutdownsyndrome.co.uk/ for resources and up-to-date information for families and professionals.

Thank you from Bess

“We love the NHS and love Sheffield Children’s. Thank you for everything!

“We did a facebook fundraiser for The Children’s Hospital Charity after our 12 day stay in 2019 to say thank you, a lot of our friends and family contributed, it was the least we could do to show our appreciation.”

Thank you for sharing your story Amos and Bess!