Cost of living spotlight 2023 - Nikki's story

Looking at the financial crunch effects on our rare and disabled communities.

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We are all aware of the financial situation that we find ourselves in today. Rising food costs, interest rate hikes, climbing utility bills, and high gas and electric prices are a constant worry. Many of us are tightening our purse strings, cutting back on nonessential costs. The future is completely unknown. Some news articles talk about levelling off for some prices, but others exacerbate our worries about increasing costs for certain things, uncertainty is all that is known at this moment in time.

Imagine having all these worries on top of dealing with a rare disease or a disability. The extra costs of running essential life-saving equipment, increased fuel prices and parking, or taxi and public transport costs to get to and from vital hospital appointments. The extra costs for certain indispensable diets or fundamental health needs. These are just some of the hidden costs that many people are totally unaware of, or at best barely give a second though to. It is only when you have to try to find the extra funds needed, or live with the condition or disability that it becomes all too apparent!

We are investigating how our communities are being impacted by the financial crunch today and what we as a community, organisations and charities can do to alleviate some of the burdens on our society.

Over the past few months, we have spent time talking with individuals trying to balance their lives, needs, health and financial responsibilities during this financial squeeze on society. Many have spoken about the fear of what’s next, if things continue to increase where does that leave them? How can they streamline an already overstretched budget to cover essential costs? How can mental health not be affected when every day brings worry or difficult choices to make?

Nicola Lewis is a carer for her two daughters, Alana and Ella, 16 years old and 5 years old respectively. They both have foetal valproate syndrome. “It’s caused, unfortunately, by a medication that I take for epilepsy, nobody told me about it at the time of my pregnancies or prior to them. It has caused multiple complicated difficulties, for the girls. They’re affected in different ways. It’s a developmental condition more than anything, at each developmental stage you will see new things coming to life. It’s a learning curve, basically we’re learning as we go along.”

Nikki describes living with the girls like being on a roller coaster, as their behaviours can change instantly. “You get up in the morning and you just don’t know what to expect. The children can be literally Jekyll and Hyde, so one minute they’re happy, the next minute they can fly off the handle, they’re angels and demons. The hardest part about it is they don’t understand. They have understanding difficulties. Trying to get across to them what you mean is very, very hard. On top of this, the girls have a lot of coping mechanisms. They’re able to hide a lot of things. We’ve got to deal with the children in a specific way, but then we’ve got to deal with the outside world to help our children. We’re dealing with both daily.”

This leads to difficulties getting the right support in place and is a constant battle for the family. It has been this way since Alana was born. “We have been called liars and overprotective parents. We’ve been discharged from departments because they say there is nothing wrong with the girls. We have fought for everything, especially for the eldest for her education.”

Having to fight for support and understanding from professionals only exacerbates the family’s worry and stress during the cost of living crisis. The family are feeling the squeeze with the crisis, especially with small regular increases. On top of the cost of food, clothing is a huge expense for the family. Continual growth spurts cause the need for new clothes, including the often costly school uniform. Shoes are another big expense for both girls as they have to be fitted. “The eldest has been diagnosed with hypermobility and the youngest has got mobility issues, she’s constantly falling over, so she needs extra support around the shoes. They’ve both got awkward feet we can’t just go and buy them from cheaper places unfortunately it’s mainly Clarks.” The costs all add up and are a huge expense for the family.

“The eldest has got a condition that is affecting her body odour, we found that a lot of children who have this condition suffer from body odour. The sweat gets into her clothing, and we’re washing her clothes constantly, we even scrub it with washing liquid.

On average we wash the clothes three times over to get the body odour out of it. It’s wear and tear on the washing machine, the electricity and the washing gel, we can’t use a bog standard gel, it’s got to be a specific brand. Both girls have pica1 and it can be a health risk and dangerous if we can’t provide safe sensory things.” It’s little things like this that add up and help strain the finances during this crisis.

“I’ve got to pay for fuel for my car, plus there’s the wear and tear on the car. It’s been in and out of the garage because it’s not a new car so it’s getting to that stage now. We’ve got to pay for the extracurricular activities that we need as they were advised by physiotherapists due to the hypermobility, to encourage strength and tone within the muscles and the joints. Without that, we will be back in a wheelchair with the eldest. We use a lot of gas to keep the heating going in the house because the house that we’ve been provided with suffers from mould. Some parts of it have been treated already, but unfortunately, it’s coming back. If we’ve got washing hanging around in the house, then obviously we’ve got all the moisture, so we’ve got the heating constantly on. We’ve got a tumble dryer that we have to use because we’ve got so much washing going through, that is a huge cost to the already rocketing electricity bills. The list just goes on and on and on.”

All of these costs that add up for the family mean sacrifices in other areas but how can you cut something that is needed and not just an extravagance?

“It’s stress, stress and strain, we question every choice now, can we do this, can we not? We have to cut back. It’s horrible for everybody, I’m not saying we’re more important. However, the needs of the disabled, and especially someone with a rare disease, are extremely important, you have no choice, there is no option to cut back. Things have got to be done. You have got hospital appointments to get to it’s not just a case of getting back into school. It’s not just a case of going and visiting relatives and having days out. We do need to have days out, we need to get the girls out of the house. The behaviour is just absolutely monumental if they are cooped up. It’s just frustration.”

Nikki finds the lack of support hard, harder still is knowing where to go for help or advice. Just who to reach out to? “No one gives you advice now, you have to try and find out things but who do you turn to? Even some of the support organisations, they don’t know where you can go. It’s a case of you going out and trying to find something. But when you get mentally and physically drained you can’t. It’s so hard to do. You’re already fighting to keep your family going. You’re fighting to keep your children going. You then must find the time and find that mental energy to go out and dig somewhere else, but where? You don’t even know where to start?

We just need support from somewhere. And I don’t know why it’s so hard.”

Being signposted to help would be a huge relief to Nikki and her family, who are already struggling to deal with the day-to-day lives of the girls and their conditions. At present Nikki finds some support from peer groups but it hasn’t always been there in the past, “It’s so important, it really, really is to have help. If you’ve got a support network, you feel like you’re not alone. You’re not the only one that’s going through this and you’re not imagining things. Without the support it’s horrendous. You go down mentally, you know, you go down physically, your health is interlinked. If you can’t deal with things, if you can’t look after yourself, how do you look after your children?” Despite the peer support groups, the family need more help and support starting with clear advice.

1 Pica is a feeding disorder in which someone eats non-food substances that |have no nutritional value, such as paper, soap, paint, chalk, or ice.

Our cost of living project is supported by:

What is

art therapy?

Art therapy began in the fields of art and psychotherapy and only became recognised as a profession in the mid20th century. It was a British artist called Adrian Hill who is credited with creating the term ‘art therapy’ when he himself was recovering from an illness and he discovered the therapeutic benefits of drawing and painting to support his mental health.

There are three main ways that art therapy is employed, and current art therapy includes a number of theoretical approaches. Sam’s website explains that “art therapy is a mental health profession that utilises art materials to express and communicate feelings in a safe and confidential space. The focus is on the process of creation, rather than the outcome. There are many ways to utilise creativity to express emotions that are sometimes difficult to acknowledge or verbalise. Engaging in creative expression aids in development of selfregulation, encouraging insight and awareness. Art therapy helps create meaning, develop new perspectives, and build resilience.”

Samantha Hickman grew up in the Middle East, her father was a pilot and the family were mostly based in Saudi Arabia until she was fourteen, after which they moved to Hong Kong. Growing up she didn’t have access to a TV and of course the days of constant connectedness were not yet a reality and so Sam turned to creativity,

After taking an art A-Level she did a one year art foundation course, followed by a degree in fine art. In some ways however, this didn’t fulfil her creativity in the way that she might have hoped. “At university you had to specialise, and actually I like working with lots of different materials. I work with natural materials, I like to do watercolours in my creative journal, I love paper collage but it is textiles that are my thing, my go to. I specialised in photography but it wasn’t so much that I wanted to be a photographer, it was the process in the dark room, of creating that story.”

Sam also found that the grading around art felt counterintuitive to her, that the process of marking art actually excluded what it should, at it’s very heart, be about. It was also hard to imagine a future in art. At the time she felt that the focus was that you either became a renowned artist like Tracy Emin, Damien Hirst or Rachel Whitehead, or you became a teacher, fortunately there are many more professional creative pathways today. Although Sam hadn’t wanted to teach when she reflects back now she finds it interesting that whilst she did not become a teacher in her role as an art therapist she is a facilitator, and central to teaching is facilitating meaningful learning and discovery. “I was always investigating human emotion, and how the process of creativity supported lived experience. So, if I look back now it’s so obvious.”

After graduating Sam embarked on a career in advertising, and was living and working in London when she met her husband, who like Sam had grown up in Hong Kong. They eventually decided to move home to Hong Kong in order to start their family, welcoming first a daughter and then, after a difficult pregnancy, a son they called Matthew into the world. “Life changed really, from the moment we had Matthew.” Although he met all his physical milestones something felt different to Sam, but she reassured herself that it was because he was a boy and so therefore different from his sister. “He never slept, he literally never slept. It was utter trauma, I can’t explain the sleep deprivation and what that did to us as a family. I think we were just so sleep deprived that we just couldn’t see the wood for the trees.”

A visit to the doctor when Matthew was around fifteen months old changed everything once again when the doctor asked Sam if Matthew had any words yet. He didn’t. They were offered an assessment with an occupational therapist (OT), who in turn referred them to a clinical psychologist who conducted a full assessment when Matthew was around eighteen months old. By the time he celebrated his second birthday he had received a diagnosis of severe autism and went on to subsequently receive a profound learning disability diagnosis also.

When it was time for Matthew to start kindergarten he went to the setting his sister had been to, and because they already had a strong relationship with the school, they felt they had a good support system in place for him from the beginning. He struggled however, and Sam used to sit in the car and wait, never knowing if he’d be there for twenty minutes or for the whole morning.

“He quickly became much too disruptive for the other children, because if I look back now he was so developmentally delayed it was like putting a baby into a toddler group. It was chaos. So hence when I dropped him at school I would sit and stitch in the car. This is where my (own) creative journey started again.”

During this time Sam set up a small independent creative business called Matt & Milly making beautiful decorative name labels for children, in large part because it was something she could do whilst sitting in her car waiting for Matthew. Sam dreamt of one day being able to make bespoke embroidered curtains and other items for interiors for children,

Embroidering the labels, gave her a small space that she could control. “I would do everything with a very tight backstitch. For a backstitch you make one stitch forward and then one stitch back, and then forward again and then back again, so it was almost like not getting anywhere but actually I was making slow progress as I went along. It took me years to stop doing the backstitch because it was also a form of control and perfection. Looking at it now as I do as a therapist, I was looking for that sort of perfection and control, but also I was so stuck in that time. So stuck in fear, and stuck being just overwhelmed, and so, so tired, just so tired.”

Unexpectedly their lives were once again changed when Matthrew didn’t get a place at a special school in Hong Kong. “They said there wasn’t a space for him but I think they already knew that his learning difficulties and behaviour were too complex for them to be able to really support him and to meet his needs. We found a school in Singapore that accepted him, it was an amazing school and so we moved our whole family there, almost overnight.”

The four years they spent in Singapore were happy ones, a time where they were each able to grow and thrive in their own way. Sam returned to University to do a Masters of Arts in Art

Therapy at Lasalle College of the Arts. The course ‘is a practice-based, intensive training programme that emphasises experiential learning through art making, reflection and research.’ As part of the course students had to undertake their own therapeutic journeys, and for Sam “the course unpacked a lot of stuff that I was unconsciously holding and I wasn’t expecting that. I thought I was ‘fine’. Of course with art therapy it is all about unpacking the unconscious.”

After graduating she was delighted to be offered a permanent role at the Singapore Cancer Society where she had completed her clinical placement. After a year with them she was heartbroken to have to leave, as once again Matthew’s needs saw their family move, this time to the UK. They had, Sam clarifies, known that they would very likely need to move to the UK eventually in order to give Matthew the support he needs. They chose Bath as it was a city they both knew, and were full of hope when he was offered a place in a fantastic small school offering the education and support they felt he needed. “As Matthew was getting older his behavioural needs were getting unmanageable. He needed a continuous, very set routine supported by sensory based learning.”

Devastatingly for the family within just a few months the global pandemic struck and Matthew’s school was closed almost overnight, leaving him unable to attend for six months.

“In that time, the wheels totally fell off because we’d lost everything. We’d already left our home and all our family and friends, and then we’d left this beautiful place (Singapore) where we’d actually got things quite set up and were quite settled, to then come back here only to become full time carers with no help. Matthew didn’t understand why he couldn’t go out, but we couldn’t take him out anywhere, not only because the parks were closed but because we were meant to be socially distancing and he just didn’t understand it at all.”

Now three years on the family are still processing the effects of the lockdowns. For Sam her creative art practice has once again offered a space in which she can try to work through her conflicting feelings about the decisions they felt forced to make for both their children, and for their family as a whole.

Although it isn’t always easy Sam has chosen to be open about their situation, and about the struggles they and she have faced over the years. Because she strongly believes that in sharing our truths and our realities, we can help one come to a place of understanding and acceptance, even of the lives we did not expect to lead. “Matthew changed our life. I grieve the life that we don’t have and sometimes I am insanely jealous of people who seem to have all these amazing holidays, or just get to go to the pub with their kids on a Sunday and meet up with other families. All that sort of stuff that I just can’t do, but I can’t get over what Matthew has given me, which is a real appreciation of what is important in life. It’s so profound what he’s done for me.”

One of the reasons Sam had wanted to become an art therapist was to work with SEND parents (parents of children and young people with special educational needs and disability) as she has had first-hand experience of how little support they typically receive to look after their own wellbeing. Because for her “art has really helped me to cope when things were overwhelming, and to process it all.” She is determined to try to offer others that same opportunity to experience the healing power of creativity.

Now that the family are all able to return to their own daily routines Sam is in a place where she can offer that support. She explains that there were some unexpected positives that arose from the adaptations we all had to make during the lockdowns, most notably the near global shift in the way many of us now feel truly able to work and connect in an online space. Accordingly she is now able to run group sessions online in a way that might previously have been unimaginable.

Sam clarifies this further by explaining that for parents with huge caring responsibilities, especially this new online connectivity, has helped to make so many more opportunities accessible to them. “It just widens their connections, you would think it would disconnect, but actually, it’s been amazing because it’s simply not always possible to travel to a conference or meet in person.”

Through her art therapy practice Sam creates a safe space in which people can work through the difficulties they are experiencing though a carefully guided process of self-reflection. “Everything is about the process and as an art therapist I’m always considering what materials I’m using, or what creative prompts I’m giving.” She continues to explain that it is the very process of creating that opens up the space to reflect on and examine our challenges, because it’s the creativity that really taps into what you need to know. “Whilst I can’t change someone’s situation hopefully, the creativity can give them the insights and awareness to see that the answers are within themselves”

Art has been the continued thread that has been woven through the very fabric of Sam’s life, and the stitches that she sews are often a literal interpretation of her emotional journey; “I use all sorts of stitches now, and my stitches are much more free.” Her art, and the process of creating and being creative has brought, and still brings meaning, joy and possibility into her life. “I think the biggest thing for me is that my journey as a special educational needs parent and as an autism parent has been a grieving process. My art has supported that grieving process. It has metamorphosized into a new career because I know that the creative process of making art, of connecting with nature, can connect you back to yourself. It has given me a profound sense of purpose and an understanding and acceptance of our situation and the turn that my life took. It has given me confidence, strength and empathy.”

Now that life has once again settled into a period of stability and growth she is able to work both as an artist, sharing and showcasing her work, and working as a socially engaged artist with community groups and within her private practice. To find out more about the workshops and groups Sam will be offering from September 2023 you can visit her website

About Sam

Samantha Hickman is a qualified Art Psychotherapist, gaining her degree from LASALLE College of the Arts, Singapore. She also holds a BA (Hons) degree in Fine Art from University of Plymouth, UK. She is a member of the British Association of Art Therapists (BAAT) and is HCPC registered. Sam completed her clinical placement with the Singapore Cancer Society and went on to employment with the organisation before relocating to the city of Bath, UK, in 2019 where she has since worked in socially engaged community and private practice, see her website for details of upcoming courses and workshops.

About the artwork

1. Support Net (2016) | Mixed Media sculpture

I created this artwork to remind me of who/what supported me/Matt. Each component represents the people, places, pets, and organisations that were integral at that time and have become a lasting memory and reminder that these things change over time so it doesn’t always look the same as it did.

2. Overwhelm (2023) | Collage

This artwork reflects the myriad of emotions that I felt when Matt was first diagnosed. Judgement, rage, grief were ever present and I felt overwhelmed by life in general at that time. I made this artwork recently and so it shows what I needed at that time but only really know now, and that was a space to stop and create to be able to think/work. Finding the quote felt like serendipity.

3. Inner Compass (2021) | Mixed Media Textiles

This artwork relates to Art Therapy and that becoming an Art Therapist have given me my True North in life, providing me with direction, purpose, and meaning.

4. It’s A Wonder Morning! (2021) | Mixed Media Textiles

This artwork was created to celebrate a new phrase that Matt could say, which was his version of “It is a wonderful morning”. In Chinese astrology, he is a Tiger and he loves music and nature. The tape measure ribbon at the sides represent my love of textiles/ embroidery as my coping mechanism but also reflect our ages, his on the left and mine on the right (I was 37 when he was born). Multi-coloured metallic thread beam out around him as he really is a ray of sunshine.