A MUM has allowed television cameras access to her and her son's life, in the hope of shedding light on the reality of everyday life for families with children with additional needs.
Leian Roberts, from Penrhyndeudraeth, has a nine-year-old son, Twm Elis Jones, who is non-verbal and autistic.
Their story will be shared on a special edition of S4C show Y Byd ar Bedwar, offering an insight into Leian’s life.
Speaking to Siôn Jenkins, main presenter of the Welsh language current affairs programme Y Byd ar Bedwar, Leian said, "Having a child with additional needs wasn’t something I ever expected to happen.”
Leian, 46, is a qualified nurse and Twm's father is a paramedic.
However, when Twm was six years old, Leian had to give up her full-time work in order to take care of her son.
"People ask, 'What's challenging?' Life as a whole is challenging."
The mother of two asked the production team to capture every aspect of her reality, including the most challenging moments she experiences whilst caring for Twm.
“He has his moments and you just feel so helpless, because I don’t know what’s wrong with him.”
“People say, ‘You wouldn’t change him, though’. But I would. I would change this situation. Who would want to live like this? Who would want to see their child having a meltdown before going to school? I would change the situation completely.”
“I feel really guilty saying that. I love Twm to the moon and back, and I would do anything for him. I’m fighting to get the best for him. “
“No one chooses to have a child like Twm or to face the level of additional, complex needs he has. This is not an easy life, and most people have no real understanding of what it entails.”
According to Welsh Government statistics, autism spectrum disorder (ASD) affects around 1 in every 100 people.
Dr Rebecca Williams is a Consultant Clinical Psychologist with over 25 years’ experience working with autistic children and adults across the NHS and in private practice, specialising in autism and ADHD assessments.
She says more respite care should be available to support parents like Leian.
Respite care provides short-term breaks for primary caregivers of autistic children, allowing them time to rest, work, attend appointments or spend time with family, while also supporting their mental health.
“It’s an opportunity for parents perhaps to get to the GP, to work additional hours, to spend additional time with the rest of the family, and it’s preventative for their own mental health as well, because families are under a lot of strain," she said.
"They’re having to fight continuously for access to services, so respite gives them a breathing space that helps to just keep them going. Respite keeps families together.”
She said services often want to provide respite but are unable to meet demand.
“I’m aware of families where they’ve requested certain amounts of respite, the services want to give them that respite because they can see it’s necessary and needed, but there just isn’t enough places, staff, or money available," said Dr Williams.
She also warned that while respite care requires investment, failing to fund early support can lead to higher long-term costs.
Dr Williams added: “If we don’t invest in early intervention and good enough support, we incur costs long-term down the line, so good support will prevent mental health difficulties, behavioural difficulties, and families not being able to cope anymore.”
Leian is eligible for 10 hours of support per week from a carer, while Twm is also able to attend the Hafan y Sêr respite centre in Penrhyndeudraeth once every fortnight.
The centre provides short-term care for children aged 8 to 18 with additional needs across Gwynedd and Anglesey.
“I don’t think it’s enough at all.”
“In an ideal world, I'd like to see him going there once a week, because I feel like I need that respite for my mental health. And it is to have a rest because you don’t stop - it’s relentless.”
Speaking of the local authority, Leian said they don’t understand the pressures families with additional learning needs face.
“They’re not aware of the situation. They need to listen to us. When parents say there’s a problem, they need to listen.”
“There’s no price tag on giving care to somebody like Twm, and they need to look at where they’re investing and where they’re lacking, and clearly the care for children with additional needs is lacking.”
A spokesperson for Gwynedd Council said: "Helping children and young people to have the best possible opportunities and to live their full lives in their communities is vitally important to us.
"The needs of each child and their families are unique and our care workers give all their energy to try to ensure that we provide the best possible support to meet the needs of children at all times.
"Despite the significant investment in services in places like Gwynedd, Councils across the country continue to fail to meet the demand in this extremely important area.
"We cannot comment on individual children but we have seen an increase in demand year after year for support for Autistic children or those with another neurodevelopmental condition and the needs of these young people are increasingly complex and profound.
"Across schools in Gwynedd there are more than 200 children with a formal diagnosis of Autism and more than 1,000 children with neurodevelopmental or interaction difficulties.
"Alongside this increase in demand, the shortage of carers and social workers is a major challenge across rural Wales, including here in Gwynedd.
"Despite the challenges, the welfare of disabled people and children and their families is most important.
"We appreciate how important temporary support is for families and sympathize with parents who need more help. Gwynedd Council offers a range of opportunities for families of children with conditions, including short breaks in specialist accommodation and there are plans underway to develop more homes for children across the county.
"Gwynedd Council's investment in social services for children with needs has more than doubled over the past five years and we will increase the budget again in 2026/27."
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