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“It’s a lonely, lonely, lonely place without people,” said Kayleigh Burridge as she made a cup of tea in the kitchen of St David’s Community Centre in Rhymney.

After she finished stirring, Kayleigh put the teaspoon in the sink, handed the cuppa to a fellow parent and looked over at the hall which was filled with toys of all different shapes, sizes and colours and continued: “But as long as you do find your little support network then you’ll be fine.”

And that’s what Kayleigh, along with her friend Keighley McDuff, is trying to do by starting Teddy’s ALN Support Group – create a welcoming space for additional learning needs families.

Teddy’s is a place where parents and guardians can receive information from professionals, and talk to other parents in a similar position while children with additional learning needs can play with sensory toys, walk about with ear defenders on or simply be.

Kayleigh set the group up in this way because of her own experiences. Her son Theo has autism and was the inspiration – and the namesake – of the support group. “My two older children haven’t got autism and when Theo was diagnosed we didn’t know what to do,” said Kayleigh.

But now, years later Kayleigh knows what it’s like to find the right help, where to find it and how isolating it can be without it – and she wants to make a difference to those who follow her. “It is hard and it is not an easy journey,” she said.

Jeni Spinks, from Blackwood, was one of the parents who attended the session and said: “I struggle meeting new people, going to new groups and stuff…I think a lot of parents do.”

She added: “We worry about judgements,” adding that children with additional learning needs may do things that are difficult for many people to understand, like her son Clarkson, who has autism and complex needs.

“My son has no boundaries, he likes to get in your face to say hello,” said Jeni, “and then as a parent, you’re seeing that he’s being rejected a lot by a lot of kids.”

That’s not the case at Teddy’s. “It’s nice seeing the kids relax,” said Jeni.

“It’s an awesome support group because, unlike some other support groups, it’s not just purely events,” she added. “In this room, you’ve got professionals from different organisations – so parents can be signposted.”

Along with a statutory officer, one of the professionals on hand to help was Sadie Morgan from Caerphilly County Borough Council’s Early Years Support Team.

Sadie described the group as “absolutely lovely” and said: “If they want advice we’re here just to kind of help and guide them through it.” This could be on a “vast majority” of things from behavioural advice, sleep, and toileting.

“In Caerphilly they have parent groups set up already like Sparrows,” continued Sadie, “there’s nothing really up here so it is very isolated.”

Groups such as Valley Daffodils and Sparrows are Additional Needs community groups that hold events like soft play, swimming and archery.

Yet there is still a larger need. According to StatsWales there were 315 children of primary school age with Autistic Spectrum Disorder in Caerphilly – the largest number in all local authorities except for Swansea where there are 535 children.

Lisa George, a family liaison officer who works for Anerin Bevan University Health Board but works closely with Sparkle, was also at the support group.

Lisa said: “My role is more or less anything a parent needs support with, I can be that point of contact.” Currently, there are four family liaison officers who work across Gwent, three of whom are directly employed by Sparkle.

“It doesn’t matter to the service if a family contact us once or every day for 18 years,” Lisa continued, “It’s purely led by what the parents and the families need.”

She added that help could come in the form of providing information, signposting people or giving advice. It’s also about simply being there during what can be a challenging time.

“It’s just that reassurance sometimes,” said Lisa, “to be that shoulder just to listen and just to say you’re doing marvellous, you’re doing fantastic.”

Lisa works closely with Sparkle, which runs leisure activities for children with additional learning needs around Caerphilly by providing leisure activities. Many of these activities are often held at Caerphilly Children’s Centre – which can sometimes be difficult for families in places like Rhymney to access.

“[In] most of north Gwent – not just north Caerphilly,” said Lisa, “there does seem to be less.”

Teddy’s goes some way in filling that gap with invaluable peer support. “All the children are at different levels of going through the process of the assessment,” said Lisa, referring to the individual development plan (IDP), “but they’re all in that same boat.”

This means that people here get the same camaraderie as most families do at the school gate. “No one in this building is judging any child’s behaviours, meltdowns, stimming, anything like that,” said Lisa, “they all get it.”

But more still needs to be done, according to Jeni. “We’re trying to get the awareness out there but we’re also trying to get the acceptance out there as well,” said Jeni, who is part of an online community of parents of children with additional learning needs.

“At the moment you go into a soft play and you say my child’s autistic,” said Jeni, “but you’re always on the automatic ‘I‘m sorry, if he…’”

She continued: “You come to their defence and it shouldn’t be like that.”

These are children who have historically been labelled “bad kids” but this isn’t the case, Jeni said: “They’re just misunderstood.”

Matters are complicated by a lack of opportunities that cater specifically for ALN children as Jeni said: “We’re always out trying to look for events that we can take our child to but you do find that a lot of the ALN events are too noisy and too boisterous…because too many people book on.”

Teddy’s, however, caps numbers to ensure attendees can be as comfortable as possible. Jeni continued: “We need more play events,” something that would no doubt help to cater for the 3,220 disabled children (up to 19-years-old) in Caerphilly County Borough, according to the 2021 Census data.

Jeni added that amendments to Caerphilly County Borough Council’s play assessment and approach to diverse needs are also necessary.

“It covers ethnicity, covers rural areas, but you look in there for disabled needs – there’s hardly anything,” she said.

That’s why getting behind groups like Teddy’s is important. Jeni continued: “Hopefully they get more of the community involved in it.”

Teddy’s, which received some funding from Caerphilly County Borough Council to cover the sensory equipment and the hall hire for a short period of time, ran two sessions throughout the summer.

Unfortunately, Kayleigh has had a fair amount of no-shows which threatens the future of the group.

Despite this, they have already had a positive impact as Kayleigh has seen people “come together”.

“I think that if it carries on going, which I hope it does, you’ll build relationships with people that will probably last forever,” Kayleigh said.

She added: “Unless you’re living it you don’t know what it’s like.”

This article was updated on November 23 to reflect the fact that the statistics included children on the autism spectrum who were of primary school age.