‘You are not alone’: new group helps SEND families with military ties

In September, a group set up in Windsor to help families of special needs children with an armed forces parent. Adrian Williams spoke to the COO to find out more.

“What I want to say to families is, you are not alone. If you’re struggling, reach out for help.”

That is the key message from Kirsty Northam, chief operating officer of NeuroDiverse Community Windsor – part of a CIC helping special needs families, including forces families.

Special Educational Needs and Disabilities (SEND) children face many challenges, as do the children of people in active service within the armed forces.

Put those two things together, and the challenges are greatly compounded.

Recognising this, Lesley Collier, an army spouse and SEND mum, started up NeuroDiverse Community CIC – a support hub for such families – in Yorkshire in 2019.

There was ‘absolutely no support whatsoever’ for army families of SEND children there, said Kirsty – but since then, NeuroDiverse Community CIC has helped hundreds of families.

This inspired Kirsty to set up a local branch, NeuroDiverse Community Windsor, in September, also supporting people from Maidenhead, Slough and surrounds.

“We have so many families here who also don’t have support,” she said.

As an army spouse herself with a SEND child, Kirsty knows the challenges first-hand.

“When you marry into the armed forces, you have to accept that you are going to be a solo parent during times of deployment,” she said.

“That is hard enough but when you add the SEND element to it, it becomes like stupidly harder. My partner has been away for six months already and now he’s gone for another six months.

“I have to do all the [SEND-related] appointments on my own, and you’ve got to keep the house running – [the spouse is] the one who’s got to be there at 24/7. It can be really stressful.”

Then there is the sheer amount of self-education and advocacy for one’s child involved.

Kirsty says she spend ‘hundreds of pounds and countless hours’ doing many different courses, trying to understand neurodivergence, education and the law.

“It’s really confusing and difficult – it’s such an overload of information,” she said. “And it’s information that isn’t always accessible to people.

“It’s been a really big eye-opener and a big learning journey. The most important thing I take from it is how isolating it is. I really don’t want other families to go through that.

“If you can find your tribe, it’ll make your life a whole lot easier.”

There are practical difficulties specific to families of SEND children with a parent in the armed forces as well.

“A lot of families start on that assessment route and then they’re deployed to a different area, and they have to start all over again,” she said.

Technically, there is a legal covenant duty requiring public bodies to have ‘due regard’ to armed forces covenant principles, including removing disadvantage arising from service life.

But in reality, children are often starting all the way from the beginning again when they move ‘which is just not fair.’

Children then miss on out an Education, Health and Care Plan (EHCP), Kirsty added, which outlines a SEND child’s educational, health, and social care needs for education providers.

To help, NeuroDiverse Community Windsor has community caseworkers doing home visits, offering tailored support and advice and offering guidance on EHCP applications and reviews.

The caseworkers also help with queries over disability-related benefits, and work with professionals to ensure families get the right support.

As for which families can come to NeuroDiverse Community Windsor, the group ‘covers pretty much everything’ whether it’s physical disabilities or neurodivergence

That could be autism, ADHD, dyslexia, dyspraxia, speech and language processing or sensory processing issues. This is regardless of any official diagnosis.

“Even if you just think there might be something there, you’re still welcome,” said Kirsty.

“We know what the process is like. We know what it’s like to doubt yourself, to have people who don’t believe you or gaslight you.

“You are not alone. If you’re struggling, reach out for help.”

At the moment, NeuroDiverse Community Windsor does not have a physical base, but once it does, it plans to put on some ‘exciting’ social sessions for children and adults.

One of them is planned for kids aged 10 and older, and another for aged 10 and younger.

It would be a space for SEND kids to play with their friends or chill out, allowing parents some respite between the end of school and home time.

There will also be some learning involved – how to regulate emotions in times of stress, and what tools are available to do this.

Adult sessions will feature learning life skills and how to live independently – things like cooking and basic household repairs. Other sessions will also work to improve mental health and build confidence.

“As soon as we get our space, we’ll be hitting the ground running,” said Kirsty.

As well as drop-ins, the group also offers online support groups for those who want to join in remotely, perhaps due to social anxiety.

Its inbox is also ‘always open’ for any domestic abuse situations if someone needs to talk or ask for help.

At the moment, everything is funded primarily through the main Yorkshire branch, which has a grant from the National Lottery. But the Windsor side would like to have their own funding.

As such, it is always looking for funding, sponsors, or any donations. Anyone interested should contact info@neurodiverse-community.co.uk

NeuroDiverse Community Windsor has also put on some Christmas events, including ‘quiet and chilled’ Christmas party that 14 children attended with their families this month.

It featured a blackout tent, sensory lights, relaxing crafts, communication cards and boards, and a ‘peanut’ therapy ball, which went down a storm.

“The children had so much fun,” said Kirsty.

“One of the moms was saying she never thought her child would be able to go to a party like that because they get really overwhelmed and socially anxious. For them, it was lovely.”

To find out more about NeuroDiverse Community, visit neurodiverse-community.co.uk

Email any questions to info@neurodiverse-community.co.uk