Why The World Needs More Groups Like Mine

Back in the Spring when I graduated as a Barnardo’s volunteer, I met a wonderful woman: locality manager Jean Hedley. I like to talk to people and find out about them, establishing connections, if you will.

That’s when I accosted her with my idea. I actually kind of blurted, as I often do, and told her she “had a massive gap in her services”. She asked what I meant. And I’ll explain to you what I explained to her.

Back in 2014 when Jack first started showing signs of additional needs, I tried to join a group with the children’s centre which was for Autism Spectrum Disorder parents, because I suspected that Jack had ASD. I was allowed to attend once, before being told I wasn’t welcome back, because my Portage worker had called them and told them that “This child will never be diagnosed with autism”. Ouch.

And so I went a few years with minimal support. I had nobody really, until my son started Reception and I met another mother who introduced me to Autism Northumberland, and by then I had enough evidence to say we were pointing towards an Autism Spectrum Disorder diagnosis now or in the future.

But you see, there are a fair selection of services for children with autism, and even ADHD. What our locality lacked, was a group that brought people together with children who have a range of issues. Mental health, physical disability, neurodisability and high medical needs are rarely lumped together, and yet we all have something in common.

We are people who are going above and beyond the norm to parent our children. Disabled children need more care than their peers, and so we as parents have to step up and become a different kind of parent. It’s a life none of us chose, and yet none of us can escape. Heck, most of us can’t even pee alone. Normal when your kid is 3. Less normal when your kid is 15!

I also proposed that a group to support parents prior to diagnosis was necessary. Getting a diagnosis for a child is often the hard part, followed closely by getting the EHCP sorted. Parents often have to fight the system and fight hard to get what their children need. The fight doesn’t end when the child turns 18 either – it just keeps going. However, the parents who have fought this fight for themselves are an excellent resource for the parents who are just starting to go through the process, and getting them all in one room could be very beneficial for everyone involved.

Jean told me to email the centre manager with my idea and, if it was viable, we would do it.

And we did. I wanted monthly sessions, and it was approved for fortnightly sessions. At the moment, the sessions are just general banter and setting the world to rights, but I have some amazing ideas for future sessions and I can’t wait to see how they go. I even got asked to go on Koast Radio to discuss my group and the general misconceptions around the children’s centres, which was a massive success and I am incredibly proud of how it went down.

There aren’t enough groups like mine. Groups should embrace everyone going above and beyond for their child’s additional needs. Not just autism. Not just cerebral palsy. And don’t even get me started on the lack of services supporting parents of children with mental health problems! The sad fact is, many children with disability in any capacity, suffer from mental health struggles, whether that’s anxiety or depression. My group offers a safe space for all the parents fighting for their kids behind the scenes.

I have a lot of ideas for projects I would like to work on with my group, and I hope that they are able to give me the inspiration and ideas to move the projects forward. I want to be a part of the positive changes in my locality, and within the children’s centre, I feel like I can do anything I set my mind to. Working with Barnardos and Northumberland County Council at the Surestart Centre is empowering – I am made to feel like I can truly take on the world.

I am Stephanie, and I am a proud Barnardos Volunteer.

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