“Knowing you’re not alone is so important”

31 January 2020
Sharon and her son Myles.
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Myles is 20 years old; he has autism and was diagnosed with juvenile idiopathic arthritis (JIA) at 12. Despite the challenges along the way, he’s now building a career in baking.  

Here Sharon and Myles talk openly about the difficulties they’ve faced and the importance of getting support when you need it.

“Myles was 12 when he finally got the arthritis diagnosis, he’d been having symptoms from when he was 4-5 years old”

I noticed his joints were swollen when he was 4-5 years old. As Myles has autism, it can be hard to gauge what he is feeling. Even if he was in a lot of pain, he didn’t show it and didn’t complain.

I found it was very hard to get the medical professionals to understand there might be more going on.

In July 2011, Myles was rushed into hospital with hip pain and we thought it was broken. Initially, the rheumatologist pushed back and said the symptoms could be psychosomatic, as it was a year after the death of his dad.

In the November we were told that Myles has a rare form of arthritis. Myles was 12 when he finally got the arthritis diagnosis, he’d been having symptoms from when he was 4-5 years old.

For Myles, his autism is like a superpower, these things would crush a ‘normal’ person. Autism allows him to cope with life in a way that we might not.

“To find out more about JIA and potential treatments, I researched like I was studying for a PHD”

To find out more about JIA and potential treatments, I researched like I was studying for a PhD. I went into every meeting with information I found on the internet. 

I had to battle with NICE to get Myles on biologic drugs as there was limited funding. I managed to persuade them, but it didn’t feel victory. I just kept asking why did I have to do this.

I retrained as a sports therapist as I needed to do a job with flexibility as I’m a single mum and need to be available to support Myles.

“I always knew Myles would find his own path in life”

When he was at college it was hard to find someone to employ him with his combination of arthritis and autism.

I always knew Myles would find his own path in life. With support from Autism Bedfordshire, his college and Versus Arthritis we found a voluntary work placement in an ice-cream parlour. Unfortunately, he had to leave after a short time, as he has a tremor in his hands and too many coffees and teas were split.

Baking started at a young age and my granddad liked baking cakes.

Myles

I contacted The Prince's Trust as I wanted to help Myles start his baking business. They’ve been amazing and set up bespoke access and mentor support for him.

Getting his baking stall established at a regular market in Leighton Buzzard has been the biggest win for Myles.

“My advice to other parents would be - never assume you’re being told everything there is to know.”

My advice to other parents would be - never assume you’re being told everything there is to know. Go out and do research about education options and the NHS.

There’s lots of resources available – from Versus Arthritis to JIA parent groups and Facebook. Knowing you’re not alone is so important.

My advice would be work on your own business and choose something you are passionate about.

Myles

“Whether your child is 12 or 30, it’s important not to isolate yourself, get involved and talk about your journey”

Having support networks are vital, it can be a lonely journey being a parent of a child with additional needs. Whether your child is 12 or 30, it’s important not to isolate yourself, get involved and talk about your journey. 

No-one else understands what it’s like as parent with a child with arthritis, other than other parents with a child with arthritis.

I want to see more mentoring where young people with JIA are working together with younger children with the condition.  This will help improve understanding and show you can build a life for yourself with arthritis.

Contact your local Young People and Families Service

Young people can self-refer to the service or be referred by a carer or professional with their agreement.

You can find out more about what’s going on in your area or contact your local Young People and Family service.

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