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Disko Kids Meets | Nedintheclouds

Posted by Emily Smith on


When Ned was diagnosed with Autism when he was 2 years old, little did he - or his mum Claire - know that their story was going to become a legacy. Using their blog, Ned in the Clouds, and Instagram to share their story, Claire writes beautifully about their highs, lows and adventures together. they've not only created a place online to document their lives but they've gained thousands of supporters and raised a huge amount of awareness for Autism in the process.

We caught up with Claire for a chat about what their typical day might look like, the obstacles they've overcome with Ned's Autism and what music gets Claire, Ned and his brother Kit dancing!

Tell us a bit about you and your family - what's your background?

Kyle and I met about 12 years ago and have been married for 7. I was a studio photographer and he was - and still is - a web designer. Our firstborn, Ned, is now 5 and Kit is 2. We live in Wiltshire and have just bought a new house so we are looking forward to new adventures!

What inspired you to start up your blog Ned in the Clouds?

Ned was diagnosed with Autism when he was 2. We knew it was coming and I had spoken a bit about it on Instagram before the assessment. A couple of days after he was diagnosed I began to tell his story, partly to find others who might understand and partly because it was just what was happening in our lives at that time. I decided to transfer the posts to a blog and to tell our story in more depth there. I struggle with how much to share, what I should say, what I should hold back...I try to think about the future and what Ned might think of it all. I hope he will realise, if he is able to understand, that it has brought us infinite goodness, amazing people and messages and support. And that he, without knowing it, has helped others. I haven't posted for a while actually - I write when I can't not write and the need hasn't been quite so much actually. He is settled and happy in school and we are all learning more every day. The time it takes to dedicate to a blog properly is way more than I might have guessed! I am working on a new project hopefully to be launched in 2018. A new blog, less about us and more like a magazine. I want to tell other people's stories now.

Tell us a bit about AUT:CTION, where did it all start?

On a whim! I knew I wanted to raise money for the National Autistic Society and I wasn't planning on throwing myself out of an aeroplane anytime soon so I thought about what I do best, which is largely muck around on social media and tell important stories in a way that makes people want to read them. I was, and am, lucky enough to be friends with some amazing brand and store owners, artists and creatives. I asked them to give me things for free and they did, and they continue to do so every year - amazing people that they are. AUT:CTION was the first Instagram auction of it's type. I had nothing to go on, just had an idea and went with it. We have now raised £32,000 in total. People are so incredibly generous, it blows me away.

What does a typical day look like for you?

Sleepless night and early starts, such is the life of an autism parent. We are usually up by five and spend a few hours reading and playing and having breakfast. Ned is collected by the school bus - he attends a school for children with autism - and Kyle goes to work. Then it's just Kit and I. We go to an amazing Montessori art class and a nature group, we see family and hang out at home. I am enjoying this time with him before I lose him to school too! Ned finishes at 3 and is brought back home again. He needs some time to decompress from the day so we spend a couple of hours drawing and being calm...sort of. Dinner, and then bed. Our days aren't all that different to anyone else's really. Except I have to draw blueprints of Nationwide, TSB and Lloyds Bank all afternoon. Don't even ask.

What are the biggest obstacles you experience day-to-day with Ned's autism?

Ned has significant delays in his understanding of the world. He has limited communication and no sense of danger. Our day-to-day obstacles, I suppose, revolve around keeping him safe and teaching him ways to make his needs known. He can become distressed when things change around him and so we work very hard at keeping him prepared and making sure he knows what's coming next. We ensure he is only put in situations we know he can handle. We also fight for support, and for understanding.

What kind of music do you listen to? Have Ned and Kit inherited your music taste?

Totally depends on where I am and what I'm doing. I like classic rock and music from the 70s - Bowie, Elton John, CCR, Aerosmith and Pink Floyd. I also like reliving my youth with 90s bands (I loved Greenday more than anything) and I like modern folk and acoustic, too. Mostly though I have BBC 6 Music on. The kids definitely haven't inherited my music loves! Ned loves One Direction, Ed Sheeran and Little Mix, whatever is in the charts really. I'm hoping Kit will be more open to my suggestions!

Party out or party at home - Discuss!

Gosh, home. Unless it was for a gig, you wouldn't catch me out-out anymore. Gimme take aways and pals and music at home.

Anything exciting to share?

As I said, I'm working on a new project. It's on hold at the moment though because we've just bought a new house and will be moving later in the year. Once we're all settled, I shall take up the mantel again. I think AUT:CTION will be back next year, although I have toyed with the idea of taking a year off Glastonbury-style to keep it fresh, I don't want anyone to get bored. We'll see. I'm pretty sure I said that last year!

You can keep up with Claire, Ned and the family at the following links:

Blog // Instagram