How do you solve a problem like James? – #100days100stories

This is a guest blog from Holly Gaunt, 31, mum to James. He was diagnosed with autistic spectrum disorder at four-years-old. Now five, James attends a special school near their home in Portishead, Bristol.

In 2014, Holly began a blog about life as a parent of a child with autism. We’re sharing her story as part of our 100 days, 100 stories campaign

Since having children, I have become an expert in speed-shopping. In fact, unless I’m desperate, I try to avoid it altogether.

But today was an emergency: we had run out of milk and, more importantly, chocolate. I had no choice but to run the gauntlet, so to speak, keeping everything crossed that James would co-operate.

Unfortunately, about 10 feet Young boy sitting on a log on the grassinside Waitrose, James decided he’d had enough of holding my hand.

Before I could stop him, he had bolted around a corner and out of sight.

After trailing the aisles for several minutes in a panic, I eventually located him in the packed café.

I summoned my strength and managed to hoist him up over my shoulder whilst he screamed and smacked me in the face. For a four-year-old, he packs a surprisingly hard punch. I forced myself to grit my teeth and ignore his violent protest – experience having taught me that reacting would only egg him on.

At the checkout, I had to abandon my shopping several times to chase him as he tore off down the aisles, responding with a tight smile to the commentary of the checkout lady: “He’s a livewire, isn’t he?” I could feel about a hundred pairs of eyes on me and I knew exactly what they were all thinking.

And therein lies the ‘problem’ with James.  People don’t realise that he has autism, because he looks ‘normal’- so he is judged by normal standards. To other people, James is just naughty and needs a firm hand, which clearly I’m not giving him.

People with autism struggle to cope with sensory stimulation.Mum on the beach with baby and young son

For James, the supermarket isan overwhelming myriad of bright lights, colours, and noises forming a general din that makes him anxious and hyper. And because social norms mean very little to him, tearing through a crowded supermarket and throwing himself in the path of oncoming trolleys is not something he perceives as a problem.

James also lacks the necessary awareness of danger to prevent him from running off without a backward glance when something captures his interest. He isn’t being belligerent or ‘testing the boundaries’- that requires at least a very basic understanding of other people and their expectations.

Like our shopping trip, trips to playgroups, soft play centres, children’s parties, simple experiences that most parents take for granted are decidedly difficult for us. The common theme? Well, it’s other people. The staring. The whispered comments.  I could grow a thicker skin but that’s easier said than done.

The truth is that all of us, myself included, have at some point or another been guilty of judging a situation without knowing the facts. I hope that, by explaining autism from a parent’s perspective, I am helping to raise awareness of this misunderstood condition. Have you read this and learned something new? If you have, then I am one step closer to achieving that.

There’s lots of information on Scope’s website on autism and about being a parent of a disabled child.

Get involved in our 100 days, 100 stories campaign and read our stories so far.

“Without Ian I don’t know what we would have done” – #100days100stories

When Kelly was told that her two-year-old son, Lincoln, had cerebral palsy, she turned straight to the Scope helpline to find out more. That’s how she met Scope Response worker Ian, who was on hand to answer her questions. Kelly has shared her story as part of Scope’s 100 days, 100 stories project

Kelly holding up her toddler Lincoln
Kelly and Lincoln hugging

My husband Adam and I were told that our two-year-old son Lincoln had cerebral palsy in July 2014. Things suddenly made sense as we’d been worried about Lincoln for some time.

Knowing something wasn’t right

Since he was about one I’d been telling health professionals that he wasn’t sitting up or crawling like I thought he should be. I’d worked with children, mainly those about two-years-old, in a nursery for 10 years before I had Lincoln, so I knew what other children his age were like.

It was about this time that I contacted my doctor about it. She told me that it wasn’t anything to worry about and that he might just be a bit of a lazy boy! Apparently lots of boys that age can be a bit slower to develop.

My doctor told me to give him a month or so and then go back if I was still concerned. After the month there were lots more doctors’ appointments and health visitors. People just kept telling me that he was a lazy boy and that I should stop worrying.

Waiting for a diagnosisKelly playing with Lincoln on the floor

It wasn’t until he was two that a pediatrician actually told us that Lincoln had cerebral palsy. It wasn’t as much of a shock as it could have been to be honest.

I’ve got a friend whose son, who must be in his thirties now, has got cerebral palsy too.

I had been talking to my friend on Facetime one night telling her about Lincoln and she said it sounded a lot like what she had experienced when her son was growing up.

When the doctor gave us the diagnosis he said that we didn’t actually seem that shocked! We’d already had some time to think about it and let it sink in, so I suppose we weren’t too surprised in the end.

Information overload

Although we weren’t surprised, we didn’t actually know that much about cerebral palsy back then. Once we got the diagnosis we turned to the internet to answer some of our questions.

As a lot of people probably find, there’s just so much out there and a lot of it is rubbish and confusing. Thankfully our GP suggested we get in touch with Scope, as they could provide us with some information.

Ian gave us hope

I sent an email and Ian from Scope’s Response team got in touch with us. The first time he came and visited made such a difference. He was just brilliant. We just bombarded him with questions!

Ian was great at not overloading us with information, but he told us what we could read and what websites to visit in our own time. He actually told us that he didn’t want to just hand us a load of information, because we couldn’t take it all in at once.

Seeing Ian, who has quite severe cerebral palsy himself, really gave us hope. He drives a car, he gets out and about a lot, he works, and I thought that if he can do it, then Lincoln will be able to do it too.

Ian really was our biggest help. Without him I honestly don’t know what we would have done. Ian knows exactly where we’re coming from because he’s had to deal with it all himself. I think that helps, when you know somebody’s been through it themselves.

Accepting Lincoln’s impairment

Me and my husband have now come to terms with the fact that, yes Lincoln’s got cerebral palsy and yes it’s going to affect him for the rest of his life.

But it doesn’t make him a different child to the one he was before we got the diagnosis. He’s just Lincoln, at the end of the day. That’s just the way he is, that’s just him, that’s part of who he is.

See Ian at work behind the scenes of Scope Response.

If you need support or information, call the Scope helpline on 0808 800 3333.

Get involved in our 100 days, 100 stories campaign and read our stories so far