Tag Archives: Scope Response

Now we know Leo’s going to be fine – #100days100stories

Leo is a happy three-year-old who loves to give hugs and kisses. He has cerebral palsy which affects his co-ordin​ation and movement. Leo’s mum Lyn has shared her experiences as part of Scope’s 100 days, 100 stories campaign.

Lyn helps three-year-old Leo with his homework
Lyn helps three-year-old Leo with his homework

It was a difficult birth and they took Leo off to do tests straight away. He had a chest infection and he wasn’t breathing right.

Leo had to stay in hospital until Christmas Eve, and we didn’t even go out to get presents that year.

Something wasn’t right

Over the next year, we noticed he wasn’t doing things that other children did. Then, when Leo was two, he had an MRI scan. When they told me it was cerebral palsy, I couldn’t take it in. I was really, really shocked. I blamed myself.

At first I didn’t want to let Leo out of my sight, worrying constantly that he was in pain. I knew so little about cerebral palsy. I needed help but I didn’t know where to turn. Thankfully, our paediatrician told us about Scope.

We needed practical support and advice

One of Scope’s support workers, Ian, came to see us and that’s when things really began to change for our family.

Ian drives a car. He has a great job. And he has cerebral palsy. I needed to see that Leo would be able to do all those things too. Ian gave us lots of practical support and advice about things. We could ask him anything and he’d tell us the truth, never skirting around the issue.

We’re optimistic for the future

Lyn and husband Kevin holding Leo and a baby
Lyn and her husband Kevin with Leo and their baby Lucien

These days Leo is so full of life, outgoing and gregarious. His confidence and sense of adventure are growing all the time.

When I think back to that first Christmas with Leo, I’m amazed at how things have changed. We don’t know what Leo’s future is going to be. But we’re so much more optimistic now. We know he’s going to be fine. If we hadn’t had support from Scope, we’d still be wondering.

Lyn and Leo’s Scope response worker Ian has also shared his story as part of our 100 days, 100 stories campaign. Read the rest of our stories so far and find out how you can get involved

“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