Louise’s story

The journey of a carer is not one people would always choose, but for Louise it’s one she wouldn’t change, beginning when her youngest son, Levi, was diagnosed with autism spectrum disorder and attention deficit hyperactivity disorder (ADHD) when he was only 7.

‘It's made me a stronger person, a more resilient person. But at the same time I've experienced really bad anxiety, because I’m constantly worrying about someone else – even more than I would normally. It can be exhausting.’

How did you start to be a carer?

Levi wasn't diagnosed with autism until he was 7 so I suppose officially that's when I became a carer, as well as being his mother. It's hard to differentiate at first between the roles of mum, or wife, or whatever you are, and that you're now a carer as well.

What is happening now?

Levi requires a lot of extra support. He’s not as independent as my other 2 children and needs support with things like dressing and day to day activities. I’m often called to the school, and I’m trying to balance that with working, and being a single mother of 3.

It’s been a huge learning curve for me over the past few years. Once I understood why he was struggling with things, it all sort of fell into place. It all made sense. Whereas before that it was quite difficult not knowing what he was dealing with.

And I'm certainly very passionate about it now. We've seen our GP, psychologists, occupational therapists and paediatricians. So I've learned a lot through that.

‘It’s been a huge learning curve for me over the past few years. Once I understood why he was struggling with things, it all sort of fell into place.’

What is the hardest part about being a carer?

Definitely balancing paid work and care. I’m very fortunate in my current situation. I have a very understanding and empathetic manager who supports me as a carer as well as an employee, which hasn’t always been the case. Oftentimes I am required to leave at the drop of a hat if he's not coping. Balancing being there for him (and obviously the other children) while still maintaining a career has been really difficult.

You can become extremely stressed, and some time ago I crashed and burned because I wasn’t getting the support that I needed at the time.

‘I’m very fortunate in my current situation. I have a very understanding and empathetic manager who supports me as a carer as well as an employee, which hasn’t always been the case.’

What is the best thing about being a carer?

I enjoy everything, other than seeing him struggle sometimes. But in terms of my role, I enjoy seeing him moving forward and just making his way in the world. It is great as a mother and knowing that I'm contributing to his successes as a carer is very rewarding.

And I certainly wouldn't change anything about him. He's a delightful, funny, smart, interesting human. He teaches me something new every day. We have a very honest relationship, he knows all about autism and disabilities and we don't shy away from the facts.

What have you found that helps you?

Having friends who I talk with regularly, who also have children with different needs, mostly on the autism spectrum. We talk, we compare journeys and debrief. The peer support side of things is vital. Because it can be quite socially isolating, and to have like-minded people to talk to and to share ideas and feelings with is really important.

I’m lucky too that my Mum is absolutely brilliant. She's like a second parent to my kids.

I've learned just to really reach out to friends and family, and to support services.

…it can be quite socially isolating, and to have like-minded people to talk to and to share ideas and feelings with is really important.’

What would you like to tell other carers?

That there are challenges, but there are carer support services out there to help. Reach out to others and find out what is available to you. Because you don't have to be alone. There are people that are passionate about carers and want to help. That would be my advice, to seek out that support and to make the most of it. Don't be afraid.

The Carer Gateway is a comprehensive tool that will let people navigate what is essentially a bit of a maze of a system. Being able to search for and link in with services in your area is important.