I became isolated

I became isolated

Val's daughter Tiana is 11 and has Down’s Syndrome. Val gave up her business in fashion design when Tiana was born so she could care for her. She has had involvement with Carers Gloucestershire for over eight years.

All your energy, all your time, it goes into caring. You get tunnel vision. You lose yourself completely. You don’t know what’s outside in the real world anymore.

Val's story

Val's story

My caring responsibilities started in 2007 when I gave birth to my daughter – Tiana. Tiana is my third child, she is a gift – I had no intention of having any more children when she came along. There’s 26 years between Tiana and my other children.

She was an emergency c-section born at 33 weeks. She was four pounds and looked so tiny in the incubator. We were in the hospital for about a month, so she underwent a lot of tests.

During that process, they dropped the bombshell and told me she had Down’s syndrome. I just burst out into tears. It was just such a shock. 

All I could hear was the doctor running through a list of these awful problems she would have…. the list went on and on... I couldn’t take in this long list of disabilities, I needed time to get over the shock of the diagnosis.

Reality sets in

I felt very isolated when I left the hospital with my baby. I got back home, unpacked, and then I just thought… now what? I’m on my own. That was when the isolation sets in. Where do I go? Who do I talk to? How do I know if this is behaviour is normal?

I gave up the opportunity of going back to work after I’d had Tiana. I wanted to put all my energies into her, and supporting her development, so she could have the best possible opportunities in the future.

People say, ‘are you ok?’ and you grit your teeth and you say, ‘yes’ because you convince yourself you’re fine – but you’re not.  I lost myself for a little while, but I’m strong and I will always be a survivor.

Suddenly, my world changed. It’s like revolving doors. You go in one door and you come out another. I was now in a new world where my child was labelled by society as ‘special needs’ and I had become her ‘carer’. I had this terrible image of what life would be like for both of us.

Speaking out for parents

When people described me as a ‘carer’ I just thought ‘what are you talking about, I’m her mum – I’m just looking after my child. But then when you look at the bigger picture, and you meet other people from Carers Gloucestershire, you realise you do fit in.

I wanted to be a voice for some of the carers who can’t speak out. Some parents are isolated at home, they can’t leave their children. I was on the parent carers committee for a long time, raising awareness about what it’s like to care for a child with special needs. I’ve put on three fashion shows to raise money and awareness for Carers Gloucestershire.

All carers have different lives and responsibilities, but we are a big family and we understand each other.

Support from Carers Gloucestershire

Carers Gloucestershire has been there for me since Tiana was two years old. They helped me get her into the right nursery. Now they’re helping me get her into the right school. Tiana has a delay in her academic abilities. She just need a bit more time, a bit more support.

There’s a lady called Britt who works with SENDIASS who has given me lots of information about Tiana’s legal rights to a decent education. She has accompanied me to meetings with the school. She knows which questions to ask to get the useful information. Having someone there to fight your corner makes all the difference. She is a blessing!

Carers Gloucestershire is a hub of knowledge. You can go in and chat, or talk on the phone, and be confident that you’re speaking to someone who realty gets it. They have so much information. You don’t know what Carers Gloucestershire has to offer until you need it. You can go in with one problem and come out with three solutions to make your life easier.

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The kindness and support that I’ve received from Carers Gloucestershire has been amazing. Who’s fighting our corner? Carers Gloucestershire!

Like to help us support more carers like Val? Please visit our fundraising pages for ideas. 

Or if you are a carer who would like support, please visit our support pages.