I’ve been away from blogging for the past few months. Family life has been difficult with the added strain of caring for a child with a disability. Some times it all gets too much, and something has to give. In my case it was blogging. I pulled down the shutters, locked myself away from the world, whilst trying to make sense of it.
The good news is…I’m back! I’ve hit the ground running, with a new positive view on life.
My family has been lucky enough to have been asked to work with Scope Charity. We are face of their 2018 Christmas Campaign. Scope came round to film us during summer. As it was a Christmas Campaign, the house needed to look Christmasy. We decorated it in tinsel and we had to wear Christmas jumpers.
My husband Dan and I have been talking about what it’s was like for us when our unborn child was diagnosed with a disability just before she was born. About the lack of support given to us at the beginning, and peoples reactions.
Point of Diagnosis
More needs to be done to support families in those early days of a diagnosis. Support must be available at the hospital, the first point of contact. Charities like Scope could work with the hospitals to provide people that early support.
Sales reps are allowed to come into maternity wards, offering new parents baby products and offers to sign up for. I would rather have been given useful information about Charities that I could turn to for instance.
When Emily was diagnosed, 4 days before she was born, we just didn’t know where to turn. It was a Friday afternoon, and we were left until Monday to find out the true extent of her disability. The doctors explained the complications in a very clinical way. The doctors broke the news in front of students training at the hospital, this felt undignified.
The whole 9 months of my pregnancy had been taken up with antenatal classes. During these classes, we never discussed that there was a high probability of some mums giving birth to a child with a disability. Too much priority was spent on our birth plans, and items to include in our hospital bags. None of these things were of any use to me in the end.
Doctors focused on the medical side, and making sure that our baby was born safely, but there wasn’t any emotional support for us. No one to say ‘It’s OK, it’s just going to be different. We will support you.’
Scope invited me to their Charity Fundraiser. I was interviewed by the amazing Clare Balding .
Clare asked me about the early days of having our daughter 12 years ago, and how important Scope was at supporting families like mine.
Specials guests also included Lee Ridley aka Lost Voice Guy, Lee won this years Britain’s Got Talent. Also my friend, actress and disability campaigner Sam Renke.
It was an amazing night. We all raised a lot of money for Scope.
The cute child at the beginning of this film is my daughter, Emily.
Minister For Disabled Children
We are also working with Scope to campaign for the government to appoint a Minister for Disabled Children. If we had a Minister, our families would find it so much easier to access help and support.
Call on Theresa May to appoint a Minister for Disabled Children and Families – Sign Scopes Petition Here