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About three years ago, when we were living in America, I noticed that my daughter Lavinia was struggling with her speech. Luckily, there was a huge amount of help and support available for her so she started having treatment. It only was when we moved back to the UK, that I realised the terrible lack of help and provisions there are here for situations like ours.
There really wasn’t much support and I felt completely at a loss about what to do or where to go. I really didn’t know where to turn to find help for her.
Even though I was luckily in the fortunate position where I had the finances to see the best doctors, I was still at a loss emotionally and this made me very concerned about the other families who are struggling to get through every day with little, or no, help at all.
Whilst going to different therapies in America, I met many families going through similar struggles and I found that having these social groups really makes a difference because it means you’re able to share experiences and help each other.
As a parent going through something like this, it’s imperative to be able to speak to other people who understand.
It just makes all the difference to hear about other people’s experiences and not feel so alone in a terrible situation.
I found being back in London felt really isolating, which is why I’m so pleased to be able to offer Petra’s Place, not only as somewhere to come for early diagnosis and for therapies, but also to provide a community for people who understand each other.
I started to put plans in place about two years ago and I knew there was going to be a demand but I’ve been overwhelmed by the sheer amount of families reaching out to us. I’m so pleased we’re going to be able to make such a difference to their lives with everything we’re offering at Petra’s Place.
The demand and need for help has only reinforced my aim to bring Petra’s Place to the whole of the UK following our London opening.
In a nutshell, Petra’s Place will bring the support and infrastructure that children with autism and other co-occuring conditions really need that just isn’t there right now.
As well as access to specialists, we offer occupational therapy, speech therapy, social group classes, cookery classes to help children get used to new foods as well as a selection of different workshops and talks from experts on subjects like sleeping issues.
The centre will also, very importantly be somewhere parents can come for an early diagnosis.
I’m particularly passionate about this because research has proved that this is critical to the child’s development.
Early detection is so important because the brain is so much more malleable in the first seven years. That’s when they pick up behaviors so not having any therapies in the first few years means you’re losing time and potency.
It’s crazy the UK doesn’t have more provisions for this but the NHS is so stretched I understand there’s only so much they can do.
As well as offering these services all under one roof, my aim is to help raise awareness of autism in general. It’s come a long way in recent years but more than that, I like Petra’s Place to focus on the child’s strengths rather than their weaknesses and maximize what they’re really capable of.
It’s so upsetting to hear about how other families in the UK are suffering. When I speak to them I just can’t understand how they’re dealing with all of this without help on a day-to-day basis.
They say there’s no other option, they just have to keep going. As a mum you just do whatever you can.
It was awful when Lavinia was having struggles because everyone wants their child to be normal. The child doesn’t understand at that moment just how much they’re suffering but when they get older it will be harder. You just want them to blend in and have friends and so you think, ‘Why my child? Why do they have to go through that?’ You have to remind yourself there are other kids out there who are going through so much more, so you have to be grateful for what you do have.
I hope Petra’s Place will be somewhere parents can bring their children without feeling judged and instead embrace their child’s brilliance and feel excited for their future. We are all different and we should all support each other.
Petra Ecclestone is a Philanthropist and mother of three. She is founder and Director of the Petra Eccleston Foundation, providing services and support for young children with suspected or diagnosed autism and their families.