First of all, I’d like to say….
I hope you have (or have had) a really nice day, wherever you are in the world
(This is my first attempt at ‘art work’ for my blog)
I want to tell you about THE most amazing place Hannah and I have attended since 2011. I probably won’t do the charity full justice by what I’m going to write because I can’t fully articulate how it’s changed our lives for the better. But it absolutely deserves a mention on my blog, so I’ll give it a try…
Some years ago I came across (another long story, so I’ll spare you all the details!) a very small, quite unique organisation called Rainbow House in the North West of England that offered support for children with disabilities. That’s where I met Jo.
Jo has two boys who were diagnosed with a very rare degenerative genetic disorder, resulting in brain damage and disability. Her passion and drive led her to found an innovative service that provided an intervention called Conductive Education (or CE for short) and I was absolutely blown away by her enthusiasm and commitment.
I never imagined that (a) several years later I’d have a daughter and (b) I’d be in desperate need of Rainbow House services given the NHS offers no regular therapeutic (early) intervention…the kind of therapy that Hannah so desperately needed right then (and now).
Hannah couldn’t even sit up independently on our first visit there. She was almost two and I was pretty desperate for help at the time. I needed to feel that there was a glimmer of hope; that even if Hannah would never be able to sit on her own or do anything else for that matter, someone had at least TRIED to help her.
And so, Hannah was assessed at what had now developed on a new site into a charity called The Legacy Rainbow House and then we waited for an appropriate class to start. For the first 12 months parents were encouraged to engage in the programme with their child in a small group setting, so that’s what I did. I’ll admit that for several months I came away from the sessions feeling despondent and occasionally on the verge of tears. Hannah wouldn’t engage in any of the exercises and I felt physically and emotionally exhausted trying to coax her into every activity. Her physical strength, even then, was unbelievable and so too was her willpower (that’s my girl!!). This was supposed to be fun as well as beneficial…but I felt drained and stressed and I’m pretty sure Hannah did too…and I almost gave up. But The Legacy staff NEVER gave up on us, they gave me that glimmer of hope (but no promises – and rightly so) and I’m so glad we continued to attend, despite the many miles we still have to travel to get there. Our sessions became much more enjoyable and Hannah became reasonably compliant to the point where, when it was time for parents to let go of their children and allow them to be in the sessions with the conductor/conductive assistant, I felt a little bereft and didn’t know what to do with myself. I had some free time….FREE time! I hadn’t properly had that since I was pregnant.
It’s impossible for anybody to gauge exactly how Hannah has benefitted from CE or from her time in the inclusive nursery there; she could have just been ready developmentally when she started to sit up or pull herself to stand or all the other things she’s achieved so far, but I’d really like to believe that this regular therapy has had some really positive effects on her – we wouldn’t travel the miles we do up and down the motorway each week if we didn’t think it was remotely beneficial. Hannah isn’t seen or treated like a ‘diagnosis’ there; she’s an individual in her own right, she’s treated like a child. Her achievements, no matter how small, are celebrated. She’s included. She’s loved. And I’m not referred to as ‘The Parent/Carer of Hannah’; I’m Anne…and trust me when I say that means a lot! Sometimes, when you’re a parent/carer you’re at serious risk of losing your identity. Going to The Legacy now is like going to see friends. Nothing is too much trouble. The kettle is always on (fist on forehead – Sonia, Kat, Lindsay and Serena – sorry, private joke there, but they’ll get it) and it’s been a lifeline for us as a family. The staff there just ‘get’ Hannah and some of the things we, as a family, have to go through. Walking into The Legacy feels like you can shed your baggage at the door, kick off your shoes (not literally, but I’m sure no-one would mind) and just be you. No explanations needed. Hugs and tissues are in abundance if required and so is a friendly face and many very good ears to share your woes and help you with any issues you may have.
Sadly, The Legacy is reliant on charitable donations and receive no Government funds. Parents have to pay for sessions but these are heavily subsidised by the charity who work tirelessly to fundraise each year. We, and many other families, would be absolutely lost without this service. So, if there are any millionaires out there who’d like to contribute to The Legacy…or celebs who’d like to raise their profile…please get in touch! *cheeky grin/wink*
Maybe you’re wondering what this Conductive Education is. Well, it began in the late 1940’s in Hungary. Professor Andras Peto, a pioneering neurologist, created a holistic system of intervention working initially with children who were affected by cerebral palsy. Now, it’s used with children and adults with all kinds of other neurological disorders and disabilities. It’s not a ‘quick fix’ or a cure but it appears to have some pretty amazing results. I’m far from being an expert in this field (so if you’re a conductor and reading this, don’t shout at me if I’ve got it wrong) but there seems to be several key interconnected elements to CE which involve:
- A programme of individual learning and practising needs (focusing on the following skills : physical, play, self-care, social, emotional, communication and academic abilities)
- The conductor (not one with a baton and an orchestra!) who’s responsible for undertaking the initial assessment of need and then formulating and facilitating the CE session
- A task series and daily routine
- Rhythmical intention
- The group (small groups)
There’s lots more information about CE on the internet if you’re remotely interested. There are a few places in the UK that offer CE but you won’t get it on the NHS and I’m sure there will be organisations worldwide offering this intervention.
So finally, here’s an explanation of The Legacy Rainbow House in their own words…
“The Legacy Rainbow House is a national charity that helps people with disabilities, acquired brain injury, complex health needs and life limiting conditions to overcome the restrictions of their conditions in order for them to lead a more independent life.
We do this by providing a specialist education and rehabilitation which helps every area of learning. Although improving physical development is a central aim of our work, we also aim to enhance all aspects of development, and confidence which in turn positively affect speech and cognitive
capabilities – essentially we help people to reach a better quality of life.
Originally, our services were created in 2001 to help children with disabilities. Statistics now show that only 1 in 13 disabled children receive a regular support service of any sort from their local authority, which is why our work means so much to families – we help their children to achieve and give them hope for the future.
The Legacy Rainbow House has grown with need and now offers therapy/rehabilitation to adults with disabilities and acquired brain injury. We want to be able to help new beneficiaries, but also offer a continued service for when our children reach adulthood.”
Thank you to The Legacy Rainbow House…for making a difference.
And to all you parents/carers and children out there…never, ever give up.
For more information about The Legacy Rainbow House, please visit www.thelegacy-rainbowhouse.com
This post is dedicated to Louise, Director of Services at The Legacy Rainbow House and officially voted ‘Best Boss in Britain’ by Smooth Radio – because I didn’t mention her in my first post, because she kicked me out of The Legacy on Hannah’s first day at nursery and told me to go and have a nice day (which I did!) and for generally being amazing.
To Theresa, who also never got a mention…but who’s always been there if ever I’ve needed her…and for just being lovely!
To Jo. Because The Legacy would never have become what it is today without her.