I know. I’ve been there…and it wasn’t particularly pleasant (understatement!). At times, I felt like I was getting through each day on auto-pilot. In fact, scratch that, I WAS on auto-pilot. There’d be many nights where I’d stay up until silly o’clock, trawling the internet until my eyes hurt in an attempt to find anything and everything that could have any benefit whatsoever for Hannah. I regularly questioned what else could I possibly do? Or where else I could go to seek help? I believed that if I didn’t help Hannah, then no-one else would. I feared that she’d been given little opportunity to reach her full potential (whatever that may be.) And there was absolutely NO WAY I would allow her to be ‘written off’!! But I couldn’t do it all on my own. So, after the devastation of her diagnosis and when I’d licked my wounds and managed to come up for air, I decided that I needed to get my ‘Super-mama’ outfit on and go get some proper help.
Right after Hannah’s birth I’d done the kangaroo nursing thing, I’d massaged Hannah until she could be massaged no more (long story, I’ll perhaps elaborate another time), I’d done the intensive interaction, I’d engaged with a plethora of professionals who filled in their forms and ticked their boxes but Hannah received no professional regular hands on therapy from anyone. And that’s what she desperately needed. Whilst it could have been perceived as complimentary that I was more than competent to carry out the plethora of written programmes provided to me on speech, language and communication, physiotherapy, portage and everything else, what we REALLY wanted (and needed) was for someone knowledgeable enough to take the reins off me, spend quality time with Hannah assessing her strengths and needs and then ascertain what actually needed to be done to help. And then it dawned on me… Many moons ago I came across a therapy called Conductive Education (or CE, for short) - well actually, whilst I call it a therapy, others may call it a ‘holistic system of intervention’ or some other swanky name – I’d never seen anything like it…and it absolutely fascinated me. Little did I know that several years later, Hannah and I would be totally reliant upon this intervention. So, donning the aforementioned Super-mama outfit, I picked up the phone and dialled for help.
Hannah and I then travelled to The Legacy Rainbow House, a charity in the North of England that provided Conductive Education to children with disabilities for an assessment. 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 by the Conductive team 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 twice weekly 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 staff at The Legacy never gave up on us and, for that, I will be eternally grateful.
It’s impossible for anybody to gauge exactly how Hannah has benefitted from CE; 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 intervention has had some really positive effects on her.
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. 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 sessions
- A task series and daily routine
- Rhythmical intention
- The group (small groups)
So, what would I say to anyone out there looking for therapies for your child?…
- Do your homework: find out what your child may benefit from, ascertain whether you can you afford the therapy or if there are charities out there who could help fund.
- Ask questions, TONS of questions.
- Go see.
- Speak to other parent/carers.
- Don’t be scared of trying new things. But make sure you get proper advice.
- Be prepared for the long haul. Nothing is a quick fix.
- Be creative.
- Get grandparents or other people involved. Quite often family members can feel pretty helpless and this might help them feel included or useful.
- And finally, it’s all very well all those involved in your child’s care giving you programme upon programme to carry out at home on a daily basis, but, let’s face it, you need to prioritise sometimes AND have a life…
Take time out just being with YOUR child…your beautiful, precious child, who amidst all the therapies and treatments and procedures, just wants you, their mummy or daddy or carer, just to be you. For a while, at least. In my opinion, cuddles, time and love are undoubtedly the greatest therapies of all – not just for your child, but for you all!
Thanks for stopping by.
Until next time, Annie xoxo