Friday, 21 March 2014
Monday, 17 March 2014
This week is Down's Syndrome Awareness week - there couldn't be a more appropriate time for Ella to be featured in the powerful and emotive photo campaign entitled 'Lose the Label'...
It took a long time, but I don't think about Down's syndrome every day any more.
And I don't see it any more either. I just see Ella.
I know that won't be the same for other people who see her or meet her. No matter how I see my girl, the fact she has Down's syndrome will always be the first thing most people will notice about her.
Yet, the fact other people see Down's syndrome first is not in itself a bad thing. It is after all a big part of who Ella is. As I've said before, it doesn't define her or what she is capable of, but it will always be there and will always be noticeable to others. If someone has a broken leg and is wobbling around on crutches with their leg in plaster, chances are you're going to notice their broken leg before you get the measure of the rest of them. The difference comes in how an outward disability or injury is then perceived by others.
I often wonder what stereotypes people assume when they see Ella (some people are great 'experts' and just love to tell you all about your own child)... 'I bet she's so loving... likes Music... Loves to dance... Always happy... An easy child...'
I've found that Ella is so easily put into a box by most people as soon as they meet her. And yes, she can be all of those things some of the time but at the moment she is mainly just a stroppy, stubborn three year old with a fierce defiant and independent streak. Like anybody else, she has likes and dislikes, her own little quirks and a wide range of emotions. She takes toys away from her sister, has a slight obsessive compulsive need to shut doors and has a special ability to seek out the one person sat on their own in any given social setting and start 'chatting' to them (whether they like it or not).
So, I've learnt through experience that there is a need to banish the misconceptions and stereotypes and to reinforce the fact that everyone is unique despite their outward appearance, whatever that may be.
I came across the 'Lose the label' campaign on Facebook a while ago. Beautiful pictures of children and adults with Down's syndrome all with the same simple yet powerful phrase added to them. The pictures show children playing, dancing, walking, crawling, smiling, laughing, enjoying hobbies and holidays, crafts and sports.
The campaign is about seeing and putting the person first, not their disability or syndrome. Ella is not a 'Down's child' or a 'Downs'. Neither is she a 'sufferer' or 'victim' of Down's Syndrome.
I have Down Syndrome. I am not Down Syndrome. I am Ella
A million and one things before she is a child with Down's Syndrome.
Our Ella Bean xx
Friday, 14 March 2014
Saturday, 8 March 2014
So here's this weeks living arrows. Better late than never, can you tell I'm back at work now?...
Here's Ella with my two younger brothers at Fountains Abbey last weekend. I love them as my brothers, but love them even more as uncles to my girls (and Ella loves them lots too) xx
Wednesday, 5 March 2014
Ever since Ella was a tiny baby there has been huge emphasis on supporting and helping her development. Over the last three years she's had medical and developmental input from physiotherapy, speech therapy, dietitians, paediatrician, specialist nurses, cardiac team, feeding clinic, play therapist, portage, sensory support service, ophthalmologist, educational psychology, ENT consultant, audiology, pre-school special needs service. Their knowledge, experience, treatment and interventions have all impacted Ella and contributed to how well she is doing today.
As Ella's mum, I took all the advice we were given on board. I don't think a day has gone by over the last three years when I haven't thought about Ella's physical development, speech, understanding or her heart and feeding issues and how best to address or overcome them. Depending on what Ella needed, I too became a physio, speech therapist, dietitian, play specialist, advocate, teacher, nurse. Just being her mum often came second, third (sometimes fourth) down the list and it's only now looking back that I see that.
One of the earliest things I picked up on was that play was also an opportunity for Ella to learn. Even now, I find it very hard to just let Ella play without incorporating a learning agenda - shapes, colours, letters, numbers, speech sounds, counting... She's getting wise to it though, often refusing to co-operate or answering my questions incorrectly with a mischievous grin on her face...
A couple of weeks ago I went to a talk by Debby Elly who has twin boys on the autistic spectrum. She started the Aukids magazine which is published monthly and is also a platform for lots of other autism related resources.
There was one thing she said during her presentation that stuck with me. When you have a child with additional needs you can get caught up in all the extra help and therapy they need and the worry of the unknown, such as when will she achieve something and how well will she do it?
Her take home message for me was simply 'stop being your child's therapist'. Stop being their therapist and just be a mum. That's when things really happen because you take away the stress and the need for a result.
I'm taking her advice on board, from now on - no hidden agendas, I'll let Ella lead me.
Just being a mum... the rest will follow xx