I often wish I could get inside Ella’s head…  


I wonder what the world is like from her perspective, what she sees, how she thinks and how she feels.  

I’ve had a challenging time with her recently – she’s been hard to please with every question I ask answered with a defiant ‘No!’ She’s also been getting easily frustrated which comes across as loud shouts or tears.  And I don’t know what the matter is because she doesn’t have the expressive language to tell me.     

It’s only since having Lucy that I realise what we miss out on knowing about Ella and her experience of life.  Not yet two, Lucy gives us a running commentary on her day from the minute she wakes up to the minute she goes to sleep at night. How she feels, what she can see, what she’s doing, what she’s done, what she’s going to do etc.  She can tell me what she’s bumped when she’s crying or a story about ‘daddy and Ella and Lucy and mummy and granny and Elmo cat go bounce on the trampoline!’.  

I know what Lucy finds funny, because she tells me and I know all her little quirks because she announces them like royal decrees… 
‘Lulu don’t want a blanket’ – she won’t sleep with any covers on after decreeing one evening that ‘don’t want sleeping bag mummy’ and that ‘Lucy have pillow in cot now’
‘Lulu have 2 dummies’ – she now has to have two dummies on her person at all times (when I asked why she replied ‘that’s better’)
Lucy’s ‘birthday cake’ complete with candles
Ella is a brilliant communicator, don’t get me wrong.  Despite all the challenges she faces she talks, signs and can tell me most of her wants and needs.  She can follow basic instruction, put a simple sentence together but as has always been the case, she understands far more than she can verbally communicate which I think is where her current frustrations are coming from.  She struggles socially to engage with other children as their spoken language and ability to communicate with one another means she often gets left behind. 

Having Lucy around is helping with this and Ian (who is away a lot) notices the improvements in Ella’s speech every time he is home so I know she is improving all the time. I am aware that her speech is already good. As it continues to steadily improve it will bring along with it other areas of her development like her social skills, her ability to express herself and hopefully diminish the frustrations she is having at the moment.


Just this evening Ella said ‘What do we have here?’ when I put her plate in front of her at teatime (I did laugh – and it was shepherds pie if you’re wondering!). That’s a 5 word sentence said correctly in context but one I know she has heard somewhere and is copying as a full phrase and not as separate words (she is only putting a maximum of 3-4 words together at the moment).    

For now, I’ll have to carry on wondering what goes on in that defiant, beautiful, determined head of hers.  

Some day soon, I’m sure she will be telling me herself xx







  

Amy Dunn

Our first baby, Ella Mary, was born at the end of November 2010. We were shocked to find out soon after her birth that she has Down's Syndrome. I was determined from the start that Down's Syndrome will never define Ella or what she is able to do. We will provide for her everything she needs to become the child and the person she deserves to be. There will be hard times ahead.... there are already many hard times behind us. But I already know that the good times will always outweigh the hard times. She has taught me so much in such a short time and seeing life from a new perspective is a privilege that not many of us get the chance to experience.

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