Wednesday, 5 March 2014

The rest will follow...

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

Tuesday, 25 February 2014

Living arrows 8/52 - in the picture

Since becoming a mum, I've taken hundreds (possibly thousands) of photos. Early days, baby firsts, special days, family, friends, funny moments, milestones. They are a lasting reminder of both our daughters time in this world. Looking through them the other evening, I began to realise something missing from the pictures I've taken and the memories I've captured. 

The pictures represent my memory of events, because I was the one behind the camera. In years to come, the girls could be forgiven for thinking I wasn't there at any of their achievements or celebrations! There are so few photos of me as a mum, so my mission from now on is to get in front of the camera with my girls more often....


Tuesday, 18 February 2014

Adventures with Henry

On valentines day, Ella bought a friend home with her from nursery to stay for the weekend.  He came with a list of likes and dislikes, a diary for us to write in and he seemed to be a well behaved and polite little boy.

Meet Henry, the nursery doll... 

On Saturday, we took Henry on a trip to Manchesters Museum of Science and Industry. We had a great time playing and exploring, visiting the steam engines, making music and even got our picture taken with the brass band...

Henry enjoyed the Victorian dressing up box, sitting in the steam train, playing with Ella and having piggy backs in the rucksack.

On Sunday, we had a quieter day. Granny came for lunch, mummy cooked, daddy did some jobs and Ella had lots of time to play with Henry...

And she also liked to mother him. Lots of pretend play feeding, cleaning, putting him to bed and doing his nappy...

We had a lovely time with Henry and he's very welcome to come and stay again xx

Sunday, 16 February 2014

Living arrows 7/52 - one little pirate jumping on the bed!

I've had a tough week with Ella, she's been stroppy, defiant and shouting when she's tired, frustrated or things aren't going her way. Learning how to handle her when she's like this and trying to decipher what's wrong has been a steep learning curve for me. I do think although her speech is improving, she's reached the point where she wants to say more but can't and she gets cross - her understanding is so much better than her ability to tell me what the problem is at the moment. 

But we've had fun and smiles too. Here's some pics from when I caught my cheeky little pirate jumping on the bed! 

Happy Monday everyone xx

Monday, 10 February 2014

Living arrows - 6/52

Loving watching Ella and Lucy's relationship develop. Ella at times can be bossy, reluctant to share, rough and there's a little jealousy creeping in now too. Lucy is beginning to assert herself when Ella removes her toys or is too rough with her - letting her sister know she doesn't like something by doing this cross little shout at her! 

For the most part, Lucy adores her big sister and Ella still loves cuddling and mothering Lucy. 

My girls xx

Wednesday, 5 February 2014

The Adventures of Max the Dog & Ella the Princess

My brother and sister in law wrote a book for Ella a while ago. It features her as well as some beloved family pets (Max the dog and Gordon the cat). 

My brother has spent many hours and lots of hard work turning the book into an app for the iPad. It's priced at a very affordable £1.99 with 10% going to Alder Hey which is where Ella had her heart surgery back in 2011. 

The story, illustrations and animations are lovely and 'Ella the princess' was traced from a picture of Ella so it's lovely to see a character with Down's Syndrome in a book without it being mentioned or focused upon (the 'King' & 'Queen' may look kind of familiar as well...!). The story is engaging and easy to follow for younger children and the app narrates the story for you.

You can download the book for the iPad here:

Read more about Max here:

A big thank you to Uncle Tommy & Aunty Vicki xx

Monday, 3 February 2014

Living arrows 5/52

Ella...a million and one things before she is a child with Down's syndrome. 

Sister, daughter, friend, mischief maker, banana fiend, puddle splasher, bookworm, hairbrush hater, Mr Tumble's No 1 fan, trampoline jumper, climber, cat lover and makeup artist...

My Ella bean xx

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