Saturday, 23 August 2014

3 years later...

3 years ago this week, I started a blog.

A blog about my baby daughter Ella.



A lot had happened since her birth and I wanted to capture her milestones and achievements and to share our journey. I wanted to be able to remember, to see how far she has come and to share my pride of being her mum.  




I guess I also wanted to show people that having a child with Down's Syndrome was not something to be feared or ashamed of.  I couldn't understand people keeping their distance when she was born, the new baby cards that said 'sorry' or the out of date, negative information we'd been given when  she was born. I was seeing the world through new eyes - Ella's eyes. 

A Different View. 

The blog has unexpectedly opened many avenues for me - getting involved with charities to raise awareness, supporting other parents and families, being part of an amazing movement to change societies views of DS and disability and meeting some amazing and inspirational like-minded people.  


Unfortunately, it's not always been easy. As a community, we've weathered a good many storms over the last few years...Colin Brewer,advances in pre-natal screening, internet trolls to name just a few.   

And now this week, Richard Dawkins, an influential biologist stated that to bring a child with Down's Syndrome into the world is immoral.  His reasons being the welfare of the child and his opinion that people with Down's Syndrome don't offer anything valuable to society. And that was all broadcast to his 1.1million twitter followers.  Unfortunately, should you take the time to read the replies and comments of others, it would lead you to believe that Richard Dawkins views are also those of society as a whole.  

So saddening to hear that others deem my child less worthy of life, a 'burden', 'tragedy', 'sufferer'. That people see a child with DS and 'feel sorry' for their family.  That children shouldn't even be born with this condition because there is a pre-natal test to screen them out of the population completely.  Upsetting because then you wonder, is that what our friends, work colleagues or the lady on the checkout at the supermarket really thinks of our child?  But you can't think that way because on a personal level it's destructive and it goes against everything that so many of us are working so hard to overcome.   

So Dick, just for the record...Ella doesn't suffer, she isn't a burden to society and she is not the outcome of an 'immoral' decision.  She's mostly a very typical three year old, she says please and thank you, comforts those who are sad and unlike you doesn't see difference in herself or others.  Above all she is loved and treated as equally as her sister and we have high expectations for both our children.  


I know I am merely a drop in the ocean of change. But every drop creates a ripple. And along with all the other drops creating ripples we are collectively creating a wave.  

Together, we are a powerful force - changing attitudes, challenging preconceptions and raising awareness. 

Who knows where we'll be in another three years?













Wednesday, 6 August 2014

Little butterfly


Today was Ella's leavers party at nursery. Saying goodbye to all the children leaving to go to school or pre school. They had a great day, with bouncy castle, games and party food.  

There was still very much a party atmosphere when I arrived to collect her and there were lots of parents as well as children in the toddler room. I was struggling to see where Ella was in all the chaos... One of the nursery girls saw me looking and pointed me in the direction of their outside area. 

And there, away from the crowd was Ella having her face painted. Something she has never been keen to have done before. Apparently she had said no all afternoon then changed her mind at the last minute. She was sitting beautifully still, having a pink, glittery butterfly painted on her face. She smiled when she saw me but didn't move, just signed and said 'butterfly'. 

I got a little bit teary, she looked so grown up sitting there - my independent, chatty and beautiful little girl. So proud of how far she has come from the little 9 month old baby I first dropped off at the nursery, with a bagful of spare clothes and medical equipment (and a suitcase full of worries and uncertainties). I'll always remember the staff and the nursery fondly - the place where my girl learned to fly...

Unfortunately I'd had to wash her face before we managed to skype daddy tonight (tiredness and rubbing the eyes not such a great look when you've got your face painted!), I did get a few pictures of my little butterfly though...


Signing butterfly



Sunday, 3 August 2014

On a Roll

I suddenly seem to have a little girl by my side, no longer a toddler...


She's very independent, chatty, pushing boundaries and generally growing up way too fast.  



Over the last few weeks, the biggest change in her has been her communication. She's now mastered putting two, sometimes three words together in sentences and I find that I can actually have a conversation with her where I'm not just asking questions that require a 'yes' or 'no' answer. She initiates conversation and often approaches me with 'mummy...' followed by lots of words and signs (we still use makaton to support her speech). I can mostly work out what she is trying to say, fill in the gaps and always repeat back to her what I think she's said. I know when I've got it right because I get a smile that's full of understanding and pride. She struggled at first stringing words together and for about a week she developed a stutter as she tried to get two or three words out together. It was so hard to bite your tongue, knowing what she was trying to say but wanting to let her get there by herself.  

Using makaton at home (and at nursery too) has also had a big impact on Lucy. From her first sign at 11 months old ('gone'), now at 14 months she is also picking up words and signs everyday. She's got herself a reputation as a chatterbox at nursery already, will be interesting to see if that theme continues in future school reports! She's also mastered saying yes and no when you ask her a question (you can guess which one we hear more of!)... She's still not yet walking but is cruising and is climbing on everything (daddy is very pleased!). 


Signing 'gone'

They both seem to love being sisters. Lucy likes to be where Ella is (Ella not so much) and Ella still likes taking toys off her sister (to which Lucy shouts 'share!'). They're mostly quite affectionate with one another though and I even caught Ella giving Lucy her beloved cat and snuggle after their nap last week...




There's some changes happening over the next few months in our little world. Ian's going to be working away from August and Ella is moving to her new nursery in September. I'm sure both girls will take it all in their stride even though I am worrying about how the changes will affect them.



I am sure they won't notice... Life is so very busy...constantly on a roll...


Happy Sunday everyone xx




Sunday, 22 June 2014

Learning disability week 2014

To celebrate this years learning disability week, Mencap have chosen 'firsts' as their focus topic. Wonderful stories of first days at school, first dates, first homes, jobs and other milestones have been shared by people all week. 

It's made me realise that we still have so many 'firsts' to look forward to experiencing and celebrating with both our girls as they grow and develop.

With them both still being so little, we celebrate their firsts quite regularly - Ella is now for the first time jumping properly on her trampoline (sometimes even in her sleeping bag!) and Lucy's first this week is cruising the furniture...



For me, the 'first' that I remember most clearly was Ella's first smile. I knew from reading the information we were given after she was born that she would meet many of her milestones behind her peers. 

And looking back now, it was that first smile that I longed for the most out of her baby milestones. She was around 14 weeks old when we got out first glimpse of her mouth beginning to turn upwards, but it was always so fleeting and we were never quick enough to catch it on camera. All we knew was that our little Ella was going to have the most amazing smile when she decided she knew what to do. 

As her mum who was with her all day every day at that point (spending most of my time singing, pulling faces and making silly noises in an attempt to get a smile) I was convinced I would get her first beamer. But no.

Should have known from day one she was a daddy's girl. Every evening when Ian returned from work he got all the smiles (still not full smiles but definitely happy to see daddy). And this continued for a good week or two...


By 16weeks old she was smiling properly but we still hadn't managed to catch it on camera. Then one evening, I managed to take a snap on my phone. It's grainy, not great quality but it speaks a thousand words. My favourite ever picture of Ella that I've taken. Her first smile finally caught on camera...


Well worth the wait xx

What firsts do you remember?









Friday, 20 June 2014

Sleeping lion

When I was little, my parents would often find me asleep on the landing outside their bedroom door when they got up in a morning. I have vague memories of doing this and seem to remember taking my blanket with me so I wouldn't get cold. I don't know how long this nocturnal wandering phase lasted but I'm pretty happy sleeping in my bed these days.

For two or three mornings over the last couple of weeks, I've found this little munchkin fast asleep on the floor by her door gate. The scattering of books a little clue to what she's been up to in the wee hours...



Not sure when she had got up or how long she'd been there but she seemed comfy enough. 


A little sleeping lion xx



 


Tuesday, 6 May 2014

The Learning Journey

Last week we received confirmation of Ella's pre-school place...


Can't actually believe I've just typed that. Pre-school?! Where have the last 4 years gone?! 

I'm already an emotional wreck about it.  She will be leaving the wonderful nursery she's been at since she was 9 months old and moving to our local resourced nursery that we first heard about when she was only a few weeks old.  Charnwood is an amazing place and Ella's been attending one of their opportunity groups for the last 2 years.  She loves being there and it will all be very familiar to her when she starts.  It won't make leaving The Christie nursery any easier though.  She really has had the best start to her educational journey there and I know the same can be said for every child that walks through those big blue front doors.

We wouldn't be moving her unless we had good reason.  Her current nursery is in Manchester but we live in Stockport and that's where Ella will be going to school.  Charnwood is the right place for Ella to be for her pre-school year, they have experience of children with additional needs, can help with school selection and the transition into school when the time comes. 

And on the same day we received Ella's news about her learning journey, I got news about the next step on mine.... 

 

For me though, it has to be having children that has been my biggest learning journey.  You don't attend lectures, gain specific qualifications or a fancy certificate to file in your record of achievement. Being a parent is not something you can prove with a qualification, it becomes you and you become it. I've learnt more over the last three years being a parent than at any other time of my life - about myself, my relationships, family, friends, love, patience, frustration, guilt, happiness, pride....too many things to mention here.  It's the hardest but most amazing and rewarding experience.  

Thankfully, you get the best teacher there is. A teacher who lets you know just what you need to know, just when you need to know it...



Your child xx  


Sunday, 13 April 2014

Living arrows 15/52 -

The time, place, family and story behind the picture may be different. But if you look back through many a baby photo album there are certain scenes that get re-enacted time and time again. 

A brand new, pink baby in a Moses basket, the first taste of food from a spoon, first time on the swings... Or the bathing the baby in the kitchen sink shot...


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