Saturday, 20 July 2013

Little mama

Best little mama I know...


One of the first of many sisterly moments xx

Wednesday, 17 July 2013

Look who's talking...

Ella's speaking and signing have improved a lot over the last few months.  This means that communicating with her is becoming a lot easier - she can answer simple questions, follow directions and she can tell us what she wants (and what she doesn't).  The word 'no' seems to be a favourite!   She's now starting to copy speech sounds, still chats away constantly and is learning new words and signs every week.  Her speech pronunciation isn't always clear (especially in words with lots of speech sounds together such as 'please' or 'crying' - other words such as 'car', 'yes' or 'no' are very clear for all to understand).  I know other people sometimes struggle to understand her even though I know what she is saying (or signing).  

So with her expanding vocabulary, our new task is to get her to begin to put words or signs together to start building simple sentences.  It's still a little difficult at this stage as Ella doesn't have all the words needed and none of us know the signs for everything so, for now, conversation incorporates both words and signs not one or the other.   



She's a very sociable little girl and charms people wherever we go.  Waiting rooms are her favourite place, she loves going up to people and talking with them... her 'hello' breaking through the silence! In most social situations she will seek out the one person who's on their own, minding their own business and start chatting away to them (whether they like it or not!).  In a lot of ways I am so grateful she uses makaton, but it really does limit who can fully understand her as a knowledge of the signs is needed.  I am always around to interpret for her for now though.  

Another thing we've begun working on is memory recall and improving her short term memory as these can be poor in children with Down's Syndrome. I've made up some Makaton flash cards and laminated them so we can take them out and about and use them in a variety of places.  Ella is beginning to understand the concept but we've not been using them very long.

I downloaded them from the cbeebies website as I liked the format - word, sign, symbol and picture of the object.  It's also easy to make your own as the website resources are very good, but limited.  For the moment I've included things we might see on our walks - car, bus, cat, dog, flower, garden, rain, sun etc.  She can find them during the walk or I lay them out on the floor when we get home and we go through what she has seen.  They should work well as they appeal to the visual learning style of children with Down's syndrome.  If she benefits from them I can expand their use and add to them as needed...




I've extended the memory exercise to bedtime as well - talking about her day. Where she has been, who she has seen and what she has done.  She has stared to join in at times which is lovely to see that she's remembering her day.  

We've also started on teaching Ella her colours and she's slowly getting the hang of them.  She knows the signs for all the common colours and this reinforces her understanding a lot.  The colour purple is a favourite (good sensory word to say!).  In the recent hot weather, a paddling pool full of balls has provided a good way to teach her and test her colour knowledge. We know that repetition is key to learning with Ella so we do colours at any opportunity - cars when out and about, pictures in books, clothes etc.



Ella has been awarded 10 hours support at nursery from September.  This is great news as she will get some one on one time and be able to focus on specific things relating to her development.  We are hoping the time will be used to enhance her speech and language and also possibly start with potty training.  She has just begun to tell us when she has done a poo in her nappy which is definitely the first step towards becoming nappy free. We are in no rush though and it will take as long as it takes.

She is still enjoying being a big sister and Lucy is definitely becoming a happier (and cheekier) baby!...



I've still not got much time to blog, but have a few new posts lined up when I get chance to finish them - DLA forms, online friends and Superheroes coming soon!!

Thursday, 27 June 2013

Life with 2...

The past 5 or so weeks have passed in a bit of a blur.  Only now am I starting to regain some sense of normality (whatever that may be!).  

As soon as Ella walked into the room when she met Lucy for the first time she seemed to have changed so much (literally overnight) and suddenly looked so grown up. Big sister = big girl.  She has taken really well to being big sister (like we knew she would).  I know I've mentioned her caring and nurturing nature before but it's so lovely to see it in practice. She loves cuddling Lucy and has to kiss her goodnight before bed and goodbye when she goes to nursery.  We've found her putting blankets on sleeping Lucy and rocking her car seat when she starts to cry.  She's not once shown any signs of being jealous and is already quite protective of her little sister especially I've found at nursery when the other children are gathered around to have a look.



The first couple of weeks were hard as I seemed to be constantly feeding Lucy or catching up on sleep and therefore unable to spend a lot of time with Ella.  With Ian being on paternity leave he took charge of Ella for the most part and he did a great job - choosing her outfits, getting her dressed, taking her to nursery, baths, stories, meals, play, appointments, trips to the shops (and he's now better than me at putting her hair up!).  He really enjoyed spending more time with her and you could tell she loved having her daddy around more too. 

I felt that my relationship with Ella did suffer in those first weeks and I really missed her.  In my sleep deprived, hormonal state I worried that the special bond we have was gone forever.  The constant stream of visitors made her hyperactive, difficult and at times naughty (not like her) - especially in the evenings when she was over tired (as we all were).  Looking back I can see that she was probably just adjusting to the new situation and making sure she wasn't forgotten about! Nursery reported no change in behaviour there so that helped to calm my worries that this was hopefully not a long term issue.  Again, hormones and lack of sleep had a lot to do with how I viewed the situation too. 

I have to remember Ella is 2 after all and tantrums and mood swings are part and parcel of having a toddler.  Looking at it from a developmental point of view they are actually very welcome! She's been more settled for a couple of weeks now and has enjoyed trips to granny's house, the local festival (where she went on the bouncy castle, ate ice cream and sat in a fire engine!) and seeing her friends at Charnwood and nursery...



Lucy is also stating her presence.  She's very much the opposite of Ella who was a quiet, placid, sleepy baby.   Lucy either feeds, sleeps (but restlessly) or cries.  We get some smiles but at the moment she's just a grumpy baby!  The evenings are worst - excessive inconsolable crying, nothing soothes her apart from putting her in the pram but she wakes and the crying continues again as soon as you stop.  We're hoping this phase passes soon as she's very high maintenance at the moment!

Some smiles...



...but mostly this.

Ella's love of her dolls continues, now fuelled by the presence of a real baby in the house...




She also still loves Mr Tumble and our attempts to stop her from standing right in front of the TV have been helped by this lovely little stool my mum bought for her.  She will now sit on it (most of the time) and view from a more acceptable distance.  She's begun to get all the slapstick comedy in the programme - love hearing her giggles in the appropriate places... 


Ella continues to do well with her talking and signing although I know her understanding is still much better than her ability to communicate.  I know she can tell/show me what she wants but she gets very frustrated when something's not going her way or she can't explain something to me.  She's started copying speech sounds and our homework from speech therapy is to start putting words and signs together.   When Lucy cries Ella says 'Oh-no, cry' and we've gone a bit scouse with pronouncing the letter 'k' at the end of words - 'book', 'look','duck' etc! 

So, life with two is exhausting and chaotic but it is getting easier by the week. It's been such a different experience this time around for so many reasons - and in other ways it's been very much the same as last time. But more about that when I get my thoughts straight!  

In the words of another mum I was chatting to at playgroup this week - 'things don't necessarily get easier with 2, you just get better at coping.'  




Monday, 24 June 2013

Screening debate

It's going to take me a while to gather my own thoughts over the recent developments and inevitable ethical debate surrounding pre-natal screening for Down's Syndrome. Lots of facts, figures, articles, comments and experiences to read.  

If you don't know what I'm talking about, start here...

So, for now, I will leave you with a post I wrote on this topic last year and a picture of my beautiful girl...



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