Thursday, 22 August 2013

Superheroes

The following post is written for Learning Disability Week - an annual awareness-raising campaign organised by Mencap. This year it takes place from 19-25 August and will celebrate people with a learning disability, their families and supporters by asking the question; 
'Who is your real-life superhero'?


A real-life super hero to me is inspirational and courageous. They have the seemingly superhuman ability to come through the darkest of times, to keep fighting when others have given up and to see the faintest glimmer of hope when the odds are stacked against them. They keep trying, face every challenge with determination and achieve their potential through hard work. 

I hope over the last two years that I've shown you some of the wonderful things that having a child with additional needs brings. 

Here are some of the reasons why Ella is my superhero... 

courage

determination 

She's shown me the world from a new perspective

she's inspired me to try harder and do better.

We've had our fair share of heart ache dealing with Ella's 'arch enemies' (feeding issues and heart surgery) and it's only recently that I've felt able to box that period of our lives up, put the lid on tight and walk away.  I'll always worry that one day we might have to re-open that box - I'm a mum, nothing will change that.  But, for now it can just remain in the far reaches of my mind and gather dust.   In hindsight, we've been very lucky.  An amazing 'supporting cast' of nurses, doctors, surgeons, speech therapists, physio's, nursery staff, play specialists, dietitians, friends and family have helped our little super hero win many a battle along the way.

Through having Ella, we have had the fortune to become part of the amazing Down's Syndrome community (making friends both locally and through social networking sites). We share proud moments, advice, our bad days and sometimes we unfortunately share grief and loss when one of our wonderful children gains angels wings. 

So, when thinking of super heroes, I couldn't just mention Ella. Our community is full of them - amazing children, parents and families who have had so much to contend with.  They are truly inspirational and have taught me the true meaning of love, patience, compassion and hope.  Here are some of my superheroes from their own perspectives... 

Laura - mum to Milo


The unconditional love that I feel for my superhero, is such an intense sensation that I never thought it possible. Following a traumatic pregnancy where we were told that the complications surrounding his diagnosis of Down Syndrome would mean that he would never survive the pregnancy we were jubilant in the birth of our son ‘Milo’. Now 10 months old Milo has taught me so much along his difficult journey, he is my true superhero. Plagued by illnesses, needing 2 lots of emergency open heart surgery followed by a whole medical dictionary of complications Milo and I spent the majority of his first 6 months anxious in hospital. He has taught me the art of patience, of determination and above all of finding hope when you are told that there is none there to find. He has turned my happy world upside down and painted it back again with a new more vibrant set of paints with greater depth beyond which I could never of imagined xx


Rachel - mum to Florence

Superheroes have superpowers right? Well that means our daughter is a superhero too. Florence was born 20th November 2010 and since that day our lives have changed in ways we could never have imagined. Superheroes change into their costumes and save the world, and then they return to their normal lives. Florence arrived with her pants on the outside and has transformed us and we never want her to change. She has fought through four lifesaving surgeries with her oesophagus, heart, liver and peg insertion and countless hiccups but she never wavers and always comes back stronger. Florence has downs syndrome, meaning that she has to work harder than her peers to achieve each milestone, but work she does! Every achievement, every breakthrough, and every hurdle she overcomes like learning how to walk whilst carrying her milk machine in a back pack, leaves us in awe. Everybody has a potential superhero inside of them but when you have learning disabilities those superpowers shine through and we couldn’t be prouder of our little superhero xx

Florence

If you are lucky enough to know someone with special needs or a disability, you too know a superhero xx




She is clothed with strength and dignity and she laughs without fear of the future.
Proverbs 31:25


   

  





Wednesday, 21 August 2013

Summer fun...

We've had a quiet few weeks.  No holidays planned this summer as the house continues to take up our time (and money!).  However, we do have several weddings to go to including my brothers in September.  Ella and Lucy have been asked to be the flower girls which is very exciting.  Their gorgeous dresses and shoes have been bought and I'll obviously tell you all about it after the event -we can't wait! 

Ella continues to be a loving and caring big sister. Lucy loves watching Ella and always has a smile for her.  In fact life is all too exciting for Lucy at the moment and daytime naps are scarce!...



Ella is really into dancing at the moment. We went to a wedding evening reception recently which had a band, DJ and big dance floor.  Ella stayed close to where we were sitting to begin with, just taking it all in.  As the evening went on, she slowly moved closer and closer to the dance floor and you could see she was really wanting to go and dance but the loud music and other people seemed to put her off.  Then 10 minutes before we had to leave she plucked up the courage to step onto the dance floor and do some dancing.  She loved it, especially chasing the disco lights around the floor.  Unfortunately, I didn't manage to get any photos of her in action but I'll be poised with the camera ready next time! 

Her speech and signing still come on every week.  She is managing some two word sentences now - 'black cat', 'blue car' and we get 'oh-no cry' when Lucy is crying.  She is now being seen by the SALT assistant who is doing 6 fortnightly home visits.  We have several things to work on. Getting her to blow through her mouth - cue straws, tissue paper balls and bubbles! Encouraging the two words/signs together and building upon the speech sounds she already has.

I will leave you with some pictures of what she's been up to. Pom pom fun, garden play, football at Granny's (which she can now kick) and lots of pretend play with her tea set and picnic basket...  










Happy summer everyone xx

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!!
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