Friday, 18 July 2014

Simple things...

Often I find myself not allowing myself to imagine that Milo will  be able to achieve relatively typical things for a child his age.  I guess it's a sort of defensive mechanism,  I'm happy to go with the flow and if I never expect it I'll never be diasapointed when he doesn't achieve it.  The problem is though that in doing so I'm mindful that I'm also guilty of limiting  my expectations of him.  I've often found myself saying, he won't crawl for at last another 6 months yet, or he won't walk until he's 3 only for Milo to completely smash through these statements with his determination a week later! 
This week  Milo has perfected scooting his cars and buses along the hallway and into the kitchen (well actually his sisters Sylvanian families bus is his favourite!)    It's such a simple thing but I love watching him play this way like any other typical 1 year old would do. I don't know what I imagined but I suppose it involved me teaching him the skill of how to push cars whilst crawling in an attempt to aid the development of his motor skills and precicision of steering!  But no, he's taught himself because it's something he loves (He loves to 'talk' and sign about all sorts of transport) and he loves nothing better than listening to the noisy clatter of the hard plastic wheels rocketing across the cold floor.  Especially when he gives it a final push and whizzes right under the kitchen table.  He looks at me after and signs 'gone' .  Yes Milo it's gone! You are a very clever boy and I thank you for showing me the joy in such simple things!

Saturday, 28 June 2014

Milo's new standing trick!

So Milo has a new trick that he'd like to share with you all as he's rather pleased with himself and rightly so!  Getting to this stage of Milo's physical development hasn't been easy for him.  The low muscle tone which comes hand  in hand with the diagnosis makes it much more difficult for Milo to learn simple techniques such as sitting or standing as it demands far more energy of him to be able to tense his muscles.  With frequent practice Milo's muscle tone will improve as his skills also develop.  When I think back to how floppy he was for the first 6 months it's incredible just how far he's come already.  
I also find it lovely and inspiring to see that although Milo has the genetic trait of Down Syndrome he is not governed by it.  In fact he has the same streak of fearless determination in him that both myself and my daughter have.  

Exciting times ahead with the prospect of a toddling little boy!  Just need to work on that balance though first!

Thursday, 19 June 2014

Makaton signing

We've been practicing signing for quite some time now with Milo and its been a fantastic tool to help us to communicate with each other.  We started by learning the songs with nursery rhymes but we are now able to use them in every day conversations.  Milo amazes me every day with how much he understands!  We also use the 'Singing Hands' DVD's to help us both to learn and we had the pleasure of meeting the 2 lovely ladies who form Singing Hands at the recent 'Disability Rocks' festival in Ilkley. 

                        Christmas 2013

Birthday video

Milo's 1st birthday video, reflecting back on an incredible journey

Newspaper article celebrating Milo's journey against the odds

Birthday party!

Milo's 1st birthday celebrations!
September 2013

We used it as an opportunity not only to celebrate this momentous occasion but also to reflect back on the challenges we'd faced and over come together.  Whilst doing this we also raised £2000 for the hospitals that helped to care for Milo.

Saturday, 24 August 2013


To help support this years learning disability week ( an annual awareness-raising campaign organised by Mencap), I was honoured to be asked to write a little piece on my 'superhero' alongside my friend from  'A different View'  - Amy Dunn and also Rachel Maw.
This years learning disability week 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'?

You can read the full article by folllowing this link