When you child's playstation habit makes you burst with pride

I really, really did not imagine I would ever write a post with the title "when your child's playstation habit makes you burst with pride", but a couple of weeks ago that is what happened.

You see I have this love/hate relationship with games consoles - the neurotypical (read non-aspie) parent in me who believes in healthy exercise, being outside, riding bikes, kicking footballs, throwing rugby balls and hours spent in a swimming pool, hates games consoles, they are a modern day evil turning our children into dribbling, square-eyed, monsters...

However, the other parent in me, the one who is trying to understand how her children tick, who is aware of the one who is differently wired, who is desperately not trying to turn in to her parents  (anyone remember the comments their parents made about your favourite bands during Top of the Pops?)........

Reflections & Resolutions

This is the toughest time of the year for us Special Needs Parents, New Year brings with it not a sense of expectation but almost a sense of dread  - what will this year throw at us? Where were we this time last year, where are we now?

For me it is a point in time, close to Daisy's birthday where we can mark where we are with her, and it tends to take all my normally optimistic and mindful outlook to drag myself out of the gloom and focus on the year ahead as I look back on what has happened so far.

Merry Christmas

Merry Christmas everyone.  We have had a hectic few days celebrating Daisy's 9th (yes, can you believe it 9 years old!) birthday and preparing for Christmas.  Here's a beautiful picture of us all meeting Santa in Harrods on her birthday.

Life is pretty tough with lots of seizures, intravenous medications and an ever increasing workload but moments like this and the chance to celebrate another year with Daisy make it all worthwhile.

Wherever you are, thank you for reading my blog and sharing my journey  - have a peaceful and relaxing festive season.

Steph & Family xxx

Aspie Christmas Everyone!

I love Christmas.  I love the preparation, the carols & cheesy songs, the parties, the socialising, the decorations - in fact I guess I'm a bit like Buddy from the film Elf when it comes to Christmas.

Product Review: Firefly GoTo Seat by Leckey

Yes , you read right, I'm doing a product review.  Guess what, it's for a product that at the moment Daisy can't even use but I think it's so fab I wanted to review it and tell you all about it.

Over the years, as the world has become more savvy about providing for the needs of disabled children products have been developed that are aimed at making their, and their parents lives a bit easier.  When I saw the GoTo seat I just wished it had been around a few years ago when Daisy was a bit smaller - because it would really have been a godsend.  How often did we find ourselves leaving Daisy confined to her special needs buggy in restaurants because the high chairs were not safe for her to sit in with her poor tone, or travelling to visit friends, we would have to lug her large, special needs chair which did not fold down and took up even more space in our full to the brim car.

Thank you for giving me another chance!

Thank you all so much, I am so delighted to be able to post that I have been selected as one of four official bloggers for the 2014 London Marathon.  I am so grateful for each and every vote, thank you so much for taking the time to vote, share my link and asking your friends and family to vote.  You have given me a great early Christmas present - the chance to combine two things that have become very important in my life in recent years - blogging and running (but not at the same time, that could be logistically a bit difficult!)

At the start of this year's London Marathon

Help me run the London Marathon again (my first VLOG)

I am delighted to be a finalist in the competition to be one of 4 official London Marathon Bloggers for the 2014 race.  I am down to the final 15 and now the competition has gone to public vote.  I was asked to make a 90second video on why I wanted to run the London Marathon and this has now become my first foray into Vlogging (video blogging).  Xanthe helped edit it and the ukelele soundtrack is also provided by her.

I was not given much notice to make the video and Daisy was also pretty poorly at the time so it was put together on a Sunday while we were also liaising with the hospital on what new antibiotics to start, delivering blood samples to the ward for analysis and dealing with her seizures and pain - no wonder I look slightly manic in some of the shots!

As you know, and the video explains, I love to run and it helps manage the stress with my life with Daisy.  I ran the marathon this year and here are the two blog posts I wrote about my experience with marathon running and why I do it

A tale of three marathons

A tale of three marathons - the postscript

So - if you would like to help me fulfill my wish to run a sub-4 marathon and raise even more funds for ShootingStar-Chase please click on the link below to vote (it takes seconds!)

VOTE FOR STEPH!

Did you miss something Mr Timpson?

You may remember that earlier this year I was part of a delegation of Special Needs Bloggers who met with Edward Timpson, MP - Parliamentary-Under Secretary for Children and Families.  We had an opportunity to share with him our personal experiences of life parenting a child with disabilities.  He was very engaged and appreciated the time we spent helping him understand the realities of life when you are involved in a more extreme form of parenting.  In fact after the meeting I received a lovely note from him which even mentioned some of the points I had made and thanked me for my time as he wanted to ensure that he full understood the challenges parents like myself face.