Saturday, 13 September 2014


Little steps forward mean so much.

I never assume progress will happen for James so when it does I'm stunned and happy. And I celebrate very step with the same wonder and awe that a new mum has on seeing her child's first smile.

This week our progress points are:
Nails cut - tick
Toileting improving - tick
Requesting chill out time when overwhelmed in his classroom - tick
Transitioning back to school after the holidays - tick

We will go for our fist visit tomorrow and I'm really looking forward to it. I miss his cuddles and squeezes though it's been lovely to get a guaranteed full night's sleep!

Saturday, 6 September 2014

Ready, steady, go!

Over summer I started making some major career decisions. Having returned to work one day a week after a four year break I found a changed NHS with reforms still ahead. Morale is variable, staffing levels patchy and workload more intense than ever. Faced with the challenges if providing an out of hours service and managing my caring responsibilities I struggled to see how I could continue on my training role. Then last week I spent three days in the induction for community training.

I am shocked at how three days have changed my expectations, plans and desires. I have a fire in my belly that hasn't been there for years. I want to complete my training, regardless of the difficulties ahead, and be out there making a difference for families like my own. The acceptance of a non career/non training post would mean that it would take years to probe myself. How do you sit in a meeting with budget holders and persuade them to find your new, innovative service if your title is misunderstood and seen as carrying less kudos. As a consultant it's clear who you are, how long you've trained and what you stand for. As a staff grade you are virtually invisible. You're still doing the same work, dealing with less bureaucracy but your battle for change is longer, harder and tougher. I feel the passion for my work coursing my veins again, I feel my brain ticking over with idea and I feel as though a fire has been reignited. I think I'm ready to give this a go. I'm under starters orders....

Friday, 5 September 2014

Little things

"Little things mean a lot"

I couldn't put it better if I tried.

My child development work focuses on seeing children who are experiencing difficulties in one or more areas of their development. The more I learn about "normal" development, the more amazing it is that things go right most of the time. The brain is such a poorly understood organ, difficult to really get a handle on, perhaps we need to look outside the box and ask how come everything has gone right rather than trying to focus on what has gone wrong! So much of what young children learn is done instinctively - we don't teach our neurotypical children to use gestures and point, they pick it up almost by osmosis. The same goes for language - we don't actually coach and "teach" conversation, it's learnt through observation, modelling and trial and error. For James, all of these early foundation steps are missing and I look at his development through very different eyes. Each step in a task needs to be broken down and taught individually - I am an expert in backward chaining now (an approach where you teach the final step first and then once that is mastered, the penultimate step). It's a very drawn out approach but when a skill is finally mastered it's cause for celebrating. If you've had to teach your child to out on their socks over the course of four years you're going to be ready for a party when they've finally "got it"!  It also means I'm bowled over by my girls' achievements in a way that other parents don't experience for their neurotypical children. I am stunned that my three year old can write the first letter of her name and that my 8 year kid can make a full packed lunch. Sometimes I fear I have lowered my expectations for my subsequent children as a result of a James' challenges and sometimes I'm guilty of having expectations that are too high. Getting the balance right is tricky but I celebrate all the small steps that each of them takes in ways that I would not otherwise have done.

Little things mean a lot.

Thursday, 4 September 2014

What a difference a year makes

365 days
52 weeks
12 months

However you look at it, it's a long time. And it's been a very busy year with ups and downs and lots of action. Last time I wrote, James had finished his first term in his new school - he's just started his second year!

How fast the year has flown and how much he's achieved in that time never ceases to amaze me. As I dropped him off yesterday, I reflected on the things that seemed unlikely a year ago - he now (occasionally) takes himself to the toilet, he assists in most activities of daily living with a persistence st tasks like dressing that was not there previously, he is showing more awareness and understanding of his environment (sometimes unwelcome - when I finally realised he was able to take the key for the back door out of the drawer and try and unlock the door I had to quickly think of a new hiding place!), he eats sandwiches (have you ever tried making a packed lunch every day for a child who doesn't eat sandwiches in any form?!), he has learnt to use a "regular" swing (the sight of me trying to manhandle a child of over 5 foot in and out of a bucket swing designed for toddlers is no doubt amusing for onlookers but not much fun for me or James). His communication is better and more reliable although his vocabulary hasn't extended much beyond food. He is still the happy, energetic boy who gives the best hugs in the world and being away at school has only changed things for the better. I never doubted that but the purse holders seemed to think it would be detrimental to his well being. Where are they now?  Most of them have moved on to other posts which is probably just as well as I have returned to work one day a week and am now ready to empower more families to kick them into action!  I feel ready to support those who have no voice and my experience and knowledge can only help them.  I feel ready for battle again and whilst my own is won (for now) countless others are still to be fought.

Let battle commence....