Ben has just turned five.

A birthday means the anniversary of his birth, which was a mixed bag.

But loads of good things have happened since! Each year we make a list of what Ben has got up to over the previous 12 months; achievements noted, developments made and skills gained. Parents of disabled children often talk about ‘inchstones’ rather than milestones. Early on, it became clear that the gross motor skill developments that characterise a typical child’s life were going to be hard for Ben so we had to adjust our expectations and targets accordingly, but success rewards the patient and if you look in the right places there are wonderful things to be found.

In the year between his fourth and fifth birthdays Ben has done a lot, including:

• left nursery, started school full-time (settling in brilliantly)
• learnt to enjoy the affections of his brother and realised Max can be funny
• used an eye-gaze computer regularly, playing lots of games
• learnt to look at Yes and No symbols regularly
• stopped having any formula milk, eating only home-made food
• adapted brilliantly to having a night carer
• discovered his love of the hot tub
• started getting the bus to school
• learnt loads of letters
• reliably recognised the numbers 1-10
• starting riding his trike
• met Michael Rosen!

Ben has really thrived over the last year – he has been healthier than ever and had a lot of fun. We were looking forward to celebrating him turning five with a tea party and a family video of the past year’s best bits…

… and then he really pulled it out the bag!

We have known for a while that Ben recognises most letters and Granny has been diligently teaching him to read. His school has also been working on phonics with him and recently he has been using the eyegaze computer in his classroom to do some work with letters. The day before his fifth birthday, Ben came home with this message from his teacher:

‘Ben used his eye gaze [computer] to independently word build. I asked him to spell out bat and several other ‘-at’ words at the end and he did so no problem!’

If that isn’t a bloody milestone, I don’t know what is. Love that clever boy.