Clinical trial – a year on

Monday and Tuesday we were in Manchester again. It is the end of Pudding’s first year on the clinical trial that aims to halt the progression of Hunter Syndrome in his brain. So he needed to go for an MRI scan and lumbar puncture under general anesthetic. It’s been an emotional journey of course. First […]

Twiglet no more

To my oldest little boy, You’re growing up. From your too-short trousers to the five slab-like new teeth in your mouth, from your enthusiastic love of The Kinks to your adult way with words sometimes, I can’t help but notice it. Often lately I look at you and see the teenager you will become. It […]

Happy New Year

Christmas is over for another year. With a change to normal routine, festive food and many opportunities for sensory overload, I know many families with disabled or additional needs children can find the period a struggle. But for me, unlike other holidays, Christmas means lots of other adults around to help take on ‘Pudding duty’. […]

Festive fun

As I said last year, I’ve always loved Christmas. I know it’s not for everyone. And there are some people out there who prefer the wild partying and heady celebrations of New Year. But for me, Christmas is family and warmth and lights on the tree and food and… Oh, loads of other things that […]

Nativity

Ah, the school nativity play. That time where parents struggle politely for the best vantage point to watch their sweet child parade onto the stage with all the others. The tinsel, and cobbled together costumes. The angel so busy looking out for her parents that she carries on walking and nearly trips over a shepherd. […]

Sleep like a baby?

Having written about emotions last time, I’ve come to realise something (probably fairly obvious) this week. I am so much better at coping with everything when I am well rested. I’ve had a few late nights recently, and I find it leaves me in such a fragile state of mind. When I’ve slept enough, I […]

The ‘new normal’

Last week I was having a conversation with someone about emotions. Of course when Pudding was diagnosed with Hunter Syndrome I went through all of them – anger, guilt, desperation. I was drowning in the strongest emotions that I’d ever felt. When you first hear that your child has a condition that may kill him, […]

Time sponges

I always expected that when my children were old enough to go to school, I would start work again. I used to be a therapist, but stopped when Twiglet was six months old. I became a stay-at-home mum and also did childminding for Niece and Nephew. I suppose this has left me with some self-image […]

Products that I love

This is a post I’ve been meaning to write for ages but never quite got round to. One thing I found when I joined the strange new world of additional needs is that I had no clue what sort of products were available to help us. Not the big equipment sort of things like special […]

Party!

Last week Pudding had a party to go to. One of those ‘Turning 5, and inviting everyone in the class’ sort of parties. I looked forward to it as a great opportunity to see Pudding in a large group of his peers and watch first hand as he interacted with them. It would also be […]