If you let it creep in

Three weeks prior to Christmas Zack got his usual bout of winter cold/nose blockage. Compared to previous years he has had it quite easy. He missed quite a bit of school but then I don't think he was too bothered and lets face it, isn't the last week of school before Christmas just where you bring in Operation or Buckeroo?

Trouble is Zack's cold goes something like this. Cold, nose blockage, can't sleep, sleeps, wakes up snorting, back to sleep, snorting and so it goes on and on and on. This time it's gone on for about six weeks. Plan is to now contact ENT to see if there is anything we can do. Not sure if there is but surely it can't be right that it continues for several weeks.

Last night Zack decided to stay awake in bed until 1.30am. Yep, we happened to have friends over. He knew that. Why should he lie upstairs in his bed listening to the gossip downstairs? Several rounds of chat from me to him about the fact it was late, go to sleep and it's bedtime, made no difference. Coming downstairs in a blanket helped. He went to sleep within five minutes after he tried to suss out who was in his living room.

Christmas and birthdays are tricky times. Magnified now that Scarlett is growing up, it's lovely to see the excitement in her keeness to rip open her presents, well, just rip paper really. And although Zack does like his present opening it's hard to know what to buy a little boy with such complex needs. He did do very well though. He got a fab dragon that roars and moves with only a touch of a button, a pimped up noise producing flashing light car, plenty of noisy sensory toys and a TV for his bedroom. And whilst he obviously takes pleasure in these toys it's not to the extent that his sister does. If you let it creep in, that emotion that you feel in watching the ever increasing difference between the two siblings is a bit like an underlying sadness that just simmers beneath your foundations. You know it's there but you keep it buried, underneath the concrete. Sometimes, like at Christmas it knocks and you have to acknowledge it if only for a while, then it goes and you can carry on focusing on the present.

I guess what I am trying to say is, and I think other parents of children with special needs will understand, is that there are certain times of the year that make you look and sometimes wish that the circumstances were different. But for me this glimpse is brief and then I go back to see the totally fantastic individual he is and I think he is the only Zack I would want to have in my life. Not a normal ordinary little boy but my extraordinary miracle.

Here's our Christmas. We had a good time. Hope you did.

Ooooooooh the presents

Yes me and daddy are in us onesies

Ben 10 woohoooo

Dog on a stick

You're not that funny Zack

Loving my sister

I is going to eat all the food.

Nice gravy jug

Happy Christmas

Happy Christmas one and all.


We have had a lovely time, children spoilt and Zacky pants got himself a TV DVD combo for his new pad.

Will post pictures soon. 

But for now here is Zack enjoying a donkey ride through Santas grotto and meeting the man himself. I mean what else do you do on Christmas Eve eve. Thanks to The Donkey Sanctuary Manchester.

Well it would have been a nice picture if it had worked!!!!

So look who's gone shopping

When Zack was little going to the supermarket on my own, meant pushing him round in his specialised buggy whilst balancing a basket full of essentials (I never go in for just one thing) on my left arm.

I used to envy the other parents pushing round their toddler in the supermarket trolleys. Well check this out.

A while ago I posted about a brilliant test product from the research and development department at Cerebra. A portable seat that could be used in supermarket trolleys, on dining chairs, in fact with most furniture that allows an individual to sit. Shift forward a good few months and a company called Leckey that produces equipment for children with disabilities have took it one step further and launched the Firefly Go to Seat. Firefly is a brand belonging to Leckey, they design and manufacture products to support special needs family participation.

So look who's gone shopping to Costco for his bumper pack of washing-up powder, best kitchen rolls in the world and free taster food, the Pants.

Oh and me of course, and his dad, and his sister, who refused to sit in the trolley, why do that when you have huge ailes to run around?

The Firefly Go to Seat is part of a collection of products that Leckey are developing to help make life easier and more inclusive for families who have a child with a disability. 

Lets just pause for a moment. Wait, a company that is actually producing products to make life feel a bit more normal. Finally, someone is listening. 

Getting back to the chair. The improvements and development of the product are very good. It is still lightweight, extremely light in fact, easily carried with one hand.  You can pop it into your car or carry it onto a train or bus, it takes up hardly any room. More importantly (for me as a woman) the colours are good, not garish and ugly but pleasant, light green, blue or pink. 

There is a five point harness, padding to the chair and what I noticed compared to the original design is the back has some flexibility from the base, in that it gives slightly. 

The pants is a bit of a bigger boy now so this seat will probably serve us well if we want him to sit on a chair in a restaurant or even perhaps travel by plane....ooooh the very thought. 

But I can still get him into a trolley. Even if he does look bemused by the whole process of me faffing about tightening some straps.

Whilst the harness does keep him secure it doesn't provide him with total trunk support so he tends to lean slightly. This however wasn't a problem, a bit of a nudge, encouragement to hold onto the bar of the trolley and hey presto he was sat up and enjoying the ride. Who said a spot of extra therapy can't be thrown into any situation.

This seat really does make shopping easier. It makes life a bit easier. What's more I think the price of the product at £125 is reasonable. I just wish this was around when Zack was first born it would have probably allowed me access to a simple task that most people take for granted.