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Friday, 12 February 2016

Happy 7th Birthday Beloved

I am sat in the lounge looking at a pile of presents, balloons and banners with seven written on them. 


Seven years have gone by and I cannot fathom how fast that has happened. Nor can I understand the deep love I feel for a little boy who has never uttered one word to me. Nor ever hugged or kissed me. 

How can I feel such a profound connection? It goes to prove that in order to love someone deeply you don't need words it is profound.  More significant than what can be shared or felt from one person to another.

I only have to look into his eyes and he only has to look into mine and smile and I know. I know that he has been my most significant catalyst for change and the most significant event in my life. 

He is seven and he is moving forward, never backwards. Always progressing at his own pace and in his own time. In the past two years he has altered and is more engaged and aware than previous years. I am very proud of him, I am in awe of him and I am blessed to have him in my life. 

Happy birthday Zack. My wonderful son. My boy. My love.

Wednesday, 20 January 2016

The dying chair

I should have mentioned Zack's got some new legs. Not actual legs, he's still got his own, they're getting quite chunky. By legs, I mean wheels.

We said goodbye to his old wheelchair. Old faithful. The one that is featured in so many photographs on this blog. It had been everywhere with us, days out, holidays, it even went abroad. Then one day, quite dramatically, it just gave up, in the middle of Debenhams, it quit.

As I casually strolled towards the lift with one eye on a four year old looking for toys, I heard shrieks from behind, followed by Dan shouting my name, which could only mean one thing, panic, or man drama.

It was panic, I turned to see the wheelchair collapsing in half with Zack still sat in it and Dan trying his best to keep it open. I should also mention that there was a store assistant stocking shelves who did nothing to help, thank you helpful Debenham's staff.

We got Zack out and folded the dying chair in half carrying it back to the car two heavy weights, one in need of new legs and one with no hope. (The wheelchair, had no hope, the wheelchair).

Fortunately at the time we had been testing out this little beauty over the summer.

I can honestly say it is one of the best wheelchairs Zack has ever used. We have always had issues with Zack being able to maintain staying in a wheelchair for long periods but with the Chunc he is very, very comfortable. One day he even managed to sit in his chair for over three hours, unheard of in Zack world.

When we got our new chunk, there were a few teething problems with the set up, it needed a few adjustments and tweaks. And this is where the company really do come into a league of their own. Nothing was too much trouble. There was no long waiting period, everything was dealt with efficiently and quickly. You were looked after and you truly do feel like they want to get this right for you because it is too important to not get right. They want you to be completely happy with the Chunc.

After it been tweaked and adjusted, Zack was good to go, and we haven't looked back. Out of all of our equipment this is one of the most important pieces. And Zack's new legs are looking the business. Thank you Chunc.

Wednesday, 30 December 2015

Now famous smile

My boy turns 7 in February. Seven years. Not a day goes by when I don't think about our alternative life. The one where he is 'normal', the one where he gets to open his presents like his sister, or ride his bike, or play, or run, or eat. If I dwell too long it becomes overwhelming, I shut it away in the box marked never to be opened and continue with our ordinary. 

The one where Zack is incredible. The one where I have to fight and argue and speak for him every day. The one in which I recognise every single tiny milestone as a miracle. 

But the other day I was reminded of how far he has come when his sister came out of his room carrying the first toy that made him laugh. A little rattle that claps together when you shake it. I still remember that day as clear as anything, he was only 10 months old and hadn't laughed at all, it took him months before we got his now famous smile. That day he'd had an EEG done (the first of many) and the nurse gave him the toy to play with I shook it and he laughed. That was one of the best days of my life. My son was not lost, he was very much present.

Now seven years later I was a fool to think he would never accomplish much, he has achieved greatness and continues to show me what he can do despite the severity of his disabilities. 

That laugh, that beautiful laugh, that can turn into extreme fits of giggles is his greatest gift. 

And now, now, thanks to more regular therapy he sits better, holds his head for longer. He is learning to use his eye gaze technology working towards some method of communication. He is maturing and growing, he is becoming a cheeky little boy, but is the most loveable being in our house. 

Thursday, 22 October 2015

Needed a pit stop

Farms. Aaaahhhh, the smell, the good old stinky smell of a farm. Can't say it's my favourite stench but something I will put up with on a visit to a local attraction, Stockley Farm.

How much fun can you have on a farm? Well, apparently a full day's worth when you go with us. One pinic packed, one car fully loaded as though I was going camping and we were off to the farm.

It started well, drive into a field, plenty of disabled parking. Now, where's the farm, oh yes it's just a short tractor drive away. Tractor? Is this accessible? Why yes it is. The tractor turned up pulling a big metal trailer full of hay bales, don't worry I was told we'll just get the ramp down. This ramp was massive but do you know they got Zack and I up quite safely and off we all bobbed down to the farm. 

It turns out that there is accessible parking right outside the farm. I pointed this out to the tractor driver who said, "yes, but then you wouldn't have had all the fun of the tractor ride." Well, quite right too. Told you the farm was fun and we had had only just got there. 

Zack, needed a pit stop so I could give him a drink. Off we went into an indoor area that had big bouncy inflatables, and a smaller play area for toddlers. Scarlett was very happy to disappear into the abyss of inflatable heaven whilst I gave Zack a drink. 

Then we took a look at some of the farm animals which included a pig who was quite possibly the first one I have ever seen who posed for photos. There were also goats, cows, horses, you get the idea. 

Throughout the day there were lost of activities going on including meeting rabbits and a pole cat which Zack really liked. We fed baby goats and lambs a favourite activity of Scarletts. We groomed ponies and whilst we were there we were lucky enough to witness a calf that had just been born. Although, I have to say at this point Scarlett was more interested in having a fourth go of the fake cow milking machine!

The picnic and outdoor play area was well maintained and lots for children to play on. We even went on the nature walk which was lovely and took us through woods, yes, I powered Zack through the forest.

Staff were brilliant and very accommodating, taking their time with all the children and making sure everyone got a turn of whatever activity was taking place.

My only and biggest gripe is the toilet facility. I think from memory it was a disabled/baby changing toilet combined. Which basically meant either I put Zack on the floor to change him, errrrmmmm, no, or I do the old wheelchair shuffle change. 

Such a great place to visit that is accessible for wheelchairs really does need to address the issue of providing suitable changing facilities for those with disabilities. By that I do mean the full changing places toilet,  not a bar on the wall to help you get off the toilet. Nope. The full on hoist, changing table experience. Go on Stockley Farm have a think about it.

Overall though, it was a very good day out. We shall be visiting again in the future. I'm a lot more accepting of the smell these days. 

Monday, 21 September 2015

We liked outside just as much as inside

Eureka! The National Children's Museum, Halifax.

We love this place. First off, as the label on the tin says it's a children's museum, everything is geared towards the little people. It is a utopia of fun. Imagine walking in to a place and you have your very own lets pretend shop, post office, house, bank, car workshop. Everything is touchy feely, created to inspire play and make-believe. 

It goes without saying that Scarlett loves this place. For one she doesn't get me nagging at her shouting "no touchy shop, no touchy".  It's safe for her to have the freedom to run around, everything is there to explore and investigate. 

Wait, I'm jumping ahead, let me start before we even get there, with the cost. The cost is very reasonable you can save some time and money by booking online, but what I like best of all is that once you have paid once you can visit throughout the year without having to pay again. Carers also get in for free. 

There is plenty of parking for blue badge users.  Outside has a brilliant giant sandpit, a train carriage that you can go and sit and have your lunch in, and other wonderful dens and places to explore. We liked outside just as much as inside. 

There are two floors to the museum all are easily accessible. A large giant lift takes you up to the second floor and the wide open spaces make it easy to get around with a wheelchair. 

As I said on the first floor is a mini real life set up, shops, banks, workshops. There is a sound space an area where children can explore sound and use their imagination to create music, whilst learning the science behind it all.

Up on the top floor is a gallery called All about Me. As the name suggests it's an area looking at the human body. There is a pretend dentist with giant teeth, an area where you can hear a baby's heart beat with an ultrasound, a place that explains all about our senses, a giant tongue and nose. It's fabulous. 

There is a restaurant on the lower ground and whilst it can get busy it is reasonably priced and the food is good. We found that going in just a little before noon can get you a seat easily but on busy days if you leave it later you could be waiting a while. 

Now lets just get to the really important part, toilets. 

Toilets are beginning to become a problem for Zack and I. We used to manage by squeezing onto a baby changing table, but those days are gone. The boy has got big and won't fit any more, what's the alternatives? 

Well, there's hoping he doesn't need changing in the time you are out.

There's trying to change him on the back seat of the car or in the boot. 

The worst, and I cannot ever bring myself to do this, is to change him on the floor of the toilet. This is what some people have to do, could you imagine doing that with a baby? There would be uproar. Those Daily Mail readers would be up in arms. 

Changing places are currently running a fabulous campaign to try and get suitable changing facilities into public spaces. And by disabled toilets we don't mean a wider space or a hand rail. We need a changing table, a hoist. You get the idea.

That's why when I discover a place that has suitable facilities for Zack I am really, truly delighted. And Eureka did not let us down. Oh no. There was a suitable toilet with hoist and changing table. 
Jump up and down and clap. Yes, well done. This makes life so much easier. Thank you Eureka.

It seems however there hard work has already been recognised with a Gold Award in the 2015 Visit England Awards, Access for All Category. Congratulations it's well deserved.

Zack gets a lot out of coming here. There is plenty for him to see, touch, get involved with. It's easy for us to access and they even have a scheme whereby if you give them enough notice they can get you an extra pair of hands, so to speak. A member of staff will assist you on your visit, how great is that? Here's a link to their page all about their accessibility.

I think you've gathered we are big fans of this place, it gets a massive 9 out of 10 from us. And a huge plus points for working hard on making it inclusive and accessible. We will be going again......well, it would be rude not to, we have our annual passes now.

Good days out

Did I mention that Zack had a great summer.

Yes, I know we didn't have the kind of summer we are used to, oh, sorry, we did, yeah not much sun, not very hot but hey at least it was dry. 

We had some good days out, days out that I found myself on making mental notes of how accessible they were, how good the facilities were and I really must write a few blog posts about them. Well it may prove useful to other parents/carers looking to take out their adventurous little ones. Lets face it, going on a day out is really tough when you have a child with a disability, it's not like you can just hop in a car and off you go, enjoy your day. No, it needs planning, it needs people, it needs a large amount of bags, so many you think it's a week's trip not a day. But Zack needs to experience the same things that other children do, his sister needs to know that disability doesn't just mean staying inside the house, it means fun, it means laughter and however tough it may be to do this it is well worth the effort.

What follows is a few posts about days out from a disability perspective.

They are:

Eureka Children's Museum
Stockley Farm
Knowsley Safari Park
Dunelm Massey (the stately home that sells bedding) ahem, Dunham Massey
Sandcastle Blackpool
Gullivers World

On a completely different note, over the summer Zack lost two teeth. He now rocks the snaggle tooth look and has a new attitude to match. The tooth fairy was kept busy and is now a bit broke. Hope you enjoy the next few days out posts.