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. 

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. 

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
Southport
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.

We are but brave travellers

Still here. Waves. Doing good.

I now have both children at school, Scarlett started Primary School and loves it, thank God. Despite both children not being present in the house time seems to go very quickly and I am still running round in circles.

Summer was great. Zack has been brilliant of late. And we ventured further for our holiday this year. Drum roll........we did it, we went abroad to Menorca. Our first holiday abroad and I am glad we did it.

Having spent five weeks prior to the holiday making every list known to man, I then proceeded to spend a week cooking food for Zack to dehydrate into a dodgy looking powder to take with us. My main concern about going away was getting through security with all his meds, equipment and powdered food.

I needn't have worried. At security I was asked to go down a very speedy special aisle and without a second glance at Dan and Scarlett, Zack and I had bypassed all the queue. Everything got through without question and then Zack and I waited twenty minutes to be caught up by a stressed Dan, who had to empty three bags and contain a four year old.

Flight was great. We took a harness for Zack to use on the seat and other than a little bit of upset towards the end of the flight, all was no problem. He gained a new fan, a lovely air stewardess, who looked after us and even asked if he wanted to go and meet the pilot after we had landed. Well it would be rude not to go say hello.

We stayed in a great apartment in a hotel complex. Weather was hot but not overly oppressive, pool was lovely as was the beach. All was going well until Day 3 when Zack got the mother of all chest infections, high temp, coughing up green yack. Thankfully we remained calm and Dan took him to visit the on-site doctor.

The story goes that the doctor looked very panicked when he saw Dan carrying Zack in to his office.

"What is wrong with him" states worried doc, "oh, this is Zack, he's got cerebral palsy.....errrm, that's not why I'm bringing him to you. He's got a chest infection." "ohhhh" look of relief on doctors face.

By the end of the chat, Zack had a prescription for antibiotics and Dan got a pat on the back for his diagnosis. (First year medical students us).

Tell you what, two days later and that chest infection had been nipped in the bud, there's a lot to be said for warm weather.

Suffice to say, Zack was the only disabled in the village, which meant a lot of looks all the time. Most were just curious, some people asked us about him, I didn't care, we were on holiday.

The return journey was good and I have to say how wonderful Mahon Airport Mobility Assistance is, they met us as we checked in our luggage. They took us all the way to our gate, came back for us, took us to the plane and took away Zack's wheelchair to go in the front hold. Could not fault their service, Manchester airport has a few lessons to learn. It isn't too bad, but we had to go on a lengthy walk to get back to arrivals. It didn't ruin our holiday though, I am so happy we have those memories and here's to many more. We are but brave travellers. A little further next time perhaps?

Here's some photos.

Epic Fail

December. December. That's when I last spoke.

Sorry. I'm back, we're back. To continue our adventures, our story.

I won't bore you with the recap of the past four months, you'll catch up. Just know that we are all well and in a good place.

So on with the story.

I went in for some PEG button changing training the other day with the school nurse. Zack's Mic-Key button has been in place now for five years and every three months it needs to be replaced with a new one.

This job was always done by a nurse. I avoided it at all costs, too squeamish (wimpy I know) but also the fact that he once pulled it out by himself and then it refused to go back in firmly boxed off any chance I had of going near it. 

However, given I am often on my own with him and he has a taste for getting hold of his button and/or feeding tube I thought it was about time I come face to face with my nemesis.

So here I was at 3.15pm in school looking at a pretend baby doll that has had a really rough start in life. I mean that baby has a tracheostomy, a cannula, a peg and some other hole in the poor things stomach. Also, small child, the curious four year old enquires about each and every added extra that appears on the babies body. I swear by the time she's 10 she will have the knowledge of a first year medic student.

Pretend doll didn't play along, the peg wouldn't go back in, things did not bode well.

We move over to real child who was very happily chilling on the floor listeining to music having been very unimpressed with the school visitor, subject matter being gardening.

I get the peg out okay, by this point Zack is highly amused at my attempt to not butcher his stomach and does not co-operate by lying in a relaxed manner as I shakily went in for the placement of the PEG. Would it go in? My arse it would, nope it kept wobbling and bending all over the shop. Which only increased Zack's capacity for laughter and my inability to get over my fear of pushing on.

In the end I quit and the nurse popped it in.

Epic fail. I flunked my first attempt. I didn't even flunk my drivers test first time and all this is is putting a small plastic tube into a hole. Oh, did I mention it's only a hole that goes directly into my child's stomach. No pressure then.

Agreement was that I have another go in three months time.


I came home with both children and told Dan about my flunking of the button change. By the way, he has successfully completed his training no problem. 

Yeah I thought you might find it difficult was his first response. You kind of have to wiggle it about. You'll get it though. 

Yep, I'll get it. But for now Nurse Gould, if that button comes out, you're up.