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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.

Tuesday, 15 September 2015

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.

Saturday, 25 April 2015

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.

Friday, 5 December 2014


We are here. I just haven't had five minutes to myself to write about our crazy, busy life.

Quick synopsis, Zack is good, Scarlett, good, Dan good, me working on cloning myself so that I have more time.

I will update soon. Promise. Stay with me. 

Sunday, 21 September 2014

Where else would you want to go?

Having completed two half days and a very good full day, Zack went to school for two hours last Tuesday morning before I get a call to collect him as he wasn't very happy. 

Yet again, we are met with a suspected chest infection, another course of antibiotics and a Pants that is coughing up a load of nast and updating his seizure numbers to a higher frequency.

Talking of seizures we have now increased medicine two and so far it has made not one dot of difference. This could be because he is ill which means we do the waiting game and see if things improve. 

However we just cannot get him right at the moment. Fingers crossed he improves in the coming days. Don't get me wrong he is still very happy and laughing a lot but I am sure he is thinking that he is now much too cool for school and is attempting the world record of a home staycation. 

Talking of staycations, I must share our photos of our brilliant holiday in the UK. We stopped at Cornwall for a few days before travelling to North Devon for the Great British seaside extravaganza.

The first spot we stayed in was, how can I put this politely, well, imagine what an old granny's cottage might look like in the 1970's, you know the one that has a few dogs, is a bit lapse with here personal hygiene. You get the picture? We stayed one night before I complained to the owner who moved us into a much nicer cottage. By the way prior to this move, he offered me a £25 voucher to use at the local pub. Nice try.

Cornwall was good, we visited Padstow, had some fish and chips from Rick Steins posh chip shop, (rip off price) but it was delicious. 

Oh, Padstow, that reminds me. A short tale of disability discrimination. Too long for this post I shall tell you in the next one.

We also visited Port Isaac, bit boring I thought. Very pretty, lots of expensive shops to tear the money out of hands of middle class tourists but pretty. Meh. That would be my final comment.

Before we drove up to North Devon we stopped at the Eden Project. We've been before and it is good, but the thing that impresses me most every time is the Changing Places bathroom. A proper disabled toilet with a changing bed that goes up and down, even showering facilities. Amazing, it makes all the difference.

North Devon. We booked an apartment in Westward Ho and oh yes, it was fabulous daaarlings. Loads of space and a hot tub on the roof garden. We had floor to ceiling windows that overlooked the atlantic ocean. My motto for the week we stayed was "Where else would you want to go when you have Westward Ho." (You can have that for free Westward Ho tourism marketing people, actually forget that if you use it I'm suing, but feel free to offer me some monetary value).

Ok, it's only a little seaside village and some of it is a bit chavy, but there are some good restaurants and Zack loved his hot tub plus in our en-suite there was a whirlpool bath with lights which he was even more impressed with. I swear we have both never been so clean, by skin was beginning to shine by the end of the week. 

Scarlett was addicted to the beach and I'm sure as the day's wore on she was morphing into a diddy surfing chick. The whole atmosphere was relaxed and easy going, what also got me was that nobody batted an eyelid about Zack. Usually you get the staring, the really rude staring but here people just looked smiled (not the pity smile), some people would come and say hello and chat to Zacky like he was just an ordinary little boy (which is exactly how we see him). It was a refreshing change. I was hoping I would get left behind in the Penthouse with the 55 inch 3D tv and full sky package. Alas it was not to be.

Here are some pictures. Aaaaaah good times.

I'm telling you mum Rick Stein better bring me my Scampi and Chips soon or else I'll go in there and cook it myself. Understood.

Aaaaaaah beer, it makes me so funny.

Swift drink of the rough stuff before I start. Actually he was very good.

Told you we loved the toilet at Eden Project, though it does like Scarlett and I are in desperate need of the loo.

I love my hot tub.

Yes I do.

You know,  just chillaxing,

The view from our window.

Again, where else would you want to go?

There was a sweet shop underneath the apartment, never give three year olds free choice.