So how much £&@! can you fit into a room?

Nate hasn't been feeling great this weekend and so we have retired to his bedroom which is where his sensory equipment lives. It's a huge room. But it doesn't look it. Alas Nate's room isn't filled with the usual crap of a 7 year old boy. No lego on the floor or cars lined up,  or princess dresses ( no gender stereotypes here). Instead his room is chocka with sensory equipment and toys, cuddly toys, and medical/ care shit. 

I'm sittting here thinking this absolutely sums up why families of disabled children and adults feel squished in their homes, and why so many fundraise or look to charities for equipment. I watched the GNR last week and as we cheered and supported those running ( or walking) we could see that so many were running for charities that have helped and supported us. I saw Newlife and Percy Hedley. I usually also see The Rainbow Trust, Caudwell Children, and people running for The  Great North Children's Hospital. However as I was so busy chucking jelly babies and slices of orange at people in dinosaur costumes I probably missed them. 

There's a huge stigma associated with asking for help with money. I must confess I felt a weird mix of guilty and downright shitty when we fundraised for Nate and also applied to charities. We had no money for any of the things that Nate would enjoy, and that wasn't just because we were um you know bankrupt and a bit "housing unstable" shall we say. It was because every bloody thing with a "special needs" tag on it costs a fortune. Had our financial situation been better some of these things would have still been completely out of reach. So if you do see families raising money for sensory stuff please recognise that they aren't tight or lazy, and they can't just get a job and pay for it themselves. I won't bore you ( again) with how difficult it is to work and care for someone with additional needs. Just believe me it is. 

So I thought I'd take you on a tour of Nate's room. If you like you can imagine how much stuff we have to take away for just one night out of the house and the army style organisation that goes into it.  

I should have tidied first. Ah well...

Oxygen concentrator to provide oxygen for the ventilator, and back up cylinder in case of power cuts. The electricity suppliers know about us and have to provide a generator  within 4 hours but sometimes the concentrator isn't feeling well. 

One not so small boy.

Bag and mask for um bagging.

Nate's wall of clever things he has done. Yes the room is still a boring grey/ blue colour but we need him out of the house to decorate and when he's out of the house for respite all I want to do is sleep ( and drink wine). Once the room is decorated he will have a huge notice board up for his photos and certificates. Currently they are held up with a mix of hyperfix and sellotape and make the carer crap herself when they fall down in the middle of the night. Ooops. 

Emperor Zurg and Rex guard the seizure management plan, nasopharyngeal airway and rescue meds. The video monitor points to the sats monitor so that we can keep an eye on them from outside of the room and intervene ( panic) when necessary. 

Nate's bed has breathable sides, for um breathing, and its raises and lowers and tilts. He has a sleep system for his posture and the mask for his bipap is on the pillow that doesn't match the duvet cover. Scruffs.

Sensory stuff that's seems very small now. Or he's very big. One of the two. How have we still not put the mirrors on the wall? 

Chair for the carer who does a few overnights.  They need a comfy chair. Thems the rules.

Overhead hoist for um hoisting. That I do lots of...

We are so messy. Sats monitor and probe, gloves, nippy bipap ventilator and humidifier, drawers full of spare probes, tubing and general shit. God bless Ikea. 

That's probably everything. Spare oxygen, suction machine etc are under the bed but if I showed you that... well I'd have to kill you. 

Not shit part two.

In December 2015 our family went on the trip of a lifetime. Caudwell Children's Destination Dreams trip allowed us to use Nate's Make a Wish at Give Kids The World in Orlando Florida. We had a team of doctors and volunteers to help us and 24 other families experience the parks of Florida and make precious memories. Our next door neighbours in Give Kids The World, a fellow Caudwell family, told us about their cruising experiences and how positive they had been. Cruising was an experience I hadn't ever considered as it was something I ( wrongly) associated with old people. Getting a complex child with a shit load of kit on a plane ( see previous post about Nate's room) with a huge team of helpers was at best described as tricky. Whether it was the passengers getting off the plane flinging themselves over oxygen tubing as they were in SUCH A HURRY, the passport control man who screamed at the doctor carrying Nate's concentrator to "GET BACK AWAY FROM THE LINE ONE PERSON AT A TIME", or the family in front of us on the way home who boarded late and immediately flung their seats far back into mine and Nate's laps  ( we were at the back), well I knew I wouldn't be able to take Nate in a plane again. Didn't mute those low oxygen saturation alarms very quickly did i huh?  😉. 

Although absolutely crapping myself at the idea we ( that is Michael) thought a cruise was worth a try. 

Things that had to be sorted-

-Accessible room ( so that the wheelchair would fit through the door) 

- Oxygen 

- Water for feed and flushes 

- Blending Nate's food 

- Fridge for meds 

- Appropriate voltage for Nate's electrical kit 

- Lots of meds

- Packing feed, containers, syringes, pads, and the other stuff Nate can't go without

- The normal stuff you take on a holiday...

And so after a VERY long drive we arrived in Southampton, stayed over and made our way to the docks. 

At the cruise terminal the Royal Caribbean staff took one look at us and shipped us off to priority boarding. Porters at the car park were unable to take much of our ( well Nate's) luggage for safety reasons and so we were still pretty heavily laden entering the terminal. The boarding staff arranged for some of their crew to get us and our excessive amounts of luggage and kit onto the ship. Not being able to get into our room until 1pm was a bit of a pain but having taken up a drinks package offer meant a constant supply of alcohol, which certainly helped. 

Our "accessible panoramic stateroom" had amazing views. But I wouldn't describe it as big or flash. I took a peek at the other rooms on the deck and ours was huge comparatively, but once you added a wheelchair and all of Nate's kit in there wasn't much space to move around.  Not that we planned on spending much time in the room. Most importantly however, Nate slept! 5 nights in a row. So all we need to do is go live on a boat... 

The cruise had everything we needed as a family. Activities for Thea, and experiences for Nate. The food was great and the service outstanding, particularly in the main dining room. 

We had a tube blockage issue mid trip due to the busy buffet restaurant not sieving the blend, luckily this was a partial blockage and we could still get meds down the tube. Eventually ( a day and a half later) the offending seed was dislodged and the tube unblocked much to our relief. Nate's gjet had only been replaced the week before and I didn't fancy having that particular conversation with gastro...

The cruise company provided coaches, including many which were wheelchair accessible, into the local towns once we had docked in our destination ports. We seemed to find some sort of celebration everywhere we wandered, and Nate had a truly multi sensory experience. To be honest we were just as happy on the ship. Even the choppy motion and sea air seemed to agree with Nate. The hustle and bustle of evenings on board was also a huge success. 

It was such a pleasant change to be on a trip  where I wasn't made to feel like having a disabled child was a huge inconvenience. With the exception of some very lovely and amazing places locally I've found in general there is a substantial lack of knowledge and understanding within customer services of disability, illness and additional needs. There's usually a look of panic or irritation when we ask for something different or "not the norm". Front of house waiters in restaurants are unable to even shift chairs out of the way of Nate's chair. There's the staring when Nate starts with his variety of noises, or just at him full stop. It was refreshing to not have that. I hadn't realised how much the actions of others weighed on me until it was very obviously absent.

If you are in customer service you need to learn about your customers, and that means all of them. 

If we've learned anything it's that life's too short so we will take the "not shit" times and max the living shit out of them. 

Yeah so Michael was right, it was a good idea. 

ssssh don't tell him though