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.
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