The disabilities balancing act
Most people would see my upcoming situation and say that it is brilliant news. It is. But there is a whole layer to it that people don’t know about and don’t see.
That is what this page is about. Explaining that hidden aspect that some people will not know about and others will understand completely.
So, Friday, I have the surveyor out to do final checks and to talk to me about how the accessible kitchen will be fitted.
Part of me is excited. I can’t wait to be able to learn to cook more things in an oven that is easier for me (and the kiddo) to reach.
The only lower surfaces will be the sink and the hob.
The high cupboards will have drop down shelves so that I can store things and get them down by myself.
For being a wheelie, this is AMAZING 🤗
Part of me is really struggling and will continue to struggle until the kitchen is finished.
Being autistic makes this so much harder.
Sure, everyone would not be happy with the noise of destroying the old kitchen and putting a new one in. Being autistic, noise, both loud and complex (because there is also the complexity, too many different noises, even if not loud, can be very very difficult) can be very difficult.
For me personally, when overwhelmed by loud or complex noise, I can feel it all up my neck, sometimes into my jaw. The sensation isn’t painful like my legs are painful, it is more an extreme discomfort. It is overwhelming, I don’t have the brain space for anything. I sometimes stim using my hands to help, the repetitive movements give me something to focus on. I don’t know how it works, just that it does. I sometimes click my fingers near my ears or flick the outside of my ears because it is familiar and familiar is soothing when overwhelmed.
It’s not just the obvious noise and disruption.
I have 2, possibly 3 ‘conditions’ that affect executive functioning
Autism and complex PTSD are the confirmed, but I’ve been recently referred for an appointment with the psychiatrist to discuss ADHD.
Executive functioning is really important for organizing all the things needed before and during the works.
It is my brain’s ability to plan, initiate and carry out things, like a commander on a space shuttle, except mine is pretty useless and needs ground control (PA, my dad – although he is a ‘desperate times call for desperate measures kind of ground control 😂, my autism support worker, and intermittent mental health support depending on the whims of my local nhs trust) to come up with the plans and go through it step by step.
Don’t get me wrong, mine tries sometimes and succeeds occasionally, but this is harder than it should be.
My ground control at the moment is not great. My PA has been off for 6 weeks and could end up going off again, which would be a disaster. My dad has been trying to help, but it has been hard, his heart is in the right place, but both myself and the kiddo are properly drained when he has been ‘helping’. My autism support worker used to have more appointments with me, but now they are less. The mental health team have let me down massively at the moment. My second PA lied to me today, saying that he checked and the waste and recycling centre isn’t open today, but I know it is, I double checked and it is open. I don’t like being lied to.
I don’t have anyone else in my ground control so, it might get quite stressful and I might mess up and cause both the kiddo and me lots of problems. 🤦♀️
So, there is way more to it than just, noise and disruption and ‘Hey presto’ sparkly new kitchen. This is what I have to navigate with faulty executive functioning –
I have to work out where my appliances are going – washing machine, tumble dryer and fridge freezer.
I have to pack up ALL the things in the kitchen and store them, except I only have 1 cupboard, possibly 2 if I use the one in the kiddo’s room which she doesn’t really use.
Which means organizing myself to know what I can move now and what needs moving closer to the time.
I need to figure out how we are going to store and make meals for 2 weeks, so I need to set up a kitchen surface somewhere in my 2 bedroom flat.
I probably have enough clothes to go 2 weeks without using a washing machine. However, the kiddo can’t. She only has 4 days maximum uniform. So that means scoping out a launderette.
Washing dishes etc will have to work a way with the bathroom sink filling the washing up bowl. Maybe a second ‘station’ I can put up in the bathroom? 🤷♀️
I need to help the kiddo through it too. She hates noise too, and her new PAs can’t have her after school each day like I would have done with her last PA.
We have nowhere to go due to covid 19
So, it isn’t going to be good for either of us during the works.
Neither of us can wait until it is finished.
Have you had to balance the needs of 2 or more disabilities? How did you do?