I just posted a couple of Instagram messages about my afternoon so far and it struck me how different things are this year.
This is apparently the hottest UK Easter for 70 years and my first where I am really having my eyes open for the first time. By that I mean that I am unable to rush around like I always did, unable to pop out here and there to do this and that, instead having to take life slower and with more care. I don't know what my future will hold with my health as it is, so am really trying to take things in.
For example:
Today.
It is a gorgeous day here, easily in the mid 20's Celsius. I woke determined to get out into the garden for at least part of the day to enjoy the sunshine, rather than sitting in bed and being stuck looking at the same four walls again.
With having to be careful with my energy and pain levels, I had my hair washed mid morning and then my husband took me out into the garden to chat with my friend over a cuppa. We put the world to rights, had a good whinge each, then I went back to bed for a rest for a couple of hours.
Once feeling a bit recharged and rested, I didn't want to be stuck indoors again and my wheelchair had been left unfolded where I had left it for a change. Knowing that if I made it outside I would be stuck out there until my husband got home again, I carefully transferred myself to the lovely commode, then to the wheelchair to attempt the obstacle course to the garden.
This involves manoeuvres around my rise and recline chair, squeezing between my clothes drawer and the door, then, whilst holding the door open I have to open the stair gate to the kitchen. Whilst holding the stair gate open with one hand, I use my feet to hold the dogs back then grab the walls in the kitchen and pull myself through the gate and over the threshold. Then I have to spin quickly to close the gate before the dogs make a run for it. The next part is spinning back around to zig zag through another doorway to the back door. The threshold at the back door is pretty high (it is a PVC door) so I have to use an elbow to hold the door open whilst trying to lift my front wheels outside. My wheelchair completely fills the doorway so there is no room for my hands to propel me through the door and down the ramp. I have to grab onto the external walls of the house and launch myself out and down the steep ramp into the garden. All of this can only done if my wheelchair has been left where I can get into it without needing to walk, and if it has been left reclined with the rear support wheels extended.
Today is the first time I have done it by myself without my husband there to catch me if I miss the ramp, scrape my knuckles badly on the door or tip out. I am so proud that I managed it.
As soon as my wheels hit the patio my two girls, G and A were straight out into the garden with me wondering how I had got there alone. Sadly the step into the grassy part of the garden where the children play is out of my reach as my chair won't fit through the gap and the step is very high, but I can see them through the gate, bouncing away on the trampoline together, rocking on the bed and chasing the dogs about.
I also posted about the gate to the grassy area. It is almost like a secret garden. We have an average sized patio immediately outside the house, then a step up through a gate to the rest, which is on the larger side. It was one of the main reasons we chose this house if I'm honest, we all love being outside and there is such a rich education to be gained from the outdoors.
I won't repeat the post, you can find it on my Instagram feed below, but it made me think about the children's lives as they get older. How the things we see as simple can be so difficult for them to get their heads around, and how time consuming they can be for them, causing huge levels of frustration. I recognise it in myself now when I try to do something beyond my physical capabilities, but for them it is far less obvious or predictable.
We had the Happy senso gel (look it up online if you haven't heard of it.... It is amazing) out earlier on with one of their friends who also has autism and sensory processing disorder. They all love that gel (as do I) as it fizzes, pops and chills your hands and fingers, leaving no residue but a lovely scent behind (and no, I am not paid by them). They all love being on the trampoline and the rocking bed we have up on the grass too, but asking them to do a small task, or a simple adjustment out of the ordinary or expected completely throws them. This happens if I suggest they get a drink when they hadn't already thought of it, suggest they move to the shade to cool down, or ask them what they fancy for lunch.
Life has become all about wording things carefully, minimizing choices and decisions, maintaining the status quo and trying to predict any difficulties before they arise, whilst also trying to manage my own pain and energy.
Read that last part again and think about how you would do that with a family of five in total, perhaps to go to a trampolining class where they need to take socks and drinks too. We have the anxieties over leaving the house, new people maybe being at trampolining today, which bag to take, which socks to take, what to drink, where to sit in the car, who is going in first when we get there, which trampoline they will start on today, what the weather is like, do they need a coat? A jumper? Any joint supports? Hair bobbles? Earrings out? Then the wheelchair has to go out the back door, through the above obstacle course, then the dogs have to be got back into the kitchen so the side gate to the car can be opened.... It takes an age and a whole lot of energy to just get out and into the car.
Now extrapolate that to a full day, starting with them having breakfast, dressing etc.
Describing something, or how to do something is equally long winded. Everyone has their own way of thinking and understanding, and with autism this just becomes more evident. G isn't very logically minded but learns quickly by watching and listening to how to do something. A and J are more practical and cannot handle the demand of having someone else show them what to do and then know that they will be expected to repeat this. They learn better by trial and error with odd suggestions carefully worded so they think they were their own ideas. All of this is great when we talk about something like putting on a pair of shoes, or getting dressed. Think of this when it comes to crossing a road, visiting a new park or trying a new activity. Suddenly it becomes more complicated.
I have heard it said before that living in a house where a child has autism can be like living in a war zone, in that you are constantly in a state of alert, ready to help your child/ren through any meltdowns, if they become overwhelmed, anxious or withdraw. You are also constantly scanning their surroundings and situations for possible flash points and triggers, trying to balance whether to intervene or see it as a learning experience to a point, or withdraw immediately. The parent of a child with autism is a fighter. We have to be. We have to fight for our children when others tut at them because they are ignorant to autism, when others stare or dare to comment on our parenting. We have to fight for their diagnoses, for any support, for any therapy, for any sensory diets, any additional assessments they may need for any co-morbid conditions and often we also have to fight for our family alongside all of this due to the immense pressures caused by external bodies.
Now and then there are flashes of autism in the media, generally one extreme or the other, people pat themselves on the back for raising awareness, then it all goes away again until next year. Families and friends of those with autism live like this every single day. The person who has autism has to live with it all of the time, forever. They may be sat next to you now and you might not even realise it.
They could be that person who didn't hold the door for you earlier, the person who took an age to park in the car park yesterday, or the person who chooses the same CD every day in the local supermarket. They could be the child that screamed at your child in the park last week and then hit their mum when she tried to help the situation, the little girl who wouldn't leave their mum's side at the birthday party or the teenager with their hood up and scruffy looking joggers on and holes in their shoes.
Please be more aware, educate yourself, offer support to anyone you know who is living with autism, offer an ear to them, remain open minded when meeting new people of any age..... You never know what anyone is dealing with and how much of a difference your kindness and understanding could make.
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