Changes

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Changes happen all the time but changes to routine have profound effects on the autistic mind.

For instance..

The Boy has been attending a disability centre every Saturday morning since October. This came about because me and OH were struggling to spend any quality time together. We usually managed half an hour of Jamie Oliver at night before one of us zonked out.

Our lives revolve around our son in a way that many people won’t understand because autism is all consuming. Parenting an autistic child is incredibly rewarding but even the good days can be stressful, especially when a child has as much energy as The Boy.

I think it’s important for parents to re-charge their batteries so I asked for help so we could re-charge ours. I also figured that it would be good for our son to spend time in an environment where he wouldn’t be judged for being different. It was as much for his benefit as ours so we were assessed and referred to the local centre for what is known as ‘small breaks’.

So we’d drop The Boy off at 9.15 on a Saturday morning and go into town.

Shopping is something we try and avoid with him because he has sensory processing disorder alongside the autism which makes it an unpleasant experience. He also struggles to do anything he’s not interested in and the result is a meltdown – often of epic proportions. He also HATES supermarkets with a passion unless it’s a quick in and out for his comic.

I’m not comfortable with them either but I have the years of coping skills that he has yet to develop.

The joy of internet shopping didn’t exist when Eldest Boy and Middle Boy were children so I had no choice but to go. However, I always went at quiet times of the day so the anxiety was kept to a minimum.

After years of struggling to take The Boy with me during school holidays, I realised that I could save myself the nervous breakdown by doing the shop online. Why in the name of Alan Titchmarsh didn’t I think of it before?

Prior to this, The Boy would scream and run off and pull boxes of panty liners off the shelves as he ran. I’d have to abandon my trolley (always the wonky one) and chase after him like a complete chop.

I say chase but it was more of a really fast walk…

Shopping for clothes is another nightmare because we have about 6.5 minutes to get the job done before The Boy totally loses it – like a few weeks ago when we took him to buy school uniform and the mission had to be abandoned after 5 minutes due to him belly crawling along the supermarket floor screeching. ‘I DON’T LIKE YOU ANYMORE!!!’.

People stared as if we were the shittest parents in the world.

Same. Old. Story.

It’s been nice for me and OH to spend time alone without worrying about our son. We’ve enjoyed wandering through the town linking arms like a couple of old gits. It’s made a big difference to morale and it’s all worked perfectly, until now.

So, we’ve had a letter to say that The Boy’s session is being move to a new building and it will be on a Sunday.

CHATEAUNEUF DU PAP!

As Del Boy would say..

My concerns are primarily about how The Boy will cope with this change to routine. I understand too well the need for routine and familiarity and this is a MAJOR change so my umbrella is up for when the poop hits the fan..

Due to cuts – he will have half an hour less time so due to this (and Sunday opening hours) it will no longer be viable for us to go to town.

I’m no fan of change either and since we received the letter I’ve been comforting eating Kit-Kats to the point that my arse requires it’s own postcode!

I’ve e-mailed the Short Breaks manager and inquired if a Saturday session is an option but at the end of the day, if this is our only option then we’ll just have to accept it and adapt to the situation.

Thing is, I need routine as much as my son does and this has been my routine since October. As always, I will deal with my anxiety and try and concentrate on keeping his to an absolute minimum. OH will need those broad shoulders of his to cope with our individual ways of dealing with change – The Boy with his meltdowns and me with my need to be alone in order to process the changes.

Change is inevitable – it’s part of life. I know this and I know that change can often be for the better but despite all this I struggle with it and always will.

When it comes to autism – most people are resistant to change. It’s a common issue because the world is a confusing place to them. It’s chaotic and uncomfortably so. Routine and familiarity brings order and structure which helps to reduce anxiety. When changes happen it causes distress – unexpected changes being the most difficult to deal with as there is no time for planning or preparation.

There are things we can do to help our son cope with the change. We can use social stories and countdown to the day so he knows exactly when the change will take place. These strategies will help to make the transition less distressing for him.

I would definitely have benefited from the strategies listed above as a child instead of living in constant fear of change but at least my struggles mean that I am able to identify my son’s triggers better than most and when he squeezes me and says. ‘I’m glad I chose you to be my mummy’, I know without a doubt that I would go through it all again.

Turn and face the strange ~ Changes – David Bowie

Β Image Via Creative Commons

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13 thoughts on “Changes

  1. Oh Tracy, unless we have walked in shoes similar to yours, it’s hard for the majority to understand the daily trials you have to go to, you have no choice and not much option. Until I found you and other friends on social media, I was naive to the huge spectrum of autism. I think one of the main things you have eloquently and patiently explained is the need for routine, without this, his and your world gets jilted off of its axis and the outcome can be huge. In this case, I presume, it almost reaches the stage of what’s the point. A couple of free hours for you and OH, is a complete waste if you have to peel yourself away from a distraught boy, leaving you all hot and sweaty and not in the way of a newly married couple, all be it not in the first throws of youth!!! Was there a justified reason because heck if I can understand this, surely *the system* can…..I expect it’s a money thing. Having said this, bloody hell, I get so angry that in this country, careers have to fight tooth and nail for help and prove that they almost have to have a title of *failing* before a hand is held open towards you to help you all. This country lets down its carers, until both you and OH collapse, you will be left to walk that long never ending road until you can no longer take any more steps, then and only then, does the system step in, to offer you help. Is it too much to ask, to give you a couple of hours, at a time you want, break a week, that could be the 120 minutes you need to keep going and the carrot to hang on in there for when the going gets bad during the week.
    Change is inevitable in little mans life but it’s hopefully got to be a positive or at the very least, a well planned out change, for all of you.
    Hats off to all struggling parents out there, you all do a remarkable job!
    Big loves Tracy πŸ˜˜πŸ’žπŸ’™πŸ’ž

    Liked by 1 person

    • “Was there a justified reason because heck if I can understand this, surely *the system* can…..I expect it’s a money thing.”
      You guessed it lol – it all boils down to money in the end. It’s just such a shame when something works well and it has to change. I just hop he’s as happy as he has been because it’s something that he really looks forward to. Oh well, onwards and upwards eh?
      Thank you dear lady πŸ™‚ Big loves back xXx

      Like

  2. I read so many blogs of parents with children and dealing with autism. All parts of the spectrum. I wish you strength to take on the challenges of everyday and hope that on the good days they are REALLY good days! I am visiting from #abitofeverything. πŸ’ŒTrista, Domesticated Momster

    Liked by 1 person

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