Invisible Stresses

If we were having coffee together I would have to ask you “Has it really been a week already since our last coffee together?”

This week I have tried to make more time to read other blogs and interact with other bloggers here in the WordPress community; it is such a friendly and welcoming environment! One post that caught my eye and I really enjoyed was Sometimes on the Fabulous Fit Mamas blog here at http://www.ffmamas.wordpress.com/2016/04/22/sometimes/

I especially empathised with the lines ‘ Sometimes Supermom, Sometimes Stupid Mom’ because something happened in my week this week that made me feel a bit of a ‘Stupid Mom’ (well Stupid Mum actually since I am British πŸ™‚ ).

I have always had a strong and close bond with my autistic son (who is now in his teenage years) and usually I am very instinctive in my parenting of him. Autistic or not, I think mother’s just have that intuitive ‘knowing’ with their own child/ren.

Anyway, normally I’m good at predicting what will or will not be an enjoyable activity for my son but this week I got it hopelessly wrong. My daughter was involved in a music workshop at our local Music Conservatory which culminated in an evening concert at the end of the week. The concert was held in a cave, part of a whole complex of underground tunnels that had at one time been used as a secret NATO HQ. The evening included a free guided tour of the tunnels. Now, my son has a passionate interest for anything related to the history of war, the military, and so on and immediately I thought that he would really enjoy taking this tour.

The evening was an all or nothing prospect. The tour of the tunnels led to the inner cave where the concert was being held. It was a case of joining in both parts of the evening or doing neither. I knew that the concert part of the evening was probably going to be challenging for him, because of sensory issues, but I weighed things up in my mind and decided that the enjoyment he would get from taking the tour outweighed the potential discomfort of sitting through the concert. So I went for it and signed us up for the evening. (Of course I also spoke with my son about the whole evening beforehand and asked if he would like to go.)

To cut a long story short, on this occasion I got it wrong, really quite wrong. I don’t know what it was, we’ve done similar excursions with my son before, but on this occasion he was very uncomfortable being on the tour and his anxiety was high. Once we had started on the tour, with one guide, there was no possibility of turning back. It ended up being an hour of my son being very agitated and me being very stressed hoping that I would be able to support him through his anxiety. And then of course we had to sit through the concert as well.

At that point I was playing a dual parent role; on the one hand I was there to enjoy watching my daughter perform and video her part in the performance, and on the other I was trying to minimise the sensory overload for my son. We were sat down on chairs for the concert and he had his head in my lap the whole time. I pulled the hood of his top up over his head and held my hands over his ears to try to buffer the noise for him (except for when I was videoing of course!)

The second the concert finished my son and I were amongst the first to find our way out of the tunnels! Once outside again the two of us were able to breath better and relax.

The point of my telling this story, aside from needing to share my ‘Stupid Mom’ moment guilt, is to make people aware of this kind of invisible stress that both people with autism and their families often experience. My son’s stress during the course of the evening presented itself in ways that I could pick up on (the gripping of my arm, the tapping of his fingers over and over on my arm, the mumbling to himself and so on) but which probably went largely unnoticed by everyone else there. Equally, my stress was running high because I needed to help my son through the evening and help make sure he didn’t get to the point of meltdown from sheer overload. Again, I doubt anyone else there was aware of how much stress and anxiety I was feeling. I’m not looking for sympathy here for either of us, but I do want people just to be aware that these invisible stresses exist in order to foster an understanding and encourage open mindedness.

In the end we both survived the evening, with me making a mental note not to do underground tours again! Hopefully by the time of our next weekend coffee share I can claim to be more ‘SuperMom than Stupid Mom’.

As always, thank you for listening.

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That Friday Feeling

 As I write this post it is a Friday afternoon, the sun is shining and I’m feeling good mostly because it is Friday afternoon which means the week is nearly over and I won’t have to set an alarm when I go to bed tonight. Hooray for that!

It’s been another busy week in my household and I’m looking forward to a quieter weekend. I thought I’d start my wind down to the weekend with a light and short blog post here.

I have the most fascinating and unexpected conversations with my son on a daily basis because the way he thinks is so free. When I say ‘free’ I mean it seems to me that he thinks without any of the kinds of limitations, constraints or preconceptions that most people naturally harbour.

He regularly asks me seemingly out of nowhere questions which then lead us into some highly theoretical ponderings! For example, the other day he asked me “Mummy, if a house had wings and it could fly from location to location, would it be classified as a building or a vehicle?”

As you can imagine, I can honestly say I have never before thought to wonder about many of the things he asks me! πŸ™‚

I always go with the flow when he asks me such questions and we have the most fun conversations. This is one of the nice qualities of autism. Not only is my son a highly creative and innovative thinker but he is also inadvertently teaching me in the ways of thinking outside of the box too. Through him I am learning to see things from alternative and new perspectives and I feel blessed that I have grown so much as a person because he is my son.

And the photo attached to this post? Well, I didn’t fancy spending a lot of time searching online for an image of a house with wings to accompany this post today so I just had a quick look through the drawings on my son’s desk and picked this one at random to use. I have no idea what the creature is and my son is at school right now so I can’t ask him. He loves to draw and our house is littered with his drawings, but more of that another time.

For now, happy Friday and I hope your weekend is a good one.

Fancy A Cuppa With Me?

I recently stumbled upon the #weekendcoffeeshare hashtag here on WordPress and loved the idea. So today I am posting this, my first Weekend Coffee Share post. I hope you enjoy the read!

If we were having coffee I would invite you to sit at my family dining table amidst the lego pieces, homework folders and other paraphernalia that is family life. I would offer you a coffee (or tea if you prefer) and bring it to you in one of my beloved Emma Bridgewater mugs. I would chat to you about what’s on my mind and this is what I would say:-

This week I have spent a lot of time reading articles online about autism. It’s great that this month (April is Autism Awareness Month) the internet is flooded with articles, information, and conversations about autism. All of it helps to promote awareness and get people talking about the condition.

As a mother of an autistic child, I’m really passionate about trying to do my bit in helping others understand autism and to do some myth busting along the way. Normally I approach this with enthusiasm, but this week I have been struggling with a bout of hopelessness for two reasons.

Firstly, amongst all the great information, I also read a lot of things about autism that make me angry, upset and despair. Some of it is just plain ignorance but a lot of it stems from a sector of the autism community that has a fundamentally different attitude towards autism than mine.*

This week I have been feeling very much that, let’s face it, I’m only one woman with one voice. How on earth could I possibly think that anything I add to the autism debate is going to make any difference? How can I, as an individual, help to change attitudes?

Secondly, I realise that I have a mountain to climb in teaching other people what autism really is. How can I expect to teach other people in a straightforward and concise way what it took me years of research and first hand experience of to understand?

Autism is complex and multifaceted. It’s a spectrum condition with each and every individual on that spectrum occupying their own unique position within it.

When my own child was first diagnosed with autism I knew virtually nothing about it. In my head all I could think was ‘does this mean my child is going to be some kind of Rain Man type genius or does it mean that he will never have proper speech and will sit on the floor rocking back and forth all day?’ My thoughts at the time represent, I think, the two main stereotypes of what autism is.

Of course, my son isn’t either of those stereotypes and now, more than ten years further down the line, I understand in great detail what autism really is.

But back to the task ahead of me, how do I help pass on all this knowledge and understanding that I now have of autism? How do I help society be aware that a little understanding can go a long way in making a difference? And how do I help to bust the autism myths and spread the facts?

I guess, as with most things in life, the only way to climb the mountain is one step at a time. Whilst I can’t get my message across to the whole world, I can at least try to reach out to the family, friends and online followers in my own world and hope that, if only in a small way, I can make a difference.

Thank you for reading.

P.S. #weekendcoffeeshare is hosted by http://www.parttimemonster.com

Unfortunately I still haven’t entirely mastered the more technical side of blogging and so can’t embed links or use pingbacks etc! But you can link up your own coffee posts or read others via the link button on the above blog or use the #weekendcoffeeshare hashtag on WordPress, Facebook and Twitter.

 

* For the record:
– I DON’T believe that autism is a disease, a disorder or an epidemic

– I DON’T believe it is caused by vaccines

– I DON’T believe that autism needs to be ‘cured’

– I DO believe that autism has a predominately neurobiological and genetic basis

– I DO support neurodiversity and the belief that autism is simply a non-typical neurotype but no less valid than any other

– I DO believe that society can only benefit from the different perspectives on the world and creative approaches to life that the autistic brain offers

My Walking Encyclopedia

One of the most amazing things about my autistic son is his ability to soak up and retain information about anything and everything in an encyclopaedic kind of way. I don’t even know half the time where he is getting so much information from, yet alone how he stores it all in his head. His knowledge covers a huge array of subjects and is often pretty obscure stuff!


This week my eight year old has been learning all about the countries El Salvador and Paraguay in his class at school. Yesterday I took his weekly homework folder out of his bag and was enchanted to see that he has worksheets for language and maths that use the Mayan system for letters and numbers.

“Have you seen your homework worksheets this week?” I called out to my little one, “They are all based on Mayan letters and numbers.”
Immediately my autistic son piped up with Β “Did you know the Mayans were the people who first created the number zero?”
“Errr, no, I didn’t know that.” I replied.

“Well they were and also the Mayans………” and with that he was off with all kinds of further information about the Mayans, all from the top of his head.

In my house I am often to be heard saying “How do you even know that?” Β It is truly staggering to me.

Different NOT Worse

I’m a day late with this post for Autism Awareness Day but hey, it’s still Autism Awareness Week and Autism Awareness Month! πŸ™‚

To be honest the reason I didn’t get a post written yesterday is because I didn’t know where to begin, there are so many ways to approach an Autism Awareness post. Yesterday I was online most of the day reading and reading some of the many great posts out there on social media for Autism Awareness Day. One of the recurring themes I read was the debate over whether the day should be about Autism Awareness vs Autism Acceptance. To my mind it’s just semantics. Of course what is needed is both awareness and acceptance but I think that the two go hand in hand. For me it doesn’t matter what the day is specifically called, what matters is that information is getting out there and that understanding of autism is increased. Anyway, here’s my contribution:-

 

Historically people with autism have been treated as if they were in some way deficient or lacking as compared to the general population. Therapies have focused on trying to ‘normalise’ behaviours and traits in an attempt to help autistic people ‘fit in’.

Thankfully times are changing and there is a realisation now that what society ought to be doing is appreciating the differences of an autistic brain and harnessing and utilising it’s strengths.
Autistic brains are different NOT worse. To use a simple analogy; it’s as if most of our brains are running on Windows but the autistic brain is running a different, much less common operating system. Both systems work but they work differently.

One of the key areas of difficulty for autistic people is social interaction and communication. This means that in conversation an autistic person may appear (on the face of it) to be a bit odd or stupid or lacking or weird. (Blunt words but that’s the harsh reality). But it’s a classic case of ‘don’t judge a book by it’s cover’. Behind the sometimes awkward exterior all kinds of amazing things are going on.

Test after test after test has highlighted certain areas in which autistic people are far superior to the rest of us. They have intense focus, an eye for detail, superior memory, superior pattern recognition and ability to process complex patterns. They have a superior ability to carry out repetitive tasks with careful execution. They are perceptual experts and problem solvers. In short, not only are they capable of work but in certain fields e.g. Software testing they actually far out perform NT’s.

What’s more, it’s not just in the tech. realm where the autistic brain excels. Contrary to popular myths, autistic people are also incredibly creative thinkers. To illustrate; if you give people a paperclip and ask them to name all the things that it could be used for, NT’s tend to think of all the obvious and easy answers first and then move on to more innovative users whereas autistic people jump straight in with ingenious responses.

It’s their very ability to think differently and unusually to the norm that will make autistic thinkers invaluable when it comes to solving problems in areas like climate change and alternative energy sources. The world needs people who are able to conceive of radically new solutions. The world needs autistic minds!

As the famous Temple Grandin put it “After all the really social people did not invent the first stone spear. It was probably invented by an Aspie [chipping] away at rocks.”