“Give Me My Challenge”

Another weekend, another coffee. How have you been since our last chat?

For my part, I’m still reading the book that I talked about in my last post so no follow up post about that just yet. In the ย meantime I had a further idea. Story telling is a very powerful way of communicating and when it comes to autism, personal stories can give a lot of insight and are a great way of spreading understanding. I listen to a lot of podcasts and from time to time stories about autism turn up on them. I thought it would be a good idea to post some of these podcast stories here on my blog in between the book posts I plan to make.

Today I’d like to share with you ย ‘The Boy Who Made Waves’ by Joe Blair. (This link (below) is from WYNC Snap Judgement podacst Episode #803 ‘Run For It’.) Joe is the father of four children, one of whom has autism. This particular story of his about his autistic son is so beautifully written and is full of honesty, truth, tenderness and compassion.

To me this story speaks of the deep intuition and creativity involved in parenting an autistic child and also of the wonder of it. All of us are unique indiviuals, but autism sort of adds an extra layer to that uniqueness. Joe Blair describes his son as “The source of joy and of concern…” which of course is the case with any child, but particularly so an autistic one.

This is one story, of one autistic child and one family. There are countless others and every one will be unique. I hope you enjoy listening to this one as much as I did.

“He will make the world understandable in his way.” – Joe Blair

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Meetings and Those Moments.

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If we were having coffee today I would be grateful for the chance to sit down and chat with you over a nice hot beverage. It’s been a busy week for me but today I have space to relax for a while and share a story with you.

On Thursday I had a meeting at my son’s school. Let me tell you something, when you’re the parent of an autistic child life becomes one long cycle of meetings, appointments, phone calls and administration. It’s all for a good purpose of course but it does get exhausting at times.

The meeting I took part in this week was a particularly important one to discuss my son’s future. He is in his final year at the school he is currently attending and we need to hatch a ‘What next?’ Plan for him. For me this is a stressful time and there are difficult decisions to be made. There were seven of us in that meeting, all of us have been working with my son in one capacity or another and know him well. Still, at this point we are struggling with ideas for his immediate future.

In the midst of the seriousness of the discussion there was a moment that really made me smile. My son’s teacher was describing where he is at in terms of his development at school and she mentioned how well he contributes to class discussions and how vast his general knowledge is. “In fact” she said “he is always teaching me things that I never knew”. At this everyone else around the table, myself included, nodded their heads in agreement and laughed knowingly. My son is a fountain of knowledge, he teaches everyone he meets things they never knew! ๐Ÿ˜Š

That is one of the amazing things about autism. Autistic people often have what is described as ‘scattered skills’. Neurotypical people tend to be relatively consistent in their abilities across skill sets, but autistic people tend to have large variations in abilities from skill to skill. Thus autistic people can perform significantly below average in some areas, average or thereabouts in others, and significantly above average in yet other areas, all at once.

The shame of this is that people tend to focus heavily on the things that a person with autism struggles with, and when they do this they are overlooking and missing out on the many areas in which that person may have remarkable and exceptional strengths. I hope to encourage people to look more at the strengths.

The #Weekendcoffeeshare  is hosted by Diana on her blog Part Time MonsterFollow the link to read other coffee share posts and find out how to join in yourself. 

Underestimate

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Day Three: One-Word Inspiration

For this assignment I have chosen the word Underestimate as my one word inspiration.

When my son was first diagnosed with an Autism Spectrum Disorder (ASD) at the age of four I feared worst case scenario. I imagined his future and assumed all the things he would never be able to do or achieve. As time went on I began to learn how wrong I’d been to assume these things. I had underestimated my son’s capabilities and I’d underestimated autism.

At the beginning of our own autism journey I didn’t know autism and I didn’t understand it’s potential. Alas, I suspect that this is the case for most people who have no first hand knowledge of autism. It’s understandable of course, but the shame of it is that it means that both autistic children and autistic adults are persistently underestimated by society in general.

Take employment for example. The statistics for the number of unemployed autistic adults make for depressing reading. Autistic people are just as likely to have skills that are valuable in the workplace as non-autistic people but their skills are often underestimated. Why? I believe that one of the main reasons is because the interview process is naturally biased in favour of non-autistic people. Potential employers are likely to underestimate the actual skills an autistic person has because they don’t see beyond the ‘awkwardness’ or ‘quirkiness’ of the interaction that takes place in an interview setting. A standard interview situation plays straight to all the weakest skills of an autistic person and doesn’t allow for their strengths to be showcased.

On the flip side of the coin, I think that the non-autistic world often underestimates the depth and nature of the challenges that an autistic person has to manage in life particularly where the autistic person has learnt how to mask their inner self and mimic neurotypical behaviours in order to assimilate.

I’m just skimming the surface and over simplifying the issues I’ve touched on here (it was either that or writing a thesis length post! ๐Ÿ˜‰ ) but these are my initial thoughts in response to the word prompt.

 

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 ๐Ÿ™‚ ).

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.

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! ๐Ÿ™‚

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.

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 ย “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?” ย 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! ๐Ÿ™‚

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.”