“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  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  ‘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

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! 😊

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. 

Summer ‘Holidays’

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Welcome to another #Weekendcoffeeshare post which 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. 

 

If we were having coffee today I would have trouble deciding whether we should sit inside or outside, the weather is neither here nor there right now which also reflects my mood at the moment. As we sat chatting I would have to tell you that I can’t believe that the school summer holiday is now nearing an end and this is the first coffee share (the first post of any sort) that I have managed to get written this summer!

It’s the same every year. As the days get longer and warmer and the summer holidays are on the horizon I get this vision in my head of sunshine fueled days with plenty of time and freedom for reading and writing and relaxing in general. You would think I would have learnt by now that that’s never quite how the holidays pan out, I mean for starters the summer weather in my part of the world nearly always dissapoints! And then there’s the children……

This summer I have been reflecting on the whole notion of having a summer ‘holiday’ when you have an autistic child. I don’t want to over dramatise, there are worse things in life for sure, but I did find myself thinking the thought that when you have an autistic child there is really no such thing as a ‘holiday’ or time off. It’s not as if you can take a trip somewhere and leave autism behind for the week; it always comes with you.

Also, due to the nature of the condition, taking trips and travelling with an autistic child, rather than being a fun adventure, can often be stressful and hard work. New places and experiences mean uncertainty. Sometimes my son is absolutely fine and really enjoys himself but other times he finds it all too much and is very unsettled, uncomfortable or has meltdowns. For me as a parent I find myself in an almost constant state of alert trying to be vigilant for situations that may be too much for my son, with the result being that even if everything turned out just fine, I find myself exhausted from anxiety related stress. The stress mostly comes from the fact that it’s hard to know what might or might not be a trigger for my son and so I’m constantly having to be on the look out for potential triggers and make guesses.

Lack of normal routine is also a problem during holiday periods. As a family we tend to drift away from our normal bed and waking times during the holidays. Whilst my other two children can quickly shift back to their regular sleeping times once school starts again, my autistic son can’t. The lack of routine when school is out plays havoc with his sleeping patterns. This leaves me with the options of (a) giving myself a bit of time off from managing his sleep routine and letting him be awake/asleep at random times and then having to put in the hard work as the new school term approaches to shift his sleeping back to a routine OR (b) just sustaining my normal level of hard work in keeping him on a steady sleep pattern throughout the holidays, thus not getting a break or rest myself.

This year we didn’t make any summer travel plans as such. We did however spend some time visiting family (since we are an expat family most of our travels involve going back ‘home’). Whilst it’s nice to be back home and spend time with family, it can also be another source of stress. Trying to manage my son’s behaviour whilst staying in other people’s homes and feeling that your parenting is under the spotlight (even if in reality it’s not, that feeling lingers over me) is again a tiring situation. Our normal routines and coping strategies are sometimes hard to implement in someone else’s home and environment.

That said, I recognise that much of my stress, anxiety and tiredness is self produced. I worry a lot about potential situations that may arise, about my son being unnecessarily distressed if we misjudge a situation and about the judgement of others if a situation were to arise. I try to think ahead and spot potential triggers for my son in order to avoid them which is an energy draining way to live.

This summer we did have a few family days out that were not the best with my son, the photos from one trip in particular in which he is scowling in every single picture taken tell the tale! But there were the good days too, most notably the day we spent at Dover Castle when they had a special Roman Weekend event. It was a planned trip arranged especially for my son and, as we had hoped, he really enjoyed it and the day was a success despite the awful weather. All day long I watched as my son interacted with the Roman  experts; I stood back watching him ask questions and then supply the answers himself, I watched him share knowledge with the experts rather than just take knowledge from them and I watched as the experts looked in turns surprised and impressed at his knowledge. I smiled to myself at this familiar situation, this ‘who is teaching who?’ dynamic that I have witnessed so often. It is at these moments that my son, with all of his infinite brilliance, shines so brightly.

Some Days

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If we were having coffee I would have to warn you that I’m not going to be the best company this week. Normally I’m an upbeat, ‘glass half full’ sort of person but this week I’m struggling to be cheerful.

“What’s up?” I hear you ask. Well, firstly Brexit and the subsequent fallout. I am British and passionately pro the EU. I’m really upset that the referendum result was Leave and angry about it on so many levels. I spent the weeks leading up to the referendum doing a lot of shouting at the TV as both sides in the campaign delivered lies and dubious statistics and have spent even more time since the result getting cross and frustrated at the debacle that has followed. But enough politics.

“What’s that you say? What else is weighing me down this week?” [ You’re being so kind, I do appreciate you asking! 🙂  ]. Let me copy below the update I posted on my Facebook page yesterday:-


“Some days it’s fine. Other days it’s tough, just really tough.

By 7:45 this morning I was battle worn and exhausted. I know that something unsettled my son yesterday and that his behaviour this morning is a result of him processing that, but I have to guess what that thing is as he can’t communicate it to me. In these situations, sometimes I can work it out and other times I’m clueless. Today I’m clueless. I have no option but to ride this one out.

As I sit here feeling sorry for myself, I’m painfully aware that whatever difficulties I’m dealing with, the struggles my child is facing are so much harder. And that’s the hardest thing of all to know.”

 

I think the first line of the post above says it all; some days it’s fine (most days really) but other days raising a child with autism is tough, tough in practical terms but mostly tough emotionally. That said, the same is true of raising any child. I was listening to a podcast this week which talked about how parenting has fundamentally changed in recent generations and how nowadays parents are very invested in the ‘happiness’ of their children. As parents, we have a tendency to feel that the sole responsibility for our children’s happiness in their future lives as adults depends on us doing all the ‘right’ things throughout their childhood years. When you have a child with autism, this responsibility feels that little bit bigger.

And… if we were still drinking coffee together, this would have turned into more of a sleepover by now since I started writing this post over 24 hours ago! That’s the thing with being a mother, some weekends it’s hard to find enough consecutive free minutes to write a whole post in one sitting.

The good news however is that since I first started writing this post my mood has changed considerably for the better. 🙂


Great Autism Quotes

Day two: Write a List  

I was very happy when I saw the assignment for Day Two of this course; write a list? don’t mind if I do! I love lists. From the ever present on my kitchen counter To Do list, to the handwritten lists I keep of all the books I read, my life is full of lists. There is something very satisfying in making lists I find.

WordPress provided participants with a list of topics to choose from for this task but I have decided to go my own way and write a list that fits with the topic of my blog. So, I present to you my list:-

Some of My Favourite Autism Quotes

 

  • “If a child with autism has voluminous knowledge about a single subject, why is that an ‘obsessive interest’ rather than an ‘expertise’?”  ~ Ellen Notbohm

 

  • “Autists are the original square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work, it’s that you’re destroying the peg.”  ~ Paul Collins

 

  • “Different thinking is where progress and invention and discoveries lie.”   ~ Temple Grandin

 

  • “Autistic reality is of no less value or truth than non-Autistic reality.”  ~ Jeanette Purkis

 

  • “Cherish the children marching to the beat of their own music. They play the most beautiful heart songs.”  ~ Fiona Goldsworthy

 

  • “Motherhood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding he is exactly the person he’s supposed to be. And, if you’re lucky, he might be the teacher who turns you into the person you’re supposed to be.”  ~ Joan Ryan, The Water Giver

This last quote from Joan Ryan is not directly about Autism, it’s a reflection of her personal journey with her son and his recovery from a near fatal accident. I find it to be a beautiful quote about the truth of motherhood in general though and it feels particularly poignant to me as a mother of an autistic child. My son has definitely been a teacher to me.

Thank you for reading my list, I hope you can take away something from it.

 

John Boy et al


If we were having coffee I would say this weather is too nice not to sit outside, come and join me in my garden and shall we make it iced coffees today?

Next I would apologise for not having coffee with you last weekend. It’s holiday time in my part of the world and I took a short trip to England with my children to visit family and somehow my intended blog post just didn’t get written. But never mind.

This weekend my thoughts have inevitably turned to Mother’s Day. This is going to sound an odd thing to say, I know, but tomorrow’s Mother’s Day will see me in something of a cultural limbo. I will explain – you see, I am British and in Britain Mother’s Day (the ‘real one’ as I like to think of it 😉 ) falls in March; but I live in The Netherlands where Mother’s Day is celebrated in June, the same day as it is in the USA and other countries.
Now personally I don’t see why I shouldn’t have two Mother’s Days a year but apparently (so says my husband) I’m still only entitled to one a year. I choose to celebrate Mother’s Day on the British date so, for me, this Sunday isn’t exactly Mother’s Day but I’m thinking about it none the less because it is Mother’s Day for so many others.

Yesterday I was reflecting on the differences between the life I thought I would have as a mother (before I was one) and my life as it is now I actually am a mother.

I don’t remember ever not wanting to be a mother. Throughout my childhood and early adulthood it was the only constant and unwavering goal in my life. I just always knew that I wanted to have children.

As a child I used to love the TV show The Waltons, you know, the one with John Boy et al?! Something about a family with lots of children and their kitchen table with all the girls seated on one side and all the boys seated on the other totally enchanted me. I would watch the show and dream of someday having lots of children myself, I mean I was thinking of numbers like ten or maybe twelve children and I’m chuckling to myself now as I type this and remember those kind of thoughts.

Fast forward thirty plus years and I am a mother with three children. (It turned out that three was just plenty! 🙂 ) The funny thing is that whereas I used to have a singular idea of myself as a mother, most days I feel like I am three kinds of mother rolled into one person. I have a seventeen year old daughter, an (almost) fifteen year old (autistic) son and an eight year old son. Of course all children are uniquely themselves, but with my three children there is very little overlap of similarity in any respect. They are at different life stages to each other, have very different personalities and interests and need very different things from me as a mother.

It’s a challenge and hard work and some days, I don’t mind telling you, I fear I’m not up to the task of being their mother, but I wouldn’t have it any other way. This (sort of for me) Mother’s Day and every other day I am forever grateful that I was able to have children and I feel blessed to be able to call myself a mother.

The Weekend Coffee Share is hosted by Diana here on her blog Part Time Monster.

Check out other #WeekendCoffeeShare posts at the above link and also by using the hashtag on Facebook or Twitter, and maybe join in yourself!

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 🙂 ).

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.