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.

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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.

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! 🙂

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.