April 9th. Autism Awareness month continues …

April 9th.  Autism Awareness month continues …

Anxiety.  Where do we even begin with this one?

Most of us have experienced anxiety or stress at some time or another.  I have learnt that there are degrees of anxiety.  There’s being a bit stressed out because there’s lots going on; there’s being stressed because you’re apprehensive about something; there’s stress because the kids are driving you insane; there’s stress due to fatigue and exhaustion; and then there’s so anxious that you can barely function.

I experience anxiety.  On a rainy day I experience anxiety about how we are going to be able to get in and out of school without causing a public spectacle of pole licking, car licking or puddle licking.  I worry about what state James will be in when I pick him up because that sets the tone for the rest of the afternoon and most days I have an audience of hundreds who can witness him melting down.  I worry about taking him to the doctors because there’s a chance that we will be making an all screaming, all deranged, less than gracious exit.  In fact, fairly much every activity we do with James involves anxiety.  My anxiety.

Sometimes at night when I’m lying in bed my heart beats in my ears and my heart feels like it’s going too fast for my body.  Sometimes I feel like I have the weight of a tonne of bricks sitting on my chest. Sometimes I feel like my head is going to explode with the constant worrying thoughts and scripting going on in my head.  Does medication help?  It does.  But I truly feel that living in a stressful environment for such a protracted period has to have some kind of impact on you psychologically and physically.  A doctor said to me once that it’s likely that I spend the majority of my day living on adrenalin – that heightened state – and that at some point, something has to happen to all that excess adrenalin –hence panic attacks, episodes of tachycardia and palpitations.  I’ve leant to manage my anxiety better but it’s a process.

But the other side of the story is James’ anxiety.  James can be so overwhelmed by anxiety some days that he can’t sit in the hall at school – he can’t even enter the room.  This has a flow on effect to me.  First I worry that I’ll be late to work because I know it’s going to take some time to settle him.  Then I worry about leaving him because anxiety is such an awful, overwhelming feeling and I think he should be with me – somewhere safe and loving – when he feels like that.  And when I leave him and go to work I have that awful heavy, feeling in my body about abandoning him and hoping he will be OK.  Then I start every time my mobile phone rings in case it’s the school about him.  It’s truly exhausting.  And I know there will be many of you who will relate to this.

Tom also suffers from anxiety but it presents differently to James.  Tom withdraws and shuts down, something that is really easy to overlook in a classroom situation.  His anxiety is alleviated enormously if you simply talk him through the problem.  The other day we needed to go to the Optometrist for a check up.  Tom was worried.  He said, “Mum – just tell me everything I have to do and say, OK?”  That sums Tom’s anxiety up beautifully.  Once he knew where we were going, who we were seeing, what was expected of him and what would happen to him whilst we were there, he was much better.  It didn’t help with the sensory overload of the room though resulting in him diving off the chair onto the floor and touching and interacting with every surface in the whole room!!! I’ll leave that story for another day!

James recently had to attend an excursion.  He was very excited about it and we did lots of preparation for it.  Tom was really stressed out about the whole thing though.  “Mum, don’t send James on excursion with strangers. Who’s going to look after him? Will he ever come back?  Will James have to have a sleep over – that’s not a good idea Mum!  What if James gets worried and we are not there?” and so it went on … for the two weeks we were preparing for it.  If there are free dress days at school (by the way I HATE, LOATHE and DETEST free dress days!!!!) we have overwhelming levels of anxiety in our house between the two of the boys.  Tom will ask repeatedly, “Mum – are you sure it’s free dress day tomorrow? Did you check with the teacher about it? Are you sure I have to wear green clothes? What if I get to school and the other kids aren’t wearing green clothes?” and on it goes.  By the end of the free dress day itself we are in meltdown central at our house.

Anxiety is a feature of Autistic Spectrum Disorder.  It manifests differently in each individual with autism.  Changes to routines, changes to environment, sensory issues – all these can contribute to anxiety in someone with ASD.  I think that teachers and the general community are developing a much greater awareness about anxiety and ASD; however I’d like this awareness to extend to the family members of those with ASD.  When that parent of an ASD child is at your door for the third time in a week, please approach him or her with empathy and understanding.  We parents get stressed too! And whilst our children receive support from various sources, often we parents are left to fend entirely for ourselves.  A little bit of empathy goes a long way and makes a huge difference!!!

6 thoughts on “April 9th. Autism Awareness month continues …

  1. Oh Libby, every time I am with you or read one of your posts, I LEARN SO MUCH from you as a woman, mother, educator, wife and all the other hats we wear each day. And you are right… Empathy goes such a long way for everyone!

    • Thanks Alissa. I’ve been really thinking a lot about empathy lately. As a society, we don’t do empathy at all well, do we? It is so important to be validated when you’re suffering or just having a rough time of it. People tend to offer platitudes and blow issues off when all you really want them to say is, “I hear you! That sucks!!!” 😀 Big hugs to you and yours xxx

  2. Really liking your definition of anxiety and stress. Just understanding the scale of anxiety – being able to extend it from somewhere you’ve been yourself – and imagining how that new level would affect absolutely everything in your life. I know sometimes we’re all too busy to really listen when you probably want to talk… but hey “I do hear you – and it does suck!” Love you Lib.

    • You explained that really well. We do all experience it ourselves but for these cherubs it’s taken to a whole higher level. You give me lots of support in many ways and I’m very appreciative. Love you lots xxx

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