Autism Awareness Day #7

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I recently had a revelation; a moment; an epiphany! I was attending a conference which had a focus on mindfulness and self-awareness.  One of the facilitators requested that we remove all items from off the desk top with the exception of our worksheet and a pencil.  I dutifully put everything away asrequested and thought … how nice to be given permission to remove all distractions and just to ‘be’ in that moment.  Or so I thought …

I then began thinking about my mobile phone which was now in my handbag. What if it rings? What if someone needs to get me urgently and I’m just disregarding my phone ringing in my handbag? I entered into a very genuine struggle with myself about it and in the end I put my phone on my lap so that if it did ring, I’d feel it vibrating.  I felt reassured by this.

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Later on, in a quiet moment, I thought about my phone dependency. What was it about? Why could I not separate myself from it?  In a word … anxiety!  It was anxiety – anxiety mostly about the boys.  What if something happened and they needed me? Or what if the school was ringing because James was really upset or Tom was anxious about something?  In the school’s defence here – they only ring if there is a genuine need to ring and I so appreciate it when they do.  I place no blame with them at all.  It’s me!

I think this anxiety comes from years of genuine levels of worry about the boys. In their own way, they were both really difficult babies and toddlers.

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James at 11 weeks of age. Who could believe that such a beautiful looking child could cause so much worry? This was the “I am obsessed with looking at my fist” phase.

There are no surprises really about where the anxiety stems from. As a baby James was a breath holder.  He would hold his breath until his lips turned blue and he went limp.  He was a head banger, always covered in bruises particularly on his forehead.  He was an escapee.  He would climb out high windows and launch himself out of them headfirst down onto the concrete below. He was always covered in bruises and scrapes, and I always needed to be hyper-alert lest he escaped.  He was a runner.  He would run away from you and not even look back.  He was fearless and reckless.  He was a self-harmer.  He would bite his fingers and hands; he would head bang; he would bite the insides of his cheeks and chew his lips until his lip was hanging open.

James had enormous separation anxiety with me. He only ever wanted me and he would become extremely distressed when we were separated.  He disliked other people holding him or getting into his personal space.  After events that required a lot of interaction with others or where he may have experienced stress such as the doctor’s, we would often experience 24-48 hours of really difficult behaviour – crying, general agitation, meltdowns.  James also experienced swallowing issues and would have regular choking fits that took years off my life, I’m sure.  On one particular occasion James was choking on watermelon. He was about 18 months old.  I did all the ‘text book’ manoeuvres without success.  By this time he was blue in the lips, so I stuck my fingers down his throat and managed to manoeuvre the piece of watermelon out of his mouth between two fingers.  He then vomited profusely and he was fine.  I remember just sitting on the floor for about ten minutes after that just experiencing wave of gratitude and relief with my heart just about pounding out of my chest.  I’m absolutely cool in the moment of crisis, but after it’s all finished with, I will then allow myself a ‘moment’!

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Thomas sleeping under the trees in our back yard. Around 14 weeks of age. What a cherub!

Over time the self-harming behaviours, the attachment issues, the difficult behaviours – all led to an increasing level of anxiety in me and then we had Thomas. He was the most beautiful, happy, chubby little Buddha baby.  He was so different from James as a baby.  But when Tom hit about the 6 month mark things started to fall apart with his sleeping to the point where by the age of just under 1, he was waking up to 10 times a night.  He didn’t want me to hold him, he didn’t want a bottle, he didn’t seem to want anything – it was almost like night terrors.  He would throw himself to the floor and scream and cry.  You could do nothing to distract him from it except on a good night an episode of “Thomas the Tank Engine” might break the spell.  I think I really was quite possibly certifiable during this stage of his development which lasted until he was about 3-4 years of age.  Sleep deprivation is absolutely cruel.

Until probably some time in the last 12 months, every time I would leave the boys, I would receive desperate phone calls to return home or at least one or two phone calls due to some event happening. I’d be at dinner with friends, and Tom will have woken and fallen apart, and then completely lost his mind because on top of whatever else was bothering him, I wasn’t there either!  I don’t know how many hasty exits I’ve had to make from various events but it would be a lot.  That has all settled now for the most part but I think that anxiety still remains – hence my anxiety about my mobile phone and needing to be contacted.

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James was just two years old when Thomas was born. It was a very difficult developmental stage for James however all the preparation we did with him in preparation for Tom’s arrival seemed to work. He was a gentle, caring and loving brother. Tom and James have always been great little mates. Of course they fight and bicker like all siblings do, but it’s clear that strong bond is there and was there from the moment they met. This is something I am immensely grateful for x

I’ve long since been medicated for anxiety and have had regularly psychology since James was born. The psychiatrists and psychologists I’ve interacted with over the years with the family have all said that living under a significant amount of ongoing stress can cause Post Traumatic Stress Syndrome.  I don’t doubt it!  I have long identified and recognised the issues I have around anxiety.  I have had episodes of tachycardia (racing heart) and some specialists made suggestions about panic attacks (still not entirely sure about that one!)  I have been so anxious and my head has been so crowded with thoughts that I’ve not been able to tolerate even listening to music or having the radio on because my head was already just so very noisy!  I have no trouble going to sleep most nights but I’ve had periods where I would wake almost with a start and a flood of adrenalin in the middle of the night and then been unable to sleep again, my mind abuzz with a million worries.

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Anxiety has not impacted on my ability to work. I love my work, passionately and in many ways it has been my saving grace.  I work with the most beautiful people; beautiful families and my role/s provide a challenge which I love.  I feel that the uniqueness of my personal circumstances brings that little bit extra to what I do as well … and I include having an understanding of anxiety in that as well.

Over the last 24 months my general health has not been great at all. Some of this has been purely bad luck but then I think if you believe in holistic medicine, I think in the end that something has to give when you constantly exist at high levels of anxiety.  I’ve had a lot of time to really think about that and talk through that.  I think that so many parents suffer ill health because they struggle to make time for themselves and their own health needs.  I resolved last year to make my own personal health – physical and emotional – a much greater priority. As a whole family we are doing this. I feel I’m like a learner driver with this still.   I’m definitely learning, and making some progress, but the car is certainly taking a few hits along the way.

As parents I’m sure we can all relate to this worry we have about our children irrespective of their needs or functionality. From the day these beautiful children come into the world, that underlying worry begins.  It was such a shock to me! The magnitude of that worry and the fact that I would always worry about them to my dying day (and beyond, no doubt) seemed just completely unsustainable.  And on top of this normal and natural parental concern, I had my two beautiful but particularly worrisome little cherubs.  So my mobile phone and I have a few ‘issues’ we need to work through together, I feel.  Anxiety management will be a work in progress for me, I think.  But meanwhile, I hold the following quote close as it really resounds with me.

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7 thoughts on “Autism Awareness Day #7

  1. Oh I hear you, Lib! I have a pamper/beauty voucher from my sister from my Birthday this year that I still haven’t used! I don’t really know ‘how’ to relax…it is a skill isn’t…like good eating etc…Reflection and honesty is step 1 xxx

  2. Lib, I don’t know how you’ve done it, you’re truly amazing! My take on your phone separation issues. Don’t create more anxiety for yourself about needing to be separate from your phone. If having your phone nearby provides the peace and calm you need to get on with your day then go with it.

    • Hi Jo. I hadn’t really thought of it like that … I’ll think on that further 😀 As parents I think “worry” comes with the territory … it’s just sometimes hard to keep it all in balance and also make time for yourself. I hope all is well there. Your cherubs are just divine xx

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