I have always thought of the word “reflections” as referring to something beautiful.  Visions of a tranquil river, with native flora reflected upon its glassy surface, would come to mind.  Or a reflection would remind me how wonderful it is to remember a special moment in time and relive the memory in my mind.  Whilst both of these meanings are still beautiful to me, I now look upon the word “reflections” as a message.

The message from my reflections has come from many weeks of living in an acute state of vigilance.  Caring for someone with FASD is at the best of times challenging, but a situation that occurred several weeks ago made every aspect of our son’s FASD challenges very difficult. I struggle to think of a moment when I have been at ease, which has resulted in effects on both my mental and physical health.

This is not the first time a situation like this has occurred which has had the same or similar impacts.  Nor is it the first time such events have had an effect on my body, which is why I was thrilled to learn that NOFASD Australia had teamed up with Eileen Devine, to produce a webinar about self-care and carer resilience.  As I watched the webinar, I was sure that Eileen had based the entire content on my own situation.  I printed off the resource to prepare my own personal plan to care for and nurture myself.  I was excited at the thought of improving my own well-being.

Before I could even consider making the plan however, a challenging situation that impacted our son, who is living with FASD, occurred. A family member needed accommodation and support, after having lived through months of bad luck and bad choices. The solution was to live with us whilst sorting through the difficult issues.  Whilst we could have said no, it really wasn’t a choice as this person needed the support and was unable to find help elsewhere.  In providing this support, I knew that it was going to take a lot of time and energy and that it would increase stress levels. So, the dynamics in our house changed and immediately our son’s anxieties began to increase.

Our home is our sanctuary, but this has not come easily.  In order to obtain some sort of sleep, we have locks on anything that could be problematic.  Things such as fridge, freezer, pantry, knives etc.  We continually aim to live in a minimalist environment to ensure there are less places to hide bits and pieces which could be stashed for a later date and used for something that might be unsuitable or even dangerous. Things such as paperclips, we have learnt, are a great tool for picking locks.  Whilst ours are locked away, it is unbelievable just how many paperclips are dropped on footpaths and can be discreetly picked up, then securely placed in a pocket, without our knowledge.  Vigilance is still necessary, but we have generally been able to function in our own “normal” way in our home.

Immediately upon our family member’s arrival, our son’s anxiety escalated, and his reactions were out of control in response to very small triggers. For those caring for someone who has FASD or who has lived experience of this disability, you will know that this is not unusual.  However, it was more intense than ever.  His eyes were glazed, he was extremely tired, hyperactivity was at a very high level and agitations were constant, often ending in aggressive behaviours.  All of these things were not unusual, but they were occurring far more frequently…. signs that our son was gaining access to something new and different. But what, when, how and where?  Everything is under lock and key that could possibly have some impact upon his behaviour.  The house needed to be searched, so I sent our son off with my husband to run some errands and I frantically searched every known hiding space. His hiding spaces are not where I would ever think of myself, but with our son’s high IQ, he is very creative. Behind pictures, in air vents, in light shades…. I looked everywhere, but nothing!!  Knowing that there was something, but unable to locate or identify it, left me with a feeling of despair, because whatever it was, it was clearly impacting him significantly, which in turn impacts our family.

A few days later, in the wee hours of the morning, I heard noises coming from our guest’s room.  Our guest starts work early and should have been long gone. I heard nothing for a while and thought I had imagined it. All was quiet.  Suddenly noises again!  The situation was not adding up, so I quietly got up and then saw the light on in our guest’s room, but their car was gone.  I quickly unlocked our guest’s door and saw our son playing video games that were absolutely unsuitable for him.  He sat there motionless and pale.  I stood there shocked and in a state of disbelief.  How did he do it?  How long had this been happening?  What was going to happen now?

Inside I was seething!  All my efforts to eliminate exposure to such media, to reduce the negative effects on his behaviour were destroyed.  I felt betrayed by both our guest and our son. An investigation revealed that this situation had been happening since our family member first arrived.  Our guest didn’t think it was necessary to lock the bedroom door whilst showering but would however lock it before leaving for work.  Our son who wakes at the slightest sound, had quickly learnt this routine and took full advantage of it, by hiding in the bedroom of our family member and waiting silently until the room was empty.  The perfect plan!

Knowing that this would have significant impacts both short term and long term, I braced myself and soldiered on, weathering the storms. And the storms came!  In that short time, our son had become obsessed, possibly addicted to these games.  He was desperate to obtain his “fix” and would creep around our home during the day and night.  He was desperate for anything to satisfy his craving and we were overwhelmed by the additional impacts upon our lives.  The acute vigilance was never ending.  Problem behaviours were, of course, extreme. My emotions roller-coasted from seething, to distraught, to desolate, yet it was important to keep a calm outer shell, to avoid further dysregulating our son.  I also had varying feelings towards our guest.  I was annoyed and upset that the importance of ensuring doors are locked ALWAYS had not been recognised.  All my emotions were bottled up.

Then came time for our planned holiday. We desperately hoped it would provide us with the opportunity to heal from the events of the last few weeks and allow us time to practice some self-care and build resilience.  But for me with these events, it was too late.  The plan I had promised myself, that I would develop after watching Eileen’s webinar, had not even been started.  I was always too busy, too overwhelmed or too tired.  But as I now sit on the edge of a river during our holiday, enjoying unconditional love from my beautiful dog, I reflect upon the events that have brought me to this state where my health has really taken a beating.  I now realise that my reflections are sending me a message and it is reaching me loud and clear.  I need to be ready and prepared for the NEXT situation, because the reality is that it will come!!

The only time to build my resilience and plan self-care for myself is…… NOW.

 

NOFASD recently partnered with FASD specialist Eileen Devine to produce two webinars on Building Carer Resilience. The first webinar can be viewed below. To learn more, and to view NOFASD’s other resources for self-care, follow this link. You may also wish to download the Building Resilience Worksheet which Mama Maremma talks about in her blog.

 

Mama Maremma is a full-time carer for her child who is living with FASD. She likens herself to the Maremma breed of dog who are renowned as guardians and protectors.

Read more of Mama Maremma’s blogs.

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