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| 'A.J., myself, hubby, forever bonded' |
Brain overload explosion, is the only way to express exactly how my life has been up to this point.
I've always been busy, so many different things going on, that many of the things I really wanted to do were constantly being put onto the back-burner; while even the things I needed to do were being dealt with in an all-be-it 'a-little-at-a-time' 'just-enough-to-get-by' manner.
I won't deny I wouldn't have changed most of what I've done, when knowing those who needed me were given the love, support, and focus they required to grow and progress forward in a positive loving environment.
Having gained the knowledge and experiences was also something that helped me to personally grow, and become more confident and empowered.
Being able to push aside insecurities, to completely believe in myself.
To forge my future, with the confidence to make positive changes, presenting my achievements, with the focus to strive towards gaining my own hopes and dreams.
Something I never thought possible!
Yet at the same time I still struggle with the whole process of prioritising myself.
Some of this may be the little voice inside my head telling me I shouldn't be doing things for 'me' when I have so many others depending on me first. I've never allowed myself to come first, it feels strange, maybe even a little wrong, I guess it's more to do with having spent so long putting myself last.
2019 reflections....... how would I sum it up for you!!??
We have had the most difficult, and yet in other ways, still, a very rewarding year.
As most of you already know, I am the prime carer for my autistic grandson A.J. after we gained custody when he was only 2 years of age.
My husband and I provide for him in every aspect, from being his full-time parents, supporting his progress, assisting with his continual transitions.
While I personally also organise planning, management, and involvement of his NDIS, and his needs with the therapies/appointments and everything that goes along with it.
A.J. is diagnosed with - ASD (autism spectrum disorder) level 2
he also struggles with -
ADHD - combined
Generalised and Social Anxiety Disorder
Sensory Processing Disorder
Sleep Initiation Disorder
-with challenges relating to Executive Functioning, Pragmatic Comprehension, receptive/expressive language delays,
-and medically he is coping with Thoracolumbar Scoliosis
The impact of his ASD and Anxiety symptoms are brought on by pressures from social interactions, school environment and study pressures, as well as general life involvement, and so much more.
Most of us would not realise the internal struggles he faces daily, or comprehend the process he has to go through to even get to do the basics of what we take for granted.
Yet he has still managed to progress forward during some very difficult and challenging life stages to present the composure he displays to the 'outside world'.
This is all evident due to his continual hard work, dedication, and never-give-up spirit, with assistance, supports, and therapies, to become the well rounded confident creative teen, who we are so very proud of, that we all see today.
I'm also a non-official carer for my husband with PTSD.
Post-traumatic stress disorder (PTSD) is a mental health condition that's triggered by a terrifying event — either experiencing it or witnessing it.
Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.
So many people don't understand or accept this diagnosis, the 'invisible disability'.
We have faced a spectrum of responses, misunderstandings, and expectations regarding PTSD, and this can then triggers more stress and anxiety.
Adding to this he has additional health issues suffering from due to the field of work he has been in, resulting in a request from his medical team to change his profession,
this is vertually impossible to do .
......and that there lies the problem.......
While still being the prime care support for A.J. and hubby, I am also struggling with my own health concerns. This has seen me facing the past 15+ months continually seeking medical supports, with tests, medications, referrals, and more, all with no resolutions.
Among the diagnoses is Meniere's Disease, explained simply as a inner ear issue,
- with symptoms from ringing/buzzing in the ears for hours/weeks or longer at a time, intense headaches, loss of balance or vertigo, to the point I feel as though I'll be physically sick.
Having no actual complete treatment or cure, with what local medical supports I could or should access being non-existent,
therefore I chose to source essential oils to minimise the symptoms as much as possible,
at least enough to push through the day.
With all this going on I felt I needed to do something for me, some down time, something that gives 'me' some fulfillment.
That came in the form of study, returning to studies and achieving my Cert 4 in Community Services.
This gave me time to add to my knowledge and expand my experiences, to even better support my community, in the way I have done during the past 7 years.
No matter what 2019 brought, the challenges faced, the achievements received, opportunities missed, we are still here, we are alive.
As a family we have faced so much physically and emotionally, things that stir up many mixed feelings, although when thinking all was done and dusted for the year, we began to face the effects of the massive fires that were ravaging our country.
After weeks of smoke, embers, ash continually covering our hometown, including our own home and yard itself, inhaling at every minute day and night, by December we knew our town was in the direct line of the fire attack.
After weeks of uncertainty, the fires entered our gully and surrounded us, the mountain behind our home was unsafe and we were evacuated for our own safety, returning the next day to find the mess and mayhem.
While our home was saved by the tireless efforts of the RFS volunteers and other personnel, we still faced the following days of putting out flare-ups and spot fires, with water bucket runs, and hoses where able, to douse the flames and smouldering earth.
We're not strangers to this, it wasn't the first or last time it will happen, with our last major bushfires surrounding us only 6 years previously, although this was different to past experiences, that frightened me.
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| 'Fires behind our home' |
Like many others we almost lost our home, with the thought of losing everything that I have, as minimal as it is, was scary at the least.
After coming out unscathed, physically at least, it reminds us of the reality to how easily everything can be taken away. Seeing so many local families struggling, with lost homes, horrendous damages, and so much more;
the emotional scars remain, especially knowing this can all happen again.
Seeing the comradery, and supportive nature of our town, we know we will come through anything, empowered by each other.
Still it has made me realise I need to prioritise things differently.
Entering 2020....
Dedicating 7 years to volunteering my self in many forms, giving to others, enjoying every minute, supporting those in need that I can help, regardless of how little I have myself... ....so I bring with me into the new year the 'Spirit of Giving'.
I am also looking at a whole new purpose and direction too....
I'm still focused and driven towards community well-being and empowerment.
Yet at the same time I need to firstly do what is beneficial for 'me', and my family, they must come first, as well as financially, and my health which is still not right.
I recently attended a very important meeting,
One that will lay the stepping stones towards the next stage of my ventures.
This direction will open up more opportunities, while resolving the one main issue I've been facing for some time, 'access to a permanent and suitable venue'
After presenting my proposal, I received positive feedback and was congratulated on the great work I'm doing.
While my submission still has to go through the official committee channels, I was unofficially informed that there shouldn't be any issues.
So it is just a wait until after their next meeting date (about 2 weeks) to recieve the official notification of approval, and then I will start the set-up process.
So while I wait, I'll begin to fine-tune my programs and planning approach to what will be a whole new format.
How?? I'm still working this out.
I still plan to do my meetings as I have always done, sharing my knowledge and experiences, with an expansion on who we support.
As well as my classes, with different types of sessions/workshops, etc.
Although this year these will be planned out differently, by including my business aspects in a more structured manner.
My spiritual being is calling out to me and questioning what I need to do, and how to prioritise things.
I'm trying to listen, I'm still learning how to enhance this and use it correctly and wisely.
I still have so much to learn, and I am willing to take that journey,
but this time I will be holding the reigns, and I will be leading the way.
17th January 2020.
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| 'the many faces and stages as he's grown,' |
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