Imagine your body is a car engine. Sometimes it ticks along
quite nicely. Cruising down the smooth road with no bumps, pot-holes or
distractions. When your engine is purring like this you can relax and take in
the view, enjoying the ride as you go.
For my autistic son this kind of road is his comfort zone.
On this road he is at his most independent and communicative. He knows where he
is; its safe, familiar and predictable. He needs nothing more from me than
simply just knowing I am there in the background should he need me. Like a
roadside assistance card in his back pocket. He knows I’m there to fall back on.
Now imagine that you didn’t sleep well at all last night and
you’ve been awake for hours worrying about something, so your engine is running
a little sluggish today. The road has become harder to manoeuvre and see your
way past any obstacles. The bright sun could be dazzling your vision or the
traffic may be building up around you, and you can’t see your way through. Your
engine begins to overheat and you need help.
When this happens for my son it becomes harder for him to be
independent. His vital functions start to slip, and his ability to communicate
steams away from him. His engine overheats and the alarms set off telling me
there is an unseen problem occurring. My role as his parent then becomes like
the recovery truck that restarts his engine. I patch him up and follow him home
to make sure he arrives safely. Or I become the on board Sat-nav that talks him
through the busy city centre in a calm voice to get him home in one piece.
Finally imagine yourself speeding along an unknown road as
you get faster and faster and your brakes won’t work. ...you can’t stop yourself...you’re no longer in control of what’s happening to you or
your engine, and panic sets in. You feel like you could go over the edge of the
cliff at any moment. Or your engine becomes so overheated that you can’t carry
on anymore, you’re at crisis point and all functions shut down.
For my son this is where I become the emergency services
that recover him and get him to safety. My tool kit of love, instinct, and
resources enables him to scramble to safety and begin to recover. I carry him
home and protect him from the glares of ignorance from rubberneckers that pave
the way on this road. I forward think, and helicopter around him ready for the explosion
that could come at any second. On high alert (just in case) at all times, my
adrenalin is pumping and I can feel his pain as if it were my own.
This is our daily life. The road that my son is on from
minute to minute dictates how his engine will cope. The environment is the single
biggest factor that controls his ability to function in our neuro-typical
world. He has good days and bad days, and so I float in between being the
recovery contact card in his back pocket to being his blue flashing lights of
recovery from hour to hour and day to day.
But sometimes as a family we step out of our comfort zone
for more than a few hours - like we did this week on our family holiday.
A week on an unknown, unpredictable and bumpy road.
So this meant that my son’s engine was on overdrive for not
a few moments, hours or even days. But for a whole week. His little engine was
working really hard every second of the day to cope with every new smell, sound
and sight he faced. He coped so well with it all but as a result I was on call should he need me (on high alert) 24, 7.
Unlike when we are at home and he is in his comfort zone, on
holiday I didn’t have time to build up my energy and recoup myself. So by day 5
of the holiday both my son and I were tired.
I became aware that I was becoming snappy with him, and finding
myself wanting to withdraw more and more. I got cross with myself for feeling
like I needed a break. But simply put, I needed some roadside recovery myself.
My own engine was running low and I needed a top up too.
You see being a parent to a child with additional needs involves constantly weighing up how far to stretch his comfort zones whilst at the same time making sure all my children are happy and loved for who they are. I spend a large portion of my time firefighting potential triggers that may arise and I question myself everyday to make sure I put all their best interests first. I try to make sure I never push my son too far, but just far enough to stretch his experiences of the big wide world enough to enable him to be as independent as possible as he is growing up.
And I suppose its only natural that all this forward thinking will take its toll on me mentally. I realised that this is why I had become snappy. I had reached my limit and needed a break. Just for a couple of hours to refuel the tank and get back on track myself. I mean how can the roadside recovery help if its own engine is burnt out?
So just as I recognise and meet my son’s needs day to day, I too need to learn to recognise my own engine a little better too, and do something about it before I overheat.
And I suppose its only natural that all this forward thinking will take its toll on me mentally. I realised that this is why I had become snappy. I had reached my limit and needed a break. Just for a couple of hours to refuel the tank and get back on track myself. I mean how can the roadside recovery help if its own engine is burnt out?
So just as I recognise and meet my son’s needs day to day, I too need to learn to recognise my own engine a little better too, and do something about it before I overheat.
So my advice to fellow parents is this...find something that
can be your roadside assistance card.
Whether it’s a coffee break, a TV programme you can escape
into, or family member that can babysit while you have a bath in peace.
We all need a little help sometimes.
We’re all human and the bumpy roads we all find ourselves on can take its toll - if we don’t take the time to have our own recovery procedures in place every now and again.
We all need a little help sometimes.
We’re all human and the bumpy roads we all find ourselves on can take its toll - if we don’t take the time to have our own recovery procedures in place every now and again.
I have just discovered your blog and have tears rolling down my face as your experience is so similar to mine. Thank you for sharing and being so honest - it makes such a difference to know it's not just me who thinks some of these things and that other families are going through the same struggles as us.
ReplyDeleteHi Linnea, I am so glad you found me. thanks for taking the time to comment and I am so happy you could relate to my ramblings! Mrs M x
DeletePeople with AS is also unable to spot and communicate their internal moods and emotions or to tolerate aspect effects that for many individuals wouldn’t be problematic.
ReplyDeletevery true
ReplyDelete