As well as shouting "YES!!" very loudly at the computer as I read, I felt compelled to join her in sharing this reality that is also ours.
Every point was painfully, precisely, tragically and wonderfully spot on. It is the first time I have encountered such a frank and honest review of the turbulent world of parenting those with special needs - and particularly relevant when you have a muddled, ever growing collection of problems, symptoms and diagnoses. How unbelievably refreshing and totally liberating it was to read how I am, in fact, not alone.
A Marathon not a Sprint
Any parent - and particularly any parent in our situation knows they are in it for the long haul. This is not a race in any sense of the word, not a competition, not an enviable, pitiable, questionable or debatable life experience. And acknowledging this precipitates not only a prolonged learning process but a realisation that coping mechanisms are going to be required.
Given that all parents - and all children- are undeniably unique these coping mechanisms are going to be as numerous and varied as those who devise and adopt them. None are better or more worthwhile, none pointless and all are valid. To someone. Challenging these is cruel and uncaring, showing a painful lack of understanding of the complex position that person finds themselves in and acutely painful to the person who has built these supports in to their life.
Coping mechanisms are like armbands (water wings if you are in the USA!) - inflatables that literally keep your head above water. Empathy doesn't come into it, no one can really empathise properly with anyone else as every situation is different. Acceptance is of far greater use!
I'm thinking of an orange with armbands now...
There are no secret solutions, magical fixes or one-size-fits-all regenerations. Superpowers are self made, born of trial and error.
But that's not to say for a single second that pity in any form is required, there are many forms of support and encouragement which are valid and helpful. Self preservation is vital, there are no rules, you do what works for you to maintain your energy, capacity to care and most important, your sanity!
As "Chaos in Kent so accurately wrote:-
- You will become a secretary, a nurse, a therapist and an advocate for your child
- You will juggle appointments, therapies and appeals with running a house, other children and for some, holding down a job.
It will at times seem utterly overwhelming but maintaining a perspective is so, SO essential. We all need balance too - but not at the expense of anyone else. Do what you can, don't beat yourself over what you can't and since you landed in Holland not Italy take time to enjoy and appreciate the surroundings. You aren't going anywhere, it's Holland or bust.
|Image courtesy of Keerati / FreeDigitalPhotos.net|
Meanwhile, I will continue to make the rules up as I go along as this is our life experience, our reality, and no one else is likely to "get" it to be in a position to judge. It's a marathon, not a sprint, and I'm focusing on the journey and not a fictional end point. It's not about me, or any individual, we are navigating a course for a family together.
and a totally warped sense of humour.
That's my superpower. What's yours?
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