Because this is "the silly season" and I am off on my holidays for the next 3 weeks to a world without broadband (imagine) - I will not be able to blog regularly.
I've lined up some repeat posts for you. This is a summer tradition in Australian Television as everyone has better things to do, all the good shows go on hiatus and show repeats.
(a year round tradition in cable t.v!)
So, I am giving you the chance to enjoy these posts for a second time. I will still be able to read comments as I switch on the iPhone every couple of days, so keep the love and encouragement coming, I need it!
First up is Episode 33, First published in March 2008:
"Excuse Me I think You Dropped Something" or "The one where Hammie fecks up and no one is around to help"
Excuse me, I think you dropped something?
You see the problem with a universal lack of adequate services is that parents and often the stay at home parent, ends up doing way more than they should.
They find themselves working 7 days a week, up to 18 hours per day (even longer), no sick days or holidays.
They find themselves compensating for the absence of therapeutic support. They have to self educate in the condition and attend courses in areas in which they had no previous interest or expertise.
They have to learn to negotiate with professionals who have limited time or training in the field in which the parent needs them,
and administrators whose role it is to block, divert or otherwise confuse and discourage the parent from pursuing the service in the first place.
They might be isolated from family who do not want the responsibility of taking an active role in the special child's life, and friends from their old life, who could not fit in with the changes the disability has brought.
They may even be isolated from their partner, yet to "get on board" with the diagnosis.
One parent often has to take the lead and get on with coping leaving the other to catch up when they are ready.
It can be an incredibly isolating and exhausting experience.
From time to time you will come across people who say:
" Wow, What a great job you're doing!"
And you find yourself thinking "hey, maybe I am pretty cool" as you blow the sparkles off your nails,
And then you look around and the person who said it isn't there.
Because by complimenting you and building you up, they have negated their own responsibility for helping you.
So there you are with the 18 hats on your head like the guy in the children's story; and if one of those hats tilts a bit, or even falls, who is gonna be there to tell you how to do it better?
Think about it. In any situation when someone criticises the way you do something, your immediate response is "well, you do it better then."
So if the job you are doing is raising a challenging child with intense needs, on no sleep, terrible pay and limited professional support;
Who is going to be brave enough to approach you with one of those dropped hats, to point out that fell when they know damn well they could have done a lot more to help you keep it up in the first place?
The answer is hardly anyone.
And that includes the professionals, the family, and even your partner.
You see; by doing everything yourself you have made their journey, their job and their responsibility much easier, and they are in no position to comment on your failures.
You are way way up on the moral high ground and they are just on the plain flat earth doing what they can do well. And leaving you to it.
Truth is, You are probably doing half of what you do do well, the rest just okay.
You might even be fecking up some things.
Sorry, but if anyone person tries to do everything, they will not do it all well.
And when it involves children you will not be doing the best thing by them.
Somehow you have to come down of the pedestal and be ready to accept constructive criticism and even give up a part of what you do, for the sake of your child.
Open up your ears very wide, because criticism when it comes will be whispered and hidden in oblique references, and listen to how or even better WHO can do it better?
You cannot have it all, You cannot do it all. And in the end no will thank you if you try to do it all and fuck it up.
They will not remember the bits, just the bits that fell down.
If you are a good carpenter but a poor tiler don't build the whole house yourself.
Because when the tiles blow off and the rains comes in; no one will notice that the window frames are level.
Nope, they'll just be standing there with wet hair complaining.
Don't be afraid to say "I need help".
Don't keep gathering up all the bits that everyone else is letting fall as you will soon be weighed down and won't get anything right.
And please, please, PLEASE, leave yourself open to criticism and then support.
And when you get the support, even if it is not up to your impossibly high standards and expectations, SAY THANK~YOU!