I want to talk about the cult of special needs parenting and motherhood particularly, because I have recently come to understand the danger of doing everything yourself and being therefore "immune" to criticism.
You see the problem with a universal lack of adequate services is that parents and particularly mothers, end 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. You will most certainly feel very put upon, and for good reason.
From time to time you will come across people who will notice how hard your life is, congratulating you with a:
"What a great job you're doing, What an amazing person you must be!"
"Wow" you say, "thanks a lot, that makes me feel great!"
(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 alone, balancing 18 hats on your head like the guy in the children's story and thinking you are just great!
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, when you seem to have been going along so well on your own?
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 know damn well they are in no position to comment on your little failings.
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.
But this is not good!!
You are not infallible. You are probably doing half of what you do do well. Another quarter just okay, and you could well be making a fish's mickey of the rest!
"How dare you?" (I hear you say) but Sorry, If anyone person tries to do everything, they will not do it all well. And when you are trying to do everything for a child with special needs, 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 to "what can happen" rather than "you are doing this bit wrong".
And think about 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 you did well.
If you are a good carpenter but a poor tiler you should not attempt to build the whole house yourself. Because when the tiles blow off and the rains comes in; no one is going to say, well the window frames are very pretty.
Nope, they will just be standing there with wet hair complaining that you fucked it up!
If you cannot do something, Put up a flag, grab the red card, hold up your hand and 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.
When you get that support; when one person takes on even one task that you used to have to do yourself; Notice and compliment their efforts so they will continue to take it on.
(This, if I might put on my lycra jumpsuit for a minute, is the power of REINFORCEMENT. You see it works on grown-ups too)
And you will be left with one less thing to do, and more time to get the rest right.