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Wow. I have actually been thinking about this recently, after seeing Stephen Fry's visit to New Orleans in the excellent travel documentary series he recently made for the BBC.
(yes I know, more travel shows!)
In the third episode he follows the Mississippi, taking a tour of the abandoned neighbourhoods destroyed by Hurricane Katrina, meeting homeless people not living the American Dream, and visits Angola, one of America's most notorious prisons.
And I got to thinking of what we all might be capable of, given the circumstances.
You see, while I would never compare Autism parenting to being homeless or incarcerated, I would have some understanding of the levels of inner strength you have to call on in extraordinary situations. You learn things about yourself that you shouldn't have to. You also clean up more poo and sick than any human being should ever expect to. And you learn to love people who have screamed at you until your ears burst, or kicked you or used your Clarins Nuit Huile as chicken nugget dipping sauce.
I guess I have coped.
Three difficult pregnancies resulting in two healthy children with extra special powers, and needs. A constant battle for services and a search for the appropriate intervention which is proven to work. Trying to maintain a relationship in the face of all this which nurtures not only our children but ourselves.
All this has tested me, and yet I sit here at half past 11 at night, fully cognisant and able to relate the experience.
So I wonder if I was faced with the situation in the Louisiana Superdome during the hurricane; how I would have fought to survive?
While I am not a churchy religious person, I do believe I have a strong moral code based on putting it out there and expecting it back.
But I think I could steal, hurt or kill to protect and defend my family.
If I had to go to prison, would I go do-lally and be locked up on my own?
(I think I would enjoy solitary for just a little while, for the peace and quiet)
or would I do some networking, establish my role in the social order and get on okay until I was released?
(You could be my bitches)
Or would I be a suck up and get a job managing the prison website in the governor's office where I would hack into his bank accounts before escaping through the sewers
(no wait, that's Shawshank)
I dunno. I don't know if it is the same thing. But it might call on similar human reserves.
You see, there are people who do not cope in extreme situations. There are parents who give up at the first hurdle and leave their special kids at the mercy of whatever the state sees fit to provide. Some even develop mental health issues of their own under the extreme pressure of their situation.
Some just find they do not have the chutzpah and moxie to take on the oppositional behaviour of the state and challenge them to provide the appropriate interventions and support as needed.
Some days I have said to people that you do what you have to do to get the best outcome possible for your children. You sell your soul to the devil if that is what it takes.
But you shouldn't have to.
We are living in a society where the state can take the decision to stop the funding of interventions that are effectively giving people back the children they have lost to the sensory challenges of autism. Stopping funding and aggressively thwarting any attempt to fight back; to deter others.
Where's the morality in that?
I am not afraid of what I find when I look in the mirror. I think I have what it takes to survive.
I just don't want to have to use it too often.
xx
Comments
I love me some Stephen Fry, I can't wait to see that series.
Obviously I might be talking through my ass but I think most women have enough power but they are not empowered enough exercise that most times. I think you are empowered and that's why I feel so warm and proud when I read your stuff.
I don't know about prison, but if I could be reborn and choose a mother, I'd choose you.
As for Hammie, as I was reading your post I was picturing another type of documentary: wildlife, with a female fighting tooth and claws to protect her young, even to the death.
Your roar is mighty. You are passionate in your love for your young, in the way you express it. And I love passion.
Go girl!
Mind you the Clarins incident is a deal breaker, that would have broken me. My kids always got me on the mosituriser stuff!
I'll be back to read your post with time (because I like to have time to meditate in each and every word you write ;))
By the way that square isn't our main one, the one in the today's pictures is.
Lots of love
Take care, all the best
xoxo
Mrs C: done! xx
La Belle: yup, it gets real tiring. But keep reciting Helen Reddy "but look how much I gained"xx
Half Rabbit: YES! come over here and I will get you a junior ministry. Problem is we have a culture that expects so little of the people with Special Needs and Super powers.xx
Cybil: I think I have a Man Crush on S.F. My goal is to get to meet the great man (he is a friend of the auties) but I fear I would turn into a blubbery mess.xx
Songy: What stops us using our power? And why when I do try to be assertive, I dream about snakes?
(snakes = male power)
we will be so cool and fashion in prison together.xx
SW: right back at you. xxoo
Te: writing to Marie Claire right now to request the Quiz. You are too young but my formative years were spent watching Prisoner Cell Block H, so yes, I have long imagined my prison personality.
On your other point: OUCH!
I have agreed with you on occasions. Like when I am having a good old bitch with a friend who has a son with severe autism.(also a battler)
But truth be told, the parents who do not cope, have much lower expectations of what their kids will achieve, and sadly those expectations are realised. xx
Nan and I Heart: Yup, our mammalian instincts come to the fore but the law stops us!
enc. :Mr H and I were talking about Northern Ireland a couple of days before I wrote this, and Margaret Thatcher's role in perpetuating that conflict. I think I had that in mind when I wrote it. How far people go, and how much further when pressed.
xx
Make Do: I cried about the Clarins, because we were poor and it was such a luxury to have it. But it was the last time I cried for "Things".
xx
Anonymous: so glad to hear that you were inspired to fight another day, thanks for telling me. It helps me to keep going here too.
xx
Seeker: YOu are welcome. Look forward to your return.
Skylark: So glad to have you back. Yes, I hope I am on bounce back curve without having to dip down again.
Thanks everyone for dropping by!
Sorry I have been a slack commenter. We need a new battery for the laptop so I have been reading in bed lately. STEPHEN FRY of course!
xx
having a chld with autism ahs made me a much better person...often sadder, angrier and more lonely, but ultimately better. I have been plunged into depths I never knew i could experience and survive. I know who my friends are. I know my husband is a Good Guy. I know my other kids are more sensitive, empathic and accepting of the differences we all exhibit.
P.S I DO love Stephen Fry, the old fruit. He narrated Transporters (The kids dvd designed for autisitc kids)
Wee done as ever Hammie. You're like our spinal cord. You sense and express the feelings of a legion of Special needs parents.
Cheers
FrancesJ
Hey, if they could show me the data using comparitive double blind peer reviewed studies, I would be all ears.
The thing that always unsettles me is the talk of autism as a "disease" like cancer which has to be cured.
When I see my kid's autism I see a sequence of responses to their sensory distortion; which also shapes their personality. And yes, I think it has made me a much better person. You were the third person to say this today, I did't remember the first two because I was feeling so unsettled; so thankyou.
xx
Truf
Hey! I paid for my kids tuition for 18 months until they got the full time ABA, and the only reason they were accepted was because I had "kept the door open" to intervention.
I fear that by the end of next year we will be paying again but at least this time we will be paying to keep the school going. Would live on pot noodles to do it too!
As for your own anxiety; acknowledging our own inner autie or Aspie is more than half the battle. Identify your strengths and use them where you can, and nurse your challenges.
xx