Tuesday, November 18, 2008

Step 4. Made a searching and fearless moral inventory of ourselves.



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

22 comments:

K.Line said...

I love this post. If I end up in jail with you, I promise to be your bitch :-)

Mrs. C said...

Um, wow. How can I follow up after a comment like that? Maybe we can just be really good friends in prison and our threesomes can be over cards. :-)

La Belette Rouge said...

Dear Hammie: Great and thoughtful post as always. The fierceness and tenderness of your mothering are a beautiful thing to see.I so relate. I have become aware of an inner strength I have to endure extraordinary situations. I am tired of learning about my ability to endure and to survive. I am ready for a new lesson.

Half rabbit said...

But why do they want to deter others? Isn't it more economically viable to want to help kids be more productive and able to care for themselves members of society?

cybill said...

Hammie, you are just so damn cool.
I love me some Stephen Fry, I can't wait to see that series.

Songy said...

I'll be your bitch, too, Hammie.
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.

Sister Wolf said...

I think that adversity crushes some people, and makes warriors of others.

I don't know about prison, but if I could be reborn and choose a mother, I'd choose you.

Te said...

I think everyone is capable of extremes to protect themselves and people they care about. But perhaps you have thought a little too much about this to start questioning your 'prison personality' maybe one of those multiple choice quizzes need to be created on the topic ;) On another note, I thought about what you said regarding the strong people and those who give up, and I think it's incredibly unfair that the ones who give up (for example other parents of children with special needs) are the ones who are given extra help and receive the most empathy from others. Strong people like you deserve more credit and recognition.

Iheartfashion said...

I can relate to the ferocity that comes out when a mother feels her children are threatened. Your beautiful kids are lucky to have you. It's a rare mother who can not only handle what you do, but with good humor as well. Great post, as always.

Nan P. said...

This is a response to half rabbit's comment: politicians and their "servants" (e.g. so called civil servants... a joke most of the time)are very short sighted: they only look at the short term impact, not the long term. This is what the whole debate has been about following the Irish budget announcement last month: Education cutbacks, young farmers' grant cutbacks, Disability Allowance (thankfully u-turned), Cervical cancer vaccine, etc... Of course, it's more economically viable to support Special Kids as young as possible... but only LONG TERM! They can't wait that long, their own job is on the line - In case you have not noticed, I am a true political cynic ;-)

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!

enc said...

Somehow, I think your embedded and strong sense of right and wrong would overpower any impulse to do anything "unnecessary." However, some things are necessary.

Make Do Style said...

I'm with you in jail too, we'll all form a gang it'll be great!
Mind you the Clarins incident is a deal breaker, that would have broken me. My kids always got me on the mosituriser stuff!

Anonymous said...

Today started with a strong feeling of despair. For a while I did'nt want to come out of it.Knowing it's up to me to fight for my beautiful boy, I threw myself into the shower and washed it away, dried off and waited for him to come home from school, with a smile on my face. Keep up the good work Hammie, you always remind me why i'm fighting so hard and how rewarding it is when you do!

The Seeker said...

My beloved Hammie, just dropping to say Hello, thank your comments and tell that I think of you.

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

Skye said...

Hammie - you really do have the absolute iron survivor strength, and there is definitely some reassurance to be gained from knowing you have it. But damn, I hope you never have to put it in to practice more than you have already.

Hammie said...

K: thanks, we can work in the laundry and get Skye to help us adapt the uniform.xx

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

Anonymous said...

Hey hammie
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

Hammie said...

Thankyou Frances. I have been feeling vaguely unsettled this evening due to my accidental attendance of a talk on Bio-meds.
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

Sesame said...

Oh to see in my mirror what you see in yours Hammie.....great post..echoes what a lot of us special parents feel...would definitely sell my soul to the devil, beg, borrow and steal to get my hands on anything that will help my Babs progress...and yes it is so easy to sit back and take the scraps thrown at us and a lot harder to find the balls to shout and fight for basic human rights for our kids...Iron lady indeed...

Anonymous said...

Lovely blog Hammie. But it almost made me cry. I think of myself as one of these "weak parents". Instead of pestering HSE I've been paying for OT and soon will start paying for SLT. I know, I should be out there phoning and writing letters and campaining... But the truth is that even phoning the dentist for an appointment gives me an anxiety attack these days. And I do appreciate that others are fighting battles which are also mine. Thanks.
Truf

Hammie said...

Truf: that isn't weak, that is sensible. We can't turn back the clock and get the therapy to our kids in time if we wait for the HSE/DoES, so of course we have to pay for it ourselves. But be sure to join your local support group and lend your legs to any future campaign to force the HSE to do their job.
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

jules said...

interesting :) love your post :)