Lyrics and Poetry to Live By

On a Clear Night

Have you ever found a song that just  somehow sums up your journey through life beautifully?

For me, being the mother of a son with Autism, life for us has definitely had its moments.

Yet one of my core beliefs has always been that,  no matter what,  I will be there for him.

For me that means always trying my absolute best to understand him,

To put myself as best I can in his shoes,

And to see the world through his eyes.

To hold him when it all gets too much for him,

And to encourage him soar like an eagle,

When ever he can and in what ever way chooses.

So this song for me called “Night Minds”  by the wonderful Missy Higgins,

Pretty much sums up how I feel about my son,

Our life’s together,

And the promise that I’ve always made to myself to be there,

Not just for him,

But with him.

Night Minds

Just lay it all down.

Put your face into my neck and let it fall out.

I know ,I know ,I know.

I knew before you got home.

This world you’re in now,

It doesn’t have to be alone,

I’ll get there somehow, ‘cos,

I know, I know, I know,

When, even springtime feels cold.

But I will learn to breathe this ugliness you see,

So we can both be there,

And we can both share the dark.

And in our honesty, together we will rise,

Out of our night minds, and into the light,

At the end of the fight…

You were blessed by,

A different kind of inner view:

It’s all magnified.

The highs will make you fly,

But the lows make you want to die.

And I was once there,

Hanging from that very ledge,

Where you are standing.

So I know,

I know,

I know,

It’s easier to let go.

But I will learn to breathe,

This ugliness you see,

So we can both be there and we can both share the dark.

And in our honesty,

Together we will rise,

Out of our night minds,

And into the light,

At the end of the fight.


Pathological Demand Avoidance. PDA. Could this be the answer to my daughters behavior ?

2012 Behaviour Matrix copy

 

As some of you will know, I’ve been desperately seeking help for my daughters increasingly out of control behavior and, up until recently, finding little to no help at all.

One of the biggest problems that I’ve faced in my efforts to garner any form of professional assistance for her is the genuine lack of belief out there that a child of her age could act out so violently without cause.

 

Now when I say ‘without cause’, what I actually mean is that all (bar one health care professional), have sought to turn the ‘blame’ for my daughters behavior back on to me as a parent.

 

Clearly I must have been doing something wrong, like not standing up to her firmly enough, not providing enough discipline or maybe as a parent even failing to impart to her the correct and expected standards of behavior.

 

Perhaps, if my daughter’s behavior is abusive and aggressive, then it must be because I, as her mother am also abusive and aggressive?

 

Well, I’m not abusive or aggressive. I’d much rather run from a fight than jump up and start one.

 

I’ve not failed to impart to her the correct and socially expected standards of acceptable behavior.

 

As I have said before in previous posts, my daughter knows right from wrong.

 

Yet when she gets in a rage, or a ‘meltdown’, all bets are off and she can and will do anything to express her anger.

 

So after having it suggested to me that she may have Asperger’s Syndrome, by the one and only health care professional who took me seriously, and that her ‘meltdowns’ may be occurring as a result of her increasing inability to cope with a world that she’s struggling to comprehend, I thought well, I already know those things about her.

 

And I undoubtedly agree that she probably does have AS, and I have already adapted many of the routines in our life to compensate for that,…. but,….. and here’s the big but,…… she can when she wants too, cope very well with social situations and she can, when she wants too, be very agreeable, happy and easy to get along with.

 

What she can’t seem to do is understand that other family members have rights and needs too. Especially if those rights and needs conflict with anything that she wants to do.

 

So I’ve been left asking myself just what is going on here?

 

Yes she may have AS but is she now so spoilt rotten because I’ve instinctively sought to compensate for that, that she’s suddenly forgotten how to misbehave whenever it suits her?

 

Have I been such a bad parent that I’ve taught her to abuse others whenever she can’t get her own way?

 

And does she even know any longer what her own way is because nothing and mean nothing calms her down once she’s exploded.

 

Her behavior has reached the point where the slightest things set her off and there’s absolutely no rhyme or reason to it at all.

 

I’ve lost the ability to predict or fore see  where the time bombs are in her life.

 

I can’t defuse that which I cannot see.

 

Therefore, I can not stop her rages from occurring.

 

Nor can I bring her out of them.

 

Nothing it seems brings her out of her rage until she herself is ready to come out of it.

 

Any attempts to help her calm down once she’s in a rage are rejected and usually result in an escalation of her bad behavior.

 

I have quite literally being pulling my hair out trying to understand why she blows up at the drop of a hat and why once she’s up in the air, nothing can bring her back down.

 

Not even letting her have her own way with whatever it was that set her off in the first place will work.

 

This behavior has both scared and confused me.

 

Scared me because when she goes off she becomes incredibly violent.

 

Confused me because if it were just a matter of her wanting to always get her way, then why won’t giving her what she wants calm her down?

 

To me these things just did add up.

 

And then I read this post from http://bipolar-truth.com/2012/08/15/pathological-demand-avoidance-pda/   on Pathological Demand Avoidance and the pennies began to drop, and drop and drop.

 

“These children are said to resist the ordinary demands of life to a pathological degree using an abundance of tactics. They often have a Jekyll and Hyde type of personality with severe mood swings and can often exhibit severe behavioural difficulties. They may have a troubled educational history and the family may be in severe need of help and support.”

 

After reading this my jaw dropped, for this is exactly what  I am seeing in my daughters odd set of  behaviors.

 

One minute she’s my lovely girl,  and she’s calmly and rationally, though sadly accepting her father’s impending marriage,  the next minute she’s plotting to destroy him or blowing up at me over the loss of a her hair tie (of which we have a jar full, all the same size and all the same color).

 

And then I read the next part of the post;

 

“In contrast to most individuals with autism spectrum disorders, individuals with PDA appear to have an anxiety-led need to control, possessing superficial social skills and seem to have some but often significantly impaired theory of mind. They often engage in manipulative, domineering behaviour.”

 

Can you hear the sound of still more pennies dropping because for the first time, in a very long time, I think I finally can.

 

And then I read from yet another blog at http://islingtonhomeschoolmom.wordpress.com/2012/04/10/understanding-pathological-demand-avoidance-by-christie/ that;

 

“PDA is related to the autistic spectrum disorders (ASD), but varies significantly from most other syndromes on the spectrum. Unlike other ASD children those with PDA appear to understand emotions and communication…to the point of being manipulative.”

 

This was followed by the additional understanding that:

 

“These children do not recognize that they are children. And while they may fully understand the societal rules of behavior, they have difficulty applying those standards to themselves. Their deep need to control situations and their environment is born out of the intense anxiety that they experience when demands are placed upon them…even normal every day demands of life and school.”

 

Then from yet another wonderful blog http://alexcparsons.wordpress.com/2011/12/20/article-from-the-times-on-pda-extracted-from-pay-wall/I found the following information.

 

 

“Children with PDA essentially have an in-built need to be in control and to avoid other people’s demands and expectations, which raises their anxiety levels to an extreme extent…. They all shared an unusual resistance to everyday demands – even when related to things that they would enjoy. The children were superficially sociable but were often manipulative and lacked awareness of unwritten social rules. Their moods could switch very suddenly and they often confused reality and fantasy.”

 

Still more pennies  were dropping and then I read this, written by a mother about her young daughter:

 

“She was totally dictating our lives – what I wore, if I could make a phone call, who could come round.”

 

For me this was the clincher, the thing that’s making me believe that PDA could be the answer, because these are the behaviors that my daughter regularly attempts to apply to me.

 

She’s even gone as far as taking away my phone and my hiding my car keys so that I can’t leave the house or  call for help.

 

I know that to most people it sounds absurd that a child can create so much turmoil, especially a girl, especially a girl under the age of 13, but I’m telling you they can and I know now that I’m not the only parent experiencing this.

 

There is a term for it.

 

Pathological Demand Avoidance.

 

And I am not alone.

 

So thank you to each and every blogger out there whose posted on this topic and a special thank you in recognition and gratitude to those amazing bloggers whose words I’ve quoted.

 

You have all given me a much-needed source of information, hope and inspiration.

 

 

 

 

Life with an Undiagnosed Asper Girl

For many years I’d wondered whether or not my daughter was an undiagnosed Asper Girl.  After researching, reading  and ingesting all of the advice given by various authors on Asperger’s Syndrome and girls, I began  parenting  my daughter with a view to understanding her world.

I specifically focused on not critiquing her “quirky” behaviors but instead attempted to join in with her when I could.  For instance, if she had a particular item in her room that she liked placed in a certain way, then whenever possible, I would make sure that neither her brothers or I moved it.

When we went shopping, if she insisted that I buy two of the same food items, instead of trying to talk her out of it, I simply began to take note of which items she did this with and how often.

I noticed that as soon as I began doing these small things her general sense of well  being  improved greatly. She stopped arguing as much over small things and began to show more interest in spending time with me as opposed to demanding, come hell or high water, that I drop everything and  attend only to her.

At first, when these changes began to happen, I wondered if I’d gotten the whole Asper Girl thing totally wrong.  The more her behaviors improved the less she seemed to match  the Asperger’s Syndrome that I’d read about.

She was becoming increasingly co-operative  and having far fewer  ‘melt-downs’.  I figured that what ever I was doing was helping her and that perhaps all she really needed was to feel  a little bit more loved. So I kept going with what I’d been doing and things kept improving.

Then along came the now infamous Sims episode in which she completely trashed the family computer because she couldn’t get her Sims avatar to look right.  Her plaintive cry for days, weeks and months afterwards had been “why didn’t the computer just make it look right?”

Although she’d been severely reprimanded for destroying the family computer and made more than aware that her actions that day were way off the scale,  she still could not seem to accept that she’d done the wrong thing.

Her reasoning kept looping back to the fact that if the computer hadn’t been too old to make her avatar look the way she’d wanted it too, then she wouldn’t have gotten angry and she wouldn’t have pushed it off the desk and destroyed it.

She was 10 years old at the time and I had to try and figure out once again just what was going on with her.

She should have been able to understand that what she’d done was not appropriate.

She should have been able to put aside that one imperfect avatar and move on.

Was  this a case of couldn’t or wouldn’t on her part?

Should I blow up at her and blast her for her continued insistence that her actions were not her  fault or should I once again attempt to meet her halfway and try and understand how it was she  viewed things?

I decided I’d try the ask before you blast tack one last time.

She began to cry as she explained to me how she’d spent the last few months building a perfect world for her Sims. How she’d tried to think of every possible thing her 10 year old mind could possibly think of to do for them.  How she’d spent weeks agonizing over the design of the house, colors and furniture. She’d even tried to ensure that there was  a gender balance  within her mix of avatars.

The more she spoke about her Sims world the more I realized that whilst  I viewed it as just a game, she’d viewed it as her own unique, personal, creation.  For her, in creating her  Sims  avatars, she’d engaged in some very real and in-depth emotional connections that I had not understood.

Then the penny dropped. She was  genuinely emotionally devastated.

I had never seen her bad behavior as a truly emotional reaction to what others would consider  to be the  small  and inconsequential  hiccups of life.

While we were talking I asked her why she wanted me to buy certain things in two’s while shopping.

She told  me that she only liked to eat food that came in pairs. Food that wasn’t lonely. Food that had a friend. She then went on to explain , once again in great detail, why even numbers are the best and how odd numbers make her feel creepy.

It’s been two years now since that event happened and we still regularly have in-depth conversations about what it is she sees when she looks at people, places and things.

She is coming to understand that she sees the world in a slightly different way and I am doing my best to help her recognize and acknowledge this as an aspect of her own unique, individual, strength.

The thing she’s still not ready for yet is a diagnosis.

She  says  she doesn’t want to be labelled.

My understanding of her doesn’t require an official diagnosis.

So I will continue to let her wishes guide me

 

Wilfull Change

Magaret Mead, the late great anthropologist, once said;

“Never doubt that a small group of thoughtful,

committed citizens,

can change the world;

Indeed,

This is the only thing,

That ever has.”

 

A mother warrior is…

A Mother who hears there is no hope for her child and,
Instead of retreating and mourning,
Breaks down walls,
Weaves her way through obstacles,
Follows her intuition,
Even when people tell her she is crazy.
She is a mother who believes in hope.
A mother who believes in miracles and,
Is able to carry on with strength and determination,
Even when surrounded by those who doubt her,
And offer her no support.
She is a mother who never gives up,
Even when she keeps hitting dead ends.
These are the women who will continue to open the door,
So future generations of children won’t have to suffer.
These are the mothers with hearts of gold
And shields of nothing more,
Than flesh and bone.
These are the parents who fight,
Giants on daily basis,
And each in their own way,
Win new ground every day.

They are seekers of change.

Seekers of truth.

These are the warrior mothers,

I walk beside proudly,

And whose numbers I hope,
Will one day over flow.

The experience of discrimination and disablism: As a parent does it happen to you?

I recently read a research article that  offered up some interesting food for thought for me as the parent of a child with autism. It got me thinking once again about the numerous ways that parents are subjected to an insidious, though often not spoken about, form of ‘disablism’ – a particular form of discrimination derived exclusively from negative reactions towards those who are differently abled.

It also got me  questioning  just why it is that parents of children with autism are routinely seen as being somehow immune to the experience of disablism.

In their work ‘Repositioning mothers: mothers, disabled children and disability studies’ Sara Ryan & Katherine Runswick-Cole (2008:201) argue that the continued representation  of  parents as  ‘oppressors’  who perpetuate disablism upon their children, by theorists applying the social model of disability,  has effectively placed parents outside of the disability movement.

They suggest this is due to the division between the impaired and the non-impaired that the social model of disability creates (Ryan & Runswick-Cole, 2008:199). Under such a division, parents of disabled children are considered non-impaired and therefore positioned as being a causal factor in the discrimination and disablsim their children with impairments face (Ryan & Runswick-Cole, 2008:199).

Ryan & Runswick- Cole (2008:201) argue that in doing so, the social model of disability underestimates  parental understandings of disability  in a manner that takes little to no account of the  broader ways acts of disablism are both perpetuated upon and experienced by parents of disabled (differently abled)  children themselves.

Do you think that you as a parent have experienced discrimination/disablism?

If so what form has it taken?

 

 

 

The Strenght of Absence (part 1)

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There is an old English saying that goes something like, ’the wearer knows best where the shoe pinches’.   I guess it’s the precursor of sentiments like ’walk a mile in my shoes ’. It think in part these statements encompass our desire to have another person know and understand the elements that make up our lives .

These sayings remain with us   because essentially they are true. None of us, not one of us, can ever lay claim to knowing how if feels to live another’s life by looking at it from the outside.

This is my attempt at trying to give voice to some of the experiences that make up  my own existence.

A Trip to the DVD Store, Simple Huh? Think Again.

Each step my son and I take into the realm of public spaces can equate to the emotional and physical discipline of climbing a mountain.

Mount Public Perception.

Unlike real mountain climbers we have  no nifty tools tucked away inside a well organised back pack. No ropes to secure ourselves to each other’s sides in case one of us loses our footing and tumbles into the void.

The tools we cling too when climbing Mount Public Perception are little more than  nice clean clothes, a brush, makeup, clasped hands and the hope that we can make it out unscathed by the thoughtless words and the stares of people who hold no understanding of what it is like to have to negotiate this world with a child whose way of being is constantly marked out as different.

When my son I venture out into public places we have only the comfort of hands and the fragility of interlocking fingers to hold us together. We make of our bodies a small  but certain guide rope of safety. And in so doing  we assert our bodily boundaries as one.

Connected, we head to the DVD stores sliding doors, which  my son has convinced himself, he alone has the power to open and close with the will of his mind. He commands the doors to open with a tilt of his head and a swoosh of his arm. He nods at me. And we enter  his Mecca.  His holy land in which all things play station reside.

A man stands and stares at us from the service counter as we approach. I keep my eyes on the man’s face as we draw closer to his space.

I am looking for clues.

Facial signs that might declare him to be either friend of foe. But he makes no effort to either smile or turn away.

My son says his version of “hello” but the man simply remains in his position. He makes no verbal response. No smile. Nothing. He just stands. Stationary. Staring. His scrutiny of us only just beginning.”

Inside the store my son tells me that he wants a special play station game…but he can’t remember what it’s called. Only that it has Spiderman, the Green Goblin and Batman in it.

I tap my foot as we stand hand in hand in front of a vast array of play station games. Displayed unhelpfully on crowded shelves with only thin multicoloured spines denoting where each one ends and the other begins.  I breathe deeply and try not to let the frustration that is flooding my body reflect in my voice. I keep it calm, soothing. ’We’ll find it’ I tell him as I fold my body down into a crouching position, hoping in vain that the simple act of getting a closer look will somehow solve the problem.

This is going to take some time.

Autism : Extreme Love – Louis Theroux’s Documentary

This documentary follows the experiences of families and teenagers with Autism and Asperger’s Syndrome as they go about their daily lives.

It takes a very honest and powerful ‘warts and all’ look at the Autism experience and openly incorporates the perspectives of both teenagers with autism and their parents.

Theroux does more than just talk  to teenagers and parent’s, he actively follows and engages with them in their schools and their homes. His portrayal covers both the extreme love and dedication that parents of teenagers with Autism experience alongside the very real day to day issues of exhaustion, frustration, fear and concern for their teens as they become young adults and step forward into the world.

In doing so this documentary explores life with Autism from just about every angle tackling many of the issues that are often hidden or under-represented within mainstream media.

It is by far the most balanced and revealing documentary on the Autism experience  I’ve seen in a very long time.

I thoroughly recommend it and would love to hear your thoughts on this or any other  documentaries, movies or books you would recommend?

Prism

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This is the dance of our life,

The eternal inner child,

Always waking the external giant,

Creating the crashing clash of demands,

That hold me captive,

In your hands,

I wait for you to open,

Or shut,

As you will,

It shall be your choice,

For my voice is small,

And your circumstances  large,

So I will dance around your perimeter,

Twisting in the breeze of your breath,

And I will sit within your silence,

Not touching your hand,

Yet forever reaching deeper,

Into the prism,

Of Autism,

Which makes all light spin,

As you melt once again,

Into your rainbowed way of being

And in watching all of your colours blend,

My own understandings,

Of Autism,

Are beginning.

Truth Mountain

 I sometimes think that I am being consumed by the cancer of comparisons. My life is filled with such inane and unanswerable wants that I fear myself at times to be fading away into the abyss of un-named things. In the midst of all the honesty of trying to understand myself and regain the person I used to be, the happy one whom comparison had not yet touched, I find myself to be even more lost than I first thought. Consumed by fears of an unknown origin. Then again perhaps some of these fears are truths. Truths that cannot be changed or wished away.

 Truths that stand and stare me boldly in the face, safe in the knowledge, that no matter which way I twist, they cannot be broken. For they are a substance in and of themselves, unrelenting and unforgiving. Forming mountains that cannot be moved. So I guess I’m going to have to climb them in order to get a different perspective. All I can see from ground level are the drifts of dust that roll off them and cover me in your my own distaste. Of course there is every chance that in the attempted climbing of truths mountain I may fall off and forever become lost. Or crushed by a stone of incomprehension too solid to be removed.

Dare I attempt such a climb? Do I really want to know how to retrieve myself? And what is it I will find sitting up there on top of the mountain that I do not see from here? What if the person up there is the same as the one down here, or worse, what if the person up there is less than the one down here? Then what should I do? Or am I even now at this point in time, temporarily insane for even daring to question the fabric of my own life?