Wednesday, June 20, 2012

Is there such a thing as a happy childhood?

Before I even start writing I want to put a disclaimer on this post.  This post is not written in any way to diminish the trauma in peoples' lives -- especially in their early life.  I concede many people have had a childhood and life crappier than mine.  This post although inspired by ones I have read very recently by a number of people is not an attack or a STFU.  I am not here to say how my early life sucked and how it made me more successful or happier in my later years.  I don't want to re-hash my past or show how it made me stronger. I want to write about the fact that it's not the 'bad times' that create us, it's how we deal and learn from them that matter.

You can place siblings together in the same family situations, yet there is no guarantee that they will both come out into adulthood in the same mental frame.  More likely one will be successful and one will be a screw-up -- with both sides blaming each other for the residual baggage they bring into their adult years.  Why should that be?

The thing is, I don't think there is one person out there who thinks their childhood was perfect.  Admittedly some are 'more perfect' than others, but we have to remember that our parents are people and they screw up.  Their screw-ups will diminish our perception of our younger years.  Regardless of how well you parent, you can guarantee that at some point your kids will come back at you and claim
you 'ruined their life'.  I joke to D, that when he becomes a adult we will do a deal.  He can pay for my hair-dye and I will pay for his therapy.  I have pretty much accepted that he will claim I was the reason for X, Y, and Z happening in his life.  He will then have kids and realise that he is now the one to blame ;)

Taking D as an example, I know that he will not have the happiest childhood.  When he hits 18, he will look at the stuff he is going through now and see how hard it was for him.  He will see the fact that he wasn't in school much.  He will see that his friends thought he was strange.  He will look at the fact  stopped him doing everything he ever wanted and my favourite word is "No".  He will look back at all of the international moves we made and wonder why we couldn't stay in one place for longer than a car-lease. He will remember that I hated playing his computer games with him, even though they were the most important thing in the world.  He will remember that I would lose it occasionally and shout at him.

When he hits his teens, he will probably dye his hair purple, wear the strangest clothes on the planet, drink, smoke, swear and get into a few scrapes.  He will storm into his bedroom as I tell him his girlfriend, or boyfriend or consensual animal can't stay the night.

He will look back at all the stuff I am doing now -- not working, spending all the time in school talking to staff, ferrying him too and from therapy -- and call me controlling.  I never let him have the freedom he wanted.  The fact is, if I went the opposite way -- I just let him get on with it and assumed he would figure it all out on his own -- then I would be blamed for not caring or helping him enough.

He won't remember the trips out we had together.  He won't remember me holding him as he slept or the hugs I gave him when he had a boo-boo.  Doesn't matter if he remembers or not.  I will still do them because I will remember.  I will also take ton's of photo's as evidence when he says "You never took me anywhere".

Negative events become more fixed in our memories than positive ones.  You remember the horrors, but not so much the joys.

If this is the situation with our kids, it stands to reason it is the same for us too.

Our lives and childhoods are never going to be perfect.  It stands to reason that they won't.  We are not our parents and they are not us.  No matter how we try to understand our kids, or we try to understand our parents, it will never be enough and as such there will always be disasters.  Yep, there are some parents who do jack shit for their kids -- who are frankly no more than kids themselves.  There will always be parent's who in our conservative mind-set should never be allowed to procreate.  Their kids will grow up fine.  However, there will also be parent's who no matter what they do, from reading all the parenting books in the library to taking courses will still produce screw-up's.

The fact is that the most important thing we can remember is that we are going to mess-up our kids.  The  most honest thing we will ever admit is that we are making this up as we go along.  The best skill we can teach our kids is that when life goes wrong, we pick ourselves up, dust ourselves down and we start all over.  That disasters are only disasters if you let them rule your life.  You are only as strong as you want to be.  No matter what we do as parent's, it's the childs' attitude that will prove wether they are a survivor or a victim.

Because in the end, that's what they will be.  A survivor or a victim, there is no middle ground no matter what we do.  Our job as a community is to show kids how to be a survivor.

As I said before, this post wasn't in any way set to diminish anyone or their lives.  This post wasn't designed to say my life was crappier than yours, or your childhood was shittier than mine.  I don't want to rehash the stuff that happened to me in the past as such, because frankly I am over it.  I have dusted myself off and attacked life with a bloody big hammer.  I just wanted to say that teaching each other how to do just that; to take the knocks and bruises and come back up with a smile and a whoop-arse punch is what makes the difference between a crappy life and a good one.

Friday, June 8, 2012

If you know it, pass it on -- Challenging "Information hoarding"

A semi-drunken rambling post...

I was talking to my friend Jesse the other day about a child he was helping who appears to have a condition similar to my son D.  The information I gave him has helped him cement his role and help his charge.  At the time, after spending a while messaging Jesse, I turned around to hubby and explained I had been chatting to a friend about PDA and my comment was, "If you have the information, you should pass it on".  I was then struck by the fact that this isn't how we are meant to operate.

Knowledge is power.  Knowledge is wealth and knowledge should be saved.  I have friends who don't like doing pro-bono work because it get's them into a mucky mire of "owing/being at liberty to others" without any compensation.  They have worked hard to get to the position they are in.  It has taken them time and money to get where they are.  As such they should be compensated accordingly.  Feelings of being "taken advantage of" or "being worth less" than if they charged an appropriate fee.  I get it. I do.

Actually, no.  I don't get it.

You see, I don't prescribe to the usual "you make your bed" mentality.  I feel our world is a community and we should be a part of it.

Yes, I have spent time and effort to understand the issues I do.  The path looking after an ASD child has been seven years in the making and possibly thousands of dollars of trial and error.  My road to barefoot running took over three years of research and hundreds of hours practising.  I have experience and knowledge that probably exceeds the man on the street and if the man on the street wants a quick fix on my knowledge then he should pay for the privilege. Right?

Should our world be limited to dimes and cents?  Should we sacrifice the benefit we can offer to others just because they don't have the finances to pay for it?  Is the knowledge and experience mine and mine alone?

The fact is I am just a part of the chain in knowledge.  I may have learnt via my own experiences, but I also learnt from the experiences of others.  Their knowledge was given for a nominal fee (if any payment was paid at all).  Is it right I should take the information they gave to me for free and then call it my own to distribute as I feel fit?

No. It isn't.

The information inside your head isn't just yours.  It belongs to a mirad of people.  You take parts of someone's else consciousness and you meld into yours. Okay, if you went to college you probably paid for a lot of it -- but likewise some of it you didn't.

I get that we all have to eat.  We all need to put bread on the table and wine in our bellies.  There will be times where we have to charge a fee for what we are able to do.  There are times when the use of the information in our grey matter holds us accountable.  If you are a lawyer, the advice you give can mean the liberty of the person you are helping.  That is a huge responsibility and yes, when you take ownership of someone elses' life you should be compensated for that.

I am a spiritual (although not religious) person.  Some will call it fatalistic or naive.  That's not quite true.  I believe we are the masters of our own destiny.  I don't rely on someone else to make my life better, that is for me to do.  However, I do believe that there are times where you are given opportunities that make your life better and they are a result of the actions you have done.  Some call it karma, some call it "paying it back -- or forward, or sidewards, whatever" -- regardless, you get paid for what you do in this life, it's just not monetary.

I'll happily accept and use the information people pass onto me for no other reason that they want to help.  Sometimes the help is useful, sometimes it isn't.  However, very rarely have I met someone who passed on information without an honorable intent.  I'll take parts of what they have taught me and I'll use it.  It becomes a part of me.  As payment, I pay it forward.  I'll then pass my information on.  I accept some of it will be used and some of it won't.

There is no agenda -- I don't want money or power or privilege.  I just want to help someones' path be a little easier.

There are only so many people in this world.  Granted six billion people is a lot.  It's not like you can invite everyone to your barbecue and imagine you can fit them on your small patio.

Yet, if I help two people today -- even in small ways, then it stands to reason, that tomorrow they in turn will help two others (each).  I was never very good a maths, but I reckon, sooner or later that small payback will come back to me some way or another.

Tomorrow, or next week, or next year, I will learn something more that will make my families life better.  The cycle grows and starts all over again.

I have to admit I am not sure where I was going with this post when i started it.  It's a drunken rambling and I guess I should just call it as such.  I just think this idea of "Information hoarding" doesn't help us in the end.  Our deeds get passed on exponentially by others.

I vaguely remember Jason saying in a post (a long time ago) about knowledge being a gift.  I wish I was sober enough to find the post, but anyway... it's true.

This blog and my life is a gift where ever and when ever it's needed.  Feel free to take the information you need and don't be afraid to leave the parts you don't.  Live happy and gift your knowledge on.

And no, you can't have the receipt and exchange it for a multi use blender! *rolls eyes*

Friday, June 1, 2012

Never piss off the Mama bear

Just a quick update on my running life at the moment.

Umm.. there isn't any.  Ahh, blog post finished -- is it too early for beer?

Just as I feel fully recovered from a bout of flu and I was able to pull myself back into the running gear -- and after a month away from running, pulling is an understatement.  The phrase "Quart into a pint-pot" comes to mind.

So, I was fit(ish) and ready to go. Then D became sick.  Poor lad, he was full of flu and he spent 3 days  (plus a weekend) away from school.  On the Monday when the school returned D still seemed under the weather, but he insisted he wanted to meet his friends.

I arranged a short day for him and let him go.  The first day was difficult but okay.  However, days 2, 3 and 4 were not so manageable.  Yes, having a difficult day is an improvement to what happened to D over the following days.

His class was evacuated 3 times in 3 days.  The violent outbursts were dramatic, prolonged and actually uncharacteristic.  As I mentioned to his Resource Room teacher -- he hasn't had any violent tantrums in months.  Even on these off-days he was still calm at home.  I was at a loss to help her.

What has resulted is the beginnings of a battle.

On investigation it seems as if D may qualify for a little sub-set of Autism called "Pathological Demand Syndrome" or PDA.  It's a very new version of PDD-NOS which has primarily been investigated in the UK but little elsewhere.  When reading the diagnostic description it was chilling.

D never fitted well into the Autism mould.  I concede he does have developmental difficulties, but his social behaviour, imagination and his basic empathy seemed to be at odds with the classical Autistic definition.  The documentation also cited that conventional Autism behavioural techniques are more likely to increase problem behaviour not reduce it.

PDA fitted all of these anomalies as well as explaining in detail why he had these violent outbursts.  His therapists agreed that he seemed to fit the profile, although they weren't qualified to diagnose him as such.

It was clear at the end of the "week of hell" that D's mental state was in the toilet.  He had no self-confidence, he was on the verge of being depressed and it was clear he was having anxiety issues at school.

Issues at school -- this was the problem.  He didn't exhibit any of these issues at home and only very briefly in therapy (once, on the day he came down with flu).  Only at school.  This to me indicated that there was something at school that was triggering him.

I kept him home and decided to home-school him for a bit until we could come up with a plan to integrate him back to class.

The plan provided by the school was the same plan they created before spring break.  Two hours a day, stuck in a room by himself with little un-orchestrated, social interaction with his peers.  A plan that may have prevented some triggers, but a plan that increased his sensory-seeking behaviours at home and reduced his ability to socially interact naturally.

In one of the meetings with the Resource room teacher, she made a comment that made me wonder.  She asked if I had discussed the issues happening between his classroom teacher and his previous SEA (who is off sick indefinitely) in front of Dylan.  Umm.. what issues?  I admit, I had heard random rumours.  I had been a little confused by some comments D had made about how he had been treated in the classroom and I was fully aware his teacher didn't like me or D that much.  But this made me wonder -- was there something more?

I made a decision that I wouldn't send D to school until we had an acceptable plan to deal with his behaviours (that didn't involve un-official exclusion) and any incidents between his SEA and teacher were fully disclosed.  I needed to know if incidents in the classroom had created an anxiety in him in regards to school.

Let's say nearly three weeks on and it is clear the school believe D's behaviour has nothing to do with them, and I am getting more concerned that it does and they aren't addressing it.  I can't see how putting a 7 year old in a room on his own will stop him reacting negatively if he is given a demand which is a potential trigger.

This is starting to get messy.  Lines are being drawn in the sand and we are amassing our own armies.  My army is D's home therapy team.  The school has the Autism Outreach team.

I don't care -- I know in my heart that the situation with the school has created educational and mental issues with D.  I have seen the change in him since he has been home-schooled.  He has managed 3 months of work in 2 weeks.  His maths, reading and writing have improved.  He is happy, confident and smiling.  He wants to learn.  The change is dramatic.

Keeping him at home all the time may not be an option as D needs to learn and test his social-skills with his peers.  I am also not letting the school board keep his funding money without providing him any resources, which is the scenario that would happen if he was home-schooled.  Trust me, it appears home-schooling D would be a "win-win" situation for them.  They don't have to spend time dealing with a "difficult" child and they get $18,000 to spend on SEN kids they can manage.

I am on a battle-quest.  I have the school-board in my sights and I am squaring up for a fight.

I am a pissed off Mama Bear, hear me roar!  Then run away bloody quickly because this is going to be a battle where there will be casualties and that list of injured will NOT include D!