Help!

Originally posted on my previous blog: http://myspecialstorybooks.blogspot.com/  20 March 2012


I don't write much anymore.  I rarely post on this blog and what the future holds for it I don't know.

I lost my writing itch some time last year when I lost my self.

I had a breakdown.  My life exploded, my heart shattered and I've been clawing my way back very slowly one tiny broken hearted piece at a time putting one foot in front of the other as it's all I've been able to manage.  I stopped writing and I also stopped speaking out.  I declined public speaking engagements and turned down media invitations to speak out about autism, carers and what the issues so desperately in need of overhaul are in these areas.   I've watched with interest the recent media interest in autism and have actively avoided making myself available to participate in any of it and have shied away from suggestions I should get back out there and speak out to raise awareness again.

I've been busy taking care of me.  I haven't had the inclination to be a voice for autism or carers for so long and my inclination to help others was crushed last year along with my heart so bitterness has crept in and now I'm just trying to stay afloat in a sea of self doubt and autism battle scars.  I am full of doubt about what the hell I can do to make a difference anyway and why the hell I'd bother when all the talking, speaking and fighting yielded me a life that now resembles a train wreck.

I made time just now though and finally got to sit down for the full 18 minute ACA (Channel 9's A Current Affair) tip of the iceberg forum on Autism just now and watched online  (http://aca.ninemsn.com.au/video.aspx).  Within 30 seconds I started bawling my eyes out and not because my children are severely affected, not because their future is bleak because of missing out on therapies and not because I relate to the exhausting 24 hour grind of stimming, non verbal frustration based meltdowns and being injured every time I attempt to hug them.  Quite the opposite.  How blessed our family is that we DID get access to life changing early intervention after stamping my foot, screaming at medical professionals to LISTEN and pushing the buttons of every professional in an educational setting we've been involved in (which has NOT won me friends but I frankly don't give a crap as I need my boys to get EVERYTHING EVERY child should be entitled to in this "lucky" country so making more friends is the last thing on my one track mind when fighting every step of the way for THEM).

Nope, I don't have to endure the emotional agony of being pushed away because they are so sensory defensive that a hug is painful for  them.  I can thank the hundreds of hours and thousands and thousands of dollars (some because of funding and some from our own very empty pocket) we sunk into sensory integration therapy from world leaders in the field for the regular hugs I receive.

I don't have the unimaginable heartache of never hearing my babies tell me they love me or even the frustration of not understanding a request for a drink or toilet break because my boys are verbally capable of telling me what they need thanks to the hours of speech therapy and O.T. which is also because of early intervention funding and the sacrifice of accepting early on we would never own a home and instead spend what we had aside for the Aussie dream on therapy.  I gave up the idea of going back to work and have done Autism full time 4.5 years now to give our boys the access to dreams of their own one day to the detriment of everything else in my life.  I lost several friends for varying reasons (none of which I dwell on as I have no time and really never will so have accepted that Autism ain't for wimps and those who managed to stick it out are the keepers anyway).

I've pissed off supportive family members regularly because I had/have no time for anything else.  Nothing else.  I don't remember birthdays, I rarely call, I have no idea what's going on in anyone's lives except my boys.  I forgot I had a husband who I pretty much ignored, resented and then lost.

I lost my husband who eventually got fed up with being ignored and resented and when you ignore someone long enough they will gravitate toward someone else who doesn't ignore or resent them.  I've never said that one out loud online before.  Never confirmed what many suspected.  If you suspected that misery loves company, then yep, misery found some equally miserable company and I lost him to her.  Absolutely devastating.

She's out of the picture now. I guess it was just another "fight" I fought and won if winning is even possible in the war of broken spirits and shattered hearts.  I slayed the dragon of pathetic misery taking what was not hers to take and I fought for my husband to come back to me.... A fighter.  He is back but life is fundamentally changed. I'm fundamentally changed. I'll never be the same.  This means my boys lives are fundamentally changed.  That makes me angry, sad and a little defeated.  I've won so many battles for these babies and there is no doubt that they are leaps and bounds ahead because of it.  What was the cost?  There is carnage.  So much carnage.  Life is forever different now.  A new fight ensues now.  The fight I fight with myself and my conscience.  Should I regret the actions I took in my battles because of the casualties like friends and my marriage or celebrate the wins with gusto and accept all's fair in love and war?

Should I fight my own misery now?  The misery of heartbreak and betrayal is deep.  So very very deep.  I've needed to call in reinforcements for this fight.  Counseling.  Counseling to help communicate with my husband and rediscover our broken battle scarred relationship.  Even the language of counseling can be likened to battle terms too.  Apparently I attack.  I attack autism.  I attack obstacles and I fight.  I say I ignored my husband but through counseling it's becoming evident that I've become so familiar and accustomed to attack mode that I seem like I'm on the attack all of the time.  I guess it's hard to live with communication that feels like it's an attack on your abilities and commitment all of the time.

No wonder misery entered.  Misery only loves miserable company for so long it seems though, particularly when that miserable company acts as a mirror.  Looking into a mirror and only seeing selfish weakness when a life in autism requires the polar opposite being selfless strength NOT selfish weakness, well it acts as a wake up call to the weak to appreciate just why being ignored and feeling like that isolation was an attack on your partner's commitment is almost necessary to just "suck up" during a time when a mother's babies need her to be ruthless, friendless if necessary, lonely if required, invincible in every situation requiring the fortitude to FIGHT for her children and single minded enough to beat a path of fairness for a better future.

I wonder if access to counseling from day one of diagnosis would have helped?  I wonder if his misery might not have gotten to the point of seeking out equally miserable company.  You have to wonder if the divorce rate in this world of autism could be helped somehow with better support for parents who become soldiers.  It's so hard to remember which side you are even fighting for after a while.  It all just becomes part of the war.  One day merges into the next one with battle after battle.  When you are losing parts of yourself along the way and there are few people willing to join your army it's almost inevitable that those you thought were on your side defect, go AWOL or just surrender in their own fight to stay alive or feel alive outside of autism.

So now I'm fighting the battle of myself.  The battle of marriage and the battle of forgiveness.  I know there will be so much more fighting to do.  I need my husband and I to be a united front and I'm trying to muck in and get to the next battle together amidst the bombs of life with autism dropping around me.

So when I watched ACA and saw the families describing their lives, saw the kids who did not get early intervention, heard the parents describing the strain on a marriage and the urgent need for reform in the areas of funding in all of it's edited glory I cried.  I just cried.  What hope is there when the minister for disability can't even show up for the forum and instead sends a tokenistic and unbelievably condescending video message waxing lyrical about "understanding" our families?  Stop talking and join the battle.  Take up the fight for fair education opportunities for our kids.  Take up the fight for fairer funding for essential therapies for our kids and take up the fight to support our kid's carers to better be able to stay in the fight TOGETHER.  We need respite.  We need help.  We need awareness and we need it now.  None of us have another 4 years in us and those who have been in the war for 10, 15, 20, 40 years don't have another day in them.

I cried because my boys got the funding and we used the funding.  They are now high functioning and doing well.  Now what?

What happens now?

It came at the cost of my health (mental and physical), my marriage, my career, my financial future, my dreams, myself.

I have post traumatic stress disorder from the battle.

I said "we" need help and I meant the autism community as a whole.  "I" am part of that community and "I" need help.  Stop talking.  Help already.

Every single child in this country deserves the best.  Including those with autism.  Including mine.

Tell the politicians.  Don't accept that in this country children are going without essential therapies and families are falling apart in a hopeless fight.  It's not good enough.  I'll start speaking out again but I need help.

April is Autism Awareness Month.  Start helping, start speaking out and start helping.

Minister Jenny Macklin.  Are you listening?  Are YOU helping?

I am on my knees.

What's love got to do with it?

Originally posted on my previous blog: http://myspecialstorybooks.blogspot.com/ 4 March 2010

For a change of pace I thought I might write about my relationship with my beautiful boys' father tonight.  He rarely gets a mention over in blogtown and more often than not resides in "dogtown" which is a mythical place I've created in my mind much like the proverbial doghouse many of us girls refer to when the hubby has done wrong... Or just annoyed us a bit.......  For whatever reason of the day.... ok minute.....  that we've...... ok then.... I've decided warrants a one way ticket to "dogtown."

I heard a statistic that parents of children with Autism have an 87% likelihood of divorce.  I'm way too tired tonight to trawl through the internet or any of my numerous Autism books to find exactly where that statistic came from but even if it's wrong, it's pretty close.  It's well recognised if it's not 87% it's at least a VERY high divorce rate in our families.

I decided to write about A tonight because there are days..... ok..... weeks sometimes that go by and I don't have a conversation with him.  We talk about the kids and what's for dinner and even stretch to talk about what's on TV but I'm talking about a real conversation of substance and depth about what's going on in our worlds that have become almost separate.  He works all day and I do the "kid stuff" and run the "house stuff" and stuff as much advocacy, awareness raising and ignorant arse kicking as I can into any day before scratching my constant writing itch most nights and collapsing into bed in the wee hours long after Andrew has toddled off to snore loudly until he gets up at the crack of dawn to work all day again.  That's our existence, oops, I mean life.  Anyone who is reading this who has a child with any kind of diagnosis will be nodding their head right about now because those of us in our exclusive club know how easy it is to get caught up in the world of only discussing what appointments we have to be at, what paperwork needs to be signed for whatever tiny skerrick of funding the family is trying to attain and who's turn it is to change a nappy or get up to whoever is restless in the night because someone is ALWAYS restless in the night.

If I was to be honest, I cannot remember the last time I asked the man I love, how his day was and I certainly haven't asked him if anything has inspired him or lit up his soul recently.  In fairness, he's a fellow of very few words so it's very easy for me to blame our lack of communication all on him.  I joke our kids have my desire to be social and A's skills....  Oh how VERY funny of me!

I would have to admit to being very quick to point out all of the things he does not do but I cannot remember when I last thanked him for cooking me a beautiful dinner (which he does often) or acknowledged that I know he does his best, works hard and obviously loves his family.

This is a man who I just noticed dragging a mattress down the hall so he could sleep on it instead of in our bed tonight because I complained this morning that I did not get much sleep due to his snoring (in fairness, it is a little like a freight train carrying a herd of mating cattle powering through the bedroom all night) but still, he's thought of me tonight and to allow me to get more sleep for my next round of butt kicking tomorrow, he has put himself out (without talking about it at length or analysing ourselves to death through an argument).  He just trotted down the hall with his mattress and pillow after giving me a kiss and wishing me a good night's sleep.

I mentioned that he cooks for me.  I should probably expand on this and explain that he cooked extra each night this week and set a meal aside in a take away container so I could deliver a home cooked meal to a dear friend who is staying with her seriously ill child at hospital indefinitely. see here  I mean, what a man.  I didn't ask him to do that, he just did it quietly, without fuss and told me the meals were in the freezer for when I next popped over to the hospital.

He hand mows a very very very big lawn so our kids are safe from snakes and other nasties that dwell in a rural yard and pretty much bends over backwards to provide whatever it is any of us are demanding of him on any given day.

Why am I so soppy tonight?  Oh, I don't know really.  I think the dragging of the mattress tugged at some forgotten heartstrings that are all too easily put to the back of your mind in a lifestyle well documented to be prone to divorce, stress and hardship.

I've connected with some really great women over the course of the past few months via a business course I'm doing and I realised that most of these women talk to their husbands and know what it is that their husbands like to do and one even set herself a seven day challenge to not complain or be negative at all about her partner.  See here, it's hilarious....

I'm not promising I'm setting myself such challenges here but I at least acknowledge that if there is a communication breakdown it's not just the quiet man's fault.....  Perhaps I should stop imagining fictional towns of doghouses to send him to if the poor exhausted, drained and seriously neglected guy goes to bed without taking the bloody garbage out and instead thank him for cooking me dinner pouring me a glass of wine and asking me how my day was.  Maybe I should even follow his lead occasionally and do the same for him.

It's so easy to use the Autism excuse for so many things.  I accept it can be all consuming and does place  stress on a family both emotionally and financially but geez, it seems I've forgotten I am married and that we were madly in love.  I think we still might be underneath the pile of stress we live under.  I'm not sure when it was that I woke up with a really kind and patient flatmate instead of a life partner who is clearly waiting for me to at least walk down the hall if not another aisle and acknowledge his enormous but quiet contribution to our family.

I think I'll head to bed and call the wreckers in to demolish the mythical dogtown in my head whilst I get my good night's sleep thanks to my very considerate husband.

J and H have a really wonderful father and over the next few weeks I am going in search of my long lost but really wonderful husband.

For now though, I am heading to my quiet bed.

Night all.


**** Endnote:  A has never read my blog.  For those who do read it I'd like to tell him myself of my husband search so let's keep it our little secret for now and I'll surprise him tomorrow night with a meal, a glass of wine and an enquiry as to how his day was.  We have to start searching for our relationship somewhere and I think that's a good place.****