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.