Autism Gratitude Project 2012 Day 14

Autism Gratitude Project 2012 Day 14 - I am grateful for boundaries. My kids thrive and respond well to boundaries being set. It helps them work out what is expected/required from situations that would otherwise confuse them and see lines being blurred and confusion about exactly what they need to do. They understand that acceptable behaviour at the park, in the back yard and whilst wrestling with their therapists at The Sensory Gym might not be quite the same as what is ok at school, visiting someones house or in church (that one is J specific... See here for a post explaining THAT special interest). 

It makes all aspects of life so much easier for them (and me) after I say, "These are the rules whilst we are HERE doing THIS." They don't get it 100% right 100% of the time but it is a handy redirection tool when I need it and does in fact work most of the time. It's hard for people with ASD to understand how social situations work and what is expected so we've worked on boundary setting from very early on.  I'm so grateful the boys are capable of transferring their understanding of boundaries from one situation to another (with help and support).


I'm grateful for a much more peaceful life because of clear boundaries and expectations.......  Well at least in my family life with regards to the boys.........

The rest of my life needs a complete overhaul in this area.  I've made myself accessible to many through volunteering for my favourite charity for the last three years.  I've extended myself beyond what is simply "acceptable" in many ways and have stretched myself way too thin by not setting clear boundaries around what is OK for people to ask of me and what is perhaps taking advantage or interfering with MY time.  It's really nobody's fault but my own.  I have the disease to please and an inability to clearly say no.  I say yes to things I'm not comfortable doing and end up resenting it.  It's so annoying and I constantly kick myself for taking time away from ME and my family because I said yes to something less important to me but more important to someone else.  I've made tentative steps in this area at least.  I no longer answer my phone to ANY numbers I don't recognise, nor do I give my number out to anyone but "real life friends" as it was not unusual to receive several calls per week from people seeking counselling I am not qualified (or currently strong enough) to give.  All charity calls are now directed to the actual charity NOT to me.  

Because I've been so open I've created a situation where people have mistaken generosity with my time for a no holds barred ticket to full access into my life.  Further to that, I've been relaxed about the boundaries between what is an unspoken line between friendship, fun and frivolity and what is a serious responsibility to an organisation that has elected me to make decisions that may or may NOT be popular sometimes and acting upon them definitely not desirable within the boundaries (or lack thereof) of friendship.  I have failed to draw clear lines on many occasions because I don't like to be "bad cop."

The autism world is a minefield of politics.  The autism CHARITY world is even more so.  In my time in this world of "helping others", I've had my motives questioned by people with no real clue about who I am and what I stand for, I've had several encounters with people who disagree with decisions I've had a part in making about how we move forward as an organisation, I've faced and taken a HELLUVA lot of criticism and I've given so much of my time that I have brought myself to the brink of burnout.  I would also like to think though that maybe I've made even a tiny bit of difference to even one person struggling in a similar world to mine.  Then the other "stuff" might be worth putting up with (I'm at a crossroads about continuing as a volunteer right now you see).

Over the last few weeks, I've failed to draw clear lines between "business" (charity business) and pleasure (friendship).  In the process I became "bad cop."  I don't like it.  Again though, it's my own fault.  I did not delegate bad cop to anyone, I took it on to spare others who would more than likely dislike being the "bad guy" as much as I do.  However, because I didn't ask anyone else to carry out the more formal role of managing business in this situation, I don't really know if that's true.  Maybe every person available to me in my extensive support network would have happily taken the load on anything I asked if I had in fact asked.  I did not set crystal clear boundaries between what is my role as the president of an organisation and what is the daily, natural and relaxed exchange between friends.  Because my lines were not painted in black and white in this crazy thing called life, I'm now frustrated by "feelings" being brought into a transaction that if not for friendship being involved would be straight forward with expectations either being met or not met.  It's not an isolated incident.  I'm a serial offender.  There has not been a work/business situation EVER that I've set clear boundaries between being friends, colleagues or adversaries.  I constantly make the same mistake and try to be "popular."  I distinctly remember managing my family cafe business in my mid twenties and could not bring myself to ask the casual employees to do the bin cleaning duty within their agreed job descriptions because I was mortified for them to have to do such a vile job.  I took the "popular and cool down to earth boss" option instead of the managerial responsibility and I cleaned the filthy stinking festering bins myself.  Then I went out (after a long hot shower to clean off the stink) with my employees every Friday night for very very social fun filled drinks.  Popularity and being "liked" by my employees was more desirable to me than being an effective leader and delegating fairly and properly in relation to the management structure or being clear about what was expected of them in THEIR role for the job they were commissioned to do.

It works.  For a while.  Then I have to put my "boss" hat on or my "disgruntled employee" hat or even my "client" hat on and deliver what must seem like a blow out of nowhere from a "friend."  So again I find myself in a stinking mess of festering rubbish, tricky politics and necessary clean up if I am to resolve either the business relationship and/or the friendship.  This brings me to my crossroads in "hanging in there" in charity world knowing that having the top job is not always all that tops (particularly when you have to be the actual bad guy boss however well or not well you try to do it in a friendly fashion under your many confusing hats).....

As I sit here and contemplate how exceedingly well I've managed to teach my children boundaries for every situation they currently need to adhere to them in, I must also contemplate why I allow myself to put short term social "likeability" before long term respect and effective business dealings (whether charitable or not).

What has this got to do with autism?  EVERYTHING.  An autism diagnosis when it first arrived in my world was all about impaired social development (I thought).  I was completely stuck on how terrible I thought it would be to have the wonderful world (to me anyway) of friendship, social acceptance and relationships of all kinds being so confusing or even inaccessible for my kids.  There is nothing more valuable to ME than friendship and love.  I get now that all that is my own "stuff" and my feelings about friendship being the be all and end all might not be everyone else's idea of what the meaning of life is.  I see now that the boys like having friends but may or may not be as socially motivated in their life decisions as me and that's their choice.  Whatever floats your own boat and all that jazz.

I do still strive to make my children's reality different to the stereotype of loneliness and isolation within a world of social confusion though so they do have options.  I help them set those clear boundaries in all aspects of life and it really seems to be helping them.  I just might be the epitome of that old adage that those who can DO and those who can't TEACH.  EEEKS!

If I could just learn the lessons I'm trying to pass on and dig my way out of the festering stench of garbage right now I might be better qualified to impart those lessons to the boys as they grow up and I might be able to salvage some of this "waste" into a an improved way of relating made from recycled traditions (like the drinks on Friday nights) and also some new materials like clearer boundaries and expectations.

Not sure how to go about it yet and I need some time to process, assess and regroup before I make any big moves or attempts at doing a clean up on a mess I'm not sure of what the magnitude is yet.  I don't have a lot of excess digging strength right now but hopefully soon I'll be calling in the whole clean up crew to give me a hand in the mop up and they accept by grabbing a broom, a mop, a shovel or even a ratty old rag to wipe with.

For my boys at least, I remain grateful for boundaries.  I hope to be able to say the same for me by at least NEXT year's Gratitude Project.

Autism Gratitude Project 2012 Day 13

Autism Gratitude Project 2012 Day 13 - I am grateful for the life of personal truth ASD brings. I love how my boys live so honestly. There is no pretence, no rubbish and false niceties or people pleasing. They either like you or they don't. They either like things, activities, experiences and stuff or they don't. There is just no bullshit if I am to keep to their "real" no holds barred communication and approach to life. Often I'll ask them to do something because I think they should do it to "fit in" or for easier "social acceptance or appropriateness." I love that they answer with, "NO! I don't want to." Yes, it's frustrating sometimes but I kind of like how doing things because they "should" just doesn't even enter their minds and doing things because they WANT to is how they live first and foremost. Even a meltdown is sometimes their way of saying, "Um, no way lady, you have gotta be kidding if you think I'm wasting time with THAT request." It's just so bloody honest. We could all learn a lesson in that some days. I can't tell you how many times I've found myself doing something or being someone for others. I totally concede that pleasing one's self 100% of the time without regard for anyone else is not too practical for building relationships in the long run but jeez, isn't it just so refreshing sometimes to just say NO honestly and without apology! 


I'm grateful for the complete honesty of ASD.

Autism Gratitude Project 2012 Day 12

Autism Gratitude Project 2012 Day 12 - I am grateful for play. Not "play therapy" but real, natural, child's play. Something I wasn't sure I'd see back in the beginning stages of diagnosis days and maybe something I wouldn't have seen if not for all the "play therapy" we have done for so many years BUT something I see all the time now. Caught up with some friends and their kiddies this morn (some spectrumites, some not) and all the kids played their hearts out. There was no need to shadow the kids and "help" them take turns properly or demonstrate how the toys work and how the game goes and so on. They all just played. 

I was able to just sit and watch the boys play with their friends and they occasionally moved off to regroup and have some alone time but before long they were rushing back into all the games and boyish tomfoolery (oh how I've always wanted to use that word...  It's just so delightfully silly and descriptively fabulous)........

I even commented at one point, "So THIS is what a "normal" playdate feels like."  I wonder how many other mums have been able to just sit and watch their kids play without the pressure of being a much maligned "helicopter" parent, always watching their child's every move in case you need to step in, explain "behaviours" and "help."  I wonder if the parents who have never had to be that ridiculed and maligned helicopter parent realise how special that is and how the "dull" moments at the park or on a playdate are the monumentally "huge" moments in my life.


The simple act of sitting and being in the space with other mums and having a conversation whilst the kids played was so refreshing, recharging and so so needed.  I could sit with my closest girlfriends and laugh freely and also take the time to talk about the bigger "stuff" on my mind...  Like how angry I get with myself for not just "being over it."  The "it" I'm trying to "just be over" is the "misery loves company period" and it hits me out of the blue without warning and no matter how many "good days" I have I know I'll still have bad ones.  I "just want to be over it."  Have it finished already and MOVE ON freely without ever turning back to feel the pain.  It's not possible.  I know that.  It will take as long as it takes and I'll have to cope with being brought to my knees every so often without warning for a while longer.  I knew in that moment, talking with those friends whilst the kids played, it's ok though.  I have these friends to hold me in those moments and let them pass.  I have this support at my fingertips when the times are good or bad.  I'm not isolated anymore.  I can draw on the playdate moments where I recharge with the strength my friends provide with their never ending patience and judgement free ears, shoulders, hearts and arms.  Having an opportunity to just talk, be secure with the people I was sharing the "dull" but huge moments with is not something that is easy to understand unless those moments are huge for you too.


I can enjoy a playdate with my boys playing happily and whilst sitting in the safety of those I choose to have in my world who love and support me and my boys as their kids play too.


I am grateful for play.

Autism Gratitude Project 2012 Day 11

Autism Gratitude Project 2012 Day 11 - I am grateful for improved sleep patterns over the last year or so. The boys are so much better regulated after years of sensory integration therapy AND very strict routines around bedtimes. I went approx 3 years without a full night's sleep and my health was shocking (sleep was just one contributor to that).

Pretty much since the diagnosis of J, I battled ill health.  It's common that after a trauma (diagnosis) your body shows physical signs through ill health of what you are experiencing emotionally.  All of my sickness was concentrated around my throat area and whether it's just because I'm a bit of a hippy at heart or because it's true, I don't think it's a coincidence that the area of my body responsible for my voice was most severely affected with health problems.  It's like I was physically choking and literally silenced as I sunk further into losing myself and concentrated only on others.  I had tonsillitis for 4 years.  Yes.  4 years.  I was on antibiotics that entire time which was NOT helping my health in other areas but seemed to keep the bouts of tonsillitis at bay for a week until the next attack. Eventually I had my tonsils taken out and I haven't had a sore throat since.  Around the tonsillectomy I also found a lump in my throat.  That turned out to be, after further investigation, one of several tumours on my thyroid. So adding to my tonsil issue we could now add a Cancer scare to the mix of an already stressed out household (Cancer under control for now BTW).  If you are a regular reader of this blog you will know all about my "misery loves company" period of personal devastation (you'll have to read the link if you have any hope of keeping up).  Misery entered and kept my partner company around the "Cancer scare period."  (Noice).  Because I'm so tired today and not feeling too Zen, peace, love and mung beans in hippy fashion about anything much, I'll allow myself a little snipe about THAT and say, I wonder how "Misery" sleeps these days knowing about the timing of her actions.......?  Anyhoo, in with anger and out with love and all that hippy jazz and some mutterings about forgiveness and getting back to gratitude not ATTITUDE already....  Why am I so tired today if my boys sleep patterns are improved you might ask?


Last night my littlest small was very sick with Asthma and I had my old "normal" of under 3 hours of broken sleep whilst tending to him and supplying Mummy cuddles. Frankly, I don't know how I survived without sleep for so long. It's true. It's a form of torture to be deprived of it. 


So many families don't get any quality sleep in the world of ASD. It's incredibly common for our kids to be bouncing off the walls 24/7 and for parents to be experiencing sleep deprivation for years and years (studies showing living with ASD yields stress rates equal to that of soldiers in combat, physical health becoming very poor, depression rates soaring to being HIGH, divorce rate soaring even HIGHER.... Ummm YOU do the maths and a study around THOSE issues to show how integral RESPITE is for ASD family survival instead of doing pointless "cause" studies about fatty boom bah mummas being the cause of their babies developing autism.....  Now I wasn't hefty until AFTER autism but now I'm thin again due in some part to "the misery loves company period" being partially the motivation to get my thin on, so I should maybe be grateful to "Misery" for that one day too....  Hmmm.....  Not today though, nope, "Misery" if you are reading as you told me when I met you that you do read my blog (that meeting is a whole other blog story, I'll save for another day)....  NOT GRATEFUL TO YOU TODAY, NOT YET....  **Sincere apologies to my beautiful supportive friends who have been coaching me on being peace, love and mung beans about all things in the universe including the "misery loves company period."  I'm calling in my right to slip on the "letting it go thing" today though because I'M SOOOOOOO VERY VERY EXHAUSTED. 


Ironically, "Misery" told me all about her own exhaustion and depression ("Misery" is also an ASD Mum... yes you read that right.... and probably deserves some compassion I guess..... yes, you also read THAT right).  She told me about her depression and exhaustion during our meeting and I think she might have been using it as an excuse for the seeking of company.....  Jesus! (Sorry J and all Christians for using the big guy's name in vain)...  Anyway, JESUS! In this state of sleep deprivation, I couldn't drum up the energy to schlepp down the hall, let alone embark on a deceitful and family destroying adventure of escapism and IMMENSE SELFISH STUPIDITY.  Shit.  Sorry again lovely support network mung bean friends.  I'm done now, I promise.  I'll curb the "Misery" sledging immediately and go do a mung bean approved Zen like activity such as meditation or something, although that might send me to bloody sleep and I don't have time yet until the lads are in bed at their VERY STRICT BEDTIME!  Sob!


I digress in my sleep deprived snitchiness and bitchiness yet I wondered why my stray bloke found some misery filled company if THIS is what I was like without sleep for sooooooo freaking long?  Duh!  Things are back on track now....  Or at least we are very much trying to get "there" wherever "there" is in this crazy little thing called love (and sleep).  The writing was on the wall a loooong time ago that things were headed for a catastrophe to eventually clean up if I'm to be honest though.  Whilst being devastated is totally understandable, I shouldn't have been too surprised if we go back a little way and read about the tenuous state things were in to get where they got last year).  


So anyhoo, today as I sit here very very weary and just a tad grumpy (can you tell?) I can see how much sleep means.


I will never take it for granted again that my boys are (at least for now) very regulated in their sleep patterns. I am so (insert strong expletive here) grateful for usually good sleep patterns. You've NO (insert strong expletive here) IDEA!

I am yawning constantly, full of bitchy sledges, nodding off whilst trying to feign any kind of interest in kids cartoons to nurture the sick small and snapping at EVERYONE today but I'm grateful DAMN IT!  OK?!?!

Zzzzzzzzzzzzzzzzzzzz.

This picture was chosen especially for my dear friend....  "Betty"

I've started a Facebook Page for The Blog... Eeek!

Well....  The blog was in danger of being shut down.  Not THIS blog.  The other one I used to write that was attached to my previous business.  I love writing though so I started this blog instead to keep up my writing and to continue telling stories of fun, love and hope in ASD land.  I had massive writers block for a while.  I had loads of things go very very wrong there for a while.....  Maybe read THIS if you need more info on THAT.

Anyhoo...  I think I still might tentatively want to say out loud that one of these days I'll write a book.  The blog posts may or may not be a part of that but I think they probably will be at least "inspiration" for what will hopefully become a real life, proper book type thing one day.

In the meantime, I guess I should try and build some demand.  You know, an audience who might beg me or even just ask me occasionally to write more so my easily shattered writing confidence is propped up, nurtured and encouraged.

Social Media is apparently the key in all of this.  Now I know I'm a total Facebook junkie.  I'm a slave to the bloody thing.  My fb family is like an extension of my actual family so it makes sense to shamelessly self promote my possible, upcoming at some stage in the future......  Book thingo that started with a blog.

The fb page can be found here!  

Do feel free to stroke my delicate ego and "like" me.  I love being "liked."

C.xo

Autism Gratitude Project Day 10

Autism Gratitude Project  Day 10 - I am grateful for the sense of humour I already had that has only increased over the last 4ish years.... I've really really needed it to see the funny side of things.

Right now, my lovely big boy J has a new special interest.  His special interest is in Jesus.  I am an agnostic and even lean towards being a fully fledged Atheist some days.  Last time I walked into a church, the roof started to collapse.  Serious.  It's a true story.  I walked in and parts of the roof fell down and I was only there for a weight watchers meeting!

Every single person I've told about J's new interest has laughed out loud for real.  Some have even snorted and I'm sure I saw snot fly out of one of my friend's noses during my tale of pinning up religious posters in the house to keep the holier than thou  lad happy (I'm more a shirtless Jon Bon Jovi poster kind of girl really).

Then there is the story of my son praying for me because I exclaimed in a very supportive manner that I thought his drawing of Jesus on the cross (pictured above) was "lovely" and he misunderstood to think I meant it was lovely poor Jesus was up there to begin with (I really don't think THAT'S lovely, I simply appreciate my son's artistic talent at the ripe old age of 6).

J has been especially "good" of late and behaviour is nothing short of Angelic for the most part.  I asked him why he was being such an especially good boy and his very studious answer was that he went to church at school and Jesus now helps him be good all of the time.

I definitely recall writing his religion as "NONE" on our school application to Aspect yet we find ourselves in the hearts and hands of the lovely folks in the Catholic Education Office as J's satellite Aspect class is in a host Catholic school (so the Easter week lead up was pretty full on for my Jesus loving lad).

As my son explained his thoughts to me about Jesus dying on the cross (which the bad guys bought from Bunnings apparently as they also did the nails that put him up there) and as I tried valiantly to answer with any form of authority, his questions about the crooks next to Jesus on their crosses perhaps being crooks from Lego City (I do think my answer of no, they were not the same crooks as the ones in Lego city was correct even with my limited Bible knowledge), I thought to myself.....  "This is some funny shit."  No really it is. 

Whether it is Karma, God getting me back for being so wicked in my early 20's (ok....  pretty much all my life) or whether it's just hilarious freaking irony that the staunch Atheist......  Ummmm yeah, I sugar coated it above...  It's not just some days I lean toward Atheism, I really am an Atheist. There, I said it.  I have immense respect for all religions I simply choose to subscribe to none.....  Don't judge me, I don't dig judgement at all.  I dig free choice and making informed or passionate decisions right for each individual including my son who seems to be making a different one to me and that folks, is HIS choice if I practice what I preach.  

So anyway, it is ironically funny that the Atheist has a very Holy child to answer to now in addition to several Christian friends, all praying for my conversion and a Catholic Mum (well at least Catholic at Christmas and definitely when she dies, as I've been instructed to get her a priest when that eventually happens) who laments where she went wrong with my religious instruction at least weekly.

Even I can see the funny side of this special interest and I'm grateful I am laughing because the thought of tackling the "big religious belief system" thing with a 6 year old Autie with VERY different ideas to his mother kind of makes me anxious between the giggles.

I'll be taking him to the library during the school holidays to borrow books about several different religions (Islam, Hindu, Aboriginal Dreamtime, Wican, Jehovah's Witness, Bon Jovi...  Oh shit, sorry, that's just mine)  so he does get a broader perspective on what's available to choose from but whatever he decides in the long run is HIS choice and I reserve the right to giggle ignorantly, foolishly or nervously and hang onto my wicked sense of humour through it all.

For free choice and a sense of humour to keep me laughing....  I'm grateful.  Peace be with YOU.

Autism Gratitude Project 2012 Day 9

Autism Gratitude Project 2012 Day 9 - I am grateful for "brotherly love." The lads often squabble like street fighters, wrestle as though they are in the pro league and compete in sibling rivalry over literally EVERYTHING. However they also share their toys with each other less than consistently but more than rarely and the brother who rises first ALWAYS springs out of bed to immediately rouse the still sleeping brother with an enthusiastic "good morning" everyday as their first order of business. 


They argue in the car, wind each other up, poke, pinch and make faces at each other when I'm not looking, dob incessantly and usually think the OTHER brother is getting a better deal in all areas of life all of the time causing boggin loads of mother guilt for me..... BUT they miss each other all day whilst J is at school, sneak a hug and kiss in when they think nobody is watching and look out for each other wherever we are whatever we do. They love one another and have the special bond of brothers forever.


I am grateful they will always have each other.

Autism Gratitude Project 2012 Day 8 (Parts 1 & 2)

Autism Gratitude Project 2012 Day 8 (Part 1) - I am grateful for finding HECIS (Hawkesbury Early Childhood Intervention Service) 4 years ago when I had just an inkling something was "up" with my boy. They started me on a journey of terrifying but liberating discovery and HELP! I've never looked back as I worked out early on hiding Jackson's reality and diagnosis doesn't help him. Embracing it means embracing HIM and then later Hunter too as his reality emerged around a year or so later.

So no secrecy, denial or pretending from us. Our family lives with Autism and we are proud of both boys in all their quirky spectrum glory. Accepting it is what it is so early opened our family up to receive amazing help from services. HECIS was first and I know how to write a social story for any occasion thanks to them, The Sensory Gym was next and I know how to keep my children's nervous systems as regulated as possible which reduces anxiety and risk of sensory overload in any situation. Then came speech therapy, Lifestart, Relationship Development Intervention and a life changing course by Sensory Tools to further help regulation and communication. Along came ABI (Autism Behaviour Intervention) once my boys and I had a firm understanding of their sensory issues.

Once regulated in themselves we used the ABI behaviour philosophy to implement positive behaviour techniques. Understanding how to combine all I've learned along the way was the key. This all brought confidence that allows us participate in nearly any situation sort of "normally." Yep.. I'm grateful I didn't hide away, deny or dwell on autism being a "label." Embracing ASD opened up opportunities to HELP my children and look at how far they have come! I am grateful to every therapist and service who has had a positive impact on our lives. Thanks to YOU we do the "impossible" everyday.

We are off to tackle the Easter Show with our social story, sensory integration strategies and positive behaviour techniques. Go us! xoxo

  

Autism Gratitude Project 2012 day 8 (Part 2) - On the way out of The Royal Easter Show (Sydney) that our family attempted today armed with an autism arsenal of tricks and strategies, I asked, "Did you have a wonderful day boys?"

J full of bouncing exuberance:  "I HAD AN AMAZINGLY AWESOME DAY MUMMY!"

H in usual understated fashion: "It was vewy vewy cool Marm. But what was YOUR sort of day dat you had at the show Marm and Daddy?"

I answered, "I had a happy happy day with you boys."

Andrew answered, "I had a FANTASTIC day."

H:  "See. Vewy vewy cool. It was dist vewy vewy cool."

Couldn't agree more. Not one meltdown. Not one tear. Just well behaved and grateful boys who loved it all ending in carrying an exhausted but happy H out nearly asleep (and who is very very heavy these days)!

There was a time last year when I thought family outings were not to be in our future.  I am grateful that our family cheats the odds continually (and always will no matter what) and I never get tired of catching myself in a moment where I realise....  I'm a part of the exact family I dreamed of.   

I'm grateful in absolute abundance today.

AWESOME

 

Autism Gratitude Project 2012 Day 7

Autism Gratitude Project 2012 Day 7 - I am grateful for tomorrow. On a bad day it's always there and provides hope when I am otherwise feeling a little hopeless.

Autism Gratitude Project 2012 Day 6

Autism Gratitude Project 2012 Day 6  


I am grateful for the sadness of diagnosis. Strange yes? Well...... It made my heart "bigger." I remember being devastated when son number 1 was diagnosed. Panic stricken, bereft and lost. From there, the only way was up, even when son number 2 also received a diagnosis. EVERY milestone has a little more joy attached to it than it would have before, EVERY hug has a little more love to it than anyone could ever dream possible, EVERY word has a little more meaning behind it..... EVERYTHING has just a bit more to it when once you were faced (however ignorantly at the time) with the prospect of nothing but heartache. 


If not for that incredible low, I would not be living with such utterly description defying joy in EVERY moment of the "little" things. I experience EVERYTHING a little "bigger" now thanks to my bigger heart..... Granted, some of the sad things are a little bigger too but the pay off is that the happy things found in other folks "boring" and routine are nothing short of AWESOME in my house. Watching J sing and dance with pure joy and total abandon completely oblivious that he's "different" with friends at a school assembly last week = AWESOME (and a few big tears from me). Seeing H wear a pair of bunny ears, hold hands with a friend and walk a path for the Easter hat parade at preschool like all the other kids = AWESOME (and a few big tears from me again).


I am grateful I learned the lesson in heartache. It makes happy so much bigger. :-)

Autism Gratitude Project 2012 Day 5

Autism Gratitude Project 2012 Day 5 - I am grateful for my sister, who loves my boys like her own and has never put pressure on me to ring her more, spend more time with her or do anything more than I've been capable of doing during the storm of autism for the last 4ish years. She's been there without judgement or expectations and has never ever asked more of what I can give emotionally or in any other kind of capacity which has been pretty much zero in honesty. She's stood by me during difficult times and has been supportive, understanding and patient when those difficult times have resulted in my own meltdowns and caused tension throughout our family. She babysits when she can which provides respite and sanity saving time for me. I also must include my brother in law, in this declaration of gratitude. I rarely actually describe him as my brother in law but more often than not, my brother. Recently, I hit rock bottom with life "events" and although I didn't call on my sister and brother (in law) all that much, I knew they were there and always will be. They let me know I could call on them and that was enough. To have the security of knowing there are people on my side who don't push, don't judge, don't NEED anything from me is very comforting to a person who is often called upon by others who NEED me in some capacity. 


Jenny and Paul know I am fresh out of anything much to give right now and they don't care. They love me regardless and let me know through their support that it's ok I can't give anything right now (or for a while longer). They know I am not too capable of "helping" others right now and that the desire to do so has been knocked out of me. They also know I'm not doing to well with the loss of my "help gene" and they make me feel ok about it whilst all I do is help myself and my boys for a while longer. We haven't had lengthy discussions or deep and meaningfuls about any of this but the point is, I just know. No matter what happens, no matter how low I could ever get, no matter what, Jenny and Paul will be my quietly supportive "go to" guys regardless of whatever storm is happening in their own lives.

That's pretty special and I'm so very very grateful.

PS: The boys LOVE Aunty Jenny and Uncle Pauly to the moon, the stars and back too.

Autism Gratitude Project 2012 Day 4

Autism Gratitude Project 2012 Day 4  

I am grateful that my perspective has been altered by autism. Material possessions are nothing to me anymore. Whilst financial security would be lovely I'm sure, it pales in comparison to emotional security. Our savings are gone, our possessions are few and our life is stripped back bare. Underneath all of that I found purpose, perspective and most of all love. My boys do not understand nor do they care that the roof under which they live is rented. Most important to them is that it's our home and in that home is me. I was here for every word, every step, every difficult moment of frustration, every night terror, every developmental assessment, every meltdown, every therapy, every milestone, every success whether big or small, everything. My choices may not be for everyone but they were definitely the best ones for me. I am grateful I made THOSE choices early on to forget the "stuff" and focus on the future as the future is very bright for my boys with me on their side!

Autism Gratitude Project Day 3

Originally posted on my previous blog: http://myspecialstorybooks.blogspot.com/ 3 April 2012

Autism Gratitude Project 2012 Day 3

I am grateful that autism has redefined my preconceived notions of what strength means. I once believed I had to do everything on my own and asking for help was a sign of my weakness or failure. Although I have broad shoulders (metaphorically at least), I reached a point recently where the weight of life events (autism contributed indirectly) was just far too much to bear. I sought help from family/friends/trusted members of my autism support group (in other words my whole "autism family") and in addition to that help I sought counseling from the Salvation Army Counseling Service. I would NEVER have freely or publicly admitted that in the past and it was to my own detriment. Needing help is no longer a source of shame or what I previously would have considered a chink in my armor. It's the complete opposite. Putting my hand up tentatively for help prevented me from sure drowning and STRENGTHENS my armor every day. Although there is pretty much always a battle somewhere in my life, I know I have that strong armor, the "weapon" of a voice not only willing to speak out in advocacy but now speak up in need too and an army of support surrounding me. If not for autism, entering my life and the events following it's rambunctious entrance, over the last however many years, I'm not sure I would have ever realised whispering, asking or shouting for help sometimes is not only what makes us human, but sometimes takes superhuman STRENGTH. For the ability to ask for help and the realisation it's available to me in abundance, I am grateful.

HAPPY WORLD AUTISM AWARENESS DAY!

Originally posted on my previous blog: http://myspecialstorybooks.blogspot.com/ 2 April 2012

Autism Gratitude Project 2012 Day 2 - HAPPY WORLD AUTISM AWARENESS DAY! 

I am grateful for my beautiful boys, J and H. Today on this special day which celebrates them in all of their wonderful quirkiness and delightful difference AND also on every other day of their lives, I am beyond grateful for them. My dream was to have children. To become a Mum. My dream came true twice. Simple. I am fulfilled, proud, amazed, joyful, overwhelmed, awe struck, drunk with love, fiercely protective, unafraid to FIGHT, unapologetic in my drive to beat a path of AWESOME for their lives and ALL LIT UP BLUE inside and out in gratitude for J and H. They complete me and make me better than I could have ever dreamed of being. In short. I love them to the moon and back, past the stars, through the whole universe and over the great blue yonder beyond any limits. My love is limitless and so are their lives now and forever. SO VERY VERY GRATEFUL. xoxoxoxoxo

♥ Chantelle

The Autism Gratitude Project 2012

Originally posted on my previous blog: http://myspecialstorybooks.blogspot.com/ 1 April 2012

For the last two years I've joined a lovely facebook in friend doing an Autism Gratitude Project during April to mark Autism Awareness Month....  I have had one HELLUVA year since last year's gratitude project and after the near demise of my marriage AND near demise of me (see this post for further info on THAT), in large part due to the stress of autism, it would be easy to focus on all the negative things that autism has brought into my life.

I am going to do The Autism Gratitude Project again this year though as it just might be what I need to remind me of all the wonderful things are in my life also in large part due to autism and to maybe even see that the near demise is indeed something to be grateful for one day as it's my hope that the events that damn near broke me will eventually be the step in my journey that strengthened my stride into unbreakable.

So on the day before Autism Awareness Month officially started I marked my gratitude by acknowledging that I'm grateful the above statement reads, NEAR demise on both counts and not ACTUAL demise..... Small but significant steps are being made to move further away from any kind of demise every day. 

Here we go though, it is now April 1st and that means Autism Awareness Month is officially underway.

Happy Autism Awareness Month and please join us on facebook or post below in my comments section if you prefer or maybe just write a journal for yourself but why not join those of us who choose to see the gifts of autism by stating one thing you are grateful or each day during April because autism entered your world.  It can be a positive thought, a happy/flappy story, anything.  I'll start......

Autism Gratitude Project 2012 - Day 1: I am absolutely filled with gratitude to be surrounded by the love and support of some truly remarkable people I've met through autism. The real everyday heroes who literally change the world through their tenacious courage to advocate and constantly fight for their children but who's cup is never running so empty that they can't offer a drink of love and support to their friends fighting beside them. Bravo to my amazingly brave, brilliant, talented and exhausted friends who give a new definition to the word strength. I am grateful for each and every one of you who I would never have met if not for entering this different world of autism/additional needs. You know who you are and each and every one of you raise me up.

Much love to all of those in my world who inspire each other and me.

Baby Steps and Speaking Out

Originally posted on my previous blog: http://myspecialstorybooks.blogspot.com/   23 March 2012


So to follow on from my last post I tentatively stepped back into the public speaking arena today on behalf of one of my very favourite organisations, Carers Australia, who are the recipients of the Pollie Pedal fundraising event.  Carers Australia and Carers NSW invited me to tell my story at the launch of Pollie Pedal which took place at major sponsor, AMGEN's premises with special guests, Ara Creswell - Carers Australia CEO, Elena Katrakis - Carers NSW CEO and John Alexander MP.

I was speaking about caring and the impact on one's life becoming a full time carer has.  I'm sure AMGEN and Carers Australia won't mind that I've shared my debut speaking gig post life overhaul malaise here with YOU.

Read on and enjoy:

Good afternoon everyone, my name is Chantelle and thank you to AMGEN for having me and asking me to tell my story today.

I will just start by saying that I’m not a professional or particularly talented public speaker.  I’m just a mum who happens to be walking a different path than many of my peers as when I became a mum I also became what we now know is termed “a carer” as well….   And like many mums with small children I get pretty excited when an opportunity presents itself to mix with real life adults.  Also just like other mums I don’t get a lot of sleep…..

Soooooo that combination CAN be a little dangerous out in public. 

I’ve been up since about 4 am so if I don’t nod off mid-sentence then we’ll deem this a success ok?  Deal?

So to tell you my “warts and all” carer story in 5-7 minutes I really need to leave out quite a lot of the ALL and several WARTS too.  If you have any specific questions about anything I mention, please don’t hesitate to ask me later.  I LOVE TO CHAT.  So…….

Most people have significant events or dates in their life that changed it.  The day you graduated university perhaps, the day you got married for instance or the day you gave birth to your first child.

I can relate to the day I got married and the birthdates of both of my beautiful bouncing baby boys (who could forget birthing all 10 pound 4 and 10 pound 9 of them…. really)?  Yes you heard right.  10 pound 4 and 10 pound 9.  Oh and my second child, without pain relief and in the record time of 55 minutes.  You may give me a round of applause for that if NOTHING else today if you wish but I digress as that doesn’t really make me a better carer it just makes me AWESOME.

Ok Ice firmly broken……  Let’s get on with it.

Another date I’ll never forget and when my life changed forever is the 8^th of the 8^th 08 (080808) when my gloriously handsome clever and quirky firstborn baby, Jackson, at 2 years and 10 months old was diagnosed with Autism.  We’d known things were not quite the same as the other kids in Mums group for a while and my inkling that Jackson was developing differently turned out to be spot on when after a very harrowing and complicated diagnostic process Autism was confirmed. 

My second son Hunter was only 20 weeks old when Jackson’s diagnosis came through so a new baby, a toddler with Autism and a landlord announcing we had to move in unrelated but badly timed circumstances was a pretty chaotic and confusing time. 

Did I mention that during all of this my husband was struck down with Viral Meningitis from which he still suffers memory issues among other side effects?  Well yes…  Add in THAT and you’ll see that caring landed in my life with all the subtlety of a sledgehammer.  Not one to do things by halves around a year later give or take a few months (dates had become a little blurry by then) my second delightful, gorgeous and amazingly fabulous son was also diagnosed with an autism spectrum disorder. 

It was quickly evident that my previous life plans of returning to work at some stage for financial security were now very much secondary to a life of early intervention, never ending appointments, advocating for my children’s basic rights and sometimes working with but most times fighting with “systems” doctors, therapists, schools, policies and much more and this new life was now my “normal.” 

Dreams of a nice house and a picket fence were replaced by dreams of my children having not special opportunities but at least equal ones to other children without a disability.

It was like a bomb or several consecutive bombs had exploded in the middle of my life and I became a lone (and very lonely) soldier fighting a war I never asked to be in.

That’s the thing about caring though.  Nobody asks to become a carer.  Caring does not discriminate. 

People discriminate but caring does not.  You can become a carer anywhere at any time and chances are you will not be prepared.  Few are.

I can only speak for myself but I’m pretty sure not many of us meticulously and responsibly plan for the event that our children are either born with or acquire through accident or injury, a disability of any kind. 

I’m not sure I gave it much thought as after all this is the lucky country and like most couples planning a baby we thought we are young and free just like the song goes.  She’ll be right mate?  Well maybe not that cavalier BUT disability definitely didn’t factor into our plans for a family and the financial and emotional strain on a marriage that caring brings is nothing short of EPIC.  Trust me.

Few of us would be planning babies and say, “hang on a minute babe, are you sure we’ve set enough money and emotional fortitude aside for predominantly unfunded lifelong therapies for the child we are planning in the case of them having autism?”

Any caring situation can happen at any time as I said.  Mental  illness, disability through injury, chronic illness and any other circumstance where you are required to become a loved one’s full time and unpaid carer can come out of the blue when you least expect it.  Although I would ask you all to consider that most of us have parents.  So whilst caring seems to be an issue that OTHERS deal with at some stage caring is VERY likely to touch your life via caring or at least making plans for elderly parents as they age.  Caring is in fact NOT something that just happens to others.  It is an issue for us all when you consider this.

If or when “caring” happens it’s overwhelming, confusing and above all EXHAUSTING.  Where do I go for help, what funding if any can I access, what is this elusive thing called respite other carers speak of?  Who do I talk to when I’m having a day where winning just the battle at hand seems impossible let alone the war at large?  How do I find support and some guidance?

Enter Carers Australia.  Finding a first port of call in a sea of complete and utter confusion and sudden isolation can be the difference between sinking or swimming for carers.

Carers need a glimpse of land when on stormy seas, including information, opportunities to connect and practical help.  A reference point to turn to and help direct us to appropriate services and support in this new world and most of all we need a voice on the days when our own is just too defeated and too tired to shout.

So thank you AMGEN and Pollie Pedal for supporting Carers Australia as YOUR support helps them care for those of us caring for the one or ones we love.

Although being the mother and carer of two children with autism is without question the most difficult challenge I’ve ever faced it is also the most rewarding experience I’ve had too.  Even on the bad days I wouldn’t change my children BUT as hokey as it sounds I’d like to change the world they are growing up in and YOU are helping me do that.  By caring for me, the carer, you are helping me care for my boys and they are the loves of my life.

THANK YOU.

**Cue applause and lunch with the lovely people of AMGEN and Bennelong Member of Parliament (and tennis legend) John Alexander MP, Ara Creswell, and Elena Kratakis.

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.