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.