Sooooo much to explain but in the meantime... Happy birthday to me....

37 Reasons to be happy about turning 37 (I know I have heaps to explain about why this blog is soooo neglected and poorly followed up but I'll plead pnuemonia, severe sickness and hospital and yes that is true I promise.....  I'll explain soon and get back to the original stories but in the meantime it's my birhtday so I am being self indulgent until tomroow...)...  Hope you are all well.....


It’s my birthday today and on first glance after waking up as a 37 year old I was not too jazzed about the whole closer to 40 thing so in an effort to settle into being another year older and embrace being me at any age like all those gals on the Oil of Olay or Dove or Cover Girl or whatever beauty product advertisement it is where they bang on about being beautiful at any age (I don’t buy beauty products and zone out when the ads come on so forgive me for not paying attention to the marketing ploys of whichever company it is actually showing a woman above 19 in their ads).

Anyhoo, here is my attempt to embrace being 37 with open arms by listing 37 reasons to be happy to be turning 37 today (they are listed in no particular order of importance BTW):

1. At 37 my reading glasses make me look intelligent instead of nerdy.

2. In keeping with the above point, at 37 being intelligent is sexy NOT intimidating for the poor men folk who can’t keep up a conversation with a 20 year old with superior intelligence AND perky boobs.

3. At 37 I have the two most beautiful, quirky, wonderful, remarkable and magnificent children ever birthed who call me Mummy, tell me they love me and give me HUGE squishy cuddles every day.

4. At 37 I have the life experience, emotional maturity and intestinal fortitude to deal with my children’s issues (of which there are many because of Autism) and if I’m allowed to indulge myself further and put a part (b) in this point (which I am going to do as it’s my list and I’ll indulge if I want to) that at 37, with the afore mentioned emotional maturity I can appreciate the gifts of my children (and the gifts of Autism) and celebrate those too amidst dealing with the issues (this is possible at any age as mother I’m sure but I wanted to mention how grand my kids have made my life even with some bumps in the road).

5. At 37 I have a wonderful, caring husband who helped me make the remarkable children mentioned above (and he’s pretty hot too which is nice).

6. At 37 I can finally say I don’t care what other people think of me and REALLY mean it (that one was hard to achieve and even as recently as at age 36, I was still worrying about that crap but no longer care to waste time on negative rubbish).

7. At 37 people in their 20’s come to me for advice as apparently I’m very wise (really, it’s honestly true that people in their 20’s have asked my advice..... although I make no promises that my advice is ever worth listening to).

8. At 37 I can heartily and credibly sing along to the Lyric in Sinatra’s My Way and really mean it: “Regrets, I’ve had a few... but then again, too few to mention...” Actually, I reckon I could credibly sing along to most of the lyrics throughout the whole song except the final curtain bit as I sincerely hope I’m not quite old enough to be facing THAT!!!! (lyrics here: http://www.lyricsfreak.com/f/frank+sinatra/my+way_20056378.html)

9. At 37 I can confirm that it is true that women do indeed hit their sexual peak around the mid 30’s and will leave that one there as perhaps this is too much information for family, some friends and maybe the people in their 20’s who have come to me for advice about other things and who would be shocked at a wise old lady saying such things......... (Don’t worry, by number 30 or so you’ll forget I snuck that one into the list way back at number 9).

10. At 37 I have lived an interesting enough life to have had 3 weddings & 2 husbands (long story) and looked FABULOUS at all of them.

11. At 37 I am quite capable of going to the ladies toilet in any bar, restaurant or public place on my own and do not require the company of a friend.

12. At 37 my curves are because of my enormous children and not because of my enormous appetite (both boys well over 10 pounds, delivered naturally and one of them without pain relief..... and yes I will continue to tell people this as damn it.... THAT is a mighty achievement).

13. At 37 I can mock Generation Y. (Yes... I know there are wonderful Gen Y’s before I get caned by my Gen Y friends but seriously, it’s just your right to mock the generation after you...).

14. At 37 I am old enough to be mature but young enough to try new things if I want to.

15. At 37 I am still learning something new every single day and hope to do so forever.

16. At 37 I can tell people to “phark off” if I want to and not yet look like a muttering and crazy old woman but rather a woman who does not tolerate ignorant tools, idiots and small minded people in her life.

17. At 37 I can choose my friends according to who I like rather than who is cool or who belongs to the in crowd.

18. At 37 I can have a glass of wine to wind down after a long day or whilst I settle into a quiet evening in my slippers instead of having a glass gearing up for a long night of bar hopping and uncomfortable high heels.

19. At 37 the only discoing I do is in my lounge room (in aforementioned slippers) and I am totally happy with that as I can choose my own bad 80’s & 90’s music to disco around badly to.

20. At 37 I can eat an entree, main AND dessert if I choose to without feeling guilt (but perhaps indeed feeling the strain of my tummy sucker inner steel enforced, iron undies unless I nick off to the loo and slip them off to accommodate the meal which I have been known to do on the occasional girls night as laughing and eating really doesn’t make a comfortable evening in those stupid bloody iron undies anyway).

21. At 37 I can admit to being out to dinner as mentioned above and slipping off ridiculously uncomfortable steel enforced, iron under pants invented for women in their post child bearing years who have not yet lost the baby weight (this can be up to the age of 90 of course as it takes more than 5 minutes to work off that damned baby weight contrary to society’s false belief thanks to pharkin Angelina Jolie and her 3 seconds after birthing twins, flat tummy)...... I digress...

22. At 37 I can digress and curse out pharkin Angelina Jolie and all her pharkin perfection.

23. At 37 I have never ever been ten pin bowling nor do I ever really want to. C’mon!!! Those borrowed shoes!!! They have seen many many many feet and therefore MUST breed many many many feet diseases..... No thanks. At 37 I choose to pick a different type of family outing or date night thanks anyway.

24. At 37 I don’t have to show my ID to get into R rated movies or nightclubs (mind you I rarely go to either but it’s nice to stroll on in should I choose to go without emptying a ridiculously impractical handbag trying to find my licence and accidentally flinging several receipts, a lipstick and a couple of tampons out in the process.

25. At 37 my period might be a couple of days late and I’m not automatically panicking about unplanned pregnancy... It COULD be early menopause! (Hey, having options and alternatives to anything is always good)!

26. At 37 I can look back at my all night, podium dancing filled, scantily clad, Oxford St night clubbing days with fondness and be glad I had them but also glad they are OVER!

27. At 37 I can say my first job at The Sheraton on The Park in “the banquet beat” when I was just a young girl who was very sheltered at the time from “Baulko” allowed me to meet not only famous people such as The President of The United States, Janet Jackson, Robbie Williams (all of Take That actually), The Pope and many others of notable note worthiness but more importantly allowed me to meet the most eclectic and bloody fantastic bunch of friends (many of whom I’m still in contact with) I could have ever wished for to teach me about the real world outside of “Baulko.”

28. At 37 I can say my move to Adelaide in my early 20’s was a colossal mistake but that if I didn’t do it, learn from it and move back to NSW I would not have my husband and family so it wasn’t really a mistake at all then was it? (Another long story)....

29. At 37 I can look back at my days of high school at good old Crestwood and realise that a spiral perm and a teased fringe, hoop earrings down to my shoulders, various Bon Jovi t-shirts (one for each day of the week) with an incredibly short school skirt might have yielded me the hottest guy at school to claim as my boyfriend but also wonder really........ What were we any of us thinking? Yeah well, like I said, I was the girlfriend of the most popular guy at school. Woot woot! Popularity at high school was nice at the time and a luxury many don’t ever have so at 37 I am grateful I didn’t live through the hell some others do/did (and that if I admit it keeps me awake at night when I think about my kids potentially facing bullying at school).

30. At 37 I can raise awareness for Autism. At 37 I am proud that I try to do this and I am also proud to stand alongside all of the other wonderful souls who help me do so (another one that can be done at any age and stage but again, I just wanted to mention the great friends and comrades I’ve found along the way who share my passion for helping raise awareness).

31. At 37 I can log onto facebook, connect with people in the same boat and have a conversation with someone overseas or just around the corner within the space of 2 minutes and know I’m not alone on a lonely day.

32. At 37 I understand the difference between facebook acquaintances on my friends list and a real friend. (Although I have met some wonderful friends via FB who have become real friends.... I’ve also met some that make me grateful for the hide, block and delete buttons).

33. At 37 I can demand a chocolate mud cake on my birthday and know I’ll actually be the one making it in a house full of boys but also be ok with that.

34. At 37 I can look at my life and be grateful for every single thing in it, every single experience I’ve ever had and everything still to come my way.

35. At 37 I still LOVE Bon Jovi and can go to their concert (or 6 as the case may be) when they tour later this year and NOT have to ask anyone’s permission to do so or even care how immature the whole thing is...... At 37 I can do whatever the hell I want and I want to go to 6 Bon Jovi concerts so I am!

36. At 37 I can write the above point on the list about Bon Jovi and laugh at how ludicrous it is that I am still justifying my love of them at age 37, know I’ll always love them and also laugh that at age 2 and 4 my kids danced to good old Bon Jovi with me in the lounge room yesterday (in our slippers of course) and even though it’s ludicrous it’s also the stuff my past and future memories are made of whilst being right here in the present too.

37. At 37 I can NOT sing, will never be able to sing and although I know I’m terrible, will sing anyway at the top of my lungs if the mood strikes because at 37 I am me and I’m fairly happy with who that is. 

A tale of two brothers, oh and two mothers.....

So I was supposed to tell you all about the story of Brody and his Mum, Vicki who is my beautiful friend....  (previous blog) I was on the countdown until Brody's bone marrow transplant which is tomorrow.  I have to be honest.  I've found it really hard to write about what Vicki might be feeling.  I've avoided the blog as I've not had the right words.  Yes, it's true, I've been short on words.  Not often that happens but when dealng with matters as serious as Brody's situation, trust, me.  Words are hard to find.

What I can report is that along with a bit of writers bock I've also had dramas in my world.  J had a wonderful game of shared attention, reciprocal play and imagination with a friend from preschool yesterday.  Oh how wonderful indeed!  Until he wound up in the emergency room!  Yes, a game of chasey wet pear shaped and J ht a pole at full pelt leaving him with a head injury worthy of 5 hours in the local hospital emergency room under observation.

I watched my beautiful boy in awe as he took his hospital visit in his stride and in absolute and complete honesty he could not be picked out as any different to any other kid waiting his turn (albeit impatiently, as they all were).

My J, so hungry but not allowed to eat until he had been examined by a doctor, desperate for chips from the chip machine "stalking" the patrons who placed their $2 in the machine and chose their chips...  "What do you like in there?" he asked everyone.  "Oh look, here come your chips!" He exclaimed as they made the journey through the machine to the hungry customer's hand and J looking on in envy but no meltdown in sight to the surprise and complete delight to me who sat silently watching with no need to step in and "save" him or "explain" him.  Oh sure, he was a bit too close to people and talked a bit too much and a bit too loud but he waited.  He waited for FIVE hours and he followed instruction and he didn't meltdown.  Not once.  So proud I was of my baby who's come such a long way.

The doctor saw him eventually and agreed he had a BAD bump on his head and needed to be watched for signs of concussion but we could watch him at home.  (He's fine now).  So we were allowed to go and our scare for J's health and wellbeing was over for now.

We are so lucky and we know it.

So to go back to my friend's Vicki, Brody and Luke.  They are not so lucky.  They are not sitting in an emergency room but they are, indeed sitting in a hospital.  In isolation.  Tomorrow Luke is donating his bone marrow to Brody.

My son gets to play in the yard with sticks, cars and jump on the trampolene and Brody will be receiving bone marrow into his little body.  Brody who is autistic and tricky and has trouble understanding what on earth is going on around him, just like my boys do is receiving his brother's life saving gift.

I watch on in joy as my two boys share their toys with the structured help of therapists and early intervention and Vicki watches on as HER boys share life.  At least we all hope it's life.

Brody has always been life personified when I've seen him.  He is a happy, energetic and light filled little soul who, just like his mum, makes you want to hug him within moments of meeting him.  Brody has a room filling smile and an infectious laugh and he demands, "Pizza on Tuesdays" whenever you see him.  Brody is brave.

My hospital experience with my boy was scary and unpleasant but my hospital experience was what every parent wishes for in the long run....... I got to take my healthy boy home.

Will Vicki afford the same luxury?

YES!  Lift her up, think of her and get this boy over the line.

I have no say in the outcome.  None of us do.  But lets all hope and join together for Vicki and her boys.

Tomorrow I'll give you an update and I might tell you some of those stories I promised in the previous blog.  I have a feeling my wirters block will be lifted when tomorrow is all said and done.

Here's their links if you want to learn more: Brody's blog, Brody's facebook page


****Post Post note......  FANTASTIC NEWS!  Brody is in remission.  Vicki received the best Christmas present in the world with that news.  Oh and the playdate we dreamed of and the afternoon BBQ with us mums enjoying a wine.....  We are doing that VERY soon.  Dreams can come true.

Can YOU Imagine?

It's been a while again.  Life is crazy.  It's life though and how precious is that in itself?  Mine might be crazy but it's full and promising and ALIVE with life itself.  I have the luxury of healthy children (yes they have "issues" because of being on the Autism Spectrum but they are physically fit and they have bright and happy futures if we put in the hard yards now to help them develop).

Can YOU imagine life any other way?  Can YOU imagine your children's lives any other way than with a future.  Not even a bright and happy one but a future guaranteed for now with no threat of anything taking the light out of their souls in the immediate future.  Whilst my kids have a childhood of difficulty in some ways and face being different than others, they have souls lit up with the very essence of what we call life.  They are strapping pictures of health with loud, joyful laughter and games together of sharing and sometimes not so much of the sharing but rather boistrous scuffles and the odd clobber between brothers that is natural, "normal" and part of that thing called life again.

Some days the very nature of their life of light and energy exhausts me and I cannot wait for them to succumb to that heavenly place us parents know as bedtime.  I sigh with relief that I have a break from their bounding natures and over active personalities that are enough to wear anyone out.  Oh for a moment of peace!!

Can YOU imagine life any other way? 

In truth no one actually WANTS to imagine life any other way but I'm going to ask you to on this post.  I'm going to take you there.  Where no one can imagine their life or their children's lives being. 

I'm asking you to go there with me because I CAN imagine all too well what life is like when life is not a given for your child ut a luxury and a maybe.  I don't know it for my own children but I've been watching such a life through a friend.  Not a long time friend, she's a relatively new friend who is NOW a lifelong friend.  My sister of the soul as I call her.  My lonely but smiling, brave friend who loves her boys and is facing the most unimaginable situation that any of us could ever imagine especially because none of us wnat to imagine it.

Through truly awful circumstances I have met an incredible woman called Vicki.  She is one of those people with a shining light of life, an open heart, an even more open smile even in the face of what can only be described as tragedy and a generous warm spirit that is infectious.  Vicki makes you want to be like her.  She is grace personified and kindness wrapped into human form who makes you want to hug her within minutes of meeting her.  She's beautiful in every way and I am simply in awe of this amazing lady who is doing it tough.

Vicki is the mother of two boys.  Here is where I want you to start imagining.....  This is no fairy tale though.  This is my friend's life.....  Are you ready?  Imagine you have a wonderful and healthy teenage son who you love dearly and that you also have a younger son who is nearly 5 years old and in his short life has been diagnosed with Epilepsy, ADHD, Autism and now.....  Leukaemia.  Have you imagined it yet?  Vicki does not imagine it, she lives it EVERY day.  For the last 11 months, Vicki has been at her youngest son's side in a children's hospital helping him endure treatment for an illness that sucks the life out of his tiny little body and confuses a child with limited understanding as it is about why he is being subjected to test after test and procedure after procedure.  Brody needs substantial support for his Autism and his needs are so incredibly complex that he has Cancer experts who do not understand Autism in his life whilst the Autism experts do not understand the Cancer.  Can YOU imagine?

I have been blessed by meeting this mother and son team and I love them deeply.  They are my friends but we don't visit each other at our houses for playdates with the kids or a barbecue and a few drinks EVER.  We cannot.  Brody is in isolation to protect him in the lead up to his bone marrow transplant which is in 6 days time.  Brody's chances are not high.  It's a fact.  Vicki knows his odds and she does what all mothers who have been given this vile, unfair and horrible lot in life would do....   She loves her son.  She lives for him and fights for him.  Vicki advocates for him and comforts him when no one else can.  Most importantly to Brody who has trouble understanding his world, Vicki understands HIM and she helps him make sense of everything.  Did I mention she fights for him?  The strength to stand upright every day after sleeping in a hospital room stretcher bed, beside your child in pain and confusion and put one foot in front of the other is a strength I feel in awe of every moment that I am lucky enough to spend with this little family and in the moments I'm simply thinking about them and those are many many moments. 

I dream of those visits with the kids one day.  I hope we get to raise a glass of wine together and watch our kids play, run about in my backyard and maybe even fight.  I dream of stick "sword" fights and superhero pretend games and billy cart races down our hill whilst we laugh together and yell at the boys to "play nice...."  I dont' care how they play really and neither would Vicki.  I think I speak for both of us that we just want them playing.  Playing and living with their full life ahead of them.

For now though, Brody writes my kids letters from hospital and my kids know Brody through videos and photos I've taken and they all call each other friends even though none of these special boys have actually met in "real" life.

I'm not telling you all the whole story tonight.  I'm just asking you all to imagine for a while.  There's much more to the story than what I've shared so far.  For the next 6 days in the countdown to Brody's hopefully, life saving bone marrow transplant I'll tell you more.  I'll tell you how Vicki and I met.  I'll share why we connected and how I became part of their special lives.  I'll share some of our funny jokes and side splitting moments where we've laughed until we cried and then cried until we've sobbed together.  I'll tell you the moments I've shared with Brody the Brave Boy (Facebook Page) who stole my heart and found a place in it beside my own boys and I'll share pictures of my friends Brody and Vicki to help YOU imagine.

I'll share one more thing for now.....  The healthy teenage son of Vicki's who I mentioned before in passing when "introducing" you to this family?  Well it's that son who is Brody's bone marrow donor.

Vicki is the mother of one boy getting a bone marrow transplant and also the mother of a boy giving the ultimate gift.

Can YOU imagine?

To be continued........

Visit Vicki and Brody here if you really really can't wait for my posts over the next 6 days: Brody's Blog

After..... Sometimes life is simply a carnival!

The Circle Makeover "After" Picture

(See the segment here: The physical after....)

Following on from a previous post Before and After I've provided the link above for those interested in how things turned out on the TV makeover front.  Against the odds, I agreed to don a dress (on national television) for the first time since my wedding day and allowed the make up people to transform me into someone who resembles a person who has given their appearance a second thought in the last few years.

The makeover was fun but in honesty it did not quite provide the liberty from my self doubt that I craved at the time.  The producers of the show billed me as "the Autism Representative of NSW" who was so embarrassed about my appearance that I am terrified to take the stage for my public speaking engagements...  Hmm... Not quite the way it is as I am happy to speak publicly about families living with Autism and woops, I'm not the "Autism Representative of NSW."  No such title exists.  I was appointed a Carers NSW Representative (See here) which is in addition to acting as the vice president of the Autism and Aspergers Support Group Inc.  It is the Autism and Aspergers Support Group Inc (AASG website) that is sponsoring me to speak at The National Summit of Parents Families and Carers in September and it is THAT speaking engagement I was nervous about attending in my usual uniform of jeans, sandals and a basic black top (none of which fit me very well due to weight gain over the last few years).  Anyway, as I said, it was lots of fun to be primped and preened for a day and to receive some fab new clothes! 

Nope... No emancipation from nagging self esteem and doubt from the makeover BUT the little niggles that I was worrying about a couple of posts ago are fading.  I think the experience of writing about my disappointment that we don't all support each other in this world of awareness and advocacy was somehow cathartic (I said advocacy as EVERY parent with a child of difference is an advocate.  Every single one of us who stands up to speak for our kids of any ability or who attempts to raise awareness for their needs is an advocate regardless of what any title means). 

So instead of providing the specific self esteem boosting purpose I thought the makeover would, it provided me with perspective instead.  That's not so bad.  I came home with my fancy new dress to a chorus of excited squeals from my boys who I had been away from for exactly 28 hours and 37 minutes during my TV sojourn.  There was an exclamation in unison of our usual family greeting, "Muuuuuummmmyyy!!!!! I'm so happy to see you, did you have a nice day?"  (Always always always the same greeting except for the insertion of appropriate name to scream in excitement for anyone who walks in our door... eg: "Daaaaadddddyyyy!!!!! I'm so happy to see you, did you have a nice day? or Naaaaannnnnnyyyyy!!!!! I'm so happy to see you, did you have a nice day?" You get the idea, even our greetings are that of the strictly rehearsed routine variety).

So there I was, in my fancy (and super expensive and completely impractical) new glad rags hearing the music to my ears that is the greeting of my incredible boys, "Muuuummmyyy!!!!! I'm so happy to see you, did you have a nice day?"  To which I responded, "I'm so happy to see you too beautiful boys and yes, thank you I did have a nice day today.  I missed you so much!  Did you have a nice day too?"

My boys have super hyper verbal skills which is not terribly common for children with ASD but they do lack the ability of reciprocity in conversations and often answer in a somewhat interesting way that is not necessarily expected and even sometimes does not make sense and that is very common in children with ASD.  This is why every single time a response of completely crystal clear sense making clarity comes from either of them I whoop with joy in my heart.

In response to my greeting, H responded, "U huh. I love you so much Mummy, a cuddle, a cuddle, a cuddle now please. A cuddle, a cuddle, a cuddle NOW please!" (Whilst nodding furiously that yes indeed he had a lovely day even in my absence).

J nodded and exclaimed, "Yes! I had such a nice day at preschool and Vicki helped me do a painting just for you (thanks Vicki, the world's most beautiful teacher's aide who always makes sure J's day includes a reminder of his Mummy)."

Then....  A thoughtful pause from J who watched me scoop my little H bunny up for that achingly perfect repetitively requested cuddle. 

More thoughtful pausing...... An additional comment from my quirky, little guy who sometimes seems to miss the crux of what we are saying to him and marches to the beat of his very own internal drum more often than not..... "Mummy what a beautiful new dress just like at the carnival! It's a so so so so very good and beautiful carnival dress Mummy just like you."

Ahhh. Just like at the carnival?  As I pondered J's assessment of my impractical and expensive dress gifted to me by Channel 10 which I would never ever have splashed out on of my own accord due to constantly worrying that the money I am spending on myself, even for a cup of coffee could be money that would be better put to my boys and their required therapies..........  Well as I pondered his unique view of my carnival dress (sorry Country Road), I realised that he was casting his mind back to our family day out at the local show where there was a Ferris wheel, rides, animals, colour everywhere, clowns and fun.  This day was described by J in the car on the way home as, "a fun very very very good, beautiful carnival."

For J, my pretty new dress of a deep burgundy teamed with a stunning  necklace of crystals, baubles and beads was his version of beautiful just like his day at the "carnival" and just like me apparently.

I think that is possibly the highest compliment I've ever received in my life.  One child desperately reaching for my arms that he'd missed for the entire 28 hours and 37 minutes I'd been away and squeezing me with gusto and a force I did not know a two year old was capable of and the other child likening my made over look to his mind's eye of the most beautiful thing he could think of, his wonderful day at his "carnival."

I smiled through wet eyes and kissed the top of his own beautiful head, still clutching my little H who was NOT letting go of our cuddle anytime soon it seemed.

So no.....  I did not instantly become a picture of bursting confidence inside and out and I did not forget the imperfect world that my children live in or the political and sometimes ugly world of gossip and pettiness that I was so upset over a mere few weeks ago.  I was searching in the wrong place to forget those things and searching for the wrong cure to remedy my battered drive to continue on in attempting to action change in a climate so difficult to stay afloat in with self doubt.

I've always known where to look deep down and I've said it in the past a million times over.  I have no idea why I forgot where the port in any storm is and I have no idea why I allowed those waves of shattered confidence to crash into me over and over again.  The source to heal any hurt or boost any doubts has always been safely locked in my heart.  It's so obvious that I'm tempted to flagellate myself over being so blind temporarily but will not waste anymore time on this as clearly it's time to move past things I cannot change and step back up to the responsibility I have to my boys who need thier Mum to be as proud of herself as she is of them.

The world my children live in is not beautiful to some and on some days it's not beautiful to me as I look at them from my own adoring eyes knowing that what I see is nothing like what the rest of the world will see without guidance and awareness.  Right now though and in the moment I walked through the door after the makeover that was to provide my self esteem the boost of beauty I needed at the time.... Well in that moment the world was beautiful just like the carnival to my boys.  That is the perspective I gained.

What I saw as the little old local show is a beautiful carnival to my boys and what I saw as an overweight, tired and confidence devoid mum is just as beautiful to them as they are to me.

Does anything else really matter?  I'm sure I no longer think so.

You're Fired!

After yesterday's somewhat complicated post with a window into my sometimes fragile psyche I thought I'd wipe the tears away and tell a story today instead....  Today has been a much more positive day and I, for one am ready for a few laughs again.

I mentioned in yesterday's post that I'd been busy putting out fires around here and I hinted at telling of that literal adventure in an upcoming post.  Well today is as good a day as any to fill you in on the fires always 10 seconds away from my turned back in this house of organised chaos.

For those who read along on this blog you already know life in my house is always an adventure with a child on the Autism Spectrum.  I remember a line in that hokey Arnold Schwarzeneger film, Kindergarten Cop that warned the barely believable and terribly acted undercover cop to never every turn his back on his Kindergarten Class because it was like turning your back on the ocean.  The consequences would be BAD!

I recently saw that film again (I'm a bit of a nightowl and quite often as I tap away on various projects, work and bits and pieces, I have the TV on and usually it is simply for white noise and the shows keeping me company are generally quite rubbish).  I watched the scene where poor old Arnie did turn his back on his class and when he returned it was a disaster.

I sat there and laughed along and thought to myself,  "Wow!!!  That class of 30 kids has NOTHING on my two boys!"

Children with ASD sometimes have no sense of danger and most (well at least my two) are extremely impulsive.  This impulsiveness and lack or awareness is related to their lack of executive functioning which is really well explained at a friend of mine's blog, (see here).

We live in a house full of locks, safety gates, barriers, alarms and various other safety measures so our kids can basically get through a day without injury (or worse).  Think about all the things you had as safety measures when your children were little babies and then multiply it by about a thousand and you have an idea of the level of lock and key my house is under at all times.  My kids have managed to work out most of my incredibly complicated security measures and have escaped the house in the past including a very scary incident when my Mum was looking after my oldest son. He managed to get out of the locked back door, over a specially constructed gate on our back balcony, and over our fence (which is chicken wired to avoid having easy climbing access with handy foot holes) leading him straight to a main road upon which buses and trucks power along around the blind spot just adjacent to our driveway. This was exactly where he was headed by the time my mother who has arthritic fingures and a recently replaced artifical hip had managed to unlock all the doors and gates J had somehow magically by passed Houdini style. 

We stepped up the security again after that incident.

So you get the idea that a loo break around these here parts is a dangerous undertaking as you simply never know what will transpire whilst you are relieving yourself....

About a week ago I was doing my usual dinner time routine and had cut way too many peices of bread to make into toast for the boys who always eat toast with every meal as it is their chosen food fad.

The boys appeared to have finished and I left a peice of uncooked bread in the toaster (first mistake) thinking to myself that I would pop it down and cook it if, when I get back the boys want more.  I dashed to the loo and no disasters that I could hear were going on so I thought, "Oh why not run the bath and grab the pyjamas whilst things are quiet?" (Mistake number two).

I think I'd been gone around five minutes when I trotted back down the hall feeling quite chuffed that the house was still intact and the boys had not even had a scuffle in my brief absence. 

Interception..... My four year old hyper verbal and very literal little boy magically appears in my path (after jumping over the safety gate in the kitchen entrance Olympic hurdle style).  "STOP Mummy!!!  The toast is fired, the toast is fired, THE TOAST IS FIRED!!!"

I would love to say I calmly entered the kitchen from whence my paicked child came and quietly assessed the situation but I do believe I may have sworn and then also hurdled the safety gate (why oh why do we bother??  They keep no one out of the places they are not supposed to be and really only slow all of us down over the day). 

The toast was indeed fired.  The whole toaster was actually on fire.  Again, I would like to say I calmly pulled our handy fire extinguisher from an easy to reach place and simply put that fire out but I did not.  I swore some more and contemplated that I do not know the difference between electrical fires, chemical fires or any kind of fire and I had no freaking idea on how to put this baby out and we do not have a fire extinguisher (which in hindsight is totally daft when considering the potential for disaster in this house on a daily basis).  In possibly the most stupid move of my life I ripped the burning electrical appliance from the wall it was plugged into and may have dropped another swear word as I flung it into the sink full of dishwater.

The fire went out and my heartrate returned to semi normal and I think I realised I was in some strange mother trance as I came out of it and heard my J yelling, "I'm so sorry I fired the toast Mummy!  I'm so sorry I fired the toast Mummy" on repeat which went on for a good three minutes and no amount of consoling could stop.  J has popped that piece of toast down whilst I was happily wandering about the house feeling so smug about a disaster free five minutes and he had then become distracted with an episode of Dora on TV.

The boys were reciting the episode verbatim as they do whilst I was in oblivious smugdom, each participating in their designated parts that they somehow agreed upon without discussion or arguments.  J was doing the parts of Dora and Boots and H was doing Swiper the Fox.

Obviously the episode was interupted when Jackson discovered the toast being "fired" after it got stuck and failed to pop back up, hence flames and panic.

J was so distressed about his part in the fire that he had forgotten the Dora episode completely but H had quietly pulled a chair over to the kitchen safety gate amidst the chaos, flames and noise.  He proudly stood upon it and bellowed from atop, "You'll never find your toaster NOW J Ha ha ha ha!"  He then immediately fell out of Swiper character and said, "Mummy! Be careful, you're fired!"

I surveyed the fizzled out scene, turned the screeching smoke alarm off (which went of rather late in the proceedings I might add), started breathing again and burst out laughing (perhaps in post panic hysteria). 

The kids had their bath, the safety gates are still up and stopping nobody from entering unsafe areas and I have yet to replace that "fired" toaster so I am inconveniently using the grill and swearing each time I do so.

We really were and for the most part ARE lucky.

My point?  Oh I don't have one really.  Maybe just that even when unexpected panic (or any unwanted emotion) enters your life and even in the face of fear and potential disaster life aint so bad for the most part and can be a bit of a laugh too.  Focus on what's truly important.

Oh..... And make sure you have a fire extinguisher in your home with an emergency plan... Just in case.

Before and After

Here's my view as I write this post......  The horizon.

It's quite symbolic as I look towards brighter horizons actually.

To bring the reader up to speed with events gone by from previous posts I promised to update about...  The Wiggles concert was a total hit with my H, the local show I talked about in a previous post that we were attempting with the boys combined with ferris wheels, animal rides and showbags was also a successful family day out, we have meetings to start J's school transition booked and things look fairly promising with regards to that.  BUT......  both boys anxiety, meltdowns and challenging behaviours have increased over the last few weeks and I think it could be a case of my energy being transferred onto them if I am honest with myself.

I have not had much creative time of late as I've been too busy putting out fires in our everyday life here at home, working and feeling a bit blue.  (The putting out fires is quite literal but it's a long story best saved for another, more light hearted post).

I've been asked to participate in some wonderful opportunities to raise the voice of families living with autism which via speaking engagements that I should probably (and briefly did) feel incredibly proud about.

I have also been given the gift of a makeover on national television (see here) and I should really be looking forward to it as I rarely do anything for myself and cannot remember when I even bought anything just for me so to have someone buy me some clothes and help me with some styling issues is very welcome.  I am feeling low though that I am neither currently proud of being asked to speak nor am I looking forward to being publicly made over as I have allowed myself to buy into negativity that may or may not be intentionally being sent my way.  I accept that letting negativity in is actually my own choice though and I am working to fix this.  The makeover might be just a superficial pick me up to some but it is deeper for me than clothes I now realise.

This post can be considered my "BEFORE" picture if you like.  It's not a picture of the literal sense it's more of a picture or insight via my written thoughts and words into why I felt I needed to apply for an opportunity to even have an "AFTER" picture for myself.  This Before picture gives you the info about the place I was in when writing my tentative email to receive the makeover.  So trivial in the grand scheme of things and nothing like what I would ever normally put myself up for.

So here is my "BEFORE" in all it's truthful, honest and possibly pitiful glory.......

I am a completely different shape and size (and person really) than before I had children.  Since I have had children I've been caught up in a whirlwind of family dramas and turmoil that eventuated in two autism diagnoses among other things including health issues and weight gain but confidence, friendship and certain freedom loss.  I have had no idea as to what suits me anymore and no time to even care about what I look like.  I have no real interests anymore aside from my boys and their futures. 

I barely have time to catch up with friends and when I do all I can think about is what autism related therapy I need to be thinking about next and it's probably all I talk about too.  I know some friends are avoiding asking me to catch ups. It is devastating when I know that my company is so draining for some friends they would simply rather keep the catch up secret than invite me and endure an hour with me, my anxiety and my one track conversation.  Of course they don't tell me this is the case.  I assume that is to spare my feelings but I can read between the lines...... Or maybe I am in a low spot and simply misunderstand.  I don't know and simply hope I am wrong in honesty.

Whilst on this "BEFORE" and honest track....  I often pretend I don't care what people think of me.  I pretend I don't care about a lot of things.  I sometimes do though. Who in honesty doesn't?

I'm sure the fact that I care about my boys' outcomes is obvious.  The fact I care about autism awareness is certainly obvious too as it's related to how much I care about those beautiful boys.  That's about it though that would be obvious to most.  I don't have a life outside this strange but oh so interesting little world so I am unpractised in the ways of the outside world these days so it's difficult to be feeling excluded from that little world too.

I've lost some connections in the autism world recently. Those broken connections seem more difficult to understand than being excluded from the "old world" of typicality I once lived in I think as those in my ASD world would know how it feels to feel excluded.  It was one of those things I pretended I didn't care about too.  I do though. That is quite difficult to admit.

I once pondered that if we are all in the same boat why must we constantly muddy each others waters and create unnecessary waves?  Surely we should all be grabbing an oar and getting on with the job of paddling to safety together, handing each other a life jacket and sometimes riding out the stormy waters together.....?

Everything I do with regards to raising autism awareness is about my boys and the friends I've been blessed enough to find in this world.  Nothing I do with regards to autism awareness is to do with my ego. It's ironic if it's perceived this way considering what I have disclosed here (and to many of the people swimming along in these muddy waters at one time or another) about my low self esteem.  Ego?  What ego?  Anyone with self esteem low enough to care that someone has misjudged her has no ego. 

I just want to get on with the business of raising my boys to be confident about who they are. That's a bit difficult though if my own confidence is less than zero in the "BEFORE" honesty (yep again with the "BEFORE" and the honesty).

I might be preaching confidence to the boys but I am sure not practising it at the moment.

I don't know who I am outside of autism anymore.  I wrote this in my application to have that makeover.  I really don't know what else is out there in the typical world that I don't live in anymore.  I exist within ASD to be closer to my children who live on the spectrum.  I try and live within the spectrum and see from within it's perspective as often as I can so I can understand my babies and help the rest of the world understand them too.  Yes I want to help them and that was my original motivation to become involved with raising awareness.  Personal experience is something that will always be your motivation to get involved in a world where awareness is so sadly lacking and help for our kids is so scant.  Isn't it about time we just welcomed all help and supported each other in the way we want our kids supported? The only agenda I have is to help raise awareness for autism (and also families living with other special needs actually).  I'm in a position to do that through experience and empathy.  Some appreciate it.

Regardless of how your brand of support is best offered, we are all different and possess different strengths.
Sometimes, if well supported, difference can be wonderful and combining our different approaches can get a job done much better than going it alone and not sharing the hardships.

This is what I'm desperately preaching to my own children? Difference can be a strength. Show people what you CAN do and ask for assistance on the things you are still learning about or need a hand with and put that same hand up when you feel low.

Why am I so open?  Why do I write about this?  Why would anyone be so willing to openly admit they feel low and excluded sometimes?  Because my honesty and openness might ring true for another person feeling low today too.  If there are people reading along who gain no comfort from shared experience or the expression of ideas then this honesty would be of no use to them and that's ok.  I do believe it might be of help to some though, including me through expressing it.  I'm also so open here because it's my way of talking to others.  I've used the word isolation when discussing families living with ASD before.  This is my way of showing and sharing isolation by seeking conversation and connection.

I guess I'm now getting into where I want to be for the "AFTER" .....

I am no longer interested in answering to negativity or letting myself feel that it's ok to put up with feeling less worthy to have an independantly thinking brain and voice.  My willingness to continue letting that in is even further below zero than my confidence.  I'm letting go of hard feelings (yep, I admit to having had them).  They are not worth it and they are sapping my already low confidence to the point that I have changed who I am lately to NOT feel proud of any of my endeavours.  I have devalued myself and my work because of some "chinese whispers."

After allowing myself to buy into it all, I didn't feel proud of anything I've done to help raise awareness.  I just felt small, worthless and as though I should hide my accomplishments and actions to avoid judgement.  I am so terrified my boys may one day feel excluded, worthless and small. It's agony.  Judgement is something ASD families unfortunately learn to live with even though we hate it and sometimes we see judgement where there may not even be any due to being on the defensive just in case.  It's a catch 22 and I have been totally sucked into it of late.  That's why I've been so quiet over here.

I forgot that when you put yourself out there, not everyone will ever approve and not everyone will like you. I forgot that that's ok.  Everyone is different.  Isn't that the point I try and get accross for my boys?  It's ok to think differently even if you are a grown up just doing your best and sometimes feel lost.  Our kids must feel lost a lot as children trying to navigate a world they are differently wired to deal with.  It's not a nice feeling at all to feel lost or small.  It makes me sad but determined to listen to those in my life who are behind me and if I listen hard enough seems to be a whole lot more people than those who are not.

I forgot that what I am trying to teach my boys is a good lesson for everyone whether living in the ASD world or not.  We are what we are and what we are is probably flawed but that's soooo ok.

I have not been listening to my family who are proud of me, my friends who are proud of me and any of the people who thought enough of what I have to say to ask me to participate in any of these events.  I'm going to start listening to them again though.  This is how isolation can be turned from defensiveness into reconnection with the world outside of the catch 22.  To listen and to let some sun in, as a friend of mine who's inspired me to remember that I do NOT have to be perfect because I am already perfectly me...  Yes, a fellow mummy with a very sunny attitude who preaches AND practises being positive and being proud to be yourself (Sunny Mummy) has helped me remember it's perfectly ok to be who I am and remember to shine.  The perfect "AFTER" outcome.  Some nice new clothes, a bit of pampering and a more open attitude to positive over negative.

I'm hoping this physical makeover will help build my emotional confidence up enough to rally for my boys again and resume fighting for them so my energy will be transferring onto them in a much more positive way too and allowing the sun to shine upon their pretty heads.

Isolation, honesty and hurt. Sounds like a big "poor me" even to myself.  I might well be criticised for this post but in honesty I'd rather be criticised for who am am than who I am not.

It would be nice if we lived in a perfect world.  We don't live in that world though so I accept it's not within my control to change people's perceptions.  We do live in a world where you are in control of your own actions and perceptions though.  If I can talk the talk for my boys, I had better start walking the walk.

Speaking of walks, I'd best try and go for a walk to help me shift some of that unwanted physical weight along with the emotional weight I've been unnecessarily carrying of late.........

Who knows what the "AFTER" will really look or feel like?  Hopefully it's more attractive in that positive sense than my current "BEFORE" but only time, some hard work from me and the makeover people will tell.  It's not about feeling beautiful on the outside for me.  I want to feel beuatiful on the inside again I want to grasp onto seeing the inner beauty in me that I can clearly see in my special boys.  I need to feel that again.  I WILL feel that again.

In the meantime I gratefully welcome anyone with an oar to help me stay afloat until a more light hearted post of daily My Story Our Story shenanigans........  (Coming soon)....

A Mothers Day Gift with love from Chantelle. xoxo

It's coming up to Mother's Day.  How do I thank the beautiful souls I have been privileged enough to meet in this world who have walked along side me and propped me up on many days when I really really really needed a hand?

I've said before that this is not the life I expected.  However.  Unexpected is not terrible, it's just different.  On the days when difference is is at it's most difficult I have been truly blessed to know some remarkable women also on this special needs "mothership."

I have very little money, I have not much to give...  I do have words though.  Words are always what I fall back on and the expressing of them through my writing is my outlet, my salve on a gaping wound that is sometimes hurting my heart...  I find them therapuetic and soothing.  I read kind or wise words and am instantly soothed and I write often which helps me stay focused and sort out what my feelings are telling me.

I thought I would gift some words to my fellow special mums (and the other mums too who stand with us in support).  These words are not too sophisticated.  In fact they are as simple as they get.  They would definitely not win a literary prize and my literature professors at universtiy would be aghast! 

They are from my heart though and I hope all the amazing women who I lean on enjoy my gift to celebrate our friendship on this journey.

For Every Mum:

For every Mum
Who’s lifted my soul
Who’s held my heart
When not quite whole

When in broken
Pieces, torn in two
You’ve all reached out
And I thank you

Some days so hard
But others light
My special mums
In our shared plight

For the mums who know
The Holland poem
That bought the tulips
In our unique home

For the mums who cry
Who laugh and share
And the mums who cheer
with you and care

For the Mums with love
In their arms out wide
Who share the steps
So tiny with pride


For the mums standing tall
That brace to fight
With courage and strength
With anger and might

For the mums who balk
That chosen is true
For our membership in
Our unchosen crew

No choice did we have
But the love is our choice
And strong is our love
And in unity our voice

The mothers who lift
The mothers who sob
We accept in our day
To strive is our job

Yes we strive every day
The future in thoughts
We lean on each other
Our own strong supports

For the mums in our club
First with a hand
On days you are crashing
And need help to land

For the mums in our life
But not in our boat
And hand us an oar
To keep us afloat

Those friends with the oars
Are scarce on the ground
So we thank those ones too
They are a true gift when found.

For the mums on their own
On these stormy rough seas
With strength that would bring
Most to their knees

For all of my friends
And all the above
You ease my own load
With your friendship and love

I thank each and every one of you.  Happy Mothers Day. 

With love from Chantelle xo

Camp Tales of Triumph and Tribulation (and Terror)

Recap:  Last posting was one of nerves and anxiety on my part about my firstborn baby boy heading off to big boy camp with his occupational therapy clinic and my hopes for his success to prevail and my terror to subside.

Great news!  We all survived camp.  J had a great time and happily set off towards his camp leaders each morning when I dropped him off.  The leaders talked me through all my nerves each day (very patiently which I thank them for) and life has gone back to our usual school term routine again of familiar, safe preschool, familiar, safe occupational therapy in the familiar, safe clinic each week and no more camp preparation, worrying and organisation to do.  "Camp Finished" as it affectionately became known as around here after Jackson crossly expressed his feelings that "Camp is Finished" one morning when he was at first hesitant to attend but then went on to cooperate happily with morning routine to get ready and go... Well "Camp Finished" is in fact finished.  Now forgotten and no need to think about the anxiety this big milestone caused.

Except there is big reason to revisit the events of Camp Finished.  Big indeed.

Whilst J did happily attend and did participate in some amazing activities and had a wonderful time, he managed to do this only because of constant vigilant one on one supervision and encouragement.

One step at a time......  One small, tiny baby step at a time.  I know I know.  The thing is though, this one on one support he so desperately requires to participate in all of these fantastic and fun (for many kids but sometimes not so for ASD kids) will no longer be available soon in the NEXT big milestone we face as a family and what are we supposed to do when he doesn't have the one on one support for him anymore?

My concerns about J absconding and constantly running away at camp were in the end founded and the original ratio of adults to children in his group had to be increased to be able to keep him safe and provide the support he required to stay with his group.

The fact that he happily trotted over to his leaders each morning in a completely new setting, so very different from his usual and comforting routine was a huge achievement for J so we are focusing on these positives along with his excitement about seeing new friends each day which was enough to light up my soul with bright hope for his future potential to form meaningful friendships (the number one and heartbreaking worry for an ASD mum usually).

But! And there is always a but isn't there?

But, to join his group and participate in even a simple task for most kids like eat his morning tea?  Well that caused major emotional meltdown for my beautiful and highly sensitive little man.  He needed a large amount of encouragement to join in for the widely perceived as "fun" group activities like music, craft, obstacle courses and many others that if offered for him to do at home or in his much loved and familiar setting of preschool he has now come to enjoy and look forward to with easy transition and participation (most of the time).

Each day his lunchbox came home still untouched as his anxiety was too great to eat to enjoy the social chit chat usually required or cope with the sensory overload that eating a meal with friends causes for him.  Most days the craft project many of the other children proudly presented to their parents was not completed by J, such was his aversion to trying something he was not familiar with or had no understanding of the expectations of his role in how to complete the task.

Each day when I went to collect him my run down of the day from his support carer was quite literally that.  How many times he ran away, needing to be gently and in a very supportive manner, led back to his group over the day during anxiety provoked emotional meltdown.

Please understand I really don't care about the one less craft project to pin on the wall or the food not eaten in the lunchbox.  I only care about the emotional difficulty and anxiety it caused for my boy.  It hurts me to think of him so frightened about what most of us do and enjoy with little movement on what I liken to an emotional Richter scale.  This Richter scale for J goes up and down with incredible intensity every minute over every task which must be absolutely exhausting for anyone, let alone a child.

This clear need my child has to require such intensive one on one support for his "behaviour" has led me to consider the schooling options (yet again) for next year.  It's a fact he will not receive this support in any formal school setting we have to choose from.  His high IQ means he is not eligible for a support class and mainstream school does not provide one on one support due to funding.  My God how I hate that bloody word.  FUNDING!  It's hard to care about the difficult position the schools and teachers are in because of funding when when the position your CHILD is in is the only thing on your mind.

So whilst I understand that baby steps are still steps and whilst I stand up and cheer, clap and whoop at every single one of those baby steps we take every day with this amazingly brave and oh so bright little boy I also have the niggling worry that we are running out of time for baby steps with the next big milestone looming ahead getting closer and closer in our very near future and not at all in proportion to the baby steps we are enjoying.

Every single decision is fraught with worry when your life is one of a differently abled child.  Every single one.  I wonder if one day these decisions get easier?  I hope so.  I feel some days I bear the weight of the world on my shoulders in an effort to take that weight off my children's sweetly innocent, little shoulders who should not yet have to carry such a load.  We have worked out a balance of helping them gain the independence they will need to make it out there in that heavy heavy world and also bearing the brunt of some of the weight for them when need be I think.  It's hard to tell if the balance is totally right especially on the days I could collapse under the weight.  I never do though.  I'm holding strong and will continue to do so but sometimes it's very difficult to bear the weight without the anger, worry or sadness that sometimes goes along with carrying such a load day in day out.

Thankfully, the baby steps come along and make the load just that little bit lighter at exactly the time  I am thinking it's way to heavy to continue to carry, every single time.

I guess the baby steps are what keeps me going and what will help lead my boys down the right path for every milestone we walk towards (and then have confidently climbed over so far) including the big scary one called school not too far off in the distance.  If you see me struggling with the weight of the world in the lead up to each milestone please don't hesitate to send me the encouragement of those who have gone before me or who just understand and share the load with me in their own lives.......

Combine the encouragement my true and wonderful friends help support me with and those delightful little baby steps and I think we might even see a few leaps and bounds too just like the one I am choosing to focus on for now from confronting, lovely, scary, fun, anxiety provoking, milestone climbing "Camp Finished."

My J described his fellow campers as his friends.  That's quite a leap!  I'll join him in that leap and throw in a cheer for his bravery and all the leaps and little baby steps he has made along the way and continues to make. 

OK....  We are now about to attempt a leap and a bound in one.  We are taking both baby steppers along to the local show complete with flashing lights, side show games, rides like the Ferris wheel, animals and much much more.  Are we mad?  Possibly.  We are also optimistic that we might just baby step through the gate, leap through the show and bound back home with big smiles on all of our faces to cheer about.

I'm sure we'll have a tale or two to tell about the leap of faith we are taking today.  Let's face it, My leaping and bounding about boys provide me with stories and tales about the most banal activities every day so I can only imagine what this undertaking will provide me with.

Bye for now.  Back soon with tales of (hopefully) show triumph. ;-)

What came first? The chicken or the egg?

Age old question.  I ask it because I am a bonafide chicken these days.  A nervous nelly of the highest order.  When did that happen?  This mother hen is living on her nerves and not loving it today.

My son is going on a camp with his occupational therapy clinic next week and I am a ball of anxiety over it, living in terror that it will be a disaster!  Why?  Things have been going pretty well around here and J amazes me every single time we face a challenge so what is with this knot in my stomach?

I know he will be cared for by highly trained and trusted professionals who are familiar to both him and me.  I know he will enjoy many of the activities and I know the independence it is aimed to foster within him is the whole aim of the experience and what we are striving for for J's future but still, I'm torn up with these nerves.

Why can't I see the forest for the trees?  Or can I?  My judgement was questioned yesterday on an unrelated matter to this one suggesting my perspective is clouded by ASD.  Maybe it is.  Isn't everyone's perspective shaped by their own experience though?  Maybe my perspective is totally clear particularly with regards to my instincts and how I see my children because of the shoes I've walked in and those who have not walked in them have a different perspective because whilst I'm in a pair of sturdy but scuffed sensible flat shoes with a few holes in the soles (or maybe even holes in the souls too), others are in shoes I'll never wear again like stillettos or platforms so the view is different?

I worry constantly about my boys futures (no big secret revelation there...  You've all gathered that by now).  I cautiously consider every opportunity for them and make the decision after hours, days and months of angst ridden soul searching and exploring every possible outcome (which is not always comforting).  I see my boys through the eyes of a parent who knows their foibles, their strengths and their difficulties including ASD so I guess I am looking through a fog in some ways but then others may argue the way I see them is with a clarity that those with no experience of ASD would never have.  I wonder if the way I parent is because of Autism or if I would have been this cautious, clouded, careful, colloquial, calamity conscious, confused BUT sometimes calm and clear regardless of the child or diagnosis?

I wonder if I parent this way BECAUSE of Autism or if I would have been crippled with self doubt, questioning of my instincts about big changes and choices for my kids regardless of their neurological make up?

Well.......  Who knows?  Not me.  I'll never know because when it comes down to it my journey is this exact one I step into each and every day.  I put my sensible scuffed flats on and I take one step at a time and put one foot in front of the other. 

Those shoes help me step over the many bumps in the road I walk through each day and they help buffer the shock of the unexpected forks in the road I walk upon to get me and the boys to our destination...  Is the destination totally influenced by ASD?  Probably.

How could it be otherwise?  That's our life.  It's not an unhappy life, it's a sometimes hard life but isn't every life sometimes hard?  It's a wild old ride and a pretty crazy and noisy life I wouldn't trade though.  With this life comes extra worries about the independence of my chicks and their future prospects when they leave the nest of wild but supported comfort here in the nest.....

The camp is still at the forefront of my ever ticking over and worry filled mind and with good reason.  This is my baby.  Yes I know he's growing up and I know he's in good hands but this is MY baby.  The same little guy I've never even let go on a playdate without me.  The same little man who has never had a sleep over at Nannie's house because of his intense need for rigid routine (not mine, frankly I would have loved the odd night off other parents get but understand how hard it is for my boys so don't push it).

However, I am about to drive up to a driveway at a camp especially devised to cater to his sensory needs and I am about to drop him off to spend five hours each day next week with professionals who do in fact know and I suspect love him.  They don't love him in the same heart breaking and aching way his mummy loves him but they do love him.  Every one of these amazing ladies who work at the clinic putting the camp on have embraced my family and laughed, cried and encouraged my boys along in their journeys so why am I still terrified to wave goodbye in that driveway and wish him a happy day of activities each day at camp......?

Why is it so hard to be tough and NOT be a chicken?  I think it really is a case of life experience influencing parenting style.  Ask anyone.  I was one crazy, fly by the seat of my pants kinda gal BEFORE Autism.  Now?  It's all changed and I live by schedules, routines, ASD techniques and making my boys as comfortable and anxiety free as possible.

What is the cost?  Thier anxiety is lowered.  Mine is heightened.  I will take it..  Happy to bear it a million times over if means I could take theirs away totally.  I doubt that will happen though.  Instead we just live with our individual levels of  anxiety the best we can and occasionally they come to the surface like this week with the impending camp adventure.

Maybe I should ask not what came first when referring to the chicken and the egg but instead the Autism or the anxiety?

Either way, we have one anxious, chicken worried sick about her Autism angel for next week's adventures.  I'll let you know how it goes.  Hopefully this chicken is clucking happily away about how well it went and maybe just maybe I'll be able to report of a graduating rooster crowing about how much independence the old mother hen allowed him to acheive by sitting in her nest after casting him out for the first time and nervously picking at her feathers in silent encouragement.....

I wish my little chick all the best and nervously send him out to find his own wings next week at camp.

May you spread your wings and fly my baby.  Fly as only you can.  Soar to the heights I know you can reach!  I love you and ache for your success.  Not for me.  For you.  Cluck cluck.

C.xo

Share and share alike.

Hey there!

A quick pop in today to share a friend's blog space that I just LOVE!  I've connected with an amazing special education teacher who is an author, a blogger, a university lecturer to undergraduate teachers who are learning how to include children with special needs.  Oh....  and an AWESOME advocate for children with Autism.  If Amanda Gray and her Learn to be Buddies series is not already on your radar, please pop over and see what you think.

Learn 2 be Buddies

This month Amanda is doing her bit to raise awareness for our kids by posting the stories of parents and our special moments with our little spectrumites.

Not surprisingly, I jumped at the offer to participate and have shared two of my stories so I'm now putting all of my best behaviour actions and lessons into practice and inviting someone else to take a turn. There is a link at the end of my story to find out how YOU can share your own story.  Please consider doing so.  You can remain anonymous if you wish. 

Have a look and share Amanda's project via your networks and don't forget to come back and tell me if you liked the stories I shared (the Easter Parade one is familiar to regular readers over here but it's too good not to tell twice and it still lights up my face, my heart and my life to recollect it).  I've shared a special moment about my beautiful H bunny too and even provided a video to watch about what Autism looks like to my family.  (Amanda posted it for me as I am not skilled enough in such technicalities to attempt it here....  still learning as are we all).....

I sincerely hope you enjoy the visit to Amanda's blog and of course invite each and every one of you back over here anytime.  I like having you all come and visit me on my journey.

Please visit Amanda Gray's Learn to be Buddies Blog here.

C.xo

To cure or not to cure..... That is the question...... Or is it?

After a whole day of staying UNUSUALLY quiet on a very very hot topic in Australia yesterday after a national morning television program featured a mother who claims to have cured her son's Autism, I have considered my response carefully and I am posting it here.

Australian mum, Vicky Leon appeared on Australia's Sunrise program yesterday and discussed the dietary and biomedical interventions she had put in place for her beautiful little boy, Nicholas.  see here for the full segment  Prof Kerryn Phelps, president of  The Australasian Integrative Medicine Association (see here for more info about AIMA) also appeared as the segment expert and backed up Vicky's approach to treating her son's Autism and explained how many symptoms of Autism will ease by implementing appropriately supervised (by a specialist paediatrician) dietary changes and vitamin and mineral supplements with a focus on reducing toxicity after a series of medical tests have been performed to properly gauge what dosages are required according to the individual child's blood, faeces and urine results.

I watched with interest as my sons follow the same dietary guidelines and are treated under the very strict supervision of a specialist biomedical paediatrician who is part of the MINDD foundation.  MINDD Website link here 

Here is a very short outline from the MINDD website to explain the philosophy behind the practice: 

"The MINDD Foundation promotes an integrative approach to healthcare for the whole family with a focus on biomedicine, nutrition, neuro-development and allied therapies. We help practitioners and patients find effective treatments for Metabolic, Immunologic, Neurologic, Digestive, Developmental conditions that often affect the mind. "

As I watched Ms Leon talk about the biomedical practices and the changes she saw in her gorgeous little guy it was like I was hearing my own sons' stories to be honest except for one thing.  Whilst I recognise that my children have come an incredibly long way, are coping better with comorbid conditions like the anxiety associated with Autism, progressing to having advanced language after an initial quite marked speech and language delay (in Jackson, not so much with Hunter who has had very good speech all along) and their classic symptoms like flapping, toe walking and other stimming (self stimulatory behaviours) have all but disappeared.......  I recognise all of this and celebrate the progress we have made every day.... The one thing I do not recognise or agree with is Ms Leon's use of the word "CURE."  I also strongly disagree with Prof Phelps' decision to appear on the program and not address the usage of that particular word. I feel it was irresponsible to use such a word as many parents in the thick of an Autism diagnosis will be given misleading hope and in this case I truly do not believe it is just a case of semantics.  I dont believe that Autism can be cured.  Ms Leon, stated her son had very few symptoms associated with Autism anymore, attends a mainstream school and has lots of friends, improved language and eye contact as her basis to back up the claim of curing her absolutely gorgeous son, Nicholas.

My children are all set for mainstream school, have excellent language, barely any classic signs of Autism anymore like the stereotypical lining up toys, greatly improved eye contact (that old chestnut of controversy in diagnostic land) and both are very engaged in our family and friend's worlds.  

Cured?  

NO WAY!  Autism is so much more than eye contact, stimming and lining up toys. So so so much more hence the term, Autism SPECTRUM.

Both of my sons have residual issues like difficulty in crowds, social situations, sensory sensitivities and although they can blitz an IQ or language test they have lingering perception and processing problems that will probably remain with them for life.

The amount of times I've heard statements to this effect, "Oh my God, they have Autism?  You can't tell they have Autism, they don't look like they have Autism!"

My question is WTF does Autism look like anyway?

Surely we are now past the entire world thinking Rainman's Raymond Babbit is the only presentation of Autism? Apparently not in many cases.

I am all for parents trying out any type of safe treatment approach when tackling the tricky and mysterious spectrum of Autism related difficulties that are present for the child in question and as I said, I am a happy passenger on the GFCF (gluten and casein free) biomedical train. 

When I heard about this so called miracle cure for Autism when Jackson was first diagnosed I jumped aboard that train at the first biomedical station and have been holding on to my seat on this unpredictable and terrifying track that is our own Autism journey for grim death.  Did I want a cure for my son back then?  Yes I did.  If any of the numerous "experts" I saw had have told me I could cure him by standing on my head, clapping my hands and playing the William Tell overture on the piano with my toes simultaneously, by God I would have done it and I would have done it to perfection so I could never ever look back and wonder if I had really tried hard enough to cure my boy.

The day after diagnosis, I read actress, Jenny McCarthy's tale of her son, Evan's recovery (she does not use the word cure contrary to public perception) from Autism called Louder Than Words see here in one sitting over the course of two life changing hours.  I closed the back cover of the book and proceeded to find my local MINDD Foundation doctor and I begged for an appointment as though my life depended on it.  It did.  My son's life depended upon getting into this miracle doctor as far as I was concerned.

I took my son to that doctor with the express purpose of getting him cured.

How ignorant I was.  How blissfully unaware I was of the complexities of Autism and also the gifts and a life of true beauty that can be possible within a life with Autism.  

I no longer aim to cure my son.  I understand Autism better now.  I aim to reduce the difficulties my children face with such a diagnosis (including the digestive issues they had pre GFCF biomedical treatment that affected their behvaiour, attention, language development and mood regulation).  I aim to raise awareness for them and help make the rest of the world more accepting of their probable lifelong differences.

It's been my aim all along to avoid any pharmacuetically based treatments and via biomedical treatment we have so far been successful and have yet to require any kind of medication for either child. It is important to never rule any option out though and I accept treatment is as complicated and as my children and will require constant review.  Biomedical has indeed been life changing for our family.

It is not a cure though.  I doubt it ever will be and I doubt I'll ever have that aim again anyway.  This mode of treatment has been enormously beneficial in my house but it's not the same story for everyone so I respect those who choose not to follow this treatment plan and would ask for the same respect and courtesy with regards to how I choose to help my sons be the best they can be.  Not be something they are not but be the best they can be.

Each parent sees things differently and the controversy this segment brought up on the social media sites I frequently hover around on getting tips, ideas and make friendships with others in the Autism world was massive.  see here for Vicky's Facebook page   I was a little shocked to see some of the comments from friends of mine judging Vicky Leon's decision to treat her son with biomedical practices and I was aghast to see one of them publicly denounce anyone who would put their child through a bloodtest to find out the appropriate dosages for such vitamin, mineral supplementation approaches.  I admit that the five minutes of trauma during J's blood test was harrowing.  I cried and wondered if I was doing the right thing whilst he was crying during the test.  However, the previous months of anguish, meltdowns, communication breakdown and for me a near nervous breakdown because of my inability to cope with these issues was far more difficult than the one blood test my son was subjected to in order to correctly analyse his treatment needs.

I personally (and it's different for every parent) felt far more comfortable with this responsible approach to putting anything new into my son's fragile system than the previous paeditrician's casual scribbling of a trial prescription for three different drugs to just "have a go at making him a bit more normal before I see him again in 6 months."  Yes, that is a true story.

We are under the very strict supervision of a world recognised expert in the biomedical field and the results have been fantastic for J and H who both seem much happier and more able to cope with the confusing world they live in and no longer live with excruciating gut dysfunction which is reason alone for our family to continue with this approach in conjunction with specialist sensory integration play based paediatric occupational therapy see here.

I repeat though.  They are not cured and nor do I want them to be.  I don't believe Autism is a disease.  I believe Autism is a way of thinking differently.  I believe Autism is an always complex and sometimes wonderful world to be a part of.  I think trying to cure my sons would mean I am trying to change who they inherently are.  This does not interest me as I love them exactly as they are but admit to thinking their path is more challenging than others because of some of the associated Autistic issues so instead of trying to change them or cure them, I am trying to help them overcome some of those issues.

I guess I now believe Autism is actually a way of BEING.

To cure or not to cure was my original question.  I think I'll draw upon the genius of one of my favourite, complicated and quirky authors, William Shakespeare who happened to create a rather indivdual and complex character called Hamlet and quote him here as it's so appropriate.  I change my question now to Hamlet's quandary, "To be or not to be?  That is the question"

Yes, to be or not to be?  That is the real question.  If Autism is a way of being, I choose TO BE for my boys and I think they would to.