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.

Put on your Easter Bonnet, and all your frills upon it..... Oh and just add a sprinkling of joy too please......

I am brought to you today by overwhelming joy, happiness, pride and love.  Oh did I mention love?  My heart is busting with overflowing LOVE!  A happier Easter I could not wish for after today's Hat Parade at J's preschool.  These events are always so hit and miss for our family.  We never know if J will participate or if it will end in meltdown and/or sensory overload because these happy and fun events that most mummies love going to after they have lovingly made the big fancy Easter bonnet for their child to proudly wear in the "fun" parade are more often than not a source of great anxiety for Jackson.  He hates the change in routine, he has trouble with sensory overload in crowds and he is super avoidant when it comes to "performing" a task he is not familiar with.

Today though, there was no miss about it.  It was a HIT!

Just when I thought I could not be more grateful to the beautiful women who help support my baby boy (he'll always be my baby boy) at preschool, they pulled off a miracle through their dedication to make the parade "J friendly" for him and it worked.  A few simple steps to familiarise him with what would be expected and a bit of compromise on both sides and hey presto!  I was able to be one of the "other" mums in the crowd for once who needed not even once to explain why J was "behaving" in a certain way.  Not once. The teachers had started practicing the parade with J last week and talking about it and the bunny ears he would be asked to wear during it.  He was also paired with the most delightful little girl (and is apparently his future wife, as according to this beautiful little girl, she is going to marry my J).  Of course, I'm fine with the wedding plans as it's the little things like that that I never take for granted .  I love to hear about the girls in the class talking about their plans to marry my baby boy I mean, they are only human and although I am incredibly biased and totally shameless in my adoration for my boys, I think J is so perfectly and beguilingly handsome that his looks will help him through many of life's obstacles and believe me, I'm grateful, chuffed and also bemused that these sweet little preschoolers are already falling for his big ringlet curls and his big brown eyes and that oh so cheeky big grin.

So there we were, sitting front row and centre waiting for the parade to start and I will admit to having my usual knots of nerves as I so hoped it would turn out well and not just for me and any need I have to see J do the "right" thing, more for J so he could enjoy the parade like the other kids and for once feel comfortable and happy even though it was a change in his routine.

It was quite a long wait until J's turn and he sat pretty quietly with the kids for the most part aside from one little excursion across the lawn to give me a heartfelt  kiss and a cuddle and also one of each for his little brother who was wearing his own set of Bunny Ears in support of the occasion.

J's turn came finally, my video camera was poised and ready to go just in case it was a hit and not a miss.....  Will he do it?  Won't he do it?  No one around me would have seen the inner encouragement I was trying to physically send out to will my little guy on and help his anxiety stay at bay so he could just walk down the path holding A's hand and walk back again.  I'm talking about possibly a maximum of twenty steps.  Just twenty little steps so many parents would have no understanding of the difficulty those steps would consist of for my J.  Twenty steps of sheer terror for many children with Autism and although twenty steps sounds like such a small task, our world is one of only EVER taking ONE step at a time.  It's like the Autism Mum mantra I think....  We probably all have the same mantra in our heads for any occasion, any day, any task, any achievement.. anything.  One proverbial and symbolic step at a time...

Yet here I was hoping for twenty actual steps. With the expectation of him overcoming the possible sensory issue of the bunny ears.  With the expectation he was to hold A's hand and guide her along for the twenty steps too and with the expectation he would be fine with all the clapping which is another sensory concern for him from the parents and teachers as they encouraged each child through their twenty steps.

Camera poised.........  Time to take the first step.......

Huge smile, A's hand delightedly in his own and off they went.  I'm teary recollecting it now.  "Hello Mummy!" he called as he competently passed me by on his twenty steps of pure unadulterated bliss for all to see and experience with him.  Step ten or so was time to turn around and he paused.  A look sideways to the grass beside the path of the parade......  He bent down and found the only yellow daisy in a big patch of green, plucked it from the ground turned around to take the return journey to the class and proceeded to rush over to me again with pretty, sweet, patient and kind little A still in tow (sporting the most open and giving smile of her own too).  J handed his freshly picked yellow daisy to me and I'm being generous by not calling it by it's rightful name of a weed.... but it was simply the most exquisite weed I have ever seen. He looked at me squarely in the eyes, shared a moment just for us in a crowd of many others and said in his ridiculously loud voice, "I LOVE YOU SOOO MUCH MUMMY."  I responded through my predictable and joyful tears that sprang up from my always aching heart..... "I love you too J, thank you baby boy."

After a gentle prompt to be a gentleman and continue escorting his betrothed back down the path to return to his class, he adjusted his askew bunny ears, grabbed dear A's hand and took his next ten steps too pausing only at the end to tell A he was sorry he had no flower for her but he loves her too and sealed it with one of those heart breakingly innocent preschooler kisses.  A nodded and smiled and I think they shared their own moment of a friendship I wondered once if I would ever see for my baby.  They hugged and took their places back on the mat with the other kids.

Bliss.  Joy.  Tears.  Heartache.  Happiness.  Daisies.  Kisses.  Hugs.  Moments.  Love.

I believe I visited Heaven today.

Love.


 **Note.  In all the emotion, I did not realise until after wards that my video camera was on the incorrect setting.  No vision unfortunately but all audio was captured.  I've requested that anyone present with a video camera  might gift me a copy of any footage they took.  I believe I was meant to be present in that moment without distractions and totally focused on J. I shall always have my memories and this one will never be forgotten.**

Do Labels REALLY stick?

Autism, Aspergers, ADHD, ADD, ODD, SPD, PDD......  Labels?

In my opinion, NO!

A label is the sticky thing we refer to on products in the supermarket that tells us what's on the inside of a can, NOT what tells us what's on the inside of A CHILD. 

I work very hard to dispel the myth that a child is labeled for life by receiving any of the above letters in a developmental assessment. 

After chatting with several parents this week who have brought up their reticence to "label" their child even though they clearly show signs of fitting into one of the above diagnostic criteria I'm becoming increasingly frustrated with the language (and ignorance) of our society (again... See here to refer back to a previous very very long posting for the origins of my dislike for poorly thought out responses and language).

When J was diagnosed as on the Autism Spectrum, it's no secret that I found the diagnosis scary and even devastating at first, I have now learned that my children are much much more than a diagnosis or label as some see it.  I was scared and devastated because of my own ignorance at the time and whilst it's quite common for parents to "grieve the loss" of their "normal" child (which is definitely a label of little substance and certainly not all that measurable by any standards), it's also pretty common for all of us in "label" land to pick ourselves up by the bootstraps and get on with the task of raising our differently abled (and perceived labeled) kids with pride and love.

If a child meets the diagnostic criteria for a diagnosis of any neurological condition it is actually useful and helpful (according to many many adults I have spoken with and are friends with on the Autism Spectrum) to go ahead and diagnose that child correctly so that they are supported within the school system (a diagnosis is the only way a child in Australia qualifies for extra learning support which they are guaranteed to require whether the reticent labellers are willing to accept or not) and in many cases the diagnosis explains to not only the rest of the child's network about some of the struggles they might face but also to the child himself (or herself) as they get older as to why they always felt different and in many cases misunderstood and in some very sad cases, miserable because of the lack of understanding and acceptance.

J was diagnosed on 08/08/08 and H much more recently (and I still quesiton that diagnosis as he presents so differently to J did but perhaps that's just the point of it being a spectrum).  I'm aware that everyone is different and children do not fit into a distinct box (see the article I wrote for Sharisa Joy's Voices and Choices of Autism online magazine last year to see my own concerns  in the notes of my facebook page) but when I play with my children I don't see them as Autistic first and a child second.  I don't feel any differently about them than I did on 07/08/08 pre first diagnosis.  I see them as J  and H.  Two very distinct individuals who share a bond of brotherhood and also a spot on a very diverse and varied spectrum of diagnosis.  Hence now Autism being recognised a a spectrum of complex neurological issues and not a rigid list of symptoms and boxes to tick.

My children are very alike in some ways and very very different in others.  Like any brothers.  Yet they are the same in the eyes of the departments and service providers we now have access to because of the diagnosis who can help them receive intervention (now that's a label.... how about, treatment or assistance as an alternative?) which will help them lead full, productive and most importantly happy lives (I so sincerely hope, happy most of all) lives of real substance filled with fulfilling experiences and relationships.  If I was slow to act and avoided the labeling process we would have missed out on so much progress for them and ultimately acceptance for them.  If I didn't fight to have them diagnosed I'd still be struggling to understand my beautiful and oh so accepted children.  It would be me living a sad and confused life, right along side of them and the way we all felt pre diagnosis was so stressful I never want to return to that world of label free but very very frustrated children (and parents).

For our family the diagnosis or label as some choose to incorrectly and ignorantly see it was the opening of a world of wonder, mystery, challenges (but overcoming all of them each day), love, acceptance and awareness.  I remember sitting in a counselor's office only a week after J's diagnosis and sobbing over what I (incorrectly and also ignorantly) thought this "label" meant and I vividly remember this woman looking over her public (overworked and inexperienced) counselor clipboard and saying, "It sounds like you are saying that Autism isn't FUN Chantelle?  Is that right?  Autism is not FUN?"  My reply was silence with mouth agape and furious wiping of flowing tears.....  She plowed on in her own ignorance (I now see the funny side but it has taken time), "Well it's my job as your counselor to make Autism FUN!"  Yep.  I'm serious.  She really said that.

After I'd picked my mouth up off the floor and gathered my things up I left her office without a word or answer of any description and never returned.  I vowed I would go home to my beautiful children and simply accept them.  I promised myself I would learn everything I could about how they tick and set about doing so and still constantly learn from them and many others with this label of Autism (among others).

To fear labels is understandable but fearing a correctly made and well supported diagnosis that will lead to understanding, help and acceptance is unfathomable to me now.

Here are the labels I would fear far more greatly than Autism:

1. Naughty
2. Bad 
3. Stupid
4. Misunderstood
5. Sad 
6. Bully

There are more but those should give a bit of food for thought.  Perhaps those labels are the ones that are the ones we should all fear for our kids to receive particularly if the only reason they receive them is because of our own ignorance, misunderstanding and denial......

A diagnosis is not a label and a child is not a diagnosis.

A child is so so so much more than a diagnosis.

We are fast approaching International Autism Awareness Month (April) and I invite everyone to join me in raising awareness (including their own) and celebrating our children for who they are regardless of their "labels." 

More another time.  Just off to jump on the trampoline with J and H.  Two wonderful, funny, loving, loved, understood, accepted, celebrated, brilliant little boys who happen to have a diagnosis of Autism.

Just ironing out the creases in my forehead.......

Good grief!  It's only day three in a whirl wind of a week around here (is there any other sort?).

Day one was the graduation ceremony for the business course I completed which was sponsored by The Wise foundation, The Body Shop and American Express.  Free business training to women with big ideas but not necessarily the means to fulfill them without a helping hand. See here for more info about Bizness Babes.

I am now in a much better position to get my business ideas off the ground and not only provide a brighter future for my boys but also eventually provide more access to the awareness raising stories I write for kids with special needs see here.

I had barely had time to reflect on the pride I felt at having been selected for that course and then completing it than after I literally just walked in the door from the graduation ceremony with two really tired boys after the car trip from HELL which involved traffic, meltdowns, emergency rescuing by my knight in shining armor (hubby came to my aid in a last minute dash to accompany me to the ceremony after a near nervous breakdown from me in that car from HELL via mobile phone begging for help).  So anyway, I'd literally just walked in the door and I received a phone call from Carers NSW informing me my last minute application to become a Carers Representative had been accepted and training for that role would be starting in a month's time See here for more information about Carers Representation.

Here is an explanation of the role from the Carers NSW website (above link):

"Carers NSW provides Carer Representation at all levels of government and non-government organisations, and to the media. Carer Representatives can be involved through guest speaking, committee meetings, forums and media interviews. The aim is to inform a range of professionals and general members of the community of carers’ perspectives.

Carers have the opportunity to participate as Carer Representatives and engage in policy planning and service decisions that affect them as individual carers; carers in general; in relation to the people they care for; and their families."

I received an email about 6 weeks ago from two of the services our family is involved with through the Autism therapy for the boys, suggesting I apply.  I initially did not want to do it as I am already struggling with time management but then after a few discussions with key helpers and mentors in my life I decided to give it a go and apply as after consideration I felt like I really would be suited to the role and it would help me voice the issues families living with disability and difference face on a broader platform which can only be a good thing?  Well at least I hope so.  I'm a firm believer in getting off your duff if something is not working in your life and doing your best to change it yourself.  Hokey isn't it?  I'm one of those people who want to make a difference.  Oh dear.  Sounds so trite but it is sincere.

I really don't like the world my boys are growing up in and the opportunities (or lack there of) for them so I do my best to change their world for them.  With regards to this role though it's about the family unit as a whole and I also do not like the lack of opportunity out there for the people who care for their children and loved ones who need it.  Our Prime Minister was recently asked on a morning television program about the lack of funding for carers and Mr Rudd replied that the federal govt had increased the carers allowance since he was elected and will continue to review the funding allocated to carers.  It's true.  The allowance has indeed been raised and I am grateful for it.  The $53 per week per child with a recognised disability/developmental delay is indeed helpful.  I used to earn roughly $60,000 per year in a part time employment arrangement which is no longer possible with the countless appointments, assessments, therapy and general parenting demands a child with an Autism Spectrum Disorder requires.  Clearly the $53 per week per child does not come close to even my part time earning potential and whilst I am grateful for any help it really is clear that families in our situation are desperate.  Yes desperate.  Not just in need of a helping hand but desperate.

It's also no secret that I think the respite situation for carers is not even close to adequate and many families I know personally have simply canceled their respite service after months and sometimes years of desperate (there is that word again) fighting to prove eligibility for any respite to begin with.  Why do they cancel the service?  Because it is inadequate in many cases.  Many respite workers are not specifically trained to deal with Autism in our case or whatever the specific need of the individual family is for that matter.  Most respite services do not look after siblings which can create massive organisation and family harmony problems whilst the respite worker is in the house (yes, this one is my own personal experience as I was only deemed eligible for respite for one of my children and was told repeatedly by the worker that she was only there to look after him, not both when my other son wanted to join in the fun and play with is brother too).  It boggles my mind why childcare/preschool cannot be claimed as respite up to the the allocated package allowance for younger children as it is possibly the only place that does indeed provide the promised respite with actually qualified and familiar workers who understand the needs of the individual  they are caring for best.  It would certainly solve the waiting list problems and help us already financially and emotionally desperate families (sorry but it really is the only word to adequately describe the situation of many of our families).

Seeing as I'm on a roll I'm about to bring up the golden nugget of things carers related in at least the Autism world right now.......  Autism funding.  The Federal Govt recently implemented the "Helping Children with Autism" package see here  which has been the sole reason my own children have received some partially funded top level private therapy over the last 18 months.  Did I mention I was grateful?  Oh my word am I grateful.  My sons have had access to world leaders in occupational therapy based on sensory integration which has been the reason for their phenomenal progress without a doubt.  see here for more information.  I am lucky enough to live near such world class providers of therapy but I do personally know one family (and there are thousands of them in reality) that had no such access to services in their regional home town so they actually picked up their lives and moved the family miles and miles away from their extended family and friendship support network to live closer to the services their son needs.  Such was their dedication and the dedication of all of us mums desperate to help our children.

So yes I am grateful for the funding allocated for my sons but I am also very conscious the funding is temporary and that I will have to come up with some means of affording this therapy on my own very very soon when their funding runs out.  It's also worth noting that whilst children under the age of 7 get access to this funding, what about the kids just turning 8, 9, 10, 11.......  The teenagers? The adults?  You get the idea...  What about those people living with Autism and their carers desperately trying to afford to pay for them to receive treatment to help them function in everyday life, improve communication or find employment and housing when us carers get too old or exhausted to continue caring for them?

There is also the guilt that many of us Autism mums have that we should not be complaining in the slightest seeing as at least we get SOME funding.  There are many many many other special needs that receive NOTHING in the way of funding and I simply cannot imagine how the carers of those kids put one foot in front of the other and keep a roof over the family's head because even with the funding my kids get we struggle (desperately).

There has been much talk recently (oh look, are we in an election year again already?) about the proposed increase in funding and all of a sudden I see the proposed ideas of the opposition govt and what they are about to promise if elected.  see here  The cynic in me cannot help but think it's an empty promise as so many of the election promises always seem to be but everyone has their reasons for choosing who they vote for and trust me, mine is very transparent.   I will vote for whoever throws the most money at Autism therefore, whoever will help my sons best.  Opposition leader, Tony Abbott recently put his foot in his mouth when he slipped up on camera and described women as "housewives of Australia doing the ironing." see here for entire comment and story regarding power bills going up and the govt's proposed trading emissions scheme

Ticking his box on the voting card does not really light my fire after such comments and many of his other public views on women's issues but as I said.....  I'll vote for my boys future first and foremost so will be watching the Autism funding based election promises of all parties with much interest.

However, if I should ever get the opportunity to meet Mr Abbott via my new role as a carers representative or via any other means actually I do ask that he forgives my disheveled appearance these days as the only thing I have time to or would even consider ironing are the creases in my forehead due to the stress, financial hardship and emotional strain my family lives with about every fight we have to embark upon and every battle we have to pick a side in to receive any hope of a crumb being thrown in our direction to help the special children we love (who anyone could have become a parent of in the great crap shoot of the genetic lottery and that my husband and I consider being big winners in incidentally and would not change for the world which is vastly different to us both wanting to change the actual world).

I would love to see education options improved for children with special needs seeing as this is a wealthy country and I was brought up to believe education was a basic right here but seems not really to be the case for kids of different learning abilities.  I would call it discrimination but the dept of education simply calls it lack of funding (well at least lack of funding for special needs... there seems to be quite a good deal of funding for improving the infrastructure and decor of schools lately).....  Here's a crazy thought from a perhaps crazy woman....  Hire more teachers aids, hire occupational therapists, hire speech therapists and hire additional school counselors in mainstream schools and instead of additional schools which are what we are constantly being told there is no money for, we can cater to children with additional needs within the mainstream system better and negate the need for building separate schools!  In the immortal words of one of my heroes, John Lennon, "you may say I'm a dreamer but I'm not the only one."  Surely?

Then again click on the link following for an example of a so called specialist class in NSW for children with Autism and it's really hard not to feel defeat that things will never improve, especially if you are the mother of a child at this school (as one of my friends is and recently fought very hard to improve her son's conditions so Bravo Tammy)! http://www.dailytelegraph.com.au/news/national/outrage-over-seven-hills-west-public-school-putting-autistic-kids-in-cage/story-e6freuzr-1225839691640

Deep breaths....  Then a big sigh.  Yep.  It's a massive job to try and change things.  Slow too.  It makes me crazy with frustration to consider how slow progress and change is to be made but no way am I throwing my hands in the air and giving up whilst I'm still able to breathe.  Slow change is better than no change so I'm up for the task and Carers NSW thinks I am too and is giving me the opportunity to raise my voice up.  Who knows how effective I'll be or how effective any of us asked to the role will be and who knows if raising our voices will make any difference but at least we are willing to give it a go.

Soooooooooooo anyway, did I mention that I'm now an official representative for carers in NSW (pending training completion next month which I am really looking forward to and yes my tongue is firmly in my cheek as I spout off the name of the role over and over again but yes I am also properly chuffed).

Yes an officially appointed representative instead of just a woman with a big mouth, a couple of committee positions, a PR & writing based freelance job to pay the bills when time allows (time, what time?), a fledgling business based on raising awareness for kids with special needs, a young family, a blog and a few facebook pages.  Why take on so much?  Easy answer.  My boys and their future.

Whilst there are surely many out there thinking the last thing they want to hear is more of me and my perhaps naive but definitely passionate views and some who are rolling their eyes because they might disagree with or disapprove of my approach or my opinions....  But!  Well in honesty, I'm proud to have been offered this opportunity and hopefully I can fulfill that really hokey ambition of making some kind of difference (however small it is or how slowly it happens).

Look out world, I am marking you for change and whether you love me or loathe me, I am not going away or shutting up any time soon.  My boys depend on this (as do I as their devoted and privileged carer).  Hope to do all my fellow desperate paddlers in our leaky old carer boat justice and please at least a few (most of all my boys) as I'm learning you simply can't please EVERYONE.