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.