Autism Gratitude Project 2012 Day 4

Autism Gratitude Project 2012 Day 4  


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

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.**

A Penny for my thoughts......

I heard the story of Penny this week.  Penny is the sister in law of Professor Tony Attwood. see here  Penny has lived an amazing life full of adventure, humour, competence and now independence.  She has also lived a life of torment, misunderstanding, bullying, pain and the odd moment of strife.

Penny has Autism.  I am always fascinated to learn about the lives of adults with Autism and Aspergers as I am desperate to know what made the differences in their lives between being happy or miserable.  Of course I want to know the key differences so I can continue to help my boys achieve a life of happiness for themselves.  I've talked about this before but I'll mention it again now as Penny's story rekindled a spark of pain that I thought might be dulled permanently before I listened to Professor Attwood himself tell Penny's story at the conference I attended this week about Autism and Aspergers. see here for support if Autism affects you.

The pain I am referring to is the ache in my heart I wake up with every morning that increases some times and decreases to the point of being barely noticeable anymore other times.  It's quite intense at the moment.  The ache is throbbing and causing quite a sensation on my personal scale of pain right at this moment but I have been hanging out with this ache for quite some time now and the ache and I understand one another well enough to know that it's temporary and will fade away for a while again soon.

Why does my heart ache?  Oh you know, just the usual.....  My childrens lives are pretty much guaranteed to be fraught with difficulty and misunderstanding and possibly (although according to Prof Attwood, definitely NOT possibly) bullying.  It still hurts me that they will experience hardship because people do not understand them the way I do and that some people will not see the strengths, uniqueness and joy that I celebrate.  Like I said, just the usual.

So here I am, sitting in the much anticipated Tony Attwood conference expecting to be enlightened with the answers to keep my boys safe and free from all the concerns I've already considered over and over and over again.  I received no such enlightenment.  I did realise though that I was at an advantage as a mother in that room full of people hanging on Professor Attwood's every word that perhaps not everyone else in there was.  I looked around and saw the pain in other mum's eyes as he outlined the increased risk of certain bullying, increased risk of being prey to sexual, financial and other equally repugnant predators and the certainty that our children will feel unavoidable anxiety, exclusion and difficulty.  I realised that unlike many of the other mums in the room listening with the same pain I feel in my way too soft for my own good heart....... I realised that unlike some of them, I had already considered it.  I already knew simply by instinct not by books that my kids face these challenges.  I received no answers as to how to keep them completely, utterly and definitely safe from it but I did receive enlightenment on how to help them rise above it, move through it and become independent and mostly happy adults like Prof Attwood's sister in law, Penny who now lives independently and happily.

During a two day conference on all things Autism and Aspergers presented by Professor Tony Attwood who is widely considered to be a world expert on all things Autism and Aspergers I can reveal the moment I knew my boys will be ok and the most valuable piece of information in an information heavy two days.....  When the good professor came to the end of Penny's story and I was quietly wiping my tears as I listened, transfixed by her tale of triumph he touched on the reasons he believed (as a world expert on Autism and Aspergers) that Penny's story was indeed one of triumph...........  (and I quote) "Her mother's continued support, love and unconditional belief in Penny, freedom to be herself at home and a sense of humour (shared by her whole support network)."

My quiet few tears I was already dabbing at discreetly turned to freely flowing rivers of salty tears that I had trouble stopping as the relief that I felt to realise I already had the so called keys to success was absolutely overwhelming.  Anyone who reads this blog, knows me personally or even those who have commissioned me to write the special stories of their own special kids knows my unwavering support and belief in my boys and that of all of our kids of mystery, difference and indescribable inner beauty with souls of such purity it's humbling for the rest of us.  You all already know my passion to let my boys be who they are and the celebration of their differences our house is filled with daily.  Most of you would have already gleaned my family's life is viewed and lived  with a very healthy dose of humour entwined with a drunkenness of love for these awesome individuals I am lucky enough to share my unexpected life with.

Although Penny's story stirred up that pesky ache in my never quite healed heart, Penny's story also filled the same old dodgy ticker with hope and pride in not only my boys (all three of the quirky fellas I live with which includes the hubby) but pride in myself that regardless what any of the experts say in their often conflicting advice.....  Penny's most powerful "intervention" was the love and support of her mother.  Now this is a super power I already have.  My boys just may wind up ruling the world if their success relies mostly on my love and support of them.

Thank you to Penny for allowing Professor Attwood to share her story and give this loving and supportive mother the gift of hope and confidence.  I wanted to share the moment here so that all the other mothers out there like me could feel proud of themselves today too.  I'm privileged to be living this life with the support of each and every one of those mothers and they know who they are.  The support we give each other, helps us support our kids and helps ease those aches we all carry about in our hearts on the days it hurts just a bit too much.

More soon...  I promise but for now  must get on with the most important job I have.....  unconditionally supporting and loving my boys.

What's love got to do with it?

For a change of pace I thought I might write about my relationship with my beautiful boys' father tonight.  He rarely gets a mention over in blogtown and more often than not resides in "dogtown" which is a mythical place I've created in my mind much like the proverbial doghouse many of us girls refer to when the hubby has done wrong... Or just annoyed us a bit.......  For whatever reason of the day.... ok minute.....  that we've...... ok then.... I've decided warrants a one way ticket to "dogtown."

I heard a statistic that parents of children with Autism have an 87% likelihood of divorce.  I'm way too tired tonight to trawl through the internet or any of my numerous Autism books to find exactly where that statistic came from but even if it's wrong, it's pretty close.  It's well recognised if it's not 87% it's at least a VERY high divorce rate in our families.

I decided to write about A tonight because there are days..... ok..... weeks sometimes that go by and I don't have a conversation with him.  We talk about the kids and what's for dinner and even stretch to talk about what's on TV but I'm talking about a real conversation of substance and depth about what's going on in our worlds that have become almost separate.  He works all day and I do the "kid stuff" and run the "house stuff" and stuff as much advocacy, awareness raising and ignorant arse kicking as I can into any day before scratching my constant writing itch most nights and collapsing into bed in the wee hours long after Andrew has toddled off to snore loudly until he gets up at the crack of dawn to work all day again.  That's our existence, oops, I mean life.  Anyone who is reading this who has a child with any kind of diagnosis will be nodding their head right about now because those of us in our exclusive club know how easy it is to get caught up in the world of only discussing what appointments we have to be at, what paperwork needs to be signed for whatever tiny skerrick of funding the family is trying to attain and who's turn it is to change a nappy or get up to whoever is restless in the night because someone is ALWAYS restless in the night.

If I was to be honest, I cannot remember the last time I asked the man I love, how his day was and I certainly haven't asked him if anything has inspired him or lit up his soul recently.  In fairness, he's a fellow of very few words so it's very easy for me to blame our lack of communication all on him.  I joke our kids have my desire to be social and A's skills....  Oh how VERY funny of me!

I would have to admit to being very quick to point out all of the things he does not do but I cannot remember when I last thanked him for cooking me a beautiful dinner (which he does often) or acknowledged that I know he does his best, works hard and obviously loves his family.

This is a man who I just noticed dragging a mattress down the hall so he could sleep on it instead of in our bed tonight because I complained this morning that I did not get much sleep due to his snoring (in fairness, it is a little like a freight train carrying a herd of mating cattle powering through the bedroom all night) but still, he's thought of me tonight and to allow me to get more sleep for my next round of butt kicking tomorrow, he has put himself out (without talking about it at length or analysing ourselves to death through an argument).  He just trotted down the hall with his mattress and pillow after giving me a kiss and wishing me a good night's sleep.

I mentioned that he cooks for me.  I should probably expand on this and explain that he cooked extra each night this week and set a meal aside in a take away container so I could deliver a home cooked meal to a dear friend who is staying with her seriously ill child at hospital indefinitely. see here  I mean, what a man.  I didn't ask him to do that, he just did it quietly, without fuss and told me the meals were in the freezer for when I next popped over to the hospital.

He hand mows a very very very big lawn so our kids are safe from snakes and other nasties that dwell in a rural yard and pretty much bends over backwards to provide whatever it is any of us are demanding of him on any given day.

Why am I so soppy tonight?  Oh, I don't know really.  I think the dragging of the mattress tugged at some forgotten heartstrings that are all too easily put to the back of your mind in a lifestyle well documented to be prone to divorce, stress and hardship.

I've connected with some really great women over the course of the past few months via a business course I'm doing and I realised that most of these women talk to their husbands and know what it is that their husbands like to do and one even set herself a seven day challenge to not complain or be negative at all about her partner.  See here, it's hilarious....

I'm not promising I'm setting myself such challenges here but I at least acknowledge that if there is a communication breakdown it's not just the quiet man's fault.....  Perhaps I should stop imagining fictional towns of doghouses to send him to if the poor exhausted, drained and seriously neglected guy goes to bed without taking the bloody garbage out and instead thank him for cooking me dinner pouring me a glass of wine and asking me how my day was.  Maybe I should even follow his lead occasionally and do the same for him.

It's so easy to use the Autism excuse for so many things.  I accept it can be all consuming and does place  stress on a family both emotionally and financially but geez, it seems I've forgotten I am married and that we were madly in love.  I think we still might be underneath the pile of stress we live under.  I'm not sure when it was that I woke up with a really kind and patient flatmate instead of a life partner who is clearly waiting for me to at least walk down the hall if not another aisle and acknowledge his enormous but quiet contribution to our family.

I think I'll head to bed and call the wreckers in to demolish the mythical dogtown in my head whilst I get my good night's sleep thanks to my very considerate husband.

J and H have a really wonderful father and over the next few weeks I am going in search of my long lost but really wonderful husband.  

For now though, I am heading to my quiet bed.

Night all.


**** Endnote:  A has never read my blog.  For those who do read it I'd like to tell him myself of my husband search so let's keep it our little secret for now and I'll surprise him tomorrow night with a meal, a glass of wine and an enquiry as to how his day was.  We have to start searching for our relationship somewhere and I think that's a good place.****

Bunnies, cuddles and me.

So I was recently asked why I don't blog about H (my delightful second born son) very much or tell little anecdotal stories as much about him.

The short answer would be because this blog is about Autism awareness and until recently H was still considered "typical" but then of course, he was diagnosed as being on the spectrum and then I still did not impart quite so much about him even after that.

None of this was a conscious decision but I guess I kept H all to myself because he was still my baby.  My beautiful, unassuming little man of few words (also until recently) who simply remained by my side always quiet, cuddly and in what appeared to be understanding of his role of always being second.  Second born, second to have his seat belt strapped in, second to have his bag packed, second to have his shoes put on his feet, second to have his toast served in the morning and in the end, second to get the Autism diagnosis.

One thing he has NEVER been second in though is the place in my heart where I keep my babies little loves.  I'm not sure if my boys inhabit the exact same spot in my heart but they do have equal space.

J is a whirlwind of activity, action, noise and bouncing energy and really does live his life large and loud.  He was nicknamed Hurricane J well before he received a diagnosis of any kind and it really is an apt description of his approach to life.

Then come my little H bunny.  I've always called him my cuddle bunny because he is so soft, and squishy and huggable.  If children were edible, this one would have been gobbled up many times over by everyone who has been lucky enough to get lost in the biggest, deepest pools of inky brown (almost black) eyes you have ever seen.  The same eyes that drink in his surroundings in silence and shy wonder yet sparkle when he giggles uncontrollably at his silly mummy dancing along with him to his beloved Wiggles singing "pway (play) your guitar with Muwway (that's Murray to the Wiggles fans)."

Even post diagnosis I didn't give too much more away about our journey to get to diagnosis as H remains an enigma.

He recently did a Sensory Gym http://sensorygym.com.au occupational therapy intensive (school holiday program) and after having such a concentrated round of therapy sessions focusing on his apparent sensory defensiveness and difficulty in crowds, he came out of his shell in a way I never expected.  No more shaking in the corner and hiding his head whilst clinging and cuddled into my always open arms.  I now have a literal bunny who is jumping, crashing, and bouncing all over the place!  A (hyper) boy who squeals, yells and asserts himself a LOT!

Oh no!  Where did my cuddle boy go?  Will he come back?  Where is that quiet, dependable and shy baby who seeks out my cuddles to feel safe?  Is it OK for me to feel sad that my shy baby is becoming independent?

I'm not sure if it's OK, but it is how I feel.  I know he is coming out of a shell that he no longer needs all of the time to retreat into when he feels unsafe but part of that safety shell used to be my arms.  I'm not sure my arms are ready to open out and let go as opposed to open up and draw him in but I will try.  His journey is his own and this is the beginning of him embarking on the big wide world with his own sense of security.

It's now time for this mummy to bravely stand up and cheer for his achievements.  For H a cheering moment is not so much of one that consists of learning language (he is advanced in that area and has lots of words and conversation) and nor is it a moment of cheering for developmental based milestones as he's hit them all just fine....  For H I have to learn to cheer as he becomes less dependent upon my open arms to save him from a group of children he is too terrified to approach or even enter a room of anymore than a few people.  For H I must learn to stand up and cheer when he enthusiastically greets people he was previously too frightened and anxious to acknowledge whilst hidden in my arms.  For H I must learn to cheer when he goes exploring in the park and climbs up on a swing to play without my encouragement and constant presence.  For H I must cheer when he shows signs of withdrawing from my embrace which is the total opposite of my previous experience with Autism as I was always trying to reign Hurricane J, the adventurer with no sense of danger back in.

Oh the unmitigated agony of letting go of my baby.  It is indescribable.  No one tells you all the pain this parenthood thing brings!  My heart aches to watch him letting go slowly and becoming his own little man in a world too frightening for him to be a part of before. 

HOWEVER!

My heart is also bursting with pride that he is letting go.  I am learning to unclench those arms a little bit too and feel the joy he needs me to feel when he bravely tries something new and tentatively smiles at me with those gappy teeth I love and those never ending pools of chocolate we call his eyes.

My arms will always be open for him to visit when he needs a safe place to bounce into in his new world of adventure.  Oh look... Here he comes now.  A very bouncy giggly bunny coming towards me for a quick squishy cuddle.

What bliss this thing called parenthood is too amongst the pain.

My quirky boys who live in that heart of mine fill it with so much joy, happiness, pain, uncertainty, anguish, bliss, love and pride.

What stories they give me to tell.  I will be forever grateful they are mine.

**To my H bunny:  I love you baby boy.  You have been the cuddliest of bunnies a mummy could EVER wish to have in her arms and I look forward to watching you hop out into the big world in little steps until you reach the stage where you bound through life with the confidence I know is in there.  xo