Today I Am Grateful For.......

During April 2011 I participated in an Autism Gratitude Project with 115 other ASD parents on Facebook.

Every day during Autism Awareness Month we posted something we were grateful about directly because of Autism affecting our lives as our status.

The idea was to shine a positive light on our lives of difference and to help raise awareness for the issues our families and loved ones face living with an ASD diagnosis.  There are so many reasons and occasions to feel anything but grateful on some days particularly in the thick of a very large public meltdown when many judgemental or even pitying (which I find worse) eyes are on you and/or your distraught child but as I've eased into the role of autism mummy and autism advocate I've become very aware of how much I do indeed have to be grateful for.  This was a gradual process. 

I didn't always feel grateful nor did I always embrace autism as something I wouldn't change if given the chance.  These days I accept it whole heartedly as part of my life and I love my life for the most part.  It's way too hard to imagine a different life for me that was not touched by special needs now.  I don't wish things to be different for us.  I wish the world was easier for my children.  Perhaps by raising awareness through finding gratitude, in some small way the world will be easier for them.

I do admit to being a tad skeptical at the beginning of the Gratitude Project though that I could find one thing EVERY day of the month to be grateful for because of autism.  However, as the month ticked over I found myself posting several times a day.  It became easy but wasn't at first.  It took a lot of self assessment and looking within.

Some things were tongue in cheek, some fun, some very emotional and few that were emotive in response from others.

Now that the end of the project is here, upon reflection, I think that if I hadn't been thrown onto this rollercoaster with no end (EVER), it may have never occured to me that a feeling of gratitude is not always a given and is instead sometimes project worthy to help learn how to see things differently.

The gratitude project helped many of us participating learn more about ourselves whilst also hopefully helping fellow parents to find the acceptance that takes some time to get to post diagnosis.

As it's the final day of this project and Autism Awareness Month is drawing to a close I am finishing it with an open letter to my sons so they know how truly grateful I really am that my life is exactly as it is:

Dear beautiful boys,

I am grateful for you, to you and because of you every minute of every day.

I weep for you, cheer for you, stand up for you, fight for you, love you and LIVE for you every day.

I am grateful that you are exactly the YOU that you are.

Once upon a time I could not have fathomed that I would be grateful for any difficulties you would face.  Today I am grateful for exactly that.  I still nurse a wound in my heart for you that reminds me of where we've been and that although we might have come a long way, we have further to go.  The difficulties might hurt us but we are strong.  We've only become stronger since facing them head on too so I know deep deep down inside my wounded heart that we can travel this journey together.  Our journey might be a little trickier and slower than others' journeys but we WILL get there...  Wherever THERE may be for US.

I am grateful for your voice and chatter that I was once frightened I wouldn't hear.  I am grateful for the open hearted love I was once ignorantly scared I'd never feel from you that you now so regularly bestow upon me through affection, cuddles and requests to pick you up and carry you.  I am grateful for the invitations into your games I was once terrified I would never see or participate in. 

I am grateful I experience life through your eyes and now see things I'd never have noticed if not for your eye for details I don't usually notice. 

I am grateful for the pride I am consumed with when you beat the odds and conquer your anxious moments.  I am grateful I appreciate the little things because I was once worried the little things would not exist for us.  I am grateful the big things exist for us too....  Imagine my gratitude when little things and baby steps transitioned into big things and giant leaps and bounds.

I am grateful for the people you have brought into our life.  These are the same people I so resented in the early days because of my own vanity.  I resented them because of the ugly pride I nursed and clung to even though the pride was dented.  I am now grateful for needing to reach out for help.  The help that took my outreached hands and broken heart taught me more about myself in three years than I could have learned in a lifetime if I'd never needed to reach out in the first place.  I am grateful for the community of people and friends we now think of as part of our team.  Many became part of our family.  I am grateful that because of our team, we are rarely lonely.  I am grateful we are loved, understood and cheered on by our team.  Our team keeps me propped up enough to cheer you on.  I am so grateful I get to cheer you on.

I am grateful I was limited in my own choices in order to expand yours.  Oh how grateful I am that I had no other choice than to abandon being anywhere but with you for every moment we've shared on our way to where we are.  I am grateful for every one of those moments no matter how many of them were hard, no matter how many of them I cried and no matter how many of them were filled with fear.  For every moment I may have felt trapped at first and for every moment I lamented that your opportunities may be limited as you grow up, I had many many more moments filled with the joy of you growing up before my very eyes whilst I watched with all consuming love.  I am grateful I experienced these moments of joy for they far outweighed the moments of hardship. 

I am grateful that you taught me true patience.  I can wait until the end of eternity if I am waiting for you.  I used to hurtle through life on the fast train, always wanting to get to the next step, the next place and go further....  You taught me to slow down for you.  You taught me to slow down for me.  Thank you for teaching me to enjoy the view on the way to wherever we are going.  I am so grateful.

I am grateful that I have gave you the foundation of my presence in the absence of riches or posessions.  I am grateful I got to build you bricks of love, time and kisses that make you feel better when hurt in the absence of bricks and mortar of our own.

I am grateful I have heard the divinity of your giggles and great big belly laughs more than I have heard the hell of your tears or pain.  I am grateful to have had moments where time stands still for me and I truly feel us sharing a connection I was once bereftly yearning for.  I am grateful I have laughed WITH you.  I am grateful that I understand the significance of you looking deeply into my eyes and the agonising level of trust in me you need in that moment, so hard for you to do otherwise.  I vow to you that I will never take for granted that trust you have in me. 

I am grateful that you love me......  And oh so very grateful you have told me.

I am grateful you have made me who I am. I am grateful for the opportunity to fight for you every step of the way because you helped me find my calling.  I was born to be your mother.  I was born to fight for you.  Never has there been a more true purpose in my life than to be the mother YOU need me to be.  I am the best me I can be because I want your best you to be proud of my best me.

So my babies.  My sons. My loves. My life........

I am grateful for YOU! 

I will love you forever.

Mummy.

I have a dream.... A Sunsuper Dream!

Hi Bloggers....

A little note which asks you all a favour....  Scroll down after reading my note and see why I'm asking the favour.....

Hoping you can help me out and in doing so you will also greatly help my VERY FAVOURITE charity in the whole wide world, The Autism & Aspergers Support Group Inc out.

I entered this dream for a better world on Sunsuper Dreams! You can check it out and help make it come true by voting for it here: http://bit.ly/fJcDys - The dream with the most votes at the end of the month will be awarded a $5000 grant.  It’s quick AND free to vote. After you vote, can you please also check your inbox for a verification email (might go to junk)?  If you don’t verify the vote, it won’t count.

Where will the money go?

The Autism & Aspergers Support Group Inc recently acquired centre space at The Stewart Street Centre in South Windsor which will assist Hawkesbury families seeking support for ASD related issues at all stages of their journey.

AASG is developing a social & therapy program to be run at the centre.  Local school aged children who are no longer eligible for early intervention funding will be able to apply for our program and receive access to social support & intervention.

$5000 will go towards buying equipment to assist with therapy for participants of our program and provide therapists & tutors.  The program aims to increase children's progress/success in both the academic and social areas that school requires but is so difficult for children with ASD without ongoing support.

Please get voting to improve the lives of children with Autism and don’t forget to watch the video attached to the entry.  Beautiful music... Beautiful kids.

VOTE HERE: VOTE FOR CHANTELLE

Many thanks,

Chantelle.  xo

PS:  Please feel free to not only vote but to share throughout your own networks and really give AASG a boost towards helping our gorgeous kids.  J

My Entry for Sunsuper Dreams or "My Dream" if you prefer:

When people think of autism, they think of isolation. Social isolation is a real issue for families living with autism which included mine until.... We connected with The Autism & Aspergers Support Group Inc. My dream is that all families who are members of the Autism & Aspergers Support Group Inc can enjoy improved services and connection opportunities to break through the barrier of social isolation.

My dream is that the children from those families, including mine will NOT be forgotten when current early intervention federal funding provided through the “helping children with autism package” runs out at age 7.

I dream that the families who are currently desperate with worry about what will happen when their child turns 8, 9, 10 and right through up until adulthood will have hope. I dream that hope comes in the form of specialised school aged services for the children who have come so far (again, including mine) but need further help to reach their full potential. Hope can be turned into real promise for a child who is supported at all stages of their journey. I dream that children with limited social opportunities due to ASD will have opportunities to make real connections. Connections of meaning that make our kids smile. Really smile. Connection with friends means that our beautiful kids currently struggling with the confusing world are far less likely to experience the agony of bullying and loneliness. I dream children with ASD can live free to be who they are.

I dream that people with autism and their families have the same opportunities to experience the uplifting feeling of having real friends, real connections that everyone else enjoys. I dream that all the families AASG currently supports really will see our motto of “building understanding, awareness and connections through community” come true.

VOTE FOR CHANTELLE

Celebrate Good Times C'mon!!!

So..................  How is the tiny squashy classroom going that my five year old had meltdowns during big school orientation upon approach about (see last blog post)? 

How is big school going?

Pretty awesome actually.  I LOVE being wrong.  That may come as a shock but truly, I LOVE it.  Is everything perfect?  Absolutely not, no way and it never is but is it going well?  YES YES YES!

After some initial teething problems and the odd issue cropping up here and there, I can confidently report that my little guy is doing super duper flipping brilliantly.

May I brag a little?  Oh go on then.....  ;-)

In J's class he is part of a specialist ASD class located in a host mainstream school.  The ASD kids get access to integration programs and my guy is completing all of his school work and homework beautifully (yes, I am serious.....  Kindergarteners now have homework.  Cripes).

He looks forward to school (most days) and happily skips into the gate shouting hello to his teacher and teacher's aide and usually has something he's decided they simply MUST know about IMMEDIATELY that he's bursting to tell them.

He does news each Monday, joins the mainstream for sport, P.E, music, assembly, library and playground time everyday.  He has friends in his class and he has mainstream friends from his preschool he is still connected with.  It really is the best of both worlds for now and I am pleased with my decision to approach school this way for now.  Whoop!

Amidst the big school dramas and commotion another milestone was happening quietly and without fuss.  That sums up the way most of these particular milestones are achieved......  H.  My beautiful, big brown eyed curly headed monster, aged three whole years now started preschool.

It wasn't stressful nor was it painful.  I knew he'd be ok as he is going to the preschool Jackson attended and simply could NOT be in better hands.  Team J has just transferred over to team H now and he couldn't be happier either.

I didn't shed any tears the day Hunter started preschool.  Nor did he.  He confidently walked into the class, hugged the teachers, asked when he could eat his lunch and told me, "You go now Mum, it's time you go."

I must admit the old faithful tears are threatening a little bit now as I recall that day though as I often don't get time to really celebrate or commiserate H's "stuff" in the thick of J's rather more intense transition issues.  Perhaps my tears of joy and sadness for all of H's big days will come later and more quietly than the tears of J's big days.  Perhaps it's just that because I have walked the path of all the big days already with an older child the tears are not coming from a place of as much worry and despair as I trust in my decisions a second time around.

Whatever the reason, there is no less pride, no less love and no less fun for my little H bunny who is growing up way too fast and a wee bit "naughty" (but just always gets away with it somehow...).  So charming.....  So pretty....  Out of this world pretty really and that's how he gets away with being a little cheeky.  One look at his eyes and you are gone.  They are more powerful than Jedi mind tricks.  Those big brown pools of utter beauty get you in.  I digress but it's hard not to once on the topic of those eyes.....

I reported in a previous post that all I wanted for J on his first day of preschool was that he make a friend....  Both boys have made friends and both are happy.

So the goals of making friends are well on the way.  We can start to look further afield to celebrate the "normal" goals and those that "normal" families celebrate.....  Ok then, I can report on those type of firsts too proudly:

J has independantly bought an apple juice at the school canteen and counted the right amount of money to hand over (we have the apple juice still unopened in our fridge as it's way too special to open apparently so clearly he "gets" what an achievement this is).

H delivered news today at preschool for the very first time, showing his friends his Toy Story Jessie and Bullseye toys with confidence.

Small achievements?

Not to us.

As this title says.....  Celebrate good times, C'mon!  I am humming the tune and having a little dance of joy that I really have nothing but smiles, light and love to report from our end of the world at the moment.  We are still not rich (or even comfortable really financially speaking), we are still not "normal" (and what the flip is normal anyway?) and we are still not doing anything the easy way.....

What we are though at the moment is very very happy.

Reason to celebrate in my book.

This is only a snippet of the great stuff in our world at the moment.  Stay tuned for tales of first guitar lessons, signing up for team sports, my latest ASD community based project and much more.

Isn't it wonderful to have soooo much good news to tell that I can't fit it in one post?

Whoop!

Big School - Send me an Angel (armed with tissues).

In two sleeps my firstborn will be facing the biggest day of his life so far according to the milestone markers.  J is about to start big school.

So much has gone on over the school holidays between preschool and this mysterious, scary big school place and I'm not sure any of us are truly ready for what lies ahead but the time has come.

Since leaving preschool J had had a set back with regards to behaviour and it's difficult to tell whether this is simply because of the routine disruption, services and usual appointments ceasing during the break or if it's because of his anxiety over the big school milestone looming.

To say this transition has so far been disastrous is the understatement of the century.  J was originally enrolled in a mainstream school within walking distance in our little community and it looked as things were going to go very smoothly.  Funding was promised, understanding was expressed and confidence was fostered.  Until a funding meeting went pear shaped to say the least.  I was invited to bring along members of "team J" which meant that the school invited me to bring professionals or "experts" as they are widely termed who work with J to help the school apply for and allocate appropriate funding for a teachers aide and any other requirements he would need because of his ASD diagnosis.  During that meeting, my "experts" who were there at my own considerable expense, were largely ignored by the school "side" of the table and in fact they were very rudely dismissed when elaborating on positive behaviour strategies that Jackson responds to as the school "side" brusquely pointed out the appointed class teacher had over 30 years of experience and those were standard teaching practices not worthy of mentioning in a funding meeting.  Those strategies were much better left until we had a "process" meeting.  I was just as surprised as my experts that there were even any more meetings to be had and was taken aback the many meetings each had categories for certain topics of conversation and strategy with regards to accomodating my son's right for an education..... (Getting fired up thinking about it again....).

It was also in this funding meeting that I enquired as to what sort of in service training the staff/teachers would be doing in preparation for J's different learning style as it was common knowledge that the school had only seen one other student with ASD go through the school (which I thought meant they had little to zero experience with all things ASD but was corrected by them that it meant they had a WEALTH of experience with all things ASD from their one student).  I had offered to pay for several courses and seminars with notable ASD experts for the teacher to attend so I was keen to see which ones they were going to take me up on.

Loudly and proudly I was informed that the entire staff was going on an in service training course to prepare for J's arrival and that it would NOT be any expense to me.  I was thrilled!  What course?

Safe Restraint Practices.

I thought, "WHAT THE F*CK?"  (Sorry).

I said, "I beg your pardon?"

Safe Resraint Practices.

A few deep breaths later I conceded I am fine with the staff doing that course but only if it is done in ADDITION to a course that might teach them how to TEACH my child with a superior IQ but a different learning style so perhaps there would be a greatly reduced chance they would ever need to use their Safe Restraint Practices knowledge.

It was not to be.  Many emails, a less than satisfactory orientation visit and sleepless nights over the thought of handing him over to a school that I truly believed was coming at ASD from the entirely wrong angle, I wrote them a letter explaining we had accepted a position elsewhere.

My little guy who we had worked soooooooooooooooo flaming no I'm going to just say it how I'm thinking it.....  So fucking, unbelievably, exhaustingly, fucking, (sorry again) hard to get ready for mainstream education was now going to be placed in a private ASD specific class in a religious school in preference to a mainstream school because of the safe restraint practice attitude (we are not religious, nor are we of any standing to afford the fees for the private ASD class but we took the place).

My son is not being placed in this class because he is intellectually unable to cope with mainstream material.  He is being placed in this class because we had no acceptable option to suit his needs in our opinion.  He is NOT going to school with his peers and he knows it.  The big killer for me is that bit.  For the first time J has verbalised he is different and that he doesn't like it.

I know he IS different. I don't want him to be any other way. I adore him.  It's very hard seeing him struggle with it.  I do not adore THAT.

The school we accepted this position in, is also the school where many of his friends from preschool will be attending their first day of school with their shiny new uniforms, school bags and hopefully big smiles on their faces as they wave goodbye to their no doubt teary mummies who are proudly enjoying such a lovely milestone (yes, I know the first day of school is hard for everyone regardless of special needs or not).

Those kids though (his firends from preschool) are not in J's class.  J's class is called the "autistic unit" according to the school information handout.  "Autistic unit."  It sounds wrong.  Is the unit/building itself autistic?  Is the door very rigid and the windows a bit repetitive?  Do the desks have a special interest perhaps?  Is this why the unit is autistic?  Of course not.  It's because the children inside that squashy room have autism.  The children with autism (yes I know it's just semantics but I despise the use of describing people as autistic as though that's who they are, what they are and how they are as a total being.  Autism is a part of them not their totality, I digress.......).  So anyway, the children have autism inside that squashy room that seems so so so badly set up for children with sensory difficulties with huge walls of distracting cluttered shelves full of toys and things far more interesting than the teacher for my sensory seeking guy who will have those shelves ripped down within days I predict.  Don't read that and think I have any objection to J being in a class with children with autism or am weirdly discriminatory about other children with autism.  I am not.  It's just that I've lived in a world of inclusion.....  No..... J has lived in a world of inclusion at preschool (I'm crying now and letting it all out as I type about lovely preschool that is not squashy and segregated).  It was inclusive and supportive.

That's what school SHOULD be.  Oh sure they talk the talk.  We know J will have "access" to the mainstream children at recess and lunch.  He will have "access" to the mainstream classes as time goes on and join the other children for music, sport and church (I wont even go there on the religious expansion of his learning..........  I respect all religions but subscribe to none and have no desire to so the religious element is playing a part in my overall blah about this school thing, anyhoo, like I said, will leave it there).......  So they talk the talk. 

Not sure they (school) are walking the walk.  The school handout tells me of a wonderful caring environment where we are welcome to join in and volunteer at school and be a part of the P&C etc.  I am currently feeling blah about that though (and bitter if the truth is told).  I think about that song all about sunshine and lollipops with all the talk of loveliness and happy families skipping into school each day........  BUT! The parents of the children in the "autistic unit" were not invited to school info night, our kids had seperate orientation days for all but one day and that was the one where Jackson saw his friends from preschool and asked me why he was not allowed to join them. 

That was the moment with my heart torn in a million tiny pieces from the millions of tiny pieces it was already in from the millions of other times it's broken for him that I found myself questioning the decision to accept the supported place in the ASD class over the non supported place at the school where they ignorantly thought they would need to restrain him.  I realise though my "choices" were not really choices at all.  They were total inadequate crap and probably neither are really suitable. Now I am facing the task of sending my boy who was so very popular and accepted for his quirks at preschool into a class that announces he is different and segregates him from the "norm."  (Speaking of terms I despise.  The norm?)........ 

What have I done?  Was this decision really for J or was it so I (yes, me.. not J or maybe both of us but definitely me) felt supported and babysat by the teachers who DO understand ASD through the experience of far more than one previous student.

Did I really jump at this class where I thought the sheer numbers of teacher to student ratio would make all the difference to J's future or was it because I was tired....  Was I so tired from all the fighting to get him ready for mainstream that I was too burned out to fight DURING mainstream and blaze a trail for those who come after J at the school who would surely have learned pretty quickly their restraint course was a total waste of time and money and that with a few tricks and compromises we could have worked it out in the mainstream.......?  What was my reason?  I don't know.  I'm tired now as I write this.  Tired of fighting for every crumb thrown at special needs, tired of explaining everything in minute detail with visuals, tired of crying, tired of being bloody tired.  The ASD class in theory means the fight shouldn't be as bloody.  In my mind I thought it would mean things would be easier for Jackson (and me). 

He hates it.  He hates that squashy room.  He cries and has ferocious meltdowns (to the point where I wish I had done a course in that restraint bizzo).  Every time he has gone to the school for orientation he has told me he does not want to go to big school.  It was particularly brutal the day he saw his friends but was not allowed to join in.  I'm told he will be encouraged to play with his friends at break times and not to worry.  The teachers are lovely and I know deep down J will settle in but for now he hates it and I think we both feel a bit excluded by this choice. 

The school holidays have been frought with change for him and it's making things worse.  He finished up a 20 week ABI program (autism behavioural intervention FYI centred around school readiness ironically) so the routine was changed there.  His weekly occupational therapy appointments stopped over Christmas so the routine changed there.  We went on our first family holiday post ASD diagnosis (armed with many many visuals and "behaviour" strategies) but the routine changed there.  Christmas and all it entailed set anxiety levels HIGH.  We had a very big disagreement with my inlaws and boy oh boy did THAT set anxiety levels high in general family life as well......  Both boys would have sensed the tension during that without a doubt.  All that and his clear disdain for anything big school related. 

Buying the uniform was not pleasant...  MELTDOWN.  Buying the shoes was not pleasant...... MELTDOWN.  Reading the social story I painstakingly put together complete with pictures of his friends trying to explain they will be in the playground just not in his classroom......  Not pleasant.  MELTDOWN combined with furious ripping up of the social story.  No excitement.  Just meltdowns.  Heart ripping, collossal meltdowns that make me think I have made a heart ripping, collossal mistake.

I'm not writing this to drum up encouraging comments from anyone telling me it will all be ok and that he'll skip into school with a cheerful wave and life will be great.  I'm not writing it to drum up any comments really.  Millions have gone before me and have a wealth of experience with big school transition.  Many had terrible, heart wrenching experiences and many have had great, happy, feel good experiences.  I know what's ahead.  It will be hard at first.  The meltdowns are unlikely to disappear like magic.  It will take time...... 

I'm writing this to clear my head.  To mentally prepare and make room for the fortitude I need to walk in that damn gate on Wednesday with J and be calm for him.  To be a picture of confidence and positivity.  I'm just getting it out.  I am writing this to pour out the anger toward the unfairness of limited choices, funding options and poorly set up education systems that have shown me no evidence of inclusiveness to my son yet.

I'm writing this to have something to look back on (I hope) and wonder what on earth I was worried over when J is settled, happy and telling me of his friends and lovely days at school filled with new learning andsocial experiences.

I needed to write this so I can clear it all out and have space inside to be brave for my boy.

I need a way to turn resentment into excitement.  I want so desperately for us both to be as happy and excited as when we are swinging up high high higher together and laughing at the park.  J is always the one encouraging me to go higher at the park swings....  It's like it's a metaphor for our lives.  I really think it's him who encourages me just as much as I encourage him.  We are a team but our little team needs a coach right now to help us swing higher.  I hope I have not underestimated him in order for me to feel safe.  I hope this choice of schooling sets the pace at a nice comfortale level with the room to go high high higher as he grows to love big school.  I hope so much. 

I need a guardian angel just for one day to look after us both as I kiss my beautiful boy goodbye on the first day of a big exciting milestone to be at and for me to hold it together.

Don't worry though.  I'll be fine.  I promise.  I'll smile and be brave.  Hopefully my little guy will too as he reaches higher than I would ever be as brave as him to aim for. 

Good luck to my first baby on Wednesday and throughout school life.  I am with you my J.  Mummy is by your side all the way whispering in your ear that we can go higher together.

***Post note:  I wrote this early today and was not sure if I'd post it or not......  I was worried about my raw feelings about the name of the class in the school handout (which is not the same as it appears on the class door, it is called the learning support class on the sign) and my feelings about inculsiveness going out there for all to see.....  I was worried and unsure if I should post it or just keep it for me (I do that sometimes).  Before I posted it but after I wrote it I received a message from our beloved Vicki who I wrote of in my previous post (and many others).  Vicki was J's preschool teacher's aide who gave my son his butterfly wings and helped him out of his coocoon so to speak.....  Vicki has contacted the school and arranged to be in the classroom for J's first day to help him settle in and help the teachers deal with his anxiety.  She is doing this in her own time.  There is no funding for this and no one asked her to do it.  She is doing this because she loves my boy.  My guardian angel appeared.  I thank her.  My gratitude for her help in turning that resentment into real excitement is immeasurable. This is why I decided to post it it in it's unedited and raw form in the end.

A New Beginning

Wow!  Really?  August LAST year since I last posted?  How did that happen?

I'll tell you.  STRESS!  J is off to big school in a matter of weeks and the whole house is consumed with big school nerves.  His nerves to be precise.  It's been a long road towards big school with many twists and turns and so much other "stuff" going on that although all of our therapy goals until now have been working towards big school and we've been planning the occasion for 2 and a half years now....  Well even with all that planning and work, it's snuck up on us and kicked us all hard up the bottom (will blog about it all soon).

Amidst all of the work and planning our "normal" life has gone on and we've been on our first family holiday since.... Well ever I guess.  We've had family dramas (now THAT is a whole blog on it's own too but suffice to say, any elaboration on that will only serve to drum up more drama and considering the drama surrounding us all on a daily basis I'm not that keen on more of the stuff right now....  Perhaps another time).   We've said goodbye to J's preschool teachers (although Hunter will be heading to them in a few weeks so it wasn't really goodbye just passing on the batton).  So much.  Never a dull moment.

The goodbye moment between J's teacher's aide and I is hard to think about but I really want to write about it and acknowledge the momentous impact this woman has had on not only my sons life but my own....  Our whole family in honesty.

We are on the brink of handing our firstborn over to "strangers" at big school in yet another transition process (always hard in our world) and I've got loads to say about the worries we are facing about school and J's feelings and obvious lack of coping well with the process but for now I just want to reflect for a moment and tell you about the angel who gave my baby wings.

Two years ago I was feeling terrified about sending J into the care of "strangers" at preschool.  How quickly these strangers became friends, teachers, confidants, trusted allies and bearers of strong and sturdy shoulders to allow my ever present tears to cry upon so often on one of the harder days.

One of these strangers was a woman called Vicki.  It was Vicki who was assigned to be my sons aide. 

I remember sitting in one of those early IEP (individual education plan) meetings with the cast of thousands necessary to develop the individual education plan suitable for a 3 year old with additional needs to attend preschool.  So many goals and strategies to talk about and things to discuss with regards to what were our focus areas for J's development and preschool education.  You know.....  What were our priorities for J?  Was it toileting, behaviour assistance, academics, speech work etc?

I answered a little quietly and also a little embarrassed that perhaps my biggest wish for my sons "progress" was nothing to do with self help skills, verbal skills or academics really.

"I just want him to have a friend."

As I just typed that answer I gave back then the tears automatically welled up again.  I go instantly back to the place in time where I thought friendship was almost impossible for a child with an autism diagnosis.  I go back to feeling as though my world was inside out and shattered.  I go back to feeling sad for my son and so frightened about his future.  Sure, I still worry about the long term but for anyone reading this passage now who might be having those same feelings of despair I can assure you that place gets left behind to only visit occasionally as time goes on.

During that meeting though and at that moment I felt hopeless for my son.  I cried (I always do in those meetings and quite often other times too really).....  Vicki smiled encouragingly and promised me that goal would be met.  Of course J would have a friend.

I'm not sure I believed her totally at the time but I was very grateful nobody scoffed or laughed at what many might think were skewed priorities in an IEP meeting.

I remember dropping J off on the first day and Vicki was waiting for us with her open and warm smile, ready to welcome my boy and hand me the obligatory tissues.  I got out of there quick smart clutching those tissues so as not to have the breakdown I knew was coming in front of anyone.

I remember going back the second day and Vicki had the same open and warm smile but J had a meltdown that morning of collossal proportions as I left clutching a fresh batch of tissues.  Vicki phoned me within the hour and assured me he was fine, settled, happy and because she is the amazingly intuitive and special person she is, she told me he was playing with another child happily.  She said, he was making friends.  Nothing could have made me feel more assured.  It was that precise moment I trusted her implicitly and never looked back.  I knew my boy was in the right place with the right person looking after him.  It seems impossible that anyone would love your child as much as you do but I know Vicki would come close.  What more can you ask for when you place the trust of your child in someone else's care?

Over the two years of J's preschool adventure, there were so many highlights and great moments of triumph I'll never forget.  I wrote of one here about J's Easter Hat Parade that was one which will live on in my heart eternally.  There have been times at the end of term singalongs where J has bounded out the front of his class and taken up what I think he quite honestly believes is his rightful position centre stage leading the class in a favourite song and dancing away with an abandon I've only ever seen so happily abundundant in this child I am so proud of. 

Vicki happily took on EVERY suggestion all of the numerous therapists gave us to help with whatever speed bump in our road we happened to be dealing with at any given time.

So many memories.  Some just of collecting my boy at the end of a day and hearing about how happy he was or who he played with and how far he has progressed.  Every time, every day, Vicki took the time to fill me in on the details I'd missed that day whilst he was in her care.

The encouragement Vicki gave not only my son but our whole family is indescribable.  She deserves so much more than a mere thank you for her unwavering love and dedication to helping Jackson find a friend as per his nervous and shattered mummy's request so long ago now.  Vicki is part of a team of amazing teachers who are not doing a job.  They are changing lives.  The single best decision I can take any kind of credit for in my son's progress was to send him to a preschool where the staff are committed to the families not their "jobs."

My wish for J to find a friend came true.  Vicki was the best friend he could have ever had and seeing as we had 23 children attend Jackson's recent fifth birthday party I can confidently say J has many friends.  What a gift this woman and the team of teachers around her was to our family. 

I couldn't say any of this in person to our Vicki, or any of the preschool staff actually on the last day of J's time there. I had blurry, tear filled eyes and didn't say much at all. I just handed over the gifts and cards silently, quickly gathered up J's things and left with a wave.

I cried for a long time that night though. Vicki took the time to send me a message thanking me for her present. No present would ever be enough to thank the woman who who took care of my flappy little guy who's so beautiful and delicate in many ways. Fragile but so strong too and it's with the love and help from Vicki he learned to use his strength and fly.

I hope the gift we gave Vicki comes close to what she deserves in return for her love and strength.  I found it by what I think was accident.  It was one of those serendipitous moments that I just happened to wander past a shop I've never seen before that was filled with Peruvian silver items and butterfly jewellery called Nine50 Peruvian Silver.  Something led me inside that shop on J's last day of preschool and to the counter where I found a necklace with a butterfly pendant.  The butterfly's wings were real, pressed inside glass and encased in the exquisite Peruvian silver the shop specialises in.  I spoke to the owner of the store through tears (as always) and asked about the pendant.  She explained the wings were real (no butterflies are harmed of course and they are taken from them post passing on). 

What else could I give the woman who saw the metamorphosis of my child and our family?  It was so obvious.  We gave Vicki her own butterfly wings in that pendant and we hope whenever she wears it she realises how integral she was in bringing our whole family out of a cocoon of darkness and helping us see the butterfly we love so much with his great big wings and ability to fly!

She gave us so much more than we could have ever dreamed of. 

I still feel teary that J's time with Vicki is over but how blessed we are that she will remain a part of our lives as we send H into her care with confidence and trust.

A new adventure begins!

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We are so lucky and we know it.

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

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

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

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

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

Will Vicki afford the same luxury?

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

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

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

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


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