Saturday, April 30, 2011

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.

Friday, April 15, 2011

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

Thursday, February 24, 2011

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!


Tuesday, February 1, 2011

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.

Tuesday, January 4, 2011

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!