Monday, March 29, 2010

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

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

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

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

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

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

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

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

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

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

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

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

I believe I visited Heaven today.

Love.


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


Saturday, March 27, 2010

Do Labels REALLY stick?

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

In my opinion, NO!

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

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

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

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

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

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

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

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

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

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

Here are the labels I would fear far more greatly than Autism:
  1. Naughty
  2. Bad 
  3. Stupid
  4. Misunderstood
  5. Sad 
  6. Bully
There are more but those should give a bit of food for thought.  Perhaps those labels are the ones that are the ones we should all fear for our kids to receive particularly if the only reason they receive them is because of our own ignorance, misunderstanding and denial......

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

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

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

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


Wednesday, March 24, 2010

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, March 21, 2010

A Penny for my thoughts......



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

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

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

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

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

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

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

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

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

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



Thursday, March 11, 2010

Survivor guilt, a new life and standing by the ones you love.



How to start?  What to write?  After the last post I am stuck for words and almost feel like anything I write would be so banal and pointless in light of the pain my friends are still in after the loss of Luke that anything I write feels empty.

Nothing I write will bring him back and nothing I write will ease their pain and nothing I write will improve the situation for Luke’s parents or any of us with children on the Autism Spectrum who live in fear that no matter what we do, we cannot keep our children safe.  So what do I write? 

Well today I wrote a special story for another little boy and that helped me get back into the swing of raising awareness for our kids.  Maybe more awareness will keep our children safe in some ways.  I don’t really know.  It felt great for me but I could not shake the feeling it will never be enough....

What I do know is that whilst the rest of us are finding ourselves laughing at a joke again occasionally or getting on with our everyday tasks like dropping the kids at school or preschool, chatting on the phone with a friend.  Some of us are finding the next fight we have to fight for our kids and one of my friends is in the thick of doing just that today with the department of education who have not acted quickly enough to help her or her son who has an inadequate play area for his breaks at school.  Actually inadequate is not nearly a good enough description of this disgusting situation but I digress.  See here for more on that situation...

However, today I feel a bit empty.  Not as passionate as I usually am about all things ASD related.
Is this survivor guilt?  There I said it.  There is a guilt that I‘m feeling that my kids are fine.  They are alive and well and as safe as I can make them in my 24/7 fight against the danger they may not have the “appropriate” development to sense naturally.  I also feel grateful my kids are fine.  That feels a bit guilty.

My friend is picking out her dress for tomorrow’s funeral and I laughed at my kids today numerous times.  I am watching them eat their dinner and I even got a bit annoyed today when they challenged me about a minor power struggle involving a trampoline and time to come inside to wash their hands and get ready for the aforementioned dinner......

I caught myself in my frustrated temptation to yell and lose my patience and I felt like I could never yell at them again.  What if something happened to them and I’d yelled at them over a stupid trampoline?
At what stage is ok for everyone to resume their lives?  It seems offensive to me on the eve of this beautiful child’s memorial to even think about yelling about a trampoline but I’m not sure when it becomes ok to go on and pick up your life.  My friend is still heartbroken.  Everyone is still heartbroken.  We all have our chance to mourn this heartbreak tomorrow but for some of us, we get to go home with closure.

For Fiona and Tom and Luke’s siblings...... Well what is closure for them?  They live in their self proclaimed  and real life nightmare for as long as it takes.  I urge those who think the grief stops and the support ends after the funeral to think about Tom and Fiona who will be living this for many many many days, weeks, months and years to come.  Who will replay the events over and over.  I know it’s hard to put yourself in that place and so hard to go there..... BUT!  Every parent of a child with Autism or any special need that means your child has no sense of danger has put themselves here.  We have all been there in our minds and we don’t like it. 

Funerals are not the end.  I think maybe the funeral is just the beginning.  The beginning of the new life for those left behind.  The beginning of a life for my friend that means no early mornings to organise schools, buses, HUGE lunchboxes full of gluten free food just especially picked out for Lukey with his big appetite, no organising of therapy appointments for Lukey after school, no buses to pick him up from school, no thinking about locking every cupboard, door and window in the house, no respite worker for the week, no intense caring role and a massive shift in her reality that has completely changed the goal posts of her life.
Will she EVER go on a holiday and not feel guilty for enjoying it?  Will she ever feel joy at her surviving children’s achievements and smile again?  Will this woman ever be able to walk in her front door, pour herself a coffee or maybe even a red wine and NOT feel anguish, sadness and devastation? 

Oh how I hope so.  I really really do.  This woman is a woman of such abundant life, fun and energy it seems criminal she will be anything but her old self one day soon.

It will take time.  Perhaps some will not have the stamina to endure her pain alongside her and some will drop off at her new beginning or even her middle of her new life without Luke.
I promise, my friend, that I will endure it.  I will embrace it and I am not the only one.  I have been lucky enough to meet her other friends from other worlds this week in a week of sorrow and I can already see the ones who will stand with us to help her stand up on her own and take a step.  A step into that new life.  The new beginning.  A life without Luke seems so unfair.  But a life without Luke that honours Luke seems so fitting.

We love you Fiona.  We stand by you and Tom. 

Tonight, we think of you, we send strength to you and we will all go to bed dreaming of you smiling one day again. 

Thank you for your gift of strength, faith and most of all Luke. 

Love, Chantelle. xoxo

Friday, March 5, 2010

Broken hearts and beautiful boys. RIP Luke Selwyn.


The hardest post I have ever done.  It's definitely this one.  Whilst everyone else is sitting down to dinner tonight, getting their kids ready for bed or just watching the news, my friend is grieving a loss too great to ever imagine.  Her world has stopped and her heart has broken as has mine and anyone else who knew the special little boy we are all mourning with heavy hearts tonight.

Nearly two years ago, I walked into an early intervention playgroup with the suspicion that my own child had Autism and I can tell you, the last place I wanted to be was in the entry way of that room that held that playgroup.

However.....  the first person I met that day was a lady called Fiona.  Her son was Luke and Luke was on the Autism Spectrum too.  I sat down next to this woman and I cried.  I howled in a way that rivaled any Hollywood Academy award winning actress receiving an Oscar.  I was broken, devastated and absolutely bereft that my family was facing this thing called Autism.

This incredibly open and incredibly down to earth woman offered a non judgmental shoulder and ear and then made me laugh.  Can I take this opportunity to say that not many people on the planet could have made me laugh in that moment but Fiona did.  You know, I cannot even remember the exact comment but I can remember the feeling and I vowed from that moment that I would never forget the time this incredible woman made me laugh in a moment that I would really have expected to be sobbing.

So I was lucky enough to make friends with Fiona, Tom and all of Luke's family including Jess and Jared his beloved sister and brother.  My son, J had a bond with Luke's brother, Jared that included cars, fights, cars, bites, cars and being incredibly bad influences on each other but they did have a bond and Fiona and I laughed over many things including the cars, fights, bites and more bloody cars.....

Around the time I decided to start writing special stories for special kids I asked Fiona if I could write a story for Luke as he was starting school soon so I figured his teachers might need some help understanding him and I needed the practice.  I thought writing about kids I knew would be a great start to help me write for others.

Fiona agreed and I wrote Luke's Story.  Luke was the first little soul I wrote a special story for aside from my own son, J.

I always knew I'd hold a special spot in my heart for Luke.  My first real My Special Story. Fiona's was my first real testimonial that my stories might be helpful for special kids.

This morning I awoke to the most horrific news I could have ever heard.  I received a text message asking me if I knew the little boy who drowned in my local area the night before.  See here. I was groggy and still half asleep.  What boy? What are they talking about?  I was very confused and wondered what was going on....

My beautiful sister phoned me and delivered terrible terrible news.  She told me my friend had lost her boy.  She told me Luke Selwyn had wandered off late yesterday afternoon and after a massive police search had been found drowned in the dam of a nearby property over 7 hours later.

To say I was distraught does not come close to describing the feeling in my gut, my brain and my heart.  I howled like the day I sat near Fiona and poured out the grief that my own boy was facing a diagnosis of this mysterious Autism.......  I sat today and sobbed.  I sobbed for my friend.  My eyes are barely open as I type from the tears I have shed today for this beautiful soul I was privelleged enough to know and love.

My own son J who has Autism showed real and genuine concern for my tears and even wiped them as they streamed down my face today.  Both of my boys, knew in their hearts Mummy was very very sad.  I am sure they do not understand the actual events but they definitely understood their mother was nursing a broken heart on behalf of her friend who's heart must surely be in a million tiny pieces and who's pain is unimaginable and makes my tears flow freely again now.

Luke loved nature, he loved his family and he loved his stick collection.  He even had a special box for his treasured sticks. Luke loved animals including his dogs Ben and Bonnie (both heroes who tried to save Luke from the dam).  He loved big squishy, tight hugs, wrestling with Ben the labrador, big jumps on his trampoline and would gently take you by the hand to find a dvd he wanted to watch if you visited the family home.

Luke had started to talk and had a few words.  He said "book" one morning out of the blue and gave everyone who knew him a reason to do a cartwheel of joy for this amazing achievement that he said some words! 

Anyone who has met a child with Autism knows how complicated they are and that with all the good, with all the wisdom they hold in their complex natures and all of the joy they give they also hold mystery, difficulty and social complications but today, I would like only to celebrate the joy of Luke.  The joy of what he brought to this world and the friendship he fostered between his mum and me.

To Fiona and Tom, my heart will be forever changed, broken, filled up and joyous that I knew your boy.

To everyone else, I ask you to think about this deliciously pure soul we lost and whatever your beliefs are today please remember that this little boy is an angel forever more who is loved and missed by all of us.

RIP Luke Selwyn.




 



 



 






Thursday, March 4, 2010

What's love got to do with it?


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Night all.


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