I should have called him calvin…

adventures with the autism spectrum

the third rule of autism club

Find your place

It isn’t easy to navigate the autism journey.  It isn’t easy navigating it for my child, his brother or for myself.

Autism isolates.  Some of this isolation is self-imposed – often for reasons of self-preservation.   It was really hard to push a trolley around a supermarket as quickly as possible, to get the much-needed groceries while my older son, then 6, tried to keep up, and help, while my younger son, then 4, sat  in the trolley and screamed.  And screamed.  And screamed.  This kind of experience stopped me going out, from doing anything that wasn’t vital.  Having someone over to our house at that time was near impossible.

I felt like autism had put up an invisible wall between us and the rest of the world.  And with the kind of experiences I just described, it is pretty easy to see why staying home was  safer.  Less stressful.

Very soon after my son’s diagnosis, I attended some parent information groups and sessions.  I met other local autism parents.  But I think we were all pretty overwhelmed – recently diagnosed children, information overload, exhaustion (sleep? not many of us, including our children, were having that magical experience) all contributed towards us keeping our distance.  My fears about my son’s aggression compounded the reasons to stay home.

Alone.

Lonely.

I chose to seek a community online.  It started with reading blogs.  Mostly, they were from other autism parents.  I would click new blog links from each blog I visited.  I was so relieved to find other people sharing their stories, I felt less alone.  I decided to join in.

I found some beautiful people through blogging. I have even met some in real life.  I was graciously, bravely even, invited to stay in one new friend’s home.   I am so grateful to have met these people.  They are inspirational, generous, warm-hearted and supportive.

 

Our autism journey officially began in December of 2007 (even though we had been living with it from when my son was born in 2004).  Finding a place to connect, share and be heard takes time and patience.  It takes being open to trying, though.  For me, being tentative about connecting has been an important part of the process of finding a place.  I needed some time to figure out what kind of people I wanted to connect with.  It also depends on what ways you like to connect.

 

I think the most important factor for finding your place is being able to answer yes to the following questions:

Do you feel safe?

Do  you feel included?

Do you feel respected?

Do you feel supported?

Do you feel you can be yourself?

 

Finding the people that make you feel this way can be very challenging.   It can be surprising where some connections can come from.  It might even be a virtual place or group, made up of people you may never meet in real life.  They could touch your life in very unique and profound ways, and enrich your life beyond imagining.

 

Keep looking, keep connecting in whatever way works for you.

 

You can find your place.

 

calvin-and-hobbes-dancing

Oxygen Mask Project – courage and faith

It takes courage and faith to put on the oxygen mask.

Courage to choose myself first.

And faith that it is OK to do so, OK to choose me, and that it is OK to live life for myself, too.

Some wonderful writers have already shared the impetus behind making the change – the awesome Alysia has taken her inspiration to a higher level – by starting a project to share, encourage and support other parents who are feeling the same ways about life (often, but not exclusively, with autism).

How lost a person can feel.

I felt very lost for quite a while.  In the later months of 2007, I dived into everything about autism.  I submerged myself, I became what my son needed and continues to need – an advocate, protector, teacher, therapist as well as mum.  I had to be informed, I had to learn, I had to understand what the best choices for him were.

That is where the courage and faith comes in.  I had to be brave to step up – yes, it was automatic but, damn, it took courage, because I felt like I was not enough – not patient enough, not strong enough,  to take it all on.

At the time of diagnosis, just over 4 and a half years ago, I felt like I was drowning in overload.  It seemed too much, too scary, too unknown, too big a mountain to climb – that I didn’t have what it took to be what my son needed.  But I did it anyway – because of love, because I just had to.  Regardless of fear and self doubt, I had to.

Looking back, how I did that was interesting.

With hindsight I know exactly what happened.

In the moment of hearing the words ‘your son has autism’, the wave of grief crashed into me, I reeled and tried to hold on to what I knew – and it seemed like suddenly I didn’t know a thing – except that I loved my son with every fibre of my being and that I would fix him.  I shoved everything I had imagined for myself and my family aside – the expectation of return to work, of adventures, of travel, all the idealised imaginings of family – and put my son first – above everyone.  I needed to do that for him.  The compassion that came with his diagnosis was in the truest meaning of the word awesome.  I felt a physical shift in my heart, the compassion for my son multiplied to what felt like infinity.  It was glorious and a little scary.  What wouldn’t I do for him?

That is a very interesting question.  At first, I did everything.  I turned myself inside out.  To the point where I felt like one of his limbs.   It seemed that he needed me for everything.  Our connection and co-dependence was powerful.  It dominated every aspect of our family life.  I became a unit with my son.  It was a very unhealthy existence for us both.

Now, I am working with him on his independence.  Just the other day, I watched as he went to the fridge and got himself a glass of orange juice.  He even remembered to put the lid back on it, and put it back in the fridge after he poured his glass.  Simple yet important. And a little bit magical, to me.  I am now in awe of him in a totally different way.

In the process of doing everything I could think of for my son, of turning myself inside out, of putting my needs constantly behind his, I got lost.

This seems to be a theme that resonates throughout many blog posts I have read recently.  I felt as though I had lost my identity, my sense of self.  I felt that I had lost out, too, on a truckload of ‘might -have- beens’; what my life, my family’s life might be like without autism?

Today, I don’t consider myself lost at all.  I have actively spent the last 12 months working towards many things, including finding myself.  For me, last year was the beginning of my own Oxygen Mask Project.

I consider it a lifelong project.  The kind of person I am, the personality I have, means I am going to have to actively do this work for myself forever.

I took things one step at a time.  I sought the help I needed, and I continue to seek it.  I went after and got two casual jobs.  I love them.  They enrich me and bring the kind of engagement I didn’t even know was missing from my life until I started them.  It is tricky juggling everything. But it is worth it.

I have set my personal compass to my own path, not my son’s.

He needs me, perhaps he always will.  But his own developmental story tells me he is going to be OK in the ways that matter most.

I have also learned so much from autism.  I have a different life than I anticipated, certainly, but I also have many blessings – knowledge, experiences and above all, awesome people in my life because of autism.  I don’t think autism is a blessing, please don’t misunderstand me.  I have learned to work with autism, rather than against it.

By looking after myself on every level – mentally, physically, emotionally and spiritually, I can be around for a long, long time.  The biggest realisation I had last year was that this blog is not the best place for my journey.    That is why I have decided to begin a second blog, it is called So Far.  I will continue this blog, especially now that I have a clearer idea of the kinds of things I want to write about for myself, and for our continuing adventures with autism.

So, the story behind my Oxygen Mask Moment is quite involved.   I am going to share it as honestly as I feel comfortable with over at my other blog.  If you are a fellow traveller on the Oxygen Mask Project, I hope you can join me there.

“Be glad of life because it gives you a chance to love and to work and to play and to look up at the stars.”

Henry Van Dyke

Lincoln Harrison photography http://hakka.500px.com/startrails/#/0

the work of the journey/awakenings

I question so much.

 

It seems I often come back to one question: What can I learn?

 

I ask this of pretty much everything now.  I ask it of the challenges, the mistakes, the joyous events, the inspiration.

 

I have come to understand how much I enjoy learning.  The process of inspiration, of question, then of discovery.  It is quite a thrill to me.  Even when it stems from something that started out as a negative in my life.

 

I learn from many places, people and experiences.  I believe we are all teachers, especially our children.  Lately, I am coming to appreciate how much I have learned about myself and from myself – my journey and the intersection of my path with others’.  I believe we all have inner wisdom.  I know that I need to be quiet in order to hear that wisdom, even just a whisper of that wisdom.

 

I am slowly learning to act preventively, proactively and protectively for myself.  I have dived into the waters of motherhood, shouldered the mantle of expectation and always, ALWAYS done these fundamental things for my children.  I have learned I can do this for myself without sacrificing what I give to my children.  I am still figuring out the ‘how’ of this lesson.

 

So, my double vision persists.  It is minor.  It is entirely manageable.  I am coexisting with it peaceably.  For now.  What happened last May – whatever went on in my brain – has taught me that my health and what I need is important.

 

I continue to work on stillness – of body and mind, and so I am choosing only to post here when I have a very clear idea of what I need to say.  I am borrowing  from the inspirational, brilliant, awesome Alysia, in using a song quote for this post.

 

“I’m not the girl I was

But what have I become?

I’m not so willing any more to bend.

Still pleasing and conceding, 

I’m not going to lose myself again.”

 – ‘Awakenings by Sarah McLachlan

back from the wilderness

I’ve been very absent here.  But there are some good reasons.  I do have a lot to say but I have been struggling to make or find the time to say it.  I have been reading my blogging friends’ blogs, but not doing a very good job of leaving comments.  Sorry about that.

I have managed to shift myself around to say ‘enough, woman, just sit down and write’, so I am .  I am at my table, with pen in hand.

I guess the main reason for me stopping to write now is that lately, I haven’t.  I have hardly stopped moving for the last few months.  And it has taken a toll.

I am actually reasonably skilled at looking after myself.  When I am well.  When I say well, I actually mean mentally well.  I f you know this blog at all ,then you know I have experience with anxiety and depression.  And lots of experience in getting well from these things.

The events of the last few months have kind of unravelled me a little.  I stopped looking after myself and let many things slide.

Because I have a history and a family history of depression and anxiety, I have learned (often the hard way, I can be stubborn) to look after myself.  To do the little things that count, the things that reinforce ‘me’ as an individual with an identity that is separate from ‘mum’, ‘wife’ and ‘parent’.  To look after the parts that are just about me.

I was doing OK with the juggling of home life, school demands, including part time home schooling.  I was anticipating the arrival of my sister’s baby – looking forward to helping and hanging out with here most days as she got used to the whole motherhood gig.  When the birth of her son turned into what can only be called a nightmare, everything changed.  For all of us.  Life changing ways.

I wanted to, and needed to, step up and put her fist.  She is part of me.  She is part of who I am.  And she needed me like never before.

I gladly threw all of me into helping.  I am so glad I can, that I could, that I did and still do.  We are closer than ever, she can depend on me.  She knows how loved and supported she is.  She is still finding her way today, and she is so brave, pure, brilliant.  She makes me proud beyond words, to be able to help hold her up, or just hold her matters more than anything in the world to me.  This is a tough fight for her, but she keeps stepping up.  She is incredible.  So incredible.  Some days squash her a bit, but she continues to journey, find her way, feel her way through this.  She is honest, she is stronger than she ever imagined, she is pushing back when she needs to, determined.  I admire her so much.

It is very hard to admit when things in life are ‘too much’.  I am a veteran with this familiar path, the guilt, the fear, the shame.  It is very hard to stop, when I  am the type of person who wants to show how brave, strong, resilient I am.  It is the ability to say ‘enough, stop, rest’ that makes a person strong and resilient.

Just over a year ago, my brain found a way of saying very loudly to me ‘stop’.  I had a hemiplegic migraine that has left me with what is now mild double vision.  Just on 2 months ago, the neuro-ophthalmologist I had been referred to assessed my situation and concluded that my brain was taking an unexpectedly long time to heal from the ‘complicated migraine’.  He said that because of the high levels of stress in my life, my brain chemistry is not the right environment for my brain to completely heal and recover from the damage caused by the migraine.  To explain, my occipital lobe had the most activity in it during the migraine, as I had loss of vision, visual auras that were sudden and intense.  This was so much activity that it caused damage, so the area that processes vision is affected.  So I see double with both eyes, even if one is closed, I still see double in the eye that is open.  And yes, it is annoying.  Other areas of my brain were affected, including mobility, balance, speech.  But they are all fine now.

When I stop and think about it properly – I had a migraine serious and complicated enough to temporarily damage my brain – it is pretty alarming.  The most likely cause of this was stress.  It certainly made me stop – I had trouble walking for about 2 weeks because of the balance problem.  The need to stop was forced on me.  I took the hint then.

The neuro-ophthalmologist said if I want to try it, low dose antidepressants could help lower the stress chemicals in my brain, possibly giving my brain the right environment to heal finally.

I said I would think about it.

The idea of going back on antidepressants – even for this reason – was, well, depressing.

As my sister began her own journey into motherhood, healing and recovery, I helped as much as I could.  A few weeks ago, I started to notice signs in myself.  My signs include drastically disturbed sleep, difficulty concentrating, bad memory, constant headaches and tummy complaints.  I frequently felt like I wanted to cry – for no good reason – but knew that if I did, I might take a very long time to stop.  So I didn’t.

 

When I finally took notice of all of this, I stopped.  I said to myself ‘you first”.  It was time to call my doctor, who has been my doctor since I was 16, and talk things over.  She agreed with me – my brain could do with the ‘experiment’ of seeing if the neuro-ophthalmologist’s idea would help, and I needed to be pro-active in reducing and managing my symptoms of stress, anxiety and early signs of depression.

I have now been on antidepressants for a week.  My brain seems to really like them.  I feel much calmer, and more like myself than I have genuinely felt for some time.

And the best part of all – my vision has improved already.  I can safely say it isn’t toally better – YET.  I really feel like this is working.

And the fact that  I have sat as long as I have to hand write this post is another sign that I am back to myself much more.  While my two sick boys flump on the sofa under blankets watching ‘Up’, I have taken this time to return to blogging.

The words ‘manage your stress’ have always been laughable to me.  But I am figuring out better ways this time around.

And that can only be a good thing.

Thanks for reading to the end of a very long, personal post.  More on the escapades of Perky and Captain Nintendo, their dad and I soon.

 

 

“Your Life Is Your Message – through your attitudes, beliefs, thoughts, words and actions, through everything that drives your choices and decisions, you write and reinforce your ‘message’ on a daily basis.” – Stephanie Dowrick, page 25, Choosing Happiness.

the second rule of autism club

I decided that as April – Autism Awareness Month in case you might have forgotten – draws to a close, that it was time to pull another ‘autism club’ rule together, as it has been a whole year since I wrote the first rule.   I procrastinated over what would be the best choice for the second rule.  As I scrolled through my random thoughts in the drafts folder, this one jumped out.  And so, after some tweaking, I think it is ready to be shared here, on my blog, where it belongs.

The second rule of autism club.

Don’t forget to look back.

When you look back, you will see how far you’ve come, because if you only look forward, all you will ever see is half the picture.

One of the pitfalls of living with autism Every.  Single. Day. is that it is easy to miss the progress until it beats me over the head.  I so often get caught up in the worry, the planning, the preparation, the attempts at clairvoyance* to predict as much as humanly possible so we are as ready as we can be.

Then, something will happen, it might be small, it could be massive to remind me just how far my son (and the rest of us) has come in this journey.

Often it is the little things that mean the most.  The little looks when he softly holds my hand and smiles his sweet, loving smile as we say good morning, for example.  The connection we have now is golden.  Because when I look back at the 2 year old who used to (fairly) gently pat my face with his hand to get my attention as he sat on my lap, I can really appreciate how much has changed for him.  He understands his place in the world we have made for ourselves, he appreciates and seeks loving contact, which still has to be on his terms; I love that I can ask for a hug and it is nearly always given with generous abandon.

I can get caught up anticipating the future: schooling, friends, puberty (sticks fingers in ears and sings loudly ‘la la la’) driving a car, getting a job….. but it is so much sweeter to see the here and now, in the context of the first 4 years of Perky’s life, in particular.  This was a time when we were fairly isolated, confused, bewildered, exhausted (mostly from the 2-12 night time wakings he would have), struggling to develop communication and social skills, I would sometimes despair that it would always be this hard.

The truth is that what was once hard has become easier for us – sometimes just plain easy, more often it is simply better than it has been in the past.  The tricky part is that other concerns step in to fill the place of previous worries.  This is the nature of being a parent, regardless of the situation.  There will always be something to worry about and try to prepare for.

I am working on the skills of reflection, making sure I respect and celebrate the progress so far.

I hope you make the time to do this for you and your family, too, because something, and it may be tiny in your eyes, will stand out as a symbol of all you are working on and towards.

The efforts of everyone do pay off.

Honour the process and the turning points, whatever form they take.  They are what life is made of.

*[For the record, that is a serious consumption of energy, but I refuse to stop now, because sometimes it actually works! I do think this style of thinking might come under the category of ‘it feels better when you STOP banging you head against a brick wall’, which makes it yet another thing for me to work on, sometime...]

time for reflection

I have so much to be thankful for.

This post is dedicated to two people.

Firstly, to my twin sister, who welcomed her first baby on the 15th April.  It was miraculous and the most special blessing to be there with her as she gave birth.  He is the most precious angel of a baby.  My darling sister became gravely ill very soon after the birth, it turns out with an infection and this caused live threatening bleeding.  The doctors worked hard, and saved both her and her uterus.  All I will say is that when the world tilts, and you stand on the edge of a most terrifying abyss, perspective gives you a very sharp slap.  Nothing is more precious than those you love.  Nothing.  As my sister said yesterday , “Carpe diem”.

The other person this post is dedicated to is Jen of The King and Eye whose son, HRH has been very unwell.  You are in my heart.

Beannacht

(“Blessing”)

On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.

And when your eyes
freeze behind
the grey window
and the ghost of loss
gets in to you,
may a flock of colours,
indigo, red, green,
and azure blue
come to awaken in you
a meadow of delight.

When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.

May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.

~ John O’Donohue ~

April

April is Autism Awareness Month. Most of you know that.  And like many people who live with autism every day, I lean towards the view that every day is autism awareness day for us.  It is very hard to forget about.  It’s there in the little things as well as the big moments – from the little hand flicks and flapping and jiggly walks to the meltdowns over not being first to brush your teeth.

April is also the month that Perky celebrates his birthday.  So, as of last week, he is now 7 years old. Naturally, the main theme of birthday presents was Lego.  The Husbeend kindly spent a total of 5 hours constructing this:

 

Y

I tried to pay my youngest brother to build it. He is too smart to say yes!

you can see why it took 5 hours to build. That's love!

There was also a birthday party, which went spectacularly well.  Autism didn’t really show up for the party.  There was face painting (Perky ended up choosing to be The Penguin from Batman), balloon animals and balloon swords (source of much glee and hilarity from several boys) crafty fun (glitter glue is a big hit with girls) and even some origami Yoda finger puppets!  (Thanks to Alysia of Try Defying Gravity for telling us about this!)  Once one of the boys added a pipe cleaner for a lightsaber, they were complete!

I am cautiously including a picture of Perky to show his Penguin facepaint, plus he is well hidden by his balloon heart to be completely recognisable!

how cute are the googly eyes?! These are very easy to make.

April is also the month that The Autism Experience book was released.  I have my copy, and I have almost finished reading it.  Here is a link to the publisher to read more about the book.  This book is extra special for me as I have had the privilege of meeting a few of the contributors.  Seeing their names in print gave me such a thrill, I can only imagine how proud they all are of their words.  Thank you, especially, Valerie, for ensuring this book came to be.  Thank you for inspiring so many and encouraging people to put into words their experiences, wisdom, hope and spirit.  I think this book, as you can tell, is awesome.  Yes, sure I am biased.  It really, really is awesome.

As I started to read, I was inspired to write about autism and what it has brought to my life.  The good the bad and the ugly.  So in honour of April – Autism Awareness, Perky’s birthday and all, this is just some of what I think about how autism has impacted my life.

I thought I was patient.  Before Autism.

I have since learned what real patience is.

Autism has taught me the depths of my love, the depths of my compassion, the depths of my passion and just how patient I can be.  And boy, I can be really, really patient.

Autism has enriched my life.  Autism has changed my course.   Autism has rocked us and shifted the very ground we thought we were walking on.  Autism has helped me see the world differently.

Autism impacts every decision we make, it has forced a whole new chapter of learning.  Autism breaks my heart and reminds me how hard, cruel and overwhelming the world can be.

Autism has brought me to my knees, shaken my ideas about the world, challenged my concepts of faith and humanity.  Autism has brought me pain, fear, despair, grief, humility, and loneliness.

Autism has brought me joy, love, friendship, awe, and the ability to recognise and celebrate what seems inconsequential but is in fact, monumental.  Such as hearing ‘I love you, Mummy’.  And being able to use a toilet.  And tasting a new food.  And then (some time later) eating that food.  And then eating that food more than once.  And brushing teeth unassisted.  And reading.  And writing.  And asking ‘why?’ And sleeping through the night.

Autism has changed how I parent and it has made me feisty.  I am still figuring out when and where to let the ‘feisty’ out.

Most of all, autism has brought me friends, some of whom I have not met in real life, who understand and care.  Autism brought me here, to blogging, and this is where I have found my voice, trying to make some sense of the life we now live.

“Teach this triple truth to all:

A generous heart, kind speech, and a life of service and compassion are the things which renew humanity.”

– Buddah.

 

Keep Calm And Carry On

We have this poster on our dining room wall.

I haven’t made the time to blog lately.  I have been focussing on so many other things.  I felt like I didn’t have much to say that would be interesting enough to read.  I follow quite a few blogs, and I love reading them, sometimes leaving my own comments, and I get an awful lot out of this process.  I feel part of a community when doing this.  I have been constantly inspired by so many of my ‘bloggy’ friends, whose writing is so satisfying to read, I often feel like I don’t need to blog.

Life had been going rather smoothly.  Perky has been thriving in his part-time school, part-time home school routine.  He may have even gained a little more weight!  He still struggles significantly with social interactions, and right now, he has an obsession with being ‘first’ for, well, everything – from brushing his teeth, to walking down the front steps, to getting his seat belt on, to lining up at school.  Not always, but it is pretty close.  We are working on it.  Some days it isn’t on his radar, others it is all he wants.

Captain Nintendo is doing very well, he has been working hard in school, and getting recognition and awards for his efforts and results.  He has even shown a huge improvement in his organisational skills, he now brings most of his belongings home every day without reminders.  I can’t recall the last time he left his lunch bag at school.

Both Perky and The Captain have gotten awards for work this week.  They have a lot to be proud of.  Perky has moved up to Benchmark 11 in his readers (he made the leap from level 8 this week) and so he is well on track to be at level 15 (the reading goal for this year in his ILP).

Perky had a bad fall at school just over two weeks ago.  He was running with his class towards the grassed play area and tripped over a friend’s foot and went sprawling knee and cheek first across the concrete.  He lost an alarming amount of skin from his knee and face.  He had a day at home and was heavily plastered with band aids, and so was rather dramatic looking upon his return.  He is almost completely healed (the knee still has a teensy scab) and you won’t be surprised it hasn’t stopped him running everywhere.

At the end of January I was contacted by an old colleague to suggest I apply for one of the casual roles they would be advertising shortly.  I still have double vision, but I thought, it has been going well, maybe by the time this job eventuated, if I was successful, I would be driving again.  I also thought it would be a very positive move to give myself the opportunity to return to a few hours of work a week.  (Adults to converse with! Doing something I had been very good at and passionate about the first time I did it! Extra income!)  So I applied.  It took a while until interviews happened, but I got one in early March.  By that time, I had spoken to my GP about my vision and told her that in the mornings, my double vision was so close to normal, I felt I could drive.  So she referred me back to the neurologist for further assessment and perhaps to be medically cleared to drive.  I decided to start driving short trips.  I didn’t have a problem.  I found out that I would not get to see the neurologist until July.  I decided that was too long to wait without proper approval to drive so I went on his cancellation list.  I ended up seeing him on Friday.  He delivered the news that I should not be driving at all.  And to stop driving.  (I had gotten the Husbeend to drive me to the appointment, because parking at the hospital is insane) The neurologist is referring me to one of his colleagues who is a specialist in neuro-ophthalmology.  The news about my vision is my eyes are in excellent health, but it seems my brain has not healed, yet.  And there is an outside possibility my vision may never recover to what it was.  It has been nearly 11 months since the hemiplegic migraine that caused the double vision.  All the other symptoms resolved many, many months ago.  The double vision has slowly improved from a very disorienting serious doubling to a slight ‘shadow effect’ double.

The possibility of not being able to drive, perhaps never again, is an awful prospect.  I was beside myself.  A few hours later, I got a call to offer me one of the casual jobs.  I held back tears as I explained I was not medically cleared to drive and so could not take the role.

But there is good news.  We are going to find a way to work around me not driving in the short-term.  I am going to get an assessment to find out if I fit into the vague category of ‘minor’ double vision, which would mean I could have a conditional license and keep driving.

The place that offered me the job said to let them know when I am able to drive again, as they will keep me on their records for 12 months.  At least they wanted me.

At least I can depend upon Husbeend to cheer me up.  He asked me if I still loved ‘both’ of him.  I assured him I love both of him equally, and never show any preference for either version of him I can see.

As a healthy distraction, my sister, who is due to have her first baby in just over 2 weeks, has helped me create a ‘zombie feltie’ bunny.  Perky liked it so much he smuggled it into his wardrobe.  We have since made a sleeping spot for it on his bookshelf next to his bed.  I think some more ‘zombie feltie’ making will help me to Keep Calm And Carry On.

Zombie Bunnies are notorious gamers.

Zombie Bunny is about 10 cms high, and has exposed guts, so he won't last long during the zombie apocalypse

 

“Courage can be admired from any distance, but you can discover it only through lived experience.”

- Stephanie Dowrick

Revisit: Different not less

I am revisiting this post because World Autism Awareness Day is coming up next week, and April is Autism Awareness month.  This post is still one of the most important and personal posts I have written, and I felt like revisiting it.

This was published last year in October.

“Different, not less.”

Those are the words spoken and written by Eustacia Cutler, who is the remarkable mother of the equally brilliant Temple Grandin.

Eustacia raised Temple when autism was diagnosed as childhood schizophrenia.  Eustacia was encouraged to place Temple in an institution for her own good.  Eustacia was told, by more than one professional, that Temple was ‘the way she was’ because she was somehow defective as a mother, not emotional enough, not loving enough.  That was the time Temple was born into.  The age of the rise of psychiatry in the 1950s.

As I see it, the awareness surrounding autism today is a significant result of the work Eustacia did as a mother, an advocate, as a champion for Temple.  And by speaking with Temple all around the world, she has brought comfort, hope, understanding and above all, awareness to countless thousands of people.

This relates to my first instinct, in December 2007,  when the child psychologist drew her chair closer to mine, exchanged intense eye contact with her colleagues, and I knew, oh, did I know what was coming, and so I braced myself, then she spoke those words “we think your son meets the criteria for autism” and while my heart split in two, not knowing what I know now, not knowing any of the hope, joy and triumph that was yet to come, and all I felt was guilt, shame and above all, fear, all I wanted was to say it out loud.  Even though the words stuck in my throat, jumbled and choked with agony and grief, I still wanted to say it. My son has autism.

What I know now, above anything else, is that autism makes my son, different, not less.

That is why my ‘First Rule of Autism Club’ piece is so important to me.  It holds all of that emotion and more.  That is why I take such pride in sharing it, in giving voice to our journey.

Today, there is an awful lot of attention about bullying.  We need to work together, as the adults, to help the children and teenagers of the world understand that everyone is equal, everyone is to be celebrated, everyone deserves love and respect, everyone is a glorious miracle.  We are all different, but no one, NO ONE is less.

We don’t just need tolerance and compassion.  We need patience, we need open hearts and open minds.

All the brilliance of every human being gets eclipsed by social ideals of ‘same’.  Why is it that when we speak of development, we end up comparing?  It starts in utero – the predictions, the assumptions, the expectations of and on the being yet to emerge.  Who will they be like?  What hopes do you have for them?  What dreams will you dream for them?

Of course we all want our children to be outstanding, special.  But why don’t we step back and remember that they already are.  They are already a miracle.  Everything else is a bonus.

Everyone has strengths.  Why do we rate them based on how overt they are?  Simple things, pure things are over looked so much today.  The gift of a smile, a look, a touch, a hug?

I am thinking a lot about what I value.  And about what is valued by our society.   These are uncomfortable thoughts but if we don’t at least acknowledge that this is a discussion that must be had, then nothing will change.

I believe it is possible to make a difference.  I believe it is possible to change someone’s life, simply by listening, and paying attention to those around us.  It starts with me.  I get to choose how I treat myself, my partner and my children.  Then we see who else gets touched by the ripples we create.

I know the thought is exhausting, but every encounter we have matters.  I am trying to make as many of them as possible to be respectful.

So I am back to ‘it starts with me’.

We need to teach that to every child.

And to a few grown-ups, too.

“There is an exquisite melody in every heart.  If we listen closely we can hear each others song.”

- Soumya

 

the adventure continues…

I guess those who follow this blog will have noticed my absence. I chose to take a break from writing here and from reading all the blogs I follow for a while over the Summer break. I am still catching up on my blog reading. I have had many blog posts and ideas of what I could write here flittering in and out of my stream of consciousness. And because there has been such a gap since my last blog post, there is a fair bit to catch up on here.
I will try to do it some justice now.
I think the most pressing thing to address is Pinky’s new pseudonym. Towards the end of last year, I took a poll. I decided a 9-year-old boy needed a different alias than ‘Pinky’. It was cute when he was little and it worked as a reference to him and his brother as a sort of crime-fighting duo of ‘Pinky and Perky’. But it was time for a change.
The results pointed towards approval of ‘Captian Nintendo’. So until he requests a new name, Captain Nintendo it will be!

Captain Nintendo, Perky, the Husbeend and I had a good Summer. We did a lot of nothing. A lot of relaxing. We had visits with friends and family. Captain Nintendo went to several days at the CSIRO School holiday program, which he once again really enjoyed. I think he liked Zombie Day best. There was some small scale dissection (a bull’s eye) and learning about anatomy (in order to be ‘good Zombies’, which is an oxymoron if ever I heard one) and the ultimate experience of getting zombie makeup, to look the part. It was seriously gross. Of course he loved it. When he got home, it freaked Perky out, but he did grasp the concept of makeup and was quickly reassured. It freaked me out, too, when he knocked on the front door, and as I opened it, the Husbeend grabbed Captain Nintendo roughly by the shoulder and said in a gruff, cranky voice “I told you to STOP THAT!” as if to imply the ‘bruising’ and ‘bleeding’ were a result of abuse. I was taken in for about half a second but it really was that convincing.
Another adventure from Summer was our 3 night stay in Sydney. It did not go well. Perky had meltdown upon meltdown. We kept him in the hotel as much as possible. We did manage some fun but it was the kind of ‘getaway’ that required a long rest in the comforts of home to recover from! The main thing that was so awful was the Sydney ferry incident with the ‘ignorant man’. I even chose to write a rant to him that I posted on facebook. If you missed it, here it is:
“To the ignorant, beer-breathed man in the Manly ferry on Sydney Harbour on Tuesday 11th January: when you try to talk to my son when he is having a meltdown, and I ask you politely to please leave us alone, don’t ignore me and keep talking to my son. When I repeat my request, don’t tell me I am not doing my son or myself or anyone else any favours by not listening to you. I do know my son better than you. I know more about autism than you. I don’t care how long you have been a coach driver for. I don’t think it polite for you to call me ‘Doris’ and ask how old I am. I don’t think it polite that I have to ask you a third time, more forcefully to leave me alone. I also don’t like you coming up to me 10 minutes later just as my son has calmed down to tell me that I am rude to assume you know nothing, nor to be asked again how old I am, and to be called ‘Doris’ in your patronising tone. When I tell you that you are being rude, please don’t turn around and spit your words (and your spittle) at me that I should ‘take the hint, because you are walking away’. I find it astounding that you then went out on to the deck and abused my husband about how dreadful I am. I hope you fall under a truck, you hideous excuse for a human being.”
Yes, he made me mad. I was most mad at myself, for being so polite to him. I have decided that if that ever happens again, I will respond differently. I hope not to get arrested.  I saw the man as we left the ferry at Circular Quay. I had an irrational urge to chase him, and crash tackle him into the harbour. It is a nice fantasy that I am still visiting from time to time.

So now we are in week 3 of the new school year. After a rocky start for Perky, I have chosen to change his enrolment to part-time. The main reason is to see if a bit more down-time (i.e. time away from peers that are great but hard work for him) will reduce his overall anxiety, health and general wellbeing. He started this yesterday (because he was home sick on Monday and Tuesday). It went well. He goes to school until the end of the middle session, and I pick him up and we do about an hour of work (as that is all he is missing out on, as I don’t count missing the afternoon recess!). He enjoyed it. We did play-based learning with his new mobile set. We achieved fine motor skill work, following instructions, sharing, helping, counting, adding, subtracting, storytelling, asking and answering questions, and relaxation. I think that is pretty good for an hours work. My approach is to use the OT and speech therapy guidelines from his therapists to continue to build all of these skills.
Captain Nintendo has the same teacher as last year (hooray! Because she is awesome) and so far, he has had a great start, working well and even getting homework done on time and without much fuss.
It feels a bit like a dance – figuring out what suits everyone is the tricky part. Keeping up will be the challenge for me, I suspect!

 

“We live our lives with labels. Our names, for example. Perhaps a diagnosis. But what shapes us from within? What quality do you want to define yourself by?”

– my notes from a Stephanie Dowrick writing workshop I attended earlier this month.

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