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To You

GOODBYE 2014 AND WELCOME TO THE NEW YEAR OF 2015!

Hello there my friends,

How are you this fine new year’s eve?  The weather here in Melbourne is somewhat overcast and moody.  Perhaps an indication of what my year was like.

I was doing some bloghopping recently and came across this lovely post by Maxabella Loves.  She asks us to answer 10 questions to say farewell to 2014 and to ring in the new year.  I thought it would be fun, and possibly helpful, to play along.  I hope you will too.

1.  What word do you think best summed up 2014?

I would have to say Challenging, especially since Mr C and I ended up in hospital no less than three times each!  I also had to come to grips with being bald, and a new wig, which whilst an amazing gift, did present its challenges.

2.  What did you do for the first time this year?

Two things: (a) I blogged about being bald, and took a photograph of myself bald for the entire world to see.  (b) In response to Edenland’s call for lip-syncing entrants to honour the memory of her brother who had committed suicide, I decided to enter.  At the last minute I decided to remove my wig.  I then posted said entry onto you tube.  I faced my vulnerability well and truly that day and is something of which I am quite proud.  You can see the entry here.

3.  What is the one thing that happened that will have a lasting consequence?

Undoubtedly it was the fact that I decided to do the Blog With Pip course.  Through this course I learned to start and run my own blog, but more important than that was the connections that I made to some incredible women who continue to inspire me every day.

Before I started the course, I didn’t really follow blogs as such but now I read a number each day which has opened up my eyes to a whole new world.

I also learned to listen to my inner intuition more and to trust the process of living.  As a recovering alcoholic this has been quite an amazing revelation, although still very much a work in progress.

4.  Was there anything you wish you had done differently?

The one thing that truly stands out for me is that I did not take control of my health this year.  Despite my body shutting down and needing two operations, I still didn’t heed the signs.  The result is that I am still obese, am tired, am tired of being tired, feel very sluggish and am struggling to get out of my depressive spiral.

Losing weight isn’t just about the aesthetics for me, it is about my body not having to lug around 35 extra kilograms, it is about feeling vital, and not waking up every day feeling like I am wading through mud.

5.  Do you have a favourite moment from this year?  What made it special?

Hands down my favourite moment is when Master J came second in his Maths exam.  The sheer sense of achievement he had brought an expansion to my heart that I have never felt before.  For the first time in his life, he did not feel behind the 8-ball, he felt ahead of the game.  It was a marvel to watch and a privilege to witness.

Autism has many deficits, but so many strengths do exist.  Unfortunately, in our society, we have a habit of focussing on a person’s deficits instead of their strengths.  We somehow have to make people feel diminutive.  That day, my son stood tall, not diminutive at all, head held high knowing that his incredible hard-fought hard work had paid off.  There is no greater joy.

6.  What lesson has 2014 taught you about yourself?  About others?

Such tricky questions!  2014 has taught me that no-one can tread my journey but me.  For too long have I stood in the shadow of my own life watching it pass me by.  By writing here in this little space I have learned to confront a lot of demons, let them go and to move forward.  This has been a challenging experience, but also a gift.  It has blown out a lot of cobwebs in the recess of my mind.

I have also learned that the same applies to others.  I cannot tread their path for them.  This has involved doing a lot of letting go – of control, of doing too much, of always saying yes, of not feeling good enough.  It isn’t my responsibility to make my adult children’s life as easy as possible.  It isn’t my responsibility to always do for others at the expense of my own peace of mind and health.  They have their own journeys and they need to find their own way to live it.  Just like I have had to learn to do with my own life.

2014 was a massive learning curve in this area of my life.  It is still very much a work in progress, but I do believe that 2015 will provide more opportunities to practice and I will rise to the challenge well.

7.  How will the lessons from this past year change the way you approach the new year?

For a start, I am taking more control of my health.  It is my intention to focus on my health and my wellbeing at the cost of all else, if necessary.  This isn’t as easy as it sounds, not for me.  I am prone to being reclusive, to be mindless in what goes into my mouth.  I have an addictive nature – I replaced alcohol with sugar – so I have another addiction to conquer this year.  But I am determined I am going to do it.

I fear death.  Not actually dying, for that is foolish – we all die, but the fear of dying before knowing what it feels like to live a fulfilled life, a life of purpose and meaning, a life of vitality and joy, a life with more peace of mind than not.

I have a plan to achieve this sense of wellbeing and over the coming weeks of 2015, I will reveal it.

8.  What do you most want to do in 2015?

I want to regain my health which in turn will feed my sense of well being and peace of mind (and there is some really good science behind this too).

9.  What do you most want to change about yourself?  The world?

Kindness.  I want to be more kind to myself by feeding my body nourishing food, by moving it more, by developing my mind.  I want to be kinder to others and to the world, reducing my footprint on it.  And I would love the world to become kinder to itself.  If I could witness that in my lifetime, that would be incredible.

10.  What one word do you hope will sum up what you hope to achieve in 2015?

For me, it has to be HEALTH.  Without it I have nothing – no vitality, no peace of mind, no quality of life.  This year has taught me that I need to take control of my health on a physical, emotional and spiritual level.  Health has to be all encompassing, or it isn’t health at all.

I cannot give to the world in the way that I want to if I do not have my health.  I will be working very hard this year to achieve this.

So, there you have it.  My 10 questions answered.  It’s been a weird old year for sure, but one that continues to lay foundations for a better, more healthier me.  Thank you Bron for the lovely questions which gave me some real food for thought and have helped me to clarify my journey for next year.  No doubt there will be bumps along the way, but having this blue print will help.

Happy New Year everyone.  May 2015 bring you health and peace.

Much love,

SHW Signature

 

 

Categories
Ramblings

Connections

 

Master J finished school on Friday.

He bounced into the car, full of as much joy as a nearly 17 year old boy can muster.

I’m done.  I’m done for 8 weeks.

I smiled.  I love the school holidays.  It is just he and I at home.  Mornings are lazy.  No time frame constraints and we can do what the hell we like.

Today is Monday, the first day of our summer break.

It is raining outside.

I’m ironing sheets and duvet covers (really exiting summer break this one!).

The holidays are so boring!” Master J has just emerged from his room.  It is 8am.  On the first day of our summer holiday.  The one that we love so much.  The one that, whilst our paths don’t cross that often (meaning he immerses himself in his computer in his room and I busy myself readying for christmas, then relaxing and pottering), we are acutely aware of each others’ presence.  His autism means he finds communication really difficult, but I communicate with him.  I communicate with him through silent connection.  I love that so much.  I love him so much.

What do you mean the holidays are boring,” I protest, “they have barely begun.

Then a few seconds later.

Do you want to go for a movie?

He shakes his head.  I knew he wouldn’t want to – no self respecting teenage boy wants to be seen with his mum in public, autistic or not.

We don’t have parties anymore.  Why don’t we have parties any more?  It is so boring in this house.

It is true.  We used to entertain a lot.  We bought this house for its entertainment value.  Then six months later we became sober, then six months after that my mom died.  I lost my desire to connect.

Then we had a couple of parties,  nothing as plentiful as before, but a few.

Then this year Mr C ended up in hospital.  And I ended up in hospital.  So we haven’t had any parties this year.

Children on the spectrum struggle to connect.

We have parties at our house, and Master J will not move from his room.  But the other children will seek him out and sit with him.  This is him connecting with the world outside.

What he was really saying to me is that he feels isolated, that he needs to connect.

Which may seem weird to people who don’t understand autism, to people who have a stereotypical view of children on the spectrum.

The truth is that whilst anxiety drives them and their subsequent isolation, like any human being, like EVERY human being, they desperately want to connect, even in the smallest way.

I, on the other hand, am driven by depression.  I do not want to connect.  Not right now.  It is christmas and I am sad.  I want to stay indoors with just the two of us.  He in his enclave, me in mine, aware of each other, connecting in our own way.

I look at him.  “It’s really late in the year, Master J, people won’t be available for a party.  But we are going to The C’s for christmas drinks.

It wasn’t what he wanted to hear.  That will require effort – to get ready, to travel, to meet people he won’t know.  His face drops.

I tell you what.  How about we have a New Years party?  I don’t know who will be around, but no doubt some people won’t have plans.  Everyone can bring their children.

He nods, contemplating first, then accepting my offer.

I make a mental note to make sure I email everyone to see who might be around.  I also make a mental note to organise a few parties next year.

Connections are important.  They are important to Master C and despite my depression, they are important to me.  And it is important to maintain them throughout the year.  No matter how busy we are, or how ill we may be.  It is too easy to hibernate, to isolate, to lose connection.

You see, we are all connected on this crazy planet we call home.  Whether we like it or not, we are all connected.  We all have a burning desire to belong, to have a tribe of our own.  Even, or perhaps especially, children on the spectrum.  And so it is that I will be working hard to maintain those connections.  And so it is I have written a couple of dates in my diary next year to hold a party or two.  So that I can feel connected.  So that Master J can feel connected.

And so it is that my “I can do what the hell I like” summer holiday has now turned into “who the hell is around on NYE?” summer holiday.

Connections.  They drive us no matter what.  And that isn’t a bad thing.

Until next time,

SHW Signature

 

 

This post was written as part of #reverb14 – a blogging initiative hosted by Kat McNally.  The month of December is a good time to reflect on the year that was and for us to contemplate the reverberations that we send out into the world.  Please do hop on over to Kat’s blog and if you feel moved to do so, please join in.  Today is Day 8 of the initiative.

 

 

Categories
Ramblings

Autism and the sweet taste of success

 

Every now and again something happens in your day, in your life, that really is worth shouting from the mountain tops.

Today is one of those times.

But let me backtrack a bit.

This time last year, Master J was in Mansfield attending a residential intensive program for children on the spectrum.  He was suicidal, you see.  Life, his life, had become so unbearable for him.  He hated being autistic and he hated school.  He couldn’t reconcile the fact that autism is who he is, what makes him the beautiful soul that he is and he wanted to end it.  I sat and listened as he told me that he wanted to die, a very large piece of my soul breaking with him.

Sending him to that school was by far the most difficult thing Mr C and I have ever had to do.  The school caters for children across the spectrum, meaning that children who are low functioning reside with those that are high functioning.  It is a lesson in tolerance, responsibility, community.  And it is very very hard to learn.

The endless phone calls begging to take him home, the screaming accusing us of abandoning him, the pleading not to take him back when we had the home weekends.  It was draining, and a mother’s worst nightmare.  The guilt I may have felt at all my failings as a mother was nothing compared to what I felt in those 10 weeks.

But he survived.

We survived.

He learned that he is capable of more than he ever thought possible.  We learned that he capable of more than we ever thought possible.

He learned that autism is not a curse but a gift.  We learned that to try to wedge him into a neurotypical expectation was destroying him.  We learned to ignore the constant cries of people who think that autistic children are just over indulged and need to learn to fit in.  We learned to accept him completely for who he is.  He learned to largely do the same.

We all learned so very very much.

This year he saw a future.  A future he couldn’t possibly see that day he begged me to let him die.

It has been a tough year for him.  A year where he has had to push himself beyond his comfort zone time and again.  A year when a few melt downs have ensued.  A year when small victories have been few and far between.  A year where he has continued to push forward.  A year where he has dared to dream, dared to hope, dared to take action.

And today was pay day.

Text from Master J:

76% Maths exam.  Second highest in class

Instant tears streamed down my face.  On the day of the exam, he was so anxious, so convinced he would fail.  Yet he had prepared.  Throughout the year he pushed himself to do homework even when, in his mind, he could not see the point.  “If they insist on sending school work home, why aren’t I being homeschooled?” he would ask.  His logic was flawless.  Yet, he would sit, even if was at the last minute, to do his homework, willing himself to focus, to ignore the pull of his laptop to complete the work at hand.  It wasn’t easy.  It was a mammoth struggle.  He took the first steps towards a future he knew he wanted to have.

My response:

OMG!!!!! I am so freaking proud of you, well done my love.  Do you know how clever you actually are Master J?  Please never doubt yourself.  The sky truly is the limit.

No response from him.  But then I didn’t expect one.

This is huge.  This is beyond huge.

I picked him up from school.  As he opened the door I whooped and cheered.

At least wait for me to get in the car,” he laughed.

He looked so radiant.  At the tender age of 16 and a half, he had finally tasted success, victory, borne of the effort he had put in, borne of him pushing himself so hard through obstacles that were, for him, so great.

My heart felt like it was going to burst out of my chest.

He sat in the car.

Oh my god Master J, I am SO proud of you.”

I got the bloody second highest in the class.

I know!!  The second highest!  Are you ecstatic?  I best Ms K couldn’t believe it.

Ms K is Master J’s maths teacher.  But she is also his pastoral care teacher.  She is on his pastoral care team that make sure he fits in at school.  She was one of the ones to suggest he attend Mansfield.  She has an incredibly soft spot for Master J.  And he hasn’t been easy on her.

Nah, she was pleased.  I asked her if I had failed and she said “maybe” and then she smiled and said I got 76%.  I got the bloody second highest in the class.

Swearing is something Master J does when he is excited.  We used to try to correct him but then we realised that it is how he communicates his excitement and Master J doesn’t express excitement very often.  We stopped stifling him.  We learned to accept him.

In fact, he said “I got the bloody second highest in the class.” at least ten times in the fifteen minute journey home.

This.  This is what success tastes like.  For him and for us as his parents.  Not that he got 76% for maths, not even that he came second highest.  No.  It is the fact that he is learning to believe in himself.  He is learning the correlation between applying himself and that great feeling of achievement after working through the challenging times.

Something tells me that this is just the taste of possible things to come.  And it feels good!

Until next time,

SHW Signature

 

Categories
Action

Bullying – a short story

 

Master J refused to go to school yesterday.

After one almighty melt down yesterday, and some pretty uncharacteristic behaviour, we managed to get out of him that a new boy had come to the school and decided that Master J would be the target of his new stomping ground.

Master J has difficulty tying his tie.  Every morning, we run through the process of how to do it, but it is proving elusive for him to do it on his own.  There is a lot of dexterity that goes into tying a tie.

This boy, much bigger than Master J, was astute enough to work out that this tie tying thing was a problem.  So he started to pull the tie so hard that Master J would be forced to fix it.  Of course, he struggled and so the big boy and others – Master J’s friends of four years – would laugh.

And then for good measure : “Hey Master J, I fucked your mother.”

For any child to be bullied in this fashion is excruciating, but for a child on the spectrum it is a fate worse than death.  They are not equipped with the language skills to fight back – they feel like they are swimming against the tide as it is and with bullying, it is like someone is holding their heads under water.  Their world spins out of control and the only way they can cope is to withdraw to where it is safe, never to emerge again.

I was furious.  Mr C was furious.

We have fought 4 long years to get Master J to the point where he believes in himself, believes he can hope to have a future of fulfilled independence.  And there is no way I’m letting this boy ruin it for him.

Mr C was tempted to go to school pickup, walk up to the boy and say “I believe you’re fucking my wife”.  But, as tempting as that is, confronting a 16 year old in this fashion is definitely not the way to go.

I went down to school.  I’m always going down to school.

They were shocked, horrified at what the boy had said.  I was not so concerned with what he had said, as I was with what he was doing – manhandling and belittling my son, eroding his already cut glass fragile self esteem.

They would deal with it they said.

Master J had specifically asked to be consulted as to what should happen.  He is petrified that he will be targeted even more.  Bullies rely on that fear.  It is how they operate, it is how they gain strength.

But this bully did not count on me.

I used to be bullied at school.  A girl relentlessly bullied me in primary school.  I would tell my mom and, in her naiveté, she believed that children were just mean to each other and it would pass.  Perhaps she even believed that it would toughen me up since I was so sensitive.  The bullying was methodical and relentless.  Once the girl ran up behind me just as I left the school grounds, hit me so hard that I fell to the floor.  I cried, my knee grazed and bleeding.  She laughed and not one person, not one adult person, of which there were many, came to my aid.  My bag and all its contents were strewn across the road.  I had to dodge cars to pick it all up since I knew that we had no more money to replace them.

My parents opted to send me to a private school for my secondary schooling – a school well out of our catchment area.  There are no words to describe the relief I felt, only to have that feeling dashed on the first day of school when I discovered her parents had done the same thing.  The bullying continued.  It culminated in her hitting me so hard in the locker room that I fell to the floor and pee’d myself.  I was 14 and rather than face the entire locker room with my pool of piss, I pretended I had fainted. Except my acting skills were clearly not that great, since everyone just stepped over me and I remember someone yelling at me to move out of the way of their locker.  They all left and I got up from the floor.  It was only the kindness of an older girl, and a subsequent rugby playing boyfriend,  that made the following two years bearable.

It is safe to say I have little time for bullies.  It is also safe to say that I strongly believe as parents we have a responsibility to protect our children.  I never leave the process to the school alone.  They do prefer that the parents don’t get involved, but the reality is that they need the support of the parents.  And if they don’t get results, then I wouldn’t hesitate to move my son or get the police involved, I just wouldn’t.

It is also important for my son to know that he is not alone.  It is the kids that feel alone that feel they need to take their lives in these bullying incidents.  The kids, of course, are not alone, but they believe they are.  It is really really important that my son knows he is not alone, that we are in his corner, that we believe him and believe IN him.

As it stands, the bullying hasn’t reached critical mass. It is some manhandling and insults.  Nevertheless, it cannot be allowed to continue, or worse, escalate.  I trust the school will do what it can and I trust that come the end of this week, my son will once again feel safe at school. This boy, I am hoping, just needs a bit of guidance, a bit of gentle persuasion to go in another, less violating direction.

Master J has agreed to go to school today.  I’m not sure the school knows how brave and courageous that is of him. To have Anxiety Disorder on top of his Autism and still face the bully.  He feels sick, like a lamb going to be slaughtered.

The school will talk to Master J and together they will decide on a strategy that will involve no threat to Master J.  And I will be waiting in the wings, via phone calls and emails, so that Master J knows he is not alone.  Because there is strength in numbers.  And no one should have to face bullying alone.

If you are being bullied, at school, in the work place, or anywhere, please speak up.  Please don’t put up with it. Please make a change that means that you are safe.  At the very least, we should feel safe in our own existence.  And know that in this space, you are safe.

Until next time,

SHW Signature

Categories
Dear Child Uncategorized

Autism + Siblings {It’s not always pretty}

Autism + Siblings

It was Miss J’s birthday a couple of days ago.  22 years.  Where on earth does the time go?

In the lead up to her dinner at a local Thai restaurant, I found myself reflecting on being a mother to her and what it was like for her to grow up in our household.

We try so hard as parents not to screw up our children.  We so desperately want them to remember their childhood with fond memories, all warm and fuzzy of what an amazing time it was.

It wasn’t for her.

Master J has autism.  We didn’t know he had autism.  We were told it was ADHD and that with proper behavioural management his unbelievable outbursts and rages would improve.  They never did.  And Miss J was usually caught in the crossfire.

Just let him watch the program he wants, Miss J

Don’t annoy him like that Miss J

For goodness sake, don’t sit in HIS chair, Miss J

Like any child on the spectrum, Master J had sensory issues.  He needed to control his environment to manage those issues.  None of us knew this.  We were just acutely aware of the rages.  Things flying across the room, walls being punched, the kicking, the biting and the screaming.  We, meaning I, would do anything to avoid it.

And Miss J copped the brunt of it.

I am still angry.  Angry that the misdiagnosis not only robbed Master J of early intervention which would have given him a much less anxiety-driven life right now, but also a better childhood than Miss J got.  She deserved so much better.

You love Master J more than me!

The words slapped me in the face.  How could she say such a thing.

You always let him have whatever he wants.  You always make me give up everything.

I denied it, of course, unable to face the reality of it.  Looking back, it was true.  Not the I loved him more than her part, that is absolutely not the case, but the part about her having to give up everything, that’s true.

Miss J has mentioned her childhood a couple of times recently.  She is dating a wonderful guy who also has a younger brother with autism.  They have been comparing notes, supporting each other in what is very often a lonely existence for siblings of children with autism.  It has clearly brought up some unresolved issues for her.

At the birthday dinner it came up again.

Mum loved you more

Damn straight, Master J responded (this is a usual response for him to a range of things)

I had to step in.

I don’t love either of you more than the other.  I love you both the same.

Nah mum, you know you love me more.  Master J said.

I don’t J, I love you both equally.

Well, it didn’t feel like it, Miss J said, he got away with everything and I got nothing.

My heart broke.  A thousand times.  I could never give back to her that was so rightfully hers.

I had a dilemma.  I wanted to deal with it, right then.  I needed to acknowledge her pain, yes, in front of everyone.  I needed to let her know that I understood.  But Master J was there too.  I didn’t want him to be left feeling like he was a bad person for what he had put her through.  But the reality was he hadn’t put her through it at all.  I had and Mr C had.

I know it was hard Miss J.  It wasn’t easy.  Dad and I did all we could to avoid Master J’s outbursts and rages and that meant you missed out on so much.  I know it affected you so much.

I felt so awful saying this in front of Master J.  I was so torn, as I always have been, between his very special needs and the very natural needs of his older sister.

The trouble is that we didn’t know that Master J had autism, we had no idea.  We had no idea how to cope and so we did the best that we could.  It wasn’t enough sometimes, but it was the best we could do.

Master J went very quiet.  Miss J just looked at me.

It just wasn’t fair Mom.

I know Angel, it wasn’t.

Mr R, the boyfriend piped in how awful it was for him too, growing up with a brother on the spectrum.  He used the word ‘horrendous’ and whilst I knew he meant it in the best possible way, to support, to show solidarity, I shuddered.  Master J by now was very quiet.

But you know, Miss J, there were a lot of good times too.  Like how you and Master J would dress him up in your outfits.  I have some wonderful photos of Master J in your dresses and even a bikini.

Burn them!!! Master J cried and we all laughed.

Plus, despite it all Miss J, you were so protective of him, loved him so much.

Still do, she said.

Dad and I should have, could have done things so much better, love.  We just weren’t armed with all the facts.

The conversation needed to end, so Mr C changed it and the evening continued as usual.

That night, at home, I worried how Master J had taken the conversation.

Did you think we were saying you were a bad person?  I asked him.

A bit.

We weren’t Master J.  You are an amazing person.  But your autism, when you were little, meant your ability to communicate was impaired.  This caused you to not be able to communicate what you needed and so you would rage.  Miss J often caught the brunt of that.  You have autism, that is a fact, but it is how Dad and I handled it that was at fault, not you.

He nods.  I know he is processing.  His self esteem is so fragile, so very fragile.  Please god do not let it be broken.

Mr C says he is going to speak to Miss J further about this.  It is clearly an issue for her and we need to let her know how very much she is loved, how we are aware that her childhood was not easy, but that as parents we did the best we could.

And that is the crux of it, isn’t it?  We try so hard to do the right thing, with the information we have to hand at the time.  When I was pregnant, feeding had to be 4 hourly and nothing else, now attachment parenting and on-demand feeding exists, with baby led weaning.  It all feels so foreign.

All we want as parents is to bring up children that are relatively happy, and able to contribute to society in a way that is meaningful for them.  I think – I hope – we have largely achieved that.

Miss J and Master J are incredibly close.  Miss J is a young mum who is fighting very hard to live life on her own terms.  They both have incredible sense of justice and cannot abide any injustice in the world.  I could not be more proud.  And since I am their mother, I am exercising my right to take some credit.

Being a parent is hard enough.  Mistakes are okay.  And it is never too late to put things right.

Much love,

SHW Signature

 

 

 

Categories
Uncategorized

The Voice for our children with Autism

When we become pregnant we wish for many things for our children, but most of all, we wish for “ten fingers and toes”.  We wish for healthy kids because once you have health, you can achieve anything, right?

Then, your child is born and as they develop, you know that something is not right.  Something is either missing, or off.  The endless outbursts, the non communication, the lack of social interaction.  Deep down this isn’t “normal”.

In our case, we went to the doctors for a full six years complaining of JC’s behaviour before he was diagnosed firstly with ADHD/ODD (which is Oppositional Defiancy Disorder).  His behaviour was, frankly, a nightmare to cope with.  He would have meltdowns on an epic proportion – toys flying across the room, kicking, biting, screaming, and they could last for hours.  We quickly learned that he was routine driven and if any part of the routine was broken a melt down would ensue.  As a family, we adapted quickly.  And with it came judgement.

“You are indulging him,” ‘helpful’ family members would say.

“If that was my child…” I heard many times in supermarkets, walking with the dogs, from family members.

As a society, we have expectations of how a child should behave.  If they don’t behave that way, we blame the parents.  After all, children model behaviour and it has to be the parents’ fault.  Families of children with what I call a non-visible disability, I have discovered, get most judgement from extended family the most.  We are treated almost as if the poor behaviour of our children reflects badly on them.  Needless to say, we adapted – family isolation set in.

Then, when JC was 11 we decided to take him for a reassessment as he was entering high school.  We had navigated primary school with some success, with me being the one parent the teachers never wanted to see.  I had already become masterful at pushing, pushing, pushing, making sure that JC’s needs were being met.  We wanted to make sure that as he entered high school, his ADHD hadn’t thrown up any learning difficulties we didn’t know about.  

We attended the Royal Children’s Hospital in Melbourne, where we now live.  It was a full day of assessment both for JC and for us, his parents.  Endless forms and questionnaires and interviews for us, and endless activities for him.

At the end of the day we were taken into a room whilst JC was given some video game time.

“Have you ever been told that JC has autism?” we were asked.

Dee and I looked at each other.  The word had never come up.

“It’s on the high functioning range,” the psychologist said, “but he is definitely on the spectrum.”

This came as a complete shock.  ADHD/ODD is what we thought he had, and we felt we could cope with that – the right diet, some behaviour modification – we could give him the chance at achieving anything, right?

But autism?  What does that mean?  Is it curable, can he grow out of it, is it lifelong?  JC began to show signs of extreme social and communication deficit from a young age.  His language was always monosyllabic.  He could speak, quite well, but he couldn’t engage in a conversation.  At the age of 11, we had never had what I would call a proper conversation.  Now we knew why.

“He is classic autism really,” the lady said.  “The aversion of the eyes, the walking on the toes – these are the physical tell tales.  Then there is his pedantic speech, his monosyllabic answers when asked a question, his clearly routine driven way of life. And other signs as well.”

“We will prepare our report,” she said.  “When you come back in a month, we will have a full plan for JC.”

We returned a month later.  We were handed the report.  It read the following:

JC is diagnosed as having dysthymia, anxiety disorder, ADD inattentive type and high functioning autism.

The words leapt off the page at us. 

“What is dysthymia?” I asked.

“It is chronic depression,” the head of the unit said.

A tear trickled down my cheek.  All the 11 years of my sons life I had been working at “modifying his behaviour” had in fact been causing him such anxiety that he now had two recognised disorders of anxiety and depression.  I wanted to be sick.

Now, of course, all the sensitivities to sounds and clothes, the smelling of the food before eating anything, the strict routines, the repetitive speech, the massive melt downs, all of that and more, now made complete sense.

“How do we help him?” I whispered.

They gave us a list of some organisations and sent us off on our way to process the information.

On the way home, I kept looking at JC.  How are we going to let him know.  Beneath the emotional outbursts he was (and still is) such a beautiful boy.

The first thing we did was sit him down and tried to explain in the best way we could that he didn’t in fact have ADHD, he had a condition known as autism.  We explained that this affects certain parts of the brain, which makes a person unable to control all the sensory input around him, which is why he needs to control so much of his environment.  

“In effect, my love,” I said, “you kind of get brain overload.”

As we spoke to him I sensed relief, both for him and for us.  We weren’t bad parents and he just wasn’t being naughty (although we tried hard not to make him feel like that).

Now we had the diagnosis, we felt we could move forward, get JC the assistance he needed and we could finally get on the road to that achievement of anything he wants.

If only life were that easy.  

JC missed out on early intervention and because he was now 12, he was acutely aware of being different.  He refused speech, occupational or any other kind of therapy.  Getting him into the car to attend any appointments, became a mine field.  His outbursts increased, not decreased as he reached puberty, except now he had learned to swear and insult to boot.  His dependence on computer and other technology led him to isolate himself to the exclusion of all else.  As I write this, he is now 15 and has not had one single friend over to the house, nor had a birthday party, in three years.

And the judgement has continued, as well as the family isolation.

Yet, through all of this, we are a stronger family.  I have become a far more compassionate person, so much more tolerant of others that I come across, so totally in awe of people with disabilities who have to navigate a world where the general population want us all to look and act like the media says we should.

I have watched as my son has been persecuted for acting or saying the wrong things, like the time when, at the age of 13, during puberty, a girl asked him out and then asked him if he loved her enough to have sex with her, and then didn’t understand why he got into trouble for constantly asking her when they were going to have sex. (I will be doing another post on sexuality in children with Autism).

You see, children with autism are very literal.  You have to be careful what you say.  They take all things you say at face value.  They don’t understand the hidden meaning behind sarcasm or innuendo.  I believe their biggest gift is that they don’t play mind games – they simply can’t.  They tell you like it is and they believe that what you say is what you mean.  At times, it is shocking.  Like the time he told me that if I sat on him I would crush him (because I am overweight).  But I had long since learned to appreciate his honesty.  Of course, these skills can be learned and attempts must be made to teach them, so we went through a session of why it isn’t okay to tell someone who is overweight that they would crush you if they sat on you 🙂 

Because they do take things very literally, they also believe most of what you tell them.  They have no reason to doubt you.  This makes them very vulnerable.  After the above incident, JC went through terrible bullying.  He was called a pedophile by the kids at school.  Even though we have told JC that he isn’t any such thing, still today, some two years later, when he is upset and frustrated with being autistic, he will call himself a “pedo” among other things that kids have called him.  He simply believes it to be true.  We hope as he matures and is surrounded by more and more support and love, that this will change.

Navigating a world like the one we live in is a mine field.  JC struggles every day.  In our particular circumstance, members of our extended family still, 3 years later, refuse to believe that he has autism, coming right out and saying that they don’t believe he has it, that we use it as an excuse for his behaviour.

Demonising is common place.  The media will use headlines such as “Autistic rapes teenage girl”, or “Autistic person holds up bank”, or other such headlines.  The point is that the word autism is linked to the crime, yet research shows that it is extremely rare for people on the spectrum to commit a crime and also that, rather than autism itself being the cause of the crime, there are many other circumstances that lead to said crime.  This perception extrapolates to the wider community and we have had first hand experience where JC has been accused of something that we simply know is not capable of doing.  

At times, it can be relentless.  But, three years on, it is our firm belief that it is our duty, as the parents of these children whose major deficit is in the realm of communication, to advocate for these kids.  We live with them, we know them better than anyone else.  We need to keep pushing, keep educating, keep working towards a more inclusive, tolerant society that is more accepting of these kids, that is prepared to help them navigate this over stimulated world.

Recent statistics in Australia say that 1 in 160 children are diagnosed with Autism, in the USA a figure of 1 in 80 has been bandied about.  That is a lot of children in the community who are being misunderstood.  We have to change this.  We simply have to and I, for one, will not rest trying to get the message of what an amazing group of kids these are – each with their own beautiful personalities, unique set of gifts and each able, in some way, to contribute to this world to make it a far better place to live in.

Who is with me?

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Teenage suicide – what to do?

The phone rings.  I pick up.

“Hello?”

“Sarah, it’s Bee”

“Oh, hi Bee.”  I sigh, I’m not really in the mood to talk to anyone from JC’s school.

“You know JC has this school excursion into the city tomorrow.  In light of his recent issues, I have been asked to accompany them in an incognito kind of way.  So that he wouldn’t be aware that I was with them, if you know what I mean.  Are you okay with that?”

I would be a fool not to be okay with any kind of support offered to JC, but I can’t help thinking that this is all a little late.

“That’s fine.”

“I have been asked to look out for what signs he might display if he is under any stress.”

I am tempted to say that he is ALWAYS under stress, only you don’t notice it.  I choose not to go down that route.

“He probably won’t show anything until he gets home, but he might become withdrawn, very quiet, look at his phone all the time.  As I said, I doubt he will do anything drastic, just wait to get home for the meltdown to occur.”

“I understand.”

Do you Bee, do you?  Because last week when our son was threatening suicide for God knows what reason, no-one seemed to understand then.  No-one understood that by virtue of the fact that JC got in the car that day and asked to have his medication looked at and begged to see someone because he had been planning his suicide, right down to how he was going to do it, that his condition was god-almighty serious, that his life was in the balance.  No-one understood then.  Now the pressure has passed, due to us keeping him home for a week, now you want to know what the signs are and you tell me you understand.

I think not.

For over a week now, I have been calling psychologists, psychiatric units and other professionals to help me help my son.  At every call I have been told that there is a waiting list (ranging in length from 4 weeks to 6 months!!!!), that until my son commits the act of suicide (which I guess we have to pray he botches up), they can’t see him on an emergency basis.  If I am that worried, of course, I can take him to the emergency department of my local hospital, apparently.

This is society’s solution to a growing epidemic.  Reactionary, rather than proactive, assistance.  Take him to the already burgeoning emergency room.  Have they any idea what that would be like for my son?  Firstly, being in a room that is overcrowded with sick, drunk and drug affected people is just going to totally freak him out.  We would be lucky to be there long enough to see anyone.

What message has been sent my son this week?  Don’t worry son, you are suicidal, begging for help (no mean feat for any child, let alone a child that is on the spectrum), but hey, until you actually go through with it, there is no help for you.  I feel sick just thinking it.

I have to ask the question, is this a cause for the increase in teenage suicides? It’s not real until it actually happens?

I have not been a nice person this week.  I have crapped on two psychologists and told my son’s teachers they aren’t giving the matter serious enough attention.

My son may think that society doesn’t care, but by God, he will know that I care. And I do care, I care very very much.

I have to deal with this crisis right now, but I have suspended my studies and I will be investigating this further.  We cannot have this continue any longer.  6 month waiting lists for suicidal children – it’s just ridiculous!!

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The art of frustration

Today has been frustrating.  I just could not get going.  I have had an undercurrent of anger bubbling beneath the surface and it hasn’t left me.  Actually, anger is not the right word.  Frustration is definitely right.  

There hasn’t been a reason for it.  Well, except for the stupid fact that I keep forgetting to take my thyroxin causing me to feel like I’m wading through sludge; and that I had nightmares all night.  I dreamed of mom and that NEVER bodes well for a good day when I wake up.

JC went to school without arguments, so that was definitely a win for the day.  And whilst nothing mind blowingly horrible happened today, I have just felt out of sorts.  

What is the point of the story, you might ask.  Well, there isn’t one really.  I am just frustrated.  It’s my diary.  I don’t have to make sense, and there doesn’t have to be a point ALL the time, does there?  I would say no.

Do you ever have one of those days when everything seems to frustrate you?  There is no reason for it, but it is there ALL FREEKING DAY!  

It is christmas season.  I had to go to the shops – not for christmas presents, but to meet my in-laws for coffee – I couldn’t find parking.  Why does everyone have to do christmas shopping on a Tuesday at lunch time.  Seriously – that’s what the manic weekends are for!  But no, every man and his wife was at the shop today.  Just trying to get a coffee was a nightmare.  Finding a seat to drink my coffee with my in-laws felt like I was taking my life into my own hands.  The glares from the people in the queue behind me when I took the last available table, even though I was with what we can safely call elderly people.  So much for christmas spirit.

May that’s it.  Maybe it is the christmas season!  I used to love it, but I have to admit, in the last 4 years it has simply not had the meaning it used to.  I assume it is because my children are growing up and christmas is not so much the excitement of santa coming down the chimney, but more about what latest REALLY EXPENSIVE gadget might be dumped under the tree.  Consumerism really frustrates me.

I decided to go home and get some quiet time before picking up JC.  When I get home, I realise that I need to wrap the presents that we bought over the weekend (yes, we actually braved that bloody christmas crowd).  It takes me a good hour and a half.  I wonder if we have got enough for everyone.  I suffer greatly from giver’s guilt – the guilt that you never feel like you are giving enough.  Selling your soul to the devil wouldn’t even be enough.  I look at the MASSIVE pile under the tree and tell myself not to be ridiculous.

Next, I go to pick up JC.  He demands to know where his milkshake and donuts are.  A few weeks ago, I treated him to the aforementioned sweet things as a surprise after school.  I should have known better.  He is on the spectrum.  He wants it every day now.  Instead of patience, and refusing his demands, I get frustrated and storm into the shopping centre, grab the donuts and milkshake thrusting them into his hands.  I then berate him for not even offering me any.  He tells me it is karma – he is probably right.  My frustration does not improve.

I have sent Jay a number of texts today.  She hasn’t replied to any of them.  I feel frustrated and with it I feel clingy, like a needy mom.  I start to feel frustrated at my own frustration.

I get home and resolve to do my christmas cards.  I look at the list.  I never hear from any of these people.  Why am I sending them cards.  I know it is the season of giving, but it would be nice to get a card in return once in a while.  Frustration.  I abandon the idea until I am feeling more charitable.

Whilst I am going through this day of frustration, I am ploughing through a mountain of sugary food.  Dee walks in and wants to know where his “snakes” are – these are sweets in the shape of snakes that he uses for energy on his ridiculous 90km cycles he does.  I look at him and tell him I ate them.  

“But they are what I have on my cycle!”

I yell at him.  “WHAT DAY IS IT?”

He looks at me confused.

“WHAT DAY IS IT?” I yell again.

“Tuesday,” he says.

“What day do you cycle?” I ask.

“Sunday,” he says.

“RIGHT!  REALLY, YOU ARE MOANING ABOUT YOUR STUPID PACKET OF SNAKES ON TUESDAY WHEN YOU ARE CYCLING ON SUNDAY.  I THINK WE MAY BE ABLE TO AFFORD TO REPLACE THEM!!”

“Okay, I’m just saying!”

Frustration has followed me everywhere today.  As I write this, I am watching Jamie Oliver and his 15 bloody minute meals program.  It doesn’t take any where near 15 minutes to make this meal.  Any moron can see that it has taken the production crew about an hour and a half preparing everything before filming.  I’m frustrated that my cooking hero is turning into a liar.

They (don’t ask me who they is) say every day brings with it a new lesson to be learned.  Mine for the day is that I shouldn’t have gotten out of bed!

 

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The daily hum drum of Autism

JC isn’t at school today.  He isn’t really ALL that sick.  He is tired.  End of school term exhaustion.  

I got a phone call yesterday to say I had to collect JC from school as he had vomited.  I don’t believe JC is really ill.  JC is a dab hand at vomiting on demand.  It’s made easier by the fact that he has always had a dodgy stomach.  I have become hardened to the plight of the vomiting child.  I sigh.  I cut my lunch – which I haven’t had – short with my sister-in-law and head on back to the school.

I arrive at school and ask to see JC.  I walk in to the sick bay.  He is sitting on the bed, long legs dangling over the side, reading his iPod.  Of course he is.  I walk up to him and stroke his arm.  He looks at me and smiles.  Not an I’m-pleased-to-see-you smile, but a smile that says, Yep, I’m on my way home.  I swallow my frustration.  It is who he is and I have to accept that.

I take his bag from him and as I do so, I brush his hand.  He feels hot.  And now I look at him, he feels pale.  “Oh, I think you REALLY are sick.” I say.

“I told you this morning I was sick.”

“Yes, yes you did.”

“And you didn’t believe me.”

“That happens when you cry wolf so often, JC, we stop believing and then when you are really sick, we still don’t believe you.”

“I don’t cry wolf anymore.”

I can’t stop myself laughing.  “Oo, you big fibber.”

“No, seriously, I don’t, ever since Dad said he would buy me Assassins Creed at the end of the year.”

That still grates me.  The game is exceptionally violent.  I don’t like the idea of JC playing it, but Dee offered it to him out of desperation.  It was the one thing that we had that could make him go to school without question.  The one thing that would motivate him to overcome his fears and anxieties and enter that school ground.  Lord knows what will happen when we have to hand the game over.  What leverage will we have then?

“Oh, yes, Assassins Creed,” I say.

JC smiles.  “I’m going to make you play it with me.”

It is a long standing joke with JC and I.  I am a pacifist and he plays games that shoot other humans and beings to smithereens.  I hate those games.  He loves to threaten me with making me play them.  I protest with a smile.  It’s our thing.

We get home.  I quickly change his sheets.  He is hot and I think it would be nice to get into clean sheets.  I take his iPod before he gets into bed.  JC protests.  “Mum, I need that!”

“No, you need to rest.”

“Reading is resting.  I’ll be in bed.”

“JC, you stare at this tiny little screen all day, except for when you are at school.  From 6am until 10pm, you do nothing but read this tiny screen.  I am surprised you aren’t blind!  You are sick because your body needs to rest.  That means sleep.”

“But I can’t sleep during the day.”

“Tough, you can try.  When it is after school hours, and if you have had some rest, I’ll give it to you then.”

It works.  JC manages to rest for a good hour or so.  I give him his iPod and he goes back to what he feels most secure doing.

Last night I read about PDD NOS.  I fear for JC and how withdrawn he is.  He is so isolated.  He tells me he doesn’t care and whilst I can accept this, I know the world outside our house will not understand.  

I go to tickle his back.  Every night we have the same ritual.  Dee gets JC to shower (under great protest EVERY night), he then makes him hot chocolate.  A few minutes after his hot chocolate, he then comes into the lounge, picks up one of the dogs and returns to his room.  I follow him in, free the imprisoned dog, and begin to tickle his back with a backscratcher that Dee got as a christmas present.  I use this time to try to communicate with JC.  Normally, he won’t speak to me much, even going as far as to tell me that he is no longer listening to me, but at night whilst I am tickling his back, I can usually get more out of him.

Tonight, I have decided to try something different.  

“How about we play a game whilst I tickle your back?”

“What game?”

“I say the name of a feeling and you have to tell me about that feeling.”

“I don’t understand.”

“Okay, say I say the word Love.  What can you tell me about love?”

“It makes you want to have sex with someone.”

Typical 14 year old response, but not one an NT child would say to his mother.  I smile.  

“Well, yes, there is that kind of love, although I suspect you are talking more about lust there.  When you love someone that you want to have sex with, you respect them and want to protect them as well.  Like Dad and I.  What other kinds of love are there?”

“How I love Harold and Lulian?”  Harold stares at the door having just been set free from the clutches of JC.

“Yes, that’s one kind of love.  What about the love you have for me.”

“That’s gross mom, that’s incest. Is loving Harold and Lulian a form of beastiality?”

This is going to be harder than I thought. “No, JC, it isn’t a form of beastiality.  Where did you even learn about that?”

“A friend of mine told me about it, so I googled it.”  Of course you did. 

“Well, no, it isn’t.  Let’s get back to love.  So there is the love you have for your girlfriend, a different type of love for your parents, your sister, your best friend, your cousin – “

“Do you know it’s not incest if you have sex with your cousin.”

“JC! Enough, let’s just talk about the subject at hand.” and then, “actually, I think it is incest.”

“No, it isn’t.  I looked it up.  You are allowed to marry your cousin, but not anyone directly genetically tied to you like your parents, your sister, or grandparents.  But your cousin is okay.”

I make a mental note to check if that’s right.  “Well, I wouldn’t go around telling anyone that JC, people will start looking at you weird and wondering why you know that.”

I decide to finish the tickling and with it, the conversation.  “Well, that’s it for now.  Perhaps a different feeling for tomorrow night.”

“I don’t think so.”

“Well, good night my boy.  I love you.”  I kiss him on the head and rise to turn off the light.  “I love you,” I say again.

“Mm” is all I get.  JC announced a while ago he was no longer going to tell me he loves me.  Heaven knows why.

This morning JC was not well.  Well, not ill exactly, but tired.  I knew trying to get him to school was futile.  I let him sleep in.  I slept in.  I had weird dreams about the farm of my adolescence.  I dreamed about my mom.  I miss my mom.

I’m still in my pyjamas as I write this. It is 2pm and JC has not emerged from his room except for a late breakfast and to get his iPod.  I’m getting hungry so I better get showered and get us some lunch.

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Teenage Pregnancy Uncategorized

Teenage pregnancy – is it so bad?

Jay is still pregnant. 36 weeks and four days. Of course, this is a good thing, but there is no denying that we are now getting impatient. We just want to meet the little man that has continuously kept us on our toes for over 10 weeks now.  Jay is feeling very heavy, tired and exasperated and who can blame her.  Anyone who has carried a baby knows that those last four weeks are the most difficult.  you just feel like the size of a house and just breathing is an effort.

“Seriously, you would have thought that they would have come up with a more efficient way of having a baby,” Jay says.

I look at her quizzically.  “Who do you mean ‘they’?”

“I dont know,” she says impatiently, “but surely in the 21st century we should have a better way of doing this!”

I smile at how her young mind thinks that everything should have some technological solution. “Pregnancy is biological, there is no other way.”

“Well, there should be.”

Poor Jay. In the last final push, it is getting all too much. She looks beautiful though. Truly, the most radiant pregnant woman around. Everyone who sees her keeps telling her so.

I have changed my mind about having babies at a young age. I think we were meant to have them young. Young enough to carry them, and still enjoy a good body afterwards; young enough to play with them, enjoy them and still have energy for other parts of our life as well.  Watching Jay grow, both physically and mentally over these past nine months has totally changed my point of view.  Nature intended that we do this young, it is society that dictated otherwise. Now, less than 4% of babies born in Australia are to young mothers. I’m not suggesting for one second that teenage girls should rush out and get pregnant, I’m just observing that our bodies are better equipped for it at that age.

Pregnancy matures us in a way no other facet of life can.  We have no choice but to become selfless when we have another human being to care for. We no longer worry about our own needs, all we care about is that dependent little being. That process begins when  we first know we are growing a child inside of us. I have seen it with Jay – the fear on her face when at just six weeks they thought it might be ectopic, how she has given up food that she loves for fear of harming the baby, how she observes other moms (both young and old) and makes judgements on what she will and won’t do as a mom herself. At a young age, we are not too set in our ways.  We are more adaptable, able to cope with the changeable needs of our children. Yet, we tend to view children as the end of our indeoendence, the end of our lives.

My mom, herself, told me when I fell pregnant with Jay that I wasn’t ready, despite being a whole five years older than  her when she had me.  I was offended at the time, hurt even. I fell pregnant on purpose. I wanted my baby, yet here I was being told by the one person I respected and trusted the most that I wasnt ready. It would set me on a path of insecurity for a very long time. I second guessed myself as a parent all time. I don’t want that for Jay. I want her to feel supported, yes, but not incapable. She has already shown such capability. I could not be more proud of her.

Why is it that there has been this move to have babies later and later in life?  Has anyone thought there might be  a correlation between the increase in autism and the increase in age of women getting pregnant, like there is a correlation between women over forty and downs syndrome? As someone who has a child with autism, was 30 when he was born, I have.  There are many theories, but what if it is just the simple fact that we are meant to be younger when we bare children.  I know I’m not going to be popular for even thinking it.  Women have fought for decades, still fight, long and hard for the right to choose, but what if we have it all wrong?

I dont have the answers, and it would be a politicaly incorrect thing to research, but watching Jay grow and flourish, despite her complications, has me thinking.