Monday, 24 March 2014

What amazing choreography!

I think we dance the autism dance pretty well in our household.  It's a bit like any other dance.  When you first start learning you feel like a klutz (klutz is the best word when you see it written, isn't it?).  You stand on people's toes. You get the moves wrong.  People get flustered.  There are times when you want to give up, but then something reminds you that if you keep trying you might just get better, and so you soldier on.  The next time you try it is a little easier, you do it with a little more finesse, and before you know it you are a dancing professional.  

I was recently reminded of how much goes in to 'managing' Ollie's autism symptoms.  Because we seem to run like a well-oiled machine for the most part we often forget just what we do to ensure that he is minimally stressed and content.  At the beginning of the year when Ollie started three year old kinder we wrote a document explaining Ollie's challenges and what we do to manage them.  I thought it would be a few pages but it ended up being an epic.  Putting it on paper it really hit home that so much goes in to keeping our household happy.

It starts from the moment Ollie wakes up.  We know that when we open Ollie's bedroom door there is a possibility that he may have soiled his nappy overnight and tried to get it out with his bare hands.  We know that if anyone but me or his Dad open the door to greet him he will burst in to tears.  We prepare his breakfast of jam on toast, stat, and if we are not quick enough to put the lid back on the jam he will be in it with his bare hands.  If there is anything on his plate that he doesn't like he won't eat anything, even the things that he does like.  If eggs touch his lips he retches.  He eats half a kilo of raspberries a day, frozen, straight from the freezer.  The freezer, fridge and pantry all have locks on them or Ollie raids them and does strange things like eats fish fingers in their frozen state.    

There's the car.  We need to play the music on random or else he expects the songs to be played in the same order EVERY.  SINGLE.  TIME. and gets really distressed if there is a deviation from the expected order.  We know that he will become upset if we drive a different route to our destination than the route he knows.  Getting petrol is a nightmare and is best done when he is not in the car.

Warnings are essential for Ollie.  We need to brace him for what is coming all of the time.  If we are changing routine, if we are leaving somewhere, if we are taking something from him that we know he'll want to keep, if we're turning the shower off, etc etc etc.  Transitions from one activity to another are much easier if we warn him and in most instances count from five to one before making the change, and often take the step down approach.  An example of this is if he has the iPad.  We would tell him we're taking it, count from five to one, say 'bye bye iPad', and then give him something he likes a little less than the iPad - say a book.  Then we would repeat the procedure with the book, so instead of going from iPad to nothing, we're going from iPad to book to nothing.  It helps to ease the transition.

Speaking of the iPad, or any technology for that matter, it needs to be closely monitored for it to not get completely out of hand.  Ollie can get extremely fixated upon technological gadgets, and the more he has them the more fixated he gets, and the bigger the meltdown when we inevitably take them from him, or that battery runs out.  Batteries running out.  Shudder.  He becomes completely obsessed, and tries to find iPads and phones everywhere we go.  Very short bursts in a supervised environment are fine, but anything more is horrific.  We've got this under control now.  We don't let him use the iPad at all at home anymore, and very rarely let him use the phone.  We save it for when we REALLY need it, like when we have been in the waiting room for four hundred and fifty six hours  at the doctors (Dr Albert, you know it's true).  Now you know why I walk in to people's houses, look for phones and put them out of reach before Ollie sees them!

Speaking of walking in to people's houses, we need to make sure that there is no way to get out when we arrive at new places.  Does the front door lock? Are there gates at the sides of the house? Are the locks high up?  If Ollie was to wander out on to the street and become lost he would have no way of identifying himself.  He can't speak enough to do that yet.  He will one day, but not yet.  We have been in a situation where we have found him in the middle of the road so we can't be too careful.  

We know not to deviate from the lyrics of a song.  If Old McDonald Had a Zoo instead of a Farm then the world would come to an end.  We know not to whistle.  Whistling may get us a pinch or a scratch, however I more often than not get 'No Mumma' now instead (thank your higher power for the therapy we do!).  We know not to let him watch DVDs as the same order every time gets him stuck in a loop that he then expects every time.  We know that when the new Wiggles come on to the screen that he will run from the room covering his ears and crying.

Don't drive or ride past playgrounds unless you plan to stop there.  If we go to the community centre with Dad in the car then there is an expectation that we are going swimming.  Dad only comes to the community centre in the car with us when we swim.  Yelling ensues if we don't end up in the pool.
Don't say ice cream out loud unless you plan to give him ice cream, or else he will guard the freezer until ice cream is served, saying 'eye creams (how cute is that?)' over and over and dragging us by the arms.

If I kept going I would be here for days and days, but you get the idea.  We dance this dance well, but man what a calorie burner!  Most days it just seems normal.  Some days suck.  I am pleased to say that the gap between those days is getting further and further apart.  I can't remember the last time I cried.  This time last year I wouldn't have been able to tell you the last day I didn't cry.  We've grown.  All of us.  This is our normal.  It's not easy, but it's not horrible either.  It is a privilege to have such a beautiful, unique creature in our lives.            

Sunday, 1 December 2013

One year on.

This week marks a year since we first met with our paediatrician.  A year since the words 'He certainly has a very autistic flavour to him' were uttered.  A year since the veil of denial was lifted and we were able to see the blindingly obvious - that our Ollie has an Austism Spectrum Disorder.

What a year it has been.  There have been lows like I have never known.  There have been many tears shed. Fears have been realised. My teeth are slowly being ground down from all of the teeth clenching I have done. I have felt anxiety in the pit of my stomach more times than I care to remember.  Cooking chocolate has been consumed on numerous occasions.  I have been scratched.  I have been bitten.  I have been pinched. I have cleaned up faecal matter from the beautiful curls on Ollie's head and from various other locations.  I have helped our little boy to ride through periods of extreme anxiety in the best way I know how.  I have been frustrated beyond belief in my inability to ease that anxiety.  I have watched strangers stare at him, aware that something is not quite right.  I have wanted to escape to a desert island.

I have also watched Ollie blossom.  I have watched him go from a child who seemed not to care about anything around him to a child who sees joy in the every day.  I have listened to him utter new words, words that I didn't think I would ever hear.  I have heard him say Mamma.  I have heard him say Dadda.  I have heard him say Will.  I have heard him say apple approximately 956 billion times.  He now says 'Lub you' as regularly as I say it to him. I have seen him go from a child who says nothing to a child with developing language skills, and that was my biggest hope.  Spontaneous language has become real.  I have watched him learn the alphabet, and I have heard him count all manner of things.  He now acknowledges the arrival and departure of our nearest and dearest with waves ('wabing'), hellos and bye byes.  He makes contact with his eyes.  I can see Ollie developing every day and I am so excited about what will come next.

A year ago when Ollie was unofficially diagnosed one of the things I feared the most was the damage it may do to my relationship with Elloy.  I knew the stats.  Marriages are torn apart when a disabled child is involved.  I don't know what I was worried about.  All it has done has made us stronger.  I have been with this man since I was a teenager.  All of my adult life.  Nothing about any of this changes us.  We are rock solid, just as we always have been.  I couldn't do any of it without him.  He really is the other half of me.

Will.  A lot of the pain I felt when Ollie was diagnosed had to do with Will.  I worried, still do, about how it would effect him.  A year on I know that it is inevitable that it will effect him.  Nothing we can do changes that.  What I didn't realise was that many of the effects are positive.  Having a brother with an ASD will enrich his life, his personality.  Sure, there are shitty things about Ollie having an ASD.  Ollie gets irritated by Will at times and expresses that irritation by physically lashing out.  We are trying to teach Will how to manage when it happens and he is learning.  I need to remember that siblings fight and it is not always about autism.  Will is learning about tolerating differences at an age so young that it will be a part of his being without any effort.  He is developing in to a nurturing soul, protective of his brother and aware that he needs a different kind of attention.  He is respectful of those differences and I am enjoying watching him become a fabulous big brother.  The boys are slowly starting to play together and it is a joy to watch.  I so hope that they become fast friends.  Time will tell.  

And what of me?  I have grown immeasurably as a person in the past twelve months.  I have seen a strength in myself that I didn't know existed.  I have developed patience in truckloads.  I'm slowly learning to be bulletproof when confronted with ignorance and stupidity.  I have learnt that getting up and going to the gym at 540am doesn't kill me.  In fact it makes my days better, and it gives me the ability to continue to take care of myself.  I need to do that.  I have discovered that cooking chocolate really isn't that bad.

I am learning that most people are good and caring.  Many of my friends are showing me just how true that statement can be.  The interest that people show in Ollie and learning what makes him tick makes me teary on a regular basis.  We have such good people in our lives, and Ollie's diagnosis has meant that we have been blessed with many new friends whom we never would have met.  Our network is increasing every day and I feel buoyed and supported by friendships new and old.  

I couldn't care less about my career.  I doubt there are many people that at the end of their days say that they wish they worked more.  I couldn't care less about material possessions.  I am lucky to have them, but they don't define me, don't define us.  I have come to realise that all that really matters is that we love one another.  These are the cards we have been dealt.  I can't change that.  What I can do is love my boys, all three, with every fibre of my being. That will never change.  

Tuesday, 5 November 2013

Please don't let that be me

I have had several conversations lately with people whose ASD children are a little older than Ollie.  I really enjoy seeking the perspective of those who are a few years further ahead in the craziness that is having a child on the autism spectrum.  The wisdom that people have imparted has been and will continue to be invaluable.  There is, however, something that often comes up that worries me.  

So many people are terribly jaded.  It is as if every day is a battleground, a fight against the general public.  The school yard is full of other parents who are to be feared and loathed, no one understands and everyone is the enemy.  It is us versus them.    

People keep telling me that I will lose my optimism, my positivity, my belief that people are generally good.  That in ten years time I too will feel the anger that they feel.  That I'll be one of them.  That I'll walk in to the school yard full of hatred for the other parents, the parents of 'normal' children.  That I will sit at home seething about all of the parties that we aren't invited to, all of the friends that Ollie isn't making, and all of the fun we are missing out on.    

No.  Just no.  

I refuse to believe that I will feel that way.  It won't be me.  I will continue to believe that people are generally caring and good.  Recent experience has shown me that yes, people say stupid things, but I don't believe that they are coming from a bad place.  They just don't know what the right thing to say is.  If we continue to be defensive and oppositional then they will never know the right way.  All they will learn is to stay away.

Maybe Ollie won't be invited to all of the parties, but me being a first rate bitch in the school yard isn't going to help that any, is it? Sure, he is going to have difficulties with making friends, but that won't be the fault of the other parents.  That is something inherent in people with an ASD.  Hating those who don't have the same problems isn't going to change that.  His life is going to be different, but not less.  

I am by nature optimistic and positive.  I like people.  I believe in people.  I also believe in myself and I won't let anyone take that away from me.  This is how I am going to stay.  I promise myself that.  



Wednesday, 23 October 2013

To tell or not to tell?

As I mentioned on my Facebook page, I had a really negative experience this morning with someone's reaction to Ollie's autism.  It has made me rethink my position on being open and honest with everyone about his diagnosis.  Here's what happened.

Will and I picked Ollie up from occasional care.  He spends one morning a week there and it is so good for him.  It was a bit of a rocky start but things are going really well.  When we arrived Ollie was standing at the door crying (not unusual when he sees other mothers arriving and is anticipating our arrival).  One of the carers told me that there had just been an incident where Ollie had hurt another child.  He was playing with a toy and she tried to take it off him so he pushed her (just quietly, how normal does that sound?!).  She was only little, just walking.  There was no damage done and she was not upset.  The mother of the child was there when the incident occurred and was still there so I approached her to apologise.  I told her that he had autism.  Her response was 'I know, it is just that she is little.' and then 'Is it good for him to be with normal children?'.

Her comment completely threw me, and those of you who know me will know that I am not easily thrown. All I could manage to say was 'Yes. Yes it is.'. I felt tears coming and fought them until she had left but couldn't hold them back before we too exited the building, damn it. The carers, who I should add are ABSOLUTELY FABULOUS AMAZING WOMEN!, saw that I was upset and I told them what she had said.  They were all very supportive, reassuring me that of course he was meant to be there etc etc.

The thing is, I know that.  I have no doubt in my mind that he has just as much right to be there as any other child.  That will never change.  All of the people I have come across thus far agree, or at least outwardly appear to agree.

My stance has always been that we should be open and honest about Ollie's diagnosis.  I have many reasons for this stance.  I want people to understand him, and without knowing he is on the spectrum they never will.  It is not like asthma.  Autism is an integral part of who he is.  It wouldn't be fair to him if we kept it hidden.

I also strongly believe that the stigma associated with autism is perpetuated when people choose not to disclose the diagnosis.  I am not ashamed of Ollie's autism.  There is nothing to hide.  He does not have an infectious disease.  I am really sorry to all of you who are reading this who have chosen non-dislosure.  I don't mean for this to be an attack.  I know that you are doing it to protect your child.  It is just not what we have chosen for our child and I will be honest that I don't understand that choice.  It doesn't mean that we can't be friends!

Back to today.  So many things have gone through my head, the first being that perhaps I misinterpreted what she meant.  Maybe she was genuinely asking 'Is it good for him?'. Everything was said without hostility or aggression.  There was a language barrier.  I don't think I am wrong, but I just don't know.  My first line of defence should not always be defensive, and I don't think it is, but this is my child we are talking about, and sometimes I feel like a lioness with her cubs.  Don't mess with my kids bitch!  Maybe it was a little bit of both.  Who knows?  I suppose in the coming weeks I will be able to read her intentions more clearly during drop off and pick up.  I'll keep you posted!  

Regardless of my interpretation it still begs one question - did my disclosure of Ollie's diagnosis change the way this situation was perceived? If Ollie was a typical child (shop speak is neurotypical, or NT) and he pushed the little girl for trying to take the toy, all he would be doing is behaving as children do.  I know plenty of children, including my older neurotypical child, who have reacted physically when another child has touched what they perceive to be their belongings.  It is completely developmentally appropriate.

In fact had this situation occurred when no parent was present I doubt it would have even been reported back, in the case of two typical children.  There have been a few times across the year where I have thought 'Would you be telling me this if Ollie didn't have an ASD?'. Sometimes we, and I put myself in this category too, are so quick to pathologise what really could be the typical behaviour of any toddler.  We need to remember that they too are kids learning to navigate the world.

Do I sometimes do Ollie a disservice by telling people of his diagnosis?

I don't have an answer to this question and I suspect that there is no answer.  I think the benefits of disclosure far outweigh the benefits of keeping it hidden.  I will however pause for a just a second to think on it next time.

I'd really love to hear your thoughts on this topic.  Please comment on my Facebook page.  As with so many issues there are no right or wrong answers, and we must remember that differences of opinion should be celebrated.  :-)

Tuesday, 15 October 2013

How did it feel? Moments in time.

I have been asked many times how I felt when Ollie was diagnosed.  I'm trying to piece it together but can't quite seem to make it all fit so I thought I would present it in the same way that it is in my head.  Here is my stream of consciousness.  

I have a headache.  All the time.  I have realised it is because I am constantly clenching my teeth.  Even in my sleep.  

I can't stop crying.  It has become normal for me to have tears streaming down my face. I wake up at night and the tears are still there.  I don't think I can stop.  

All I think about is autism.  I can't get it out of my head.  In every moment of spare time I pour over the internet, reading reading reading about autism. 

My stomach churns every time we have an appointment.  I feel hollow in the pit of my stomach.  I have lost three kilos in a few weeks because I keep forgetting to eat.  

I read somewhere that I won't feel like this forever.  That it will get better.  I can't see how that is possible.  

There are so many treatment options.  We need to make the right decision but I feel completely overwhelmed by the information.  It must be right.  

It is so hard to tell people without completely falling apart.  

Every time I think about how this will effect Will I am a mess.  

I know things are getting better when I can talk about it without crying.  Maybe what I read was right.  Maybe I will be okay.  

And you know what? I am.  

Tuesday, 8 October 2013

If it wasn't for autism

If it wasn't for autism...we would be able to buy a much bigger house.

BUT you know what? We are happy here.  We always have been.  The size of our house has nothing to do with the quality of our life.  We have created so many happy memories in this house, been through so many life changes under this roof.  I love this house.

If it wasn't for autism...we would not need to draw every single word out of Ollie.  One.  At.  A.  Time.

BUT you know what?  We celebrate every new word in a way that we never would if Ollie didn't have autism.  We have learnt to appreciate every small step in his development and we revel in each and every word that comes out of his mouth.  We notice every single detail.  Autism really has taught me to take time to smell the roses in every aspect of my life.    

If it wasn't for autism...I would be buying more expensive clothes for myself.

BUT you know what? My favourite singlets are from Big W.  Six bucks each.  I have four different colours.  I never would have found them if Ollie wasn't diagnosed with autism because I wouldn't have looked in Big W for singlets!  Material possessions do not a happy family make.  It is love that makes us tick and no money can buy that.  We have love in abundance.  

If it wasn't for autism...Will would have a 'normal' sibling.

BUT you know what?  Will is going to be a better person because of his brother's autism.  We all are.  He will learn compassion for those who are different and an understanding of diversity at a level that he never would if autism wasn't in our lives.  Will also gets many hours of one on one time with me while Ollie is at therapy.  That wouldn't happen if Ollie didn't have autism.

If it wasn't for autism...I would have more time to socialise.

BUT you know what? I have met the most amazing people because of Ollie's autism, people who I consider true friends.  There is a bond that ties us all together and we all need each other. We need people who get us, get our children, get what we are living.  These people would not be in my life if it weren't for autism.

I don't mean for this to be one of those posts about how we have been blessed by having autism in our lives, and that we wouldn't take it back if we could.  If I could take it back I would.  In a heartbeat.  I've got plenty of 'If it wasn't for autism' moments that don't end in a BUT.  They just suck.  There are times when I want to kick autism's arse.  I didn't sign up for this.

It is true what they say though.  Every cloud has a silver lining.  In this case the cloud is big and dark and scary, but that makes the lining big too.

Do you have any 'If it wasn't for autism' thoughts you would like to share?

Wednesday, 2 October 2013

Our very hungry caterpillar - a week in the life.

People often ask me how much time Ollie spends in therapy each week so I though I would tell a little story about a week in the life of our curly haired monster.

The Very Hungry Caterpillar

In the light of the moon a little egg lay on a leaf.

One Sunday morning the cloud was lifted and - pop! - out of the egg came a massive and very anxiety provoking diagnosis.

The caterpillar started to attend some therapies.

On Monday he ate through one 45 minute speech therapy session, but had to go to Grandma and Grandad's first to drop off his brother Will.  He then ate through one three hour Applied Behavioural Analysis (ABA - I'll get to what that is later) session.  Off to Grandma and Grandad's again to collect Will.  But he was still hungry.

On Tuesday he ate through another three hour ABA session.  While he was at this session his Mum dropped his brother off at kinder and then came back to collect him.  An afternoon of rest followed, after which time he went with his Mum to pick up Will.  BUT he was STILL hungry.

On Wednesday he ate through one three hour session at a mainstream occasional care centre so that he was able to socialise with typical children in a typical environment.  He then came home for lunch, took his brother to kinder, came home for some rest, and then went back to kinder to collect Will.  BUT he was STILL HUNGRY.

On Thursday he ate through yet another three hour ABA session.  He was lucky that on this day he had no more appointments and was able to rest.  BUT he was STILL HUNGRY!

On Friday he dropped his brother off for an early kinder session and then ate through his last three hour ABA session for the week.  After being picked up he went with his Mum to collect his brother.  In the afternoon he spent some time with his Grandma and Grandad.  BUT HE WAS STILL HUNGRY!!!

On Saturday he ate through his favourite part of the week, his swimming lesson, and then spent some time with his Nanna, Papa, Uncle and cousins.

The next day was Sunday again.  The caterpillar ate through a nice day of playing and relaxing (sometimes involving an ice cream from Dairy Bell) and after that you would think he would feel much better but he really preferred the routine during the week.

Now he wasn't hungry any more - and he wasn't a little caterpillar any more.  He was a caterpillar that was filling up with new skills, new ways to cope, and new ways to communicate.

He built a small cocoon with these new skills, and when he pushed his way out...

he was a beautiful butterfly.