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.