Thursday, 24 January 2013

Our story so far...

Our first son, Will, was born in 2008.  What an insane time it is when your first child arrives.  There is so much anxiety, so much learning to be done, so much joy.  Will progressed as predicted.  He has always been such a people person, smiling and talking to passers by, engaging anyone who will listen to him in conversation and activity.  He was conversational at a very young age.  He was able to speak in full sentences by the age of two, which made the arrival of Ollie in 2010 a lot easier on him as we were able to tell him what was happening, and he understood. It was such an easy transition from a one child to a two child family.

There was so much joy again to be had when Ollie was born.  As is common with most mothers I was unsure that I would be able to feel a bond so strong with a second child, but when he emerged the bond was instantaneous.  I should never have doubted that I would feel so strongly.  Ollie was a really easy baby, settling in to a sleep routine early, loving cuddles, and meeting all of his developmental milestones at the expected age.  He walked a little later than most, but so did Will so we didn't think anything of it (and still don't to be honest).  He started saying words at around the time that most kids do and we had no concerns about him, until he was two.

When we took him to his two year old appointment with the maternal and child health nurse she appeared to be very happy with his progress and wasn't at all concerned that his speech hadn't picked up as quickly as most children of his age.  We weren't concerned either.  Yet.  She said to wait until he was two and a half before worrying.  To Wait and See.  But then I went away and I thought about it.  I started to realise that there were plenty of words that he had stopped saying.  He once said 'ater' to signify water, but now he just reached for the bottle.  He used to say milk but now he just opened the fridge.

My mother expressed concern that maybe he had a hearing problem.  My brother had trouble with his ears when he was a child and this effected his speech development.  At this stage we all but decided Ollie was deaf.  It was such an easy explanation.  Easy to explain and easy to fix.  I phoned the maternal and child health nurse and spoke with someone other than my regular nurse.  She sounded very concerned when I told her about Ollie's lack of speech and loss of speech.  She asked more questions about his behaviour.  Big red flags started to appear, ones that I hadn't even thought of before.  Ollie didn't point.  Red flag.  A friend had mentioned that the teachers at her child's kinder were concerned that her child walked on his toes as this was a characteristic of autistic children.  Mr Right, my husband, highlighted that Ollie walked on his toes quite a lot.  Red flag.  That same friend subtly mentioned some other autistic traits in a message.  Flapping.  Running on the spot.  Playing alone.  Red flag red flag red flag.

We arranged to go to an audiologist and I clung to the belief that he was deaf.  As the title of this blog suggests, he was not.  You would think that we would have been over the moon after receiving the news that our child had perfect hearing.  We were not.  We were both disappointed.  It meant that there must be some other reason why he wasn't yet talking.  The A word was looming large in my mind but I pushed it back.  Hard.

It was about then that my denial set in.  I mentioned our concerns about Ollie's speech to my nearest and dearest.  He's a late bloomer.  Second child.  Boys always take longer to talk.  Will has given you a false idea of how speech develops because he did it so early.  He's perfectly normal.  Will talks for him.  I know someone who didn't talk until they were five and then they started talking in full sentences.  Wait until he's two and a half.  Wait until he is three.  All of these were well meaning comments that helped me to live in a state of denial for that little while longer.  They were all right.  There was nothing wrong with our child.  Perfectly normal.

I phoned our maternal and child health nurse yet again to let her know that the audiologist had found no problems with Ollie's hearing.  It had been suggested previously that we should come in to do an assessment called the Brigance if his hearing test appeared normal.  We made an appointment for a few weeks down the track.  In the meantime I spent hours trawling the internet looking for information that could help me to explain away what I knew in my heart of hearts to be true.  It was during this time that I stumbled across a blog that terrified me.  It was a post titled So You're Wondering If Your Child Might Be Autistic on the blog Flappiness Is.  This blog remains one of my favourites.  Go and check it out for a wonderfully well rounded, positive yet no mucking about read about life with a child who is on the autism spectrum.  I will forever remain indebted to this woman for dragging me out of denial and in to action mode.  Denial is comfy but it doesn't help anyone in the end.

I digress.  This blog post listed common traits in autistic children, along with her own behaviour when she was first faced with the possibility that her child may be autistic. She was me.  Her child was Ollie.  What she had written was my life, Ollie's life.  If was as if I had taken to the laptop and written the post myself.

In the post, after she written all of the potential red flags (all of which resonated with me), she wrote 'so now the theme to Jaws is playing in your head'.  Yes.  Yes it was.  I was all of a sudden sure that Ollie was autistic.  I cried.  A lot.  I tried to wait until the kids had gone to be at night to mention my fears to Mr Right but I ended up just blurting it out when we had a brief moment to spare whilst in the midst of the dinner/bath/bed routine.  He read the post and didn't agree that Ollie fit her description.  He was still worried, but he didn't want to automatically skip to autism.  I spoke to my parents.  My fears were alleviated once more.  He's just a late bloomer.  He's only two.  He's fine.  I can't see any of the things that you are worried about.  I once more surrounded myself in a cocoon of denial.

We went to the maternal and child health nurse once more for her to administer the Brigance Early Childhood Screen to check Ollie's development.  I had looked up what the test entailed before the appointment and knew that he would not do well, and during the test I unknowingly assisted him to 'do better'.  I stretched truths.  Mr Right told me afterwards that I was very defensive during the appointment.  I didn't mean to be.  I was still desperately clutching on to the hope that our son was 'normal'.  The nurse was concerned.  I could see it in her face.  She suggested that we should be referred to Early Childhood Intervention Services (ECIS) but didn't really tell us what that was all about, and because I was trying to normalise everything I didn't ask.  I didn't want to know.  All she told us was that there was a minimum of twelve weeks wait to receive a phone call from an intake worker.

I was able to put my concerns on the back burner after that.  We decided to take the wait and see approach.  It was on my mind every single day but I managed to believe that everything was ok.  I discovered that a woman from my book club was a speech therapist and spoke to her about our concern that Ollie had not started talking.  I could see in her face that she thought there might be something more that just late speech development at play.  She suggested that we go and see a paediatrician rather than a speech therapist as our first port of call.  I phoned another speech therapist who was recommended to us, and she suggested the same thing, although she managed to alleviate my fears, saying that a lot of kids with late speech mimic the symptoms of autism.  She said a lot of two year olds walk on their toes.  She was right.  He was fine.  He was normal.

I looked on the internet for paediatricians and after doing some research settled on Dr Who and made an appointment six weeks from then.  I again settled in to denial, but it was always in the back of my mind, always lurking, and every day the A word surfaced in my head.  I compiled a list of our concerns in my phone in case we became nervous and forgot the details when we were at Dr Who's office.  The list was a mile long.  Who has a list like that when their child is 'normal'? By the time we got to Dr Who we were both in a really positive frame of mind regarding Ollie and expected the paediatrician to tell us to come back in six months.  To Wait and See.  He didn't.

I became upset during the appointment, and Dr Who said 'That is understandable. This boy has some problems.'.  Bomb shell.  It was then that I realised that he wasn't going to say that everything was alright.  To Wait and See.  He said that although he would normally be loathe to mention a diagnosis in the first appointment that Ollie had a very autistic 'flavour' about him and that he was fairly certain he was mildly to moderately autistic.  Massive bomb shell.  The rest of the appointment is a complete blur.  He told us that we now needed to go and see a speech therapist, a psychologist, and to have a urine test done.  I, we, were in a massive state of shock.  Odd given that in my heart of hearts I already knew, but the mind plays funny tricks on you as a defence mechanism, and I had been in full defence mode.

Stripped of denial I watched our son and though 'Of course he is bloody autistic!'.  How could I have managed to dismiss so many truths about him? The toe walking.  The repetitive movements.  The lack of eye contact.  The speech regression.  The lack of pointing.  The list went on and on.  It was all so clear to me, and a wave of relief crashed over me.

We knew.  It was true and it was ok.  No more denial.  No more Wait and See.  No more is he or isn't he.

We both went to the car after our appointment and had a big cry.  I continued to cry for days and days.  Mr Right said that he didn't want to cry anymore because there was nothing to be sad about.  He was right.  Ollie was still Ollie.  Life for him, for us, would be different to the script, but you know what? That was ok.  We were going to get this beautiful boy the help he needed and we were going to remain the happy family that we always had been.  This would change things, but it wouldn't change that.

I went back and re-read the post written by Flappiness Is, the one that had terrified me.  This time it didn't terrify me at all.  This time it filled me with hope for the future.

    'You will need to remember that your child has not been taken from you.  This is the child you were given all along.  And no one, no one, is better suited to be his champion.  You are allowed to cry.  Try not to do it in front of him.  And then you are going to have to put on your proverbial Big Girl (or Boy) Panties.  Suck it up.  You already knew you'd walk though fire for him.  So suit up.'

Flappiness Is.

Well I am suited up.  Bring it on.  Whatever the future may hold for our little family, I am ready.  



Friday, 4 January 2013

And so it begins...

I have ummed and ahhed about whether to start this blog.  It seems that every mother of a child on the autism spectrum writes a blog.  I have read so many, and I have gained so much from that reading.  Maybe I can help others through my writing, just as others have helped me.  I want to diarise the 'journey' (I despise that term but it really is fitting in this circumstance) that we have recently commenced with our little Ollie.  What better way to do it than with a blog? Here goes...