Saturday, October 9, 2010

The diagnosis

Walking toward the Royal Children's Hospital on a late spring sunny morning felt almost joyous and exciting.  My eldest son, sitting in the toddler seat of his pram, was delighted to be out and about, the youngest was safely tucked underneath him.  As usual, I would point at every familiar thing around us, naming them in order to get a reaction from my three year old little boy.  "Look Gaston:  a cat! a car! a truck!"  As usual he would not even turn his head to look at any of them.

Would I get some answers today?  Why was he so aloof at times?  Why was he not speaking like the others?  After all, nothing could have been so terribly wrong.  It  had been six months since I had raised concerns about his behaviour and lack of speech and everyone, professional and otherwise, had been so quick to dismiss anything too serious.  There were always some logical reasons for everything that worried me, it seemed.

We are a French-speaking family, so the health nurse would rationalise that the bilingual factor would delay his speech.  Meanwhile, my mum was adamant:  "Darling, he is gifted.  Gifted children are always a little different."  Most of my friends were fed up hearing all about my so-called troubled toddler, possibly thinking I was neurotic.

We had already been through the grommet experience so I knew it wasn't anything mechanical.  He could hear well now and without any tangible explanation for his  lack of speech my husband and I went back and forth between frustration and denial.

Each tantrum felt like a crisis.  The simplest of everyday tasks had to be planned like a coup d'état in order for life to run smoothly.  Smoothly enough, anyway, to  allow us to pretend a little longer that he would eventually grow out of his extreme behaviour.  His hyperactivity was swiftly blamed on his gender and toddlerhood  but in my heart I suspected more and more that not all was well with my baby.

So that day, walking to the hospital, I would get help, I thought.  The doctor would tell me that it was nothing too bad and how to fix it.  I felt relieved that the difficult  times would end.  Those were probably my final thoughts before my life took a drastic turn.

The doctor was a she, dark, tall and surprisingly young.  I am fair, short and probably a decade older than she was.  I felt intimidated.  Why was I here?  I wanted to  escape.  Yet I started answering her questions while Gaston was playing repetitively with her office door handle.

I began to tell her how wonderful my son was.  Yes he was odd but so bright, telling her how from a very young age he was able to organise his blocks in shapes and  colours and so fast at that!  She listened and in a soft spoken voice thanked me for giving her such a comprehensive description of my son's behaviour.  Looking at  her with bright eyes, I then summoned up the courage to ask what were her thoughts.

"Asparagus", I heard her reply.  Asparagus?  What was asparagus, I wondered.  It could not be too terrible being named after such a harmless vegetable.  Was I  supposed to understand what she was saying?

Suddenly, a speech pathologist and occupational therapist entered the room.  I was introduced.  I kept on smiling while feeling so overwhelmed.  I kept silent to keep  appearances and not sound too clueless.  A "spectrum" was mentioned.  English being my second language,  I could not grasp the whole meaning of the word:  it  reminded me of a rainbow.  A rainbow:  another friendly thought.

The meeting came to an end.  The soft spoken doctor assured me that it wasn't anything I had done or not done and gave me three phone numbers to go home with:  a public speech pathology service, Autism Victoria and Human Services.

None of it made much sense.  My children were oblivious to all the drama unfolding.  I looked at my toddler, it struck me that he was exactly the same loving child  than a couple of hours ago.  So why was I feeling so hollow suddenly.  Asparagus.  What was that asparagus thing?

Another appointment was made for two weeks from then.

At home, the phone started ringing.  I had so well-publicised that long-awaited appointment among my friends.  They were all so keen to find out the verdict:

"So, what did they say?"

"I am not sure.  They mentioned Asparagus." 

A brief silence followed.  "I think you mean Asperger's."

"Really?  What is it?"

My friend straight away welcomed her internet services for me to find out.  A short time later, printing frantically any information I could find, I felt no closer to a true  answer.  The word "autism" popped out readily.  And my heart was feeling heavier as the day progressed.

Back home once more, the phone rang.  My mum's voice greeted me in French.  The sound of a familiar loving voice in my maternal language proved to be a catalyst.  Like in a dream, I heard myself saying aloud those fateful words:  "Mum, I think my little boy is autistic".  The pain descended on me all at once, and the tears fell like the four walls of a jail around me.  The sound of panic and helplessness in my mum's voice reminded me that I did not want to worry her so much, so far away.  I suddenly calmed myself down.

Only as a mother can and with all my strength, I went about keeping the children's routine that evening.  My husband, Alain, who had always believed I was overreacting, came walking through our house at the end of his working day.  He had forgotten about my appointment at the communication clinic.  I remained quiet for a few minutes before exploding into a tearful tirade.  "The doctor thinks Gaston is Asperger's".  He looked at me blankly and replied:  "That's all?  Half of the maths department at my old university is Asperger's".  I looked at him confused and in shock, torn between the facts that one more time my concerns were being dismissed and the feeling of relief that perhaps it wasn't as serious as I first feared.

The following two weeks were about keeping busy and doing familiar outings to the parks with our friends, friends who were trying to cheer me up by questioning the diagnosis.  I had dutifully rang the three phone numbers given to me.  The speech pathology service warned me of a minimum six month wait while a secretary added my son's name to a list.  A message on Autism Victoria's line informed me they were closed for refurbishment during the whole month and finally Human Services had to turn me down having not yet received any information about us form the Royal Children's Hospital.

Those horrible two weeks were turning into an eternity.

When D day finally arrived I had convinced Alain to meet us there.  He had taken time off work, still wearing his suit and a stern looking face, indicating that it had better be good, he and I entered  the office.  Today, we were meeting the big gun, the doctor in charge of the clinic.

She entered the room.  She  wore an expensive suit, appearing detached almost aloof.  It must be hard having to break such bad news to parents on a daily basis. After being introduced, my husband became defensive right away.  "How could you possibly tell us after such a short meeting, our son is Asperger's?"  He was furious.  Her face hardened.  "Actually, sir" she replied, "your son is not Asperger's.  He is autistic."

My heart broke at that exact moment.  It was the first time it had been said so clearly and unmistakeably.  Asperger's kids, we were then told, had good speech while 50% of other autistic children would never learn how to speak. The challenges my child was going to face became so very real.  I suddenly stopped listening and from then on began concentrating on remaining strong because I knew that once the tears would come I would not be able to stop them.

It is always said of people facing life's great challenges how brave they are.  The truth is you do not have a choice.  That day it took a long while for my husband and I to talk.  Having lunch at a McDonald's downstairs from the hospital as if nothing had happened, the tears filling up my eyes, with other sympathetic parents looking on and wondering what my bad news was, I realised I was now part of this very special club, being the parent of a child with special needs.  A club that, to this day, I cherish for all the support and help it procured me with.

Six months later my youngest son , Rémi, was also diagnosed with autism.  A life of therapy then began, therapy we  had hoped would help their development.  I have learned since that autism is not a developmental delay.  A delay would imply the possibility of catching up.

Three years on, I am now the proud parent of two beautiful autistic boys.  My love for them has never changed.  Everyday life is still very complicated.  I had and will cry many tears thinking about what could have been.  It is still a constant challenge managing the sadness which, at times, overwhelms me.  Almost like a full-time job, you have to keep it in check working not to let it take over everything.  I am learning to let go of the expectations and not to compare my boys to my friends' conventional children.  I am trying to appreciate their childhood and our very special family life as it is, celebrating their progress even when I know they always will be in parallel to the others.

Our boys attending special school has left us, as a family, a bit isolated.  It is important for me to remain in touch with other parents and friends in the neighbourhood.

Autism is often misunderstood and always dramatized in the media to the extreme.  My children are average children living with a disability.  They are no savants or "Rain Man".  They are loving and willing to share if given a chance, regardless of their lack of speech.  It is so easy to give up when confronted with the unknown.  Being different should not be a source of shame.  We should be allowed to be different.