An Unexpected Road
It has been 9 years since our first bundle of joy entered the world.
Little did we know that his world would be so different to ours!
After many long hours of trying to make his entrance, the first
hours of his precious life were perfect.
After a short time in the humidity crib to bring his temperature
up, Johnathon was wrapped up to maintain the warmth, and we returned
to our room for the beginning of our wonderful life together.
As a first mother, I found things a breeze, and I could feel the
envy of others around me. I was just happy to keep watching over
him. I was mesmerised. Twelve hours later, he was content to sleep
and was not bothered to feed. Then, under nurse's instructions,
it was time to make my first demands on him and insist he take his
first feed. It had been too long. A little too perfect!
It was the drive home that encouraged his first sounds of uncertainty.
I felt a sweep of sorrow and happiness overcome me, to hear such
a beautiful sound. Nothing he had endured in the first days of his
life was difficult for him to cope with. Little did I know why I
had been blessed with such an amazingly easy baby, nor did I care.
Over the next few months, he was still best left alone, spending
many hours enjoying his jolly jumper, with the unconditional love
from the dog lying under his tiny feet. His milestones continued
to be on track, with constant smiles and contentment, but he had
started to refuse to eat. The doctors kept telling me it was just
a stage. It is a stage that he has still not grown out of.
After two years, he had still not shed a single tear. The typical
bumps and bruises that toddlers encounter, would send him running
and screaming under the table or behind the nearest cupboard for
his own safe place.
I had a constant yearning for him to run and embrace me so I could
show him my unconditional love and comfort him. A bond I was still
unable to discover, and never stopped waiting for. It had to come
soon.
Johnathon was now two years old and there were four months to go
until his new baby brother was due to arrive and complete our family.
It was late afternoon and we made a visit to the hospital to meet
someone else's new baby girl. A lovely way to show Johnathon how
tiny his little brother will be. With little acknowledgement or
understanding, our visit was over and it was time to head home.
We entered the night sky with the car park lights shining down on
us, and made our way to the car, and then it happened. Our tiny
two-year-old began to scream intensely and literally run for his
life, not hearing our calls of desperation for him to stop. His
father and I ran towards him to embrace and reassure him that everything
was OK. Once I had reached him I could see the intense fear in his
eyes. His body was shaking and he had beads of sweat forming on
his forehead. He was still trying to get away. What was happening?
What had terrified my little boy? Then it dawned on me. He was afraid
of his shadow!
After days of introducing him to his shadow in many different lights,
with reassurance and showing him how everyone has one, our days
returned to normal, as we knew it.
Another long two and a half years went by and the outbursts became
more frequent with night sweats and palpitations often a nightly
occurrence. His one-track mind became focused on obsessions. His
milestones had slowly diminished and his two-year-old brother was
overtaking his abilities. Toileting regressed to daily wetting and
it was only a matter of time before his bowel problems became evident.
After fourteen months of medical appointments, bowel medication
and the constant pressure of putting these issues to the doctor,
I was told there was nothing wrong with him. 'Put his tea in front
of him, he will eat it if he's hungry'. I think he lost half a kilo
that month.
I took it upon myself to obtain an IQ test. A hearing and eye
test showed everything was within the average range. I even had
his tear ducts checked to make sure he had some! With no help from
the doctors, we had been managing his needs with strict routine,
little or no surprises and visual calendars. We were constantly
trying to teach him how to behave. He had few social skills, and
the ones he did have were most often inappropriate. (Continued over
page...)
I knew that my insistence with the doctors was warranted, but I
always had a glimmer of hope that they were right and he was OK.
The overwhelming devastation was an incredible burden and painful
road to travel, but it wasn't too long before I could see clearer
than ever before.
I had read about many disorders and disabilities, but none were
as clear to me than that of an Autism Spectrum Disorder. This would
explain his behaviour and his constant need for routine as well
as his literal thinking and actions such as holding his brother's
head on the bottom of the bath because 'he likes the water'. It
all started to make sense, and that was a relief on its own.
He was almost 6 years old when he began school, and was one of
the oldest in his class. He hadn't been in school for a month, when
the phone call came. Their concerns were major, even though I had
briefed them about his difficulties.
The school psychologist conducted a Connors test, and his scores
were indicative of a DSM IV diagnosis. I took this along to his
doctor and queried an Autism Spectrum Disorder, and was instantly
brushed off. He then diagnosed him with ADHD.
I did not accept this conclusion and after four more months, the
doctor and the teacher pleaded with me to consider trialing stimulant
medication. As much as I disagreed with using medication and the
diagnosis of ADHD, I knew I had to try something. So it began. There
was a slight benefit at the beginning, which I was grateful for,
but the year was completed with difficulty.
To the doctor's surprise, the stimulant medication did not help
him overcome his fear. It was not a surprise to me. We still decided
to leave him on the ADHD medication because he needed any help he
could get, even if it was only a little.
In his second year of school, he had the same teacher and he managed,
but once again with difficulty. Due to the side-effects of the medication,
he was eventually taken off it and the proof of how little it assisted
him became quite clear. He seemed to be more content due to the
diminished side-effects and it was becoming obvious that his teacher's
past efforts had been the reason for his Grade 1 success.
He started in Grade 2, with new teachers and a different room -
unfamiliarity. He had great difficulty settling in and a new battle
began. It was a year of meltdowns, meetings, suspension and restricted
timetables and the return of his night time panic attacks, which
he hadn't had for two years.
I needed something to help him learn those messages everyone had
been so desperately trying to get across to him. I had been given
plenty of information about Social Stories, but I still found it
difficult and confusing to put them together. Then I just started
writing them, and put pictures into the stories, directly targeting
his slap stick humour, and used many different emotional faces to
help him broaden and understand his feelings.
These stories were invaluable in helping to get those messages
across and help him learn. It had been months of the teachers telling
Johnathon he wasn't allowed to leave the classroom, as this had
become a daily escape routine for him. But such an open-ended statement
meant nothing to him. He could leave the classroom to go to the
toilet or go out for lunch, so why not when he feels overloaded.
'They never told me it was a rule,' he said, when I told him it
was. So I wrote him a Social Story for his book to take to school,
and from that day on, he did not leave the classroom. There was
the occasional need for a quick reminder of the rules when he darted
for the door, but he slowly started to remember that he must not
break the rules and remain in the classroom.
What a breakthrough, I couldn't believe the success of this fantastic
method that I could now use. There are less tantrums when it's time
to wash his hair, have medicine or go out. As much to my relief
and amazement, now he often knows what day it is and his concept
of time is improving.
I can now see a gleaming light at the end of the tunnel, and our
bond has started to develop. He has begun to join us in our world,
with the assistance of his calendar and the lessons from his Social
Stories book. Johnathon has begun to experience tears for the first
time and is starting to develop some understanding of all those
confusing feelings.
Kerry Martin
I am currently in the process of obtaining funding through the
local rotary club to have a Social Stories book printed and distributed
amongst the local schools and some associations. My aim is to assist
parents carers and professionals to realiase that Social Stories,
colour picture calendars and rules can be powerful tools to help
children like Johnathon learn social skills.
I have placed a copyright on my work to prevent anyone making
money on my ideas, as that is not my intention. I would be happy
to talk to anyone who is interested, please don't hesitate to contact
me. I would love to help anyone travelling that unexpected road.
Kerry Martin kbjr@dcsi.net.au
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