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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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