Since my particular experience has been with Asperger’s Syndrome (now known as autism spectrum disorder), I am most comfortable with that specific frame of reference. I stumbled into the world of Autism and Asperger’s in particular when my firstborn son, James, was diagnosed in 2005. This was over a decade ago. I had read about Asperger’s, and being a mother who was also a teacher, I began to connect the dots when certain alarm bells began to sound: “has difficulty socializing”, “is very sensitive to noise”, “dislikes certain textures and smells intensely”, “obsesses about certain games or stories”.
Since I was not an expert, I took James to Kerry Salvesen. An ex-pupil of mine from Westville Girls’ High who had since qualified and begun to practice as an Educational Psychologist of excellent repute. After all appropriate testing, Kerry reached the conclusion that James was presenting with many of the characteristics of Asperger’s. Here began an overpowering, all-consuming journey for me. I decided that, since James was going to need to live and cope independently in the world, I would attempt to keep him in mainstream education for as long as he could cope. We would take the school and socialization issues one day at a time.
The biggest challenges that we faced with James were those of bullying and frustration at his inability to read social cues and body language well. Since I could not control his daily experiences, I began to actively teach him to “decode” facial expressions and body language. I taught him what each stance and expression meant and how to respond to them appropriately. It took patience and time, but he got to the stage where he was able to cope better and avoid most conflict situations.
Our younger son, Cameron, had many developmental delays. He only toilet trained and spoke at the age of four. We were so pre-occupied with the challenges of daily life with James that we worked around Cameron’s delays without becoming too alarmed or needing any formal answers. By the time he had completed pre-school, having spent two years in Grade R, we had noticed that his challenges and strengths were very similar to his brother’s. The most noteworthy differences were that Cameron thrived on being the entertainer; he was affectionate and loved to cuddle. So, he could memorize stories and mimic sounds and accents, he obsessed on certain topics. Was it Asperger’s? We simply accepted that this was the case, and his teachers all fell in with that thinking, noting the same similarities we had between Cameron and James. The result of this assumption was that we did not seek formal testing until Cameron was much older. He was in Grade 4 when I was told there were just too many gaps in his development. He was not flourishing, and perhaps, for him, it was time to seek Special Needs Education.
Cameron was tested by a local Educational Psychologist, and we had a formal diagnosis of Asperger’s Syndrome together with Dyscalculia. We also had a formal recommendation that we should seek admission for Cameron into a Special Needs School, as his abilities were clearly limited. I thought very long and hard about this, and decided to disregard the recommendation and persevere with mainstream education. Why? I knew, from experience with James that it was possible to progress in mainstream with extra work. I was not prepared for the results of a few hours of testing that would define my son and set limits on his potential in such a restricted way. With all due respect to SNE and the wonderful, saintly people who work in remedial teaching, I was determined that we would discover what was possible and not be limited by negative boundaries.
Looking back on the road so far, I have no regrets. My boys have not been medicated. They have been encouraged and loved. They have not been excused from living in the real world, they have been taught to be brave and cope.
Today, James is a Grade 10 learner at Howick High School. He is a pretty average achiever. He is accepted and supported by his classmates, and very well loved and nurtured by the incredible staff. He does not enjoy success as a sportsman, but he does make a sincere effort to be involved in Rugby.
Cameron has made it through to Grade 7 at Richmond Primary, where his classmates and teachers accept his quirks and eccentricities. His academic achievements are unpredictable to say the least. Ranging from 90s to outright failures. He is a monitor, and participates in all aspects of school life.
Our challenges have been eased because of the support of loving grandparents, occupational therapists and teachers who have gone the extra mile to understand and encourage. Their roles in keeping us all focused on what was going right, instead of the long and tiring road we were travelling will never be forgotten.
Together, we are weathering the storms of their teenage years. They are like any other teenagers, with the same questions and the same dreams. I am naturally concerned about what the future holds for these two special boys of mine. But I have learnt that too much worry will rob me of the joy that exists in the small moments of victory. The odd smile, the good days, the insights gained and memories made…these have been the fruit of hundreds of hours of a patient and loving struggle. I am determined to enjoy every moment.
They will be what they will be, but they will be that fully, and with pride. I am beside them to diffuse the pressures of the world for now, but they are learning to stand alone, and make their way in the world. For them, there will always be a brother who understands, who inhabits the same alternate universe. That is a blessing that is rare.
I consider them my greatest teachers, and every day is a new lesson that I cannot wait to learn.
As a teacher, I have always believed that every child has their own kind of genius, no matter how they are labelled by the system. All minds have been created for a future purpose that we cannot know, and we should respect that.
So, here’s to raising children on the Autistic Spectrum who are valued and happy, ready to be whom they were created to be!
James and Cameron…two very different peas in the Asperger’s pod
A little inspiration that I often refer to.