Due to the length of this story and my half-hour daily writing limit, I wrote it over the course of two days. Instead of publishing two separate posts, I decided to combine them into a single one.
When I was pregnant with our son, Paul often played the song "With Arms Wide Open" by Creed. In a way, it became his lullaby. Paul looked forward to teaching his son everything, but due to his illness, that responsibility ultimately fell to me.
Of all the challenges I’ve faced in my life, motherhood was the most difficult. That, and profound loss. I had to come to terms with the fact that everything I said, did, and decided - no matter how small - could ultimately influence how my son grew up and who he would become. It was a tremendous responsibility.
At the time, we didn’t know that my son and I were on the autism spectrum. I was just "uniquely weird" and my son had ADHD and separation anxiety. He also had a speech impairment that was eventually resolved with dental work in his teens, which made communication incredibly challenging.
As a child, he was never really "naughty", but he was temperamental and often threw intense tantrums. At first, I responded with anger too. One day, though, I realized that if I couldn’t control my temper, I wouldn’t be able to teach him to control his. Once I learned to manage my own emotions, I began analyzing - and sometimes over-analyzing - his behavior to understand its causes. I discovered that his frustration and anger stemmed from his speech impairment. People didn’t understand him, and he struggled to express himself. So, eventually, he started throwing tantrums, instead of communicating.
Once I realized this, I took the time to really listen so that he felt heard, despite his disability. I also had to deal with strangers telling me I was a bad mother and there was no discipline in the house, to 'friends' who said that all he needed was a good spanking.
Schools presented the greatest challenges. Teachers in mainstream schools were not equipped to handle special-needs children. They grew frustrated with me too. When they tried to talk to me, I often seemed aloof and emotionless. I was in permanent problem-solving mode. I couldn’t afford the luxury of emotions. Emotions cripple - they prevent clear-headed, objective decisions. So, I suppressed them.
In grade 1, his teacher called me in to discuss his challenges. I listened intently, maintaining my signature poker face as she spoke. Suddenly, she became upset and exclaimed, "How can you be so calm? Other mothers would be in tears by now!" I responded, "And how would that help solve the problem?"
A few days later, the principal called me in. They didn’t think my son was ready for grade 1 and wanted to send him back to grade R. I refused and had him evaluated by an educational psychologist. The psychologist determined that the curriculum was too easy for him and that he was bored. Normally, he would have recommended skipping a grade, but skipping a foundation phase grade wasn’t allowed. Instead, he advised me to homeschool my son.
For a year, I homeschooled him in the mornings, worked in the afternoons, and studied at night. We were both exhausted. I’m not a teacher, and I had no idea how to teach foundational skills. We drove each other up the wall. In the middle of grade 2, his psychologist and I decided to reintroduce him to a mainstream school.
It went relatively well until grade 3, when Paul’s health deteriorated rapidly. Although we didn’t tell my son, we didn’t believe Paul would survive the year. However, during his visits with his father, he saw Paul’s decline and began acting out. When the school principals contacted me, I explained the situation in confidence.
Then, one day, my son came home in tears, inconsolable. Through heart-wrenching sobs, he told me one of his teachers had said she knew his dad was in the hospital dying, but he had to deal with it because life goes on.
I was livid. Even if it were true, what gave her the right to tell him that? He wouldn’t believe me when I said his father was at home. He only calmed down after I called Paul, who reassured him. The psychologist tried to mediate with the school, but the teacher refused to cooperate. The school dismissed her behavior, saying my son had pushed her too far. We removed him from the school.
Homeschooling still wasn’t an option, so I hired a private tutor, a retired remedial teacher. A month later, she asked to meet with me, and I panicked. Before our meeting, I took my son to his paediatrician and he was finally diagnosed with Asperger’s at age nine.
I also enrolled him in an art school. When the other parents found out, they petitioned the teacher to reject him. They knew my son from previous schools. She refused their request and that year, he won his first Eisteddfod award for his art.
One day, he played online chess and lost. He threw a massive tantrum while I sat silently, watching. When he calmed down, I asked, "Are you done?" He responded with a cry. "Why are you angry?" I asked. He said it was because he lost. "Why did you lose?" He didn’t know. "What did your opponent do that you didn’t? What did you learn from the game?" He was puzzled.
I explained that one has to learn to lose first, that losing is an opportunity to learn from opponents, and that’s how one becomes a master. "The correct response," I told him, "is to shake your opponent’s hand and say, ‘Good game. Thank you for the lesson.’"
A week later, I picked him up from art school. His teacher met me at the car and exclaimed, "I don’t know what you did, but congratulations!" I was confused until she explained that during a group game, instead of throwing a tantrum when he lost, he shook the winner’s hand and said, "Good game. Thank you for the lesson."
Paul passed away a week before his 35th birthday, just before our son turned 11. It was the worst day of my life. I slept for two weeks, unable to function. I faced profound loss and intense guilt. Guilt because Paul had remarried, and I felt he was no longer mine to mourn—yet I still loved him deeply and mourned him.
On the last day of the two weeks that I slept, Paul appeared to me in a dream. His head rested on a tray, and he joked sarcastically, "Hm. You put my head on a platter - really?" I laughed through my tears. Then he told me I had to let him go. I refused, but he insisted and said that our son needed me. As he spoke, he began melting. I woke up and found the strength to get up and be there for our son.
My son remained with his tutor until grade 9 and flourished. He finished grade 9 a year ahead of his peers. From grade 10 to grade 12 he was in a mainstream high school. He came home one day and told me he was being bullied and before I could intervene he told me to relax, he had this. He told me that he simply stared at the bully and when he stopped talking said: "For your words to have any effect on me, I have to actually value your opinion. I don't." The boy never bothered him again.
One day, his grade 3 teacher substituted one of his classes. I was furious, but my son calmed me. They had talked, and he believed they had both changed. He told me I needed to forgive and forget. I guess if he could, I could too.
Paul’s choice of a lullaby, "With Arms Wide Open," carried a deeper hope: that the world would embrace our son with open arms. It wasn’t always the case, but I hope as he continues to grow and overcome his challenges, the world will make more room for him. I'm thankful for his online community of gamer friends who know that he is autistic and accept and accommodate him around it. That is certainly a start.
As for me, being diagnosed with Asperger’s later in life gave a name to my "uniquely weird" self. By then, I had become adept at masking and functioning in public. Challenges remain, but I take them as they come - and "I’ll cross that bridge when I get there."