As a baby, Mr12’s growth and development was absolutely regular. He was yummy! He smiled, laughed, ate everything and was affectionate. He was also a very strong, non-stop, fidgety toucher who was impossible to change nappies for. Sometimes it took two of us, one just to pin him down and stop him throwing all the change items into the air. His hands were constantly searching for more tactile stimulation.
Mr12 was my first experience of parenting, and early into the job I felt a failure. Discipline was impossible. Public outings were fraught and unpredictable. I had no verbal control. With my husband frequently overseas, I often felt alone, housebound and inadequate. I had to be two hands-free, and ready to run for EVERY moment that I was outside of my home or car. He literally climbed the walls. How did others know their kid could be a few metres away from them and be fine? How did they get them to calmly comply with (at least some of) their requests? I was the thinnest in my life- I never relaxed unless he was in care or asleep. I used to joke that life with him was like having twins in the one body.
At childcare, we gradually noticed differences between him and his peers. No sign of ability to sit still. He jumped up suddenly at mat time and stood in front of the book being read. He still touched things constantly, even when told not to- once it was broken glass. He spoke a bit later but loudly and constantly, interjected and seemed oblivious to the needs of others in the room. He was bossy, and an emotional over-reactor who would cry or tantrum at the drop of a hat. He had no fear or respect for authority, danger, or even pain for that matter.
Except when he was with us, he would avoid eye contact, in fact he seemed to be talking over people’s shoulder or to the side of them. Then there were the serial obsessions and unbreakable attachment to comfort items too. With zero experience in our entire family, any enlightenment was far away. My relationship with my boy grew too intense and I also felt he was bored with me and home, so despite guilt I put him in extra childcare. Family said I was giving him no discipline, that I let him control me; he needed to learn rules/get smacked/learn consequences. Strangers rolled their eyes in public as I attempted to placate him when he wasn’t coping. I learnt to avoid shopping centres, I shopped only when he was in care. I loved him and I sure didn’t know what was happening, but I did suspect there may be more to the picture.
Eventually we got onto the CAMHS waiting list. We had an initial consultation, during which we gave extensive history and concerns. We were each asked what we thought we might discover. Because I’d been reading I saw that my boy’s traits did not seem to match Asperger’s Syndrome well, so I suspected PDD-NOS. We awaited our far away assessment team appointment dates.
In the meantime, we began primary school- a stressful time. Through this enormous transition we became even more desperate for answers we had no names and no strategies for. By April 2005, at five and a half, our boy was branded. Asperger Syndrome and ADHD. I was not surprised about the ADHD, but we were shocked about the Asperger’s (and autism)- because he had so many abilities that were atypical of the Syndrome, such as reading faces and not being literal. I soon learned it was a cumulative, numbers thing. He was over the line. Though it took a long time to sink in for us- some family much longer- the diagnosis enabled us to learn, work together with the school and therapists to do the best by him. Also, after the shock and sadness subsided, there was an enormous, gigantic sense of relief and vindication. A weight came off me. It was not my fault.
He is now in High School, and though we’ve come a long, long way with much to be proud of, there’s still much work to be done- especially in the domain of independence. Ultimately though, however obstinate to live with, he is a kind and sensitive soul. He has a few good friends, is a wonderful big brother and can be really sweet and funny. (Just overlook the noise and mess and keep repeating yourself!)
How soon did you know there was something different about your child?