Latest TODAY column: With a bit of faith, tears and Robogirl
Excerpt:
I went to the hospital with my oldest child, Faith, aged five, on Wednesday. We decided to get a neurologist's opinion on her autism, to see if there was any neurological problem that may be causing some of her behavioural issues.
The neurologist suggested an electroencephalogram (EEG), which is a recording of the brain's electrical activity. They had to take readings of her brain when she was awake and asleep.
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Full column:
With a bit of faith, tears and Robogirl
I went to the hospital with my oldest child, Faith, aged five, on Wednesday. We decided to get a neurologist's opinion on her autism, to see if there was any neurological problem that may be causing some of her behavioural issues.
The neurologist suggested an electroencephalogram (EEG), which is a recording of the brain's electrical activity. They had to take readings of her brain when she was awake and asleep.
So the night before, we kept her up as late as we could, and then woke up as a family at 6.30am, to ensure that she was as sleepy as possible. I don't know about her, but I definitely was.
I drove her to the hospital with my mom along as an extra pair of hands, and we also had to ensure she did not fall asleep in the car ride there (Faith, not my mom).
Faith was in a good mood. She smiled and skipped like a happy lamb, and even when she got into the laboratory, she was fine because the room was set up with happy wallpaper and toys to distract her. This was so that the EEG technologist could start marking her head with red crosses where the electrodes would be stuck. She looked like Robocop awaiting a brain upgrade by the time they were done with the wires.
Then we had to administer the sedative orally. I think at this point, my little one realised she was not here for a fun outing.
It was fascinating to watch as the sedative took effect. My little girl could not tell us how she felt (she does not speak yet), but we could see it on her face. There was a look of puzzlement, the kind of face that says, "I don't want to sleep, I want to play so I am going to stand up … whoa …"
She stood on the bed then wobbled, weak-kneed, like a newborn Bambi, while we held on to her in case she fell. She looked like Drunken Monkey Hidden Deer, swaying and bending with her new kung fu.
Mom said, hey, she looks like your Dad last time when he came home from a particularly heavy drinking night out. We laughed.
She finally rested her head on the bed; face down, trying to fight the sleep. Just when we thought she had fallen asleep, and tried to finish wiring her up, she stirred.
That started another 45 minutes of trying to coax a very cranky little girl back to sleep so we could do the readings. She finally went into a deep sleep but 30 minutes later, it was time to wake her up so that we could record the "awake" readings.
I bet my Faith was thinking, you take me here, make me sleep when I did not want to, and now you wake me up? What do you crazy people want?
We spent another half an hour comforting her and also holding her arms down so she would not yank the wires off her head. We couldn't have that, because Robogirl's download was not complete.
That night, I came home with the wife from work, and Faith made her way to the empty spot between us on the sofa, and made herself comfortable leaning on me.
Later that evening, when all the kids were asleep, the wife and I watched Marathon, an award-winning Korean movie about an autistic youth training to become a marathon runner, inspired by the true story of autistic athlete Bae Hyeong-Jin.
I don't know why, but watching the sensitive and very accurate portrayal of what a family with an autistic child goes through made me cry a little. We inhabit that world, and we try very hard not to feel sorry for ourselves or our daughter, but I suppose seeing it captured and crystalised in a movie like this reminded us of all the challenges, the pain, and the love we live through daily.
I am glad the movie did not play up the savant angle. Many autistic children are not savants, and struggle to function in a world not designed for people with special needs.
While watching the movie, the wife informs me that she has liaised with Faith's occupational therapist to meet a very good speech therapist in private practice. I said, "I thought Faith has a speech therapist in her Special School?"
Yes she does, the wife said. But she went on maternity leave, so the speech therapy is on hold for now. I don't blame the school, because there is a shortage of speech therapists globally and she is already very fortunate to get a place in a Special School. Many other kids are queuing to get in.
But I could not help remembering the time my mother, a retired teacher, went back to teach Art and Geography, when the teacher in her former school went on maternity leave.
Nobody would dream of telling parents that their kids will have to skip Art and Geography for the next few months, because the teacher is on maternity leave.
But special children have to delay the intervention and therapy they need to learn basic things like how to talk, for months, when this happens to their teacher or therapist.
Months without Art and Geography, no way.
Months without speech therapy, sorry, that's how it is.
Somehow, this just leaves me speechless.
mr brown is the accidental author of a popular website that has been documenting the dysfunctional side of Singapore life since 1997. He hates going to the hospital.
