Dear Ezra and Lian,
Over the Christmas holidays, we slept Christmas Eve in Grandpa’s apartment. He spent a lot of that night awake and crying. He was crying because at the nursing home, Grandma didn’t remember that our names were Tim, Ezra and Lian. It took her 15 minutes to realize that we were her kids and grandkids. I told Grandpa most of the following story. It helped cheer him up and give him a purpose.
“1 As he passed by, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 Jesus answered, “Neither did this man sin, nor his parents; but, that the works of God might be revealed in him. 4 I must work the works of him who sent me, while it is day. The night is coming, when no one can work. 5 While I am in the world, I am the light of the world.” 6 When he had said this, he spat on the ground, made mud with the saliva, anointed the blind man’s eyes with the mud, 7 and said to him, “Go, wash in the pool of Siloam” (which means “Sent”). So he went away, washed, and came back seeing. 8 The neighbors therefore, and those who saw that he was blind before, said, “Isn’t this he who sat and begged?” 9 Others were saying, “It is he.” Still others were saying, “He looks like him.” He said, “I am he.” 10 They therefore were asking him, “How were your eyes opened?” 11 He answered, “A man called Jesus made mud, anointed my eyes, and said to me, ‘Go to the pool of Siloam, and wash.’ So I went away and washed, and I received sight.”
You are going to ask yourself why does Ezra have autism? What went wrong? Who is to blame? Those are the wrong types of questions based on the wrong types of assumptions. What is the purpose? In this, I pray that the power of God would be revealed. In our weakness, I pray that His strength be revealed. In our sadness, I pray that His joy be revealed. In our emptiness, I pray that the fullness of His sufficiency be revealed. Through the cracks in our flawed lives, I pray that His light would shine through. In our impossible situations, I pray that God’s miracles be revealed. This isn’t just Ezra’s disability, it is an opportunity for God. I’m excited to join Him in whatever He’s going to do. He’s already done so many amazing things in Ezra’s life.
Hopefully, one day you can apply the same thinking to the question “Why did my parents get divorced? In this situation, I pray that the power of God would be revealed. When faced with difficulty of any kind; In this, I pray that the power of God would be revealed.
Dear Ezra and Lian,
I wrote this New Year’s message for Jan. 1, 2009. I am writing it here for you to remember all the progress Ezra’s made these last 6.5 years. These type of stories were the things I was going to include in “The Snow Tiger In The Jungle” book. It gives a little glimpse into your fascination with ice and snow, how you used to talk when you were 5 and how your brain worked. I wanted to capture all that in the book, but this is a small time capsule from those days. Ezra ended up getting 2 years of therapy and was the shining star on the project. It changed his life. I hope you enjoy it.
Happy New Year!
A couple weeks ago, I was sick.
I told Ezra, “I’m sick.”
He looked me in the eyes really concerned.
He put his hand on my shoulder
And said, “Dada, don’t eat the snow.”
I, Ruth and the Daycare teachers keep telling Ezra, “Don’t eat the snow or you’re going to get sick!” He figured if I was sick, it was because I had eaten the snow.
Ezra loves snow and luckily for him (and me) this winter is shaping up to have lots. First White Christmas everywhere in Canada since 1971. That may surprise many of you non-Canadians, but it’s true. Usually some southern place, like Toronto doesn’t have snow on Christmas day.
As you can see, Ezra has really improved his language abilities since I last wrote. On Christmas Day, His Great-Great Uncle Bill (he really is great) called up my parents to wish them a Merry Christmas. Ezra ran and answered the phone. “Hello”, he said. My uncle had never heard Ezra talk before, so he was not sure if he had the right number. He asked Ezra who he was. Ezra’s reply: “I’m Robot-Builder” and hands me the phone and goes back to building his robot with his Christmas present.
Ezra is part of a scientific study at York University. The study is testing an autism therapy called DIR/Floor time. Ezra has been in the control group this past year receiving no treatment. His therapy begins in a couple weeks. This will involve 30 hours a week of therapy from Ruth and I + 4 hours from a trained therapist with support from language therapists, occupational therapists and dieticians. We basically get trained as therapists or “Floor time Players”. It will be less play and more like work, another full time job for the next year.
As part of the study, Ezra goes through a series of tests to measure his language, cognitive ability, social interaction, etc. One of these tests involves having an EEG measuring his brain wave activity while watching alternating pictures of toys and women’s faces. Ezra’s Mommy’s face gets put into the mix of women’s faces. The women’s faces have different expressions; happy, scared, sad. Last year, Ezra didn’t recognize his mother’s face at all. That part of his brain didn’t light up and there was no recognition in his eyes or words. This year, he recognized Ruth’s 2-D face when it was smiling, but not when scared or sad. At risk of messing with the research data, the neurolab tech specifically pointed at Ruth’s picture when she was “scared” and said, “Is that Mommy?” Ezra laughed and said, “That’s not Mommy!” like it was the most ridiculous thing he ever heard. Consistently, he recognized his Mommy only when she was smiling and would say, “That’s Mommy!” A normally developing child’s brain would long ago recognize his mother’s face, whatever her expression. Ezra is The Boy Who Could Only See His Mommy’s Face When She Smiled.
The theory behind DIR/Floor time is that this is essentially the cause of autism and the therapy tries to build the parent/child facial recognition. We have to tune Ezra into looking at people’s faces, so that he can learn language, social skills, etc. Wish us luck in 2009!”