Noel Piper was the inspiration for this blog posting from May 21, 2009. She pointed me to the interview and the rest came after that. A year later, I’m grateful to see how God has increased my non-disabled children’s understanding of disability and their role in serving Paul. A lot has changed in that year, but I think my observations about our family remain the same.
New Book by the brother of a man with autism:
Karl Taro Greenfeld has written a book about his growing up with a brother with autism. Noel Piper shared this link to an article and interview with Mr. Greenfield.
This was a hard article to read and an even harder interview to listen to. Mr. Greenfield does not have anything positive to say about growing up with his brother. For example:
While he acknowledges that growing up with his brother taught him a certain amount of compassion and selflessness, Greenfeld notes that these lessons were forced upon him — not taken up by choice.
“If you’re hit by a car, you learn to be afraid of cars,” he says. “It’s hard for me to say, ‘I’m learning so much from this and that makes it OK,’ because I look at Noah and it’s not OK.”
The comments are also telling – mixing messages of how courageous Mr. Greenfield is in honestly writing about his experiences with his brother to those who call him selfish and self-pitying, without compassion for his brother or his parents.
Mr. Greenfield is certainly correct that disability changes the order of things in a family. Most families that experience severe disability simply must spend more time caring for the child with the disability than the other children, and behavioral disabilities tend to ramp that up even more. Our son’s autism takes up far more time than his blindness. Typically-developing blind teenagers are just that – pretty typical in how they behave and how independent they are compared to other young people. Paul is not typical, and it is his autism that causes the greatest deviance from what is considered normal.
As a father, this was a gut-check for me. The bitterness I heard in Mr. Greenfield’s descriptions about his growing up, and his sense that there is no good purpose in his brother’s disability made me look (again) at my own parenting. Does disability and disease dominate our home?
In a word, yes. Everything is slower in our house because of Paul – he needs help eating, dressing and personal care. Just this week we had to go to a Childrens Hospital to get his teeth cleaned because he must be under general anesthesia. And because of his very small stature he’s had several teeth, including adult teeth, pulled. That requires several hours of my time and focused attention on Paul. For my other kids, we walk up the street to a local dentist – usually home within an hour. And their teeth just fall out like ‘normal’ kids. Lots of people know them as ‘Paul’s brother’ or ‘Paul’s sister’ because he is so memorable.
But I believe there is something different in our household than in Mr. Greenfield’s household or many of the commenters to the NPR article, even from the short description I read and the interview I heard:
1) We know, and are teaching our children, that God is sovereign over all things, including their brother’s disability and their mother’s cancer. And we know that God is good and just in all his ways and all his works. God intentionally made Paul just the way he is, for God’s glory. Exodus 4 and Psalm 139 are pretty clear about that. It is a great comfort to know there is purpose and power behind everything.
2) The Doctrine of Sin has been very helpful – we know we deserve much worse than raising a child with a disability. And God used Paul to break me of my sinful pride and show me how beautiful and glorious and powerful Jesus is! That is a pretty great gift to receive through your own child!
3) God will help us and God does help us. Philippians 4:19 is a promise I hang on to at home, at church and in my work: And my God will supply every need of yours according to his riches in glory in Christ Jesus.
4) We are not ashamed to speak openly about Paul and his many issues. We do not speak in hushed tones around the dinner table. The children have learned they can speak openly about disability. Paul’s school is very helpful here – they have the best ‘Fun Fest’ around, which is a highlight of our spring. Paul’s ‘normal’ siblings have a great time, because of their brother’s disabilities. Hannah again invited a friend to come with her – unashamed to be connected to her brother or to be with dozens of other children with severe disabilities. Joni Camp has also been a great thing for the children.
5) We spend a lot of time with our other children and try to find things each of them are interested in doing. Tonight is the school play, and I have been to several practices. On Tuesday a tearful child remembered a school project was due the next day – and we stayed up a little later to work on it together. We’ve read two of the three Lord of the Rings trilogy together, and watched the first two movies together.
6) We fail a lot – which forces us back to God for his help, asking him to protect our children’s hearts. That is where my hope lies, with God. I do not trust my experiences nor do I trust that I can ultimately lead my children to love and protect their brother. But God can. And when I see my daughter making sure Paul is included, or when my 8-year-old son helps Paul find something without prompting, I think God is offering glimpses to me of what the future might look like.
Not normal. Better.