BBC Disability Ministry
We exist to spread a passion for the supremacy of God in all things for the joy of all peoples through Jesus Christ.We joyfully live with a hard and glorious truth: God purposes disability in his creation for his glory and for our good.
BBC Disability Ministry Blog » New book by the brother of a man with autism
13 Comments- Add comment | Back to Home Written on 21-May-2009 by john.knightsrKarl 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.
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written on 21-May-2009
noel [http://noelpiper@usfamily.net] says:
John,
It is so good that this response comes from a family who is living it. Thank you for writing. I especially appreciate it when I try to imagine what these days must be for all of you--so overfilled with "normal" life plus plus plus.written on 21-May-2009
Deek Dubberly [http://deekdubberly.com/] says:
Wow, great blog. I was linked here from 22 Words. You've really opened my eyes to the many and multi-faceted issues facing those who are, who live with, and who minister to disabled persons. Being someone very inexperienced in this area, I've been thoroughly enlightened. Keep up the great work. Great blog.
written on 21-May-2009
John Knight says:
Deek, thank you for this encouragement!
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written on 21-May-2009
john.knightsr says:
Andrea, good to have you join us! I loved your post "That Didn't Just Happen!" on your site. Very glad 22 words introduced us.
written on 21-May-2009
Matt Taylor [http://twitter.com/taylormatthews] says:
" 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."
It is great when we see glimpses of God's grace in our trials.
John, I praise Jesus for this article and the way it will affect my parenting.written on 21-May-2009
CarolS says:
Thank you, John, for an outstanding article.
Karl Greenfeld’s father, Josh, wrote a book in the 70’s called “A Child Called Noah” which I read back then and remember being horrified by. Josh is/was a writer and the stay-home parent and he followed up that book with one called “A Place for Noah” and then one called “A Client Called Noah.”
In "A Client Called Noah" Josh Greenfeld wrote this shocking statement about his son Karl:
''I just don't know how to make that kid wake up. Either he's [ throwing ] away his future or he's a lot smarter than either of us. Foumi [Josh's wife] and I take the bourgeois tack with him. Trying to encourage the traditional values, the eternal virtues. Even though he knows we're quite independent venturers ourselves. But the unhappy result is that he has become a strange creature philosophically, a political conservative fascinated with destruction and violence. Either out of rebellion or simply because he's another bad seed. And with our record that is a legitimate possiblity.''
With a father who writes and publishes that kind of thing about his own sons, I have to wonder at Josh and Karl’s belief that Noah was the disabled one in the family.
(Taken from a New York Times review of "A Client Called Noah" on February 15, 1987. The review gives an overview of all three books. You can read the review at http://www.nytimes.com/1987/02/15/books/doing ... ted=1written on 22-May-2009
Daniel Kirk says:
My son has autism, and as I meet more families affected by disabilities, I find each family member tends to fall into one of five types:
1) This isn't real. He could be normal if he wanted to be. These either set out to disprove the diagnosis or go along with it just to humor the person who noticed the problem so they can get back to the important thing: themselves.
2) He's got a problem, but it's his problem. Let's get him out of the way so we can get on with our normal lives.
3) Things will never be entirely normal here, but let's do the best we can for this child and the rest of the family and pray that God will make up where we fall short.
4) We have to make every possible effort to improve the life of the disabled child. Until all his problems are adequately addressed, no on else's problems matter.
5) (Child's disability) is my life. These make a full time hobby or worse, a career, out of their child's disability. We found the local autism support group was really the (child's name) support group. Another mom, who was only pushy and annoying before, went to school, got a degree in special education, and began treating mere parents of disabled children as inferior beings.
Obviously, I find #3 the most balanced. But note how easy it is to drift toward one end of the spectrum or the other, and that the result is the same: pride and self-centeredness.written on 22-May-2009
john.knightsr says:
Daniel, well said. I have certainly behaved in categories 1, 3,4 and 5. Thanks be to God that he uses even the mistakes to help us along the way! Thanks for posting.
written on 22-May-2009
Jan says:
John,
It certainly is a balancing act. On one hand, we expect all three of our older children to pitch in and help our youngest child with disabilities, but yet we try not to lean on them too much. For example, if I have to run to the grocery store, the expectation is that one of my older boys will watch him. It is their contribution to the family. However, if my husband and I go out on a date or to an event (not very often), we pay them. We need real discernment in how much we can and should expect from other siblings. A goal of mine is to foster good relationships with my children that extend hopefully decades from now. Part of that is not allowing a root of bitterness and resentment to grow. Part of that is respecting them in where they are at in dealing with all of the issues of having a sibling with disabilities. The bottom line is it is a great mercy of God to not have resentment toward the child with disabilities.written on 22-May-2009
Chris [http://www.theinvisibleGod.com] says:
Thank you for this great encouragement that Jesus intervenes in our lives, even in the areas where we as parents may fail, and does far above all we could ever ask or imagine (Eph. 3:20) and that every one of our kids is a wonderful blessing!
I wish this could be published everywhere...written on 28-May-2009
Caitlin Wiese says:
I really appreciated this article, I can identify with many of the things that you are dealing with, as I have grown up with a brother with Down Syndrome. I am very aware that his disabilities are very mild and that it hasn't turned our family upside-down, but it has changed so many things and has impacted my life in many ways. I would not be the person that I am if it weren't for Aaron. I am grateful to God for putting him in my life.
I honestly don't know what I think about whether or not God actually purposes people to have disabilities, or if that is just the nature of our world and that God is an amazing redeemer and can turn things around. Either way, I see him working through SO many people with disabilities to bless people and teach us "normal" people (and I really don't believe there is a "normal") how to love more unconditionally.
I, too, am saddened for Mr. Greenfield, that he hasn't been able to embrace the role of his brother in his life, and that he has apparently become bitter about it. How sad.
Thank you, God bless youwritten on 25-Oct-2011
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