There are some advantages to having a child who is profoundly, multiply disabled. One of those advantages is being able to ignore most of what is written on any one of his disabilities.
Last month Sarah wrote asking if I had read the book, Finding Your Child on the Autism Spectrum by Dr Laura Hendrickson. I had not heard of this book, and haven’t even had the opportunity to ask Sarah about her recommendation.
But it made me realize that I have not read a disability-specific book in several years. When Paul was first born I was reading all about blindness and accommodations for blind children. When autism entered the picture, I started consuming information on autism.
And I soon discovered that most books about blindness and childhood development dealt with typically-developing children who are blind. Most books on autism did not deal with blindness. Throw in cognitive disabilities and the choices become even more limited.
So, Dianne and I live in mostly-uncharted territory with a few other parents. That’s not a complaint or even a lament; it is simply our situation.
And it also means we get to stay out of some really contentious areas of debate, like the impact of diet on autism, or particular forms of therapy for autism. I just get to hang out with other parents of disabled kids rather than compare notes, or get into discussions about what therapy might be better or worse than another.
So, for the books I read on disability, I mostly focus on disability, the Bible and theology. Then I focus on disability and culture in the blogs, magazines or news articles that show up in my news alerts or RSS feed.
Next week we will be on vacation and I hope to get through a big chunk of Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics by Hans Reinders. I’d like to provide a review when I’m done, but I’m not exactly sure what would be most helpful for those who read this blog.
- So I’m hoping you might comment on how you choose the resources you read or watch on the disability(s) your family is dealing with. How do you choose what books to read on disability? What makes for a ‘good’ book on disability that is worth reading and considering?
- If you take recommendations or read book reviews, what do you look for that encourages or discourages you from choosing a resource on disability? What makes for a ‘good’ review that is helpful in making a decision about a resource?
I’m not looking for recommendations for books, but in the how and why you make decisions about books.
Part of my reason for asking is that I’ve been asked to review a book for the Bethlehem bookstore. If it is worthwhile for Bethlehem to stock that book, I would like to provide a review that might encourage people to buy it.
I look forward to your comments and observations!
The Works of God 
Hi John,
The book you refer to: Finding your Way on The Autism Spectrum, is a book you mention in your July 8 post (books in Bethlehem’s library).
I have read this book and as a follower of Christ, it was the most helpful book on autism I read. At this point, I read one of two kinds of books on disability. Firstly, I read very scientific books to gather information so I can help my son learn and retain information from the world around him. These are usually textbooks and therapy manuals.
The second type of book must be Bible-based and must be saturated with the truth that God is Sovereign over disability. Laura Hendrickson’s book is jut that. Even when she’s writing about research and treatment, it is always under the umbrella that God is sovereign over the situation and that the child in question was wonderfully made.
What a difference this perspective makes! There was a time when I was reading books about therapy and recovery and they consumed me. I stayed awake at night trying to figure out how best to “cure” my son. One day the Holy Spirit impressed on my heart that my boy’s progress was in God’s hands. I could trust Him and rest free in the fact that even though our financial situation could not afford the best therapies, God was not limited.
It’s so easy to take our eyes off truth when we’re bombarded with conflicting information. That’s why I am very selective of what I read now. I’m still fragile when it comes to dealing with disability and I want to guard my mind against anything that will make me doubt God, His control over our lives and His promises.
Pam
I agree with Pam as far the the two main categories: biblical perspective and disability-specific material. And what serves one family at one time may be different than what would help another family. Each disability experience is unique.
For example, our oldest is special needs, and our next child is 2 1/2, so I’m just now sensing the need to read something on family dynamics, how to keep disability from defining the home, wisdom on raising the siblings of a special needs kid, etc. If your special needs kid is the youngest, you would probably sense that need right away.
And I can relate to what you’re talking about when it comes to disability-specific material. Our son has a language disorder. I have yet to find a book on language disorders, but I did find a book on raising deaf kids somewhat helpful because some of the communication issues are similar.
So I think the best review would give the specifics of the book so that the parents could make an informed decision whether it would be good for them at that time.
Well, my situation is very different from yours, but I also have to make decisions about which disability books to read. I have Asperger Syndrome, and so I look for books to help me understand myself and to find strategies to help. To begin with, I would read anything and everything, but now I have an idea of what is most effective, I tend to be more selective.
I mostly choose books written by people on the autistic spectrum themselves, because I find they explain it better than people who aren’t, as they understand what it is like, and they may have come up with some useful strategies. As a female, I prefer books written by other females, because of how females on the strectrum have some differences from males, and I can relate better to such books, even if the females have classic autism rather than Aspergers.
I do also sometimes read books by people not on the autistic spectrum, because they can give another perspective, and also I want to know how the world in general understands people on the autistic spectrum, because that is helpful for me to know what sort of things people might have read about Aspergers which they will bring to their interpretation of me. For the same reason, I read the novels and watch the movies that feature autism/Aspergers.
I am a Christian but I don’t look for disability books specifically by Christians, because I think explanations of how Aspergers works does not need to have descriptions of God in it, nor do I need to be told by another person what the right attitude should be or how I should be relating to God. I find God interacts differently with different people, and I can find some Christian books more of a hindrance than a help, because a lot of Christian writers seem to think that their particular way of interacting with God is the way that everyone should follow. How I see it is that God made me the way he made me, and he interacts with me in a way that makes sense to the way my mind works, which is not the way that everyone’s mind works.
So I read the Bible and I pray, and then I use my own relationship with God to guide me in whatever else I do and read. So I integrate what I read in the Bible with what I read in disability books, in much the same way as someone who has two different disabilities will integrate what they read in specialist books in each area. So for you, as you have a child who is blind and has autism, you probably interpret what you read in one area in the light of what you read in the other and then analyse how the two disabilities must impact on each other, and the overall effect on your child.
Also, it just occurs to me that when I read stuff on disabilities, I find it very important that the writer acknowledges that what they are describing is not necessarily the same for everyone, rather than assuming that everyone is the same. For instance, I also write a blog about what it’s like for me to have Aspergers, but I try to make it very clear that the way I experience Aspergers is not the same as the way everyone experiences it, and that mine is just one perspective.
(By the way, sorry if my comment is totally irrelevant and you were just looking for comments from parents. I just found your blog because sometimes I search for blogs on autism and Aspergers, and I found your question interesting, so I answered it.)
My situation doesn’t require a choice of disability books, but maybe the way I choose general parenting books would be of interest anyway. I’m usually looking for materials on the scientific/practical side of things, and I look for the following:
– Recently published materials with up-to-date research
– Authors who are experts in their fields
– A simple style that I can skim, with important points highlighted (I just don’t have time to wade through pages and pages of narrative)
– Lists of ‘symptoms’ or behaviors to look for in a child that indicate a particular condition
– Lists of things to try (rather than a single solution)
Secular books:
I am so thankful that through His common grace God has given us so many secular professionals, with understanding of certain disabilities that I could never have. As Capriwim wrote: the writings of those who have the disability can provide additional insight into how it affects their daily life. (My daughters are on the Autism spectrum, and reading from others on the spectrum helps me to better understand and care for my girls.)
In secular books on disability, I tend to look for the medical aspect of the disability. This helps me to gain a better understanding of what is going on. I do not find that they can provide me with much hope, as their hope is usually found in a cure, or improved condition. While those things would be nice, my true source of hope needs to be in the one who created my children just as they are.
Christian Books
As for Christian books on Disability, I usually find them encouraging. Whether it is a story of someone who has gone through something similar, or how God used their disability to grow them into a deeper relationship with him.
I do appreciate a biblical perspective on the different therapies that are out there. I agree with Pam & Bethany that each disability experience is unique, so where I take caution is when certain methods are put forward as the best or only way to deal with the disability.
The other aspect of Christian books I look for is when the author takes the time to discuss that living with disability can be messy and that while God is at work this can take time. “Progressive Sanctification includes failure requiring repentance” Dr. A. Peterson Reformed Theological Seminary
I found that when I failed and was filled with sin, I needed to know that God was still at work and that this was a process.
I find that in order to minister to my spouse, friends, and others I need a good theology of suffering. I find books that draw a direct relationship between suffering & the sovereignty of God to be the most helpful. Without an understanding of God’s sovereignty in all things, disability makes no sense to me.
This is just my experience, hope it helps
Jason