Out of my mind

Out of my mind, Sharon M. Draper

We have discovered another excellent book for upper primary students, as good as Wonder (high praise indeed!).  Wonder is the story of a boy with a facial disfigurement; this is the story of a 11-year old girl with cerebral palsy.  Melody is confined to a wheelchair, unable to move her body with precision (except her thumbs), and unable to talk.  While a very intelligent girl with a photographic memory, no-one except close friends and family have ever seen past her disability to acknowledge what her mind contains.  That is, until she gets a talking computer which all of a sudden challenges school friends, teachers and others to realise that just because someone’s body is limited is does not mean their mind is.  There are also two big twists in the story which left us both completely surprised and very keen to read on.

I read this to my 11 year old son and he loved it.   It is more serious than Wonder (although that has very serious parts, it is also very funny). In some ways the pain for Melody is more raw, I struggled to read numerous sections through my tears, although my son is used to that now!

This should also be on all school reading lists, it would provide excellent material for discussion amongst upper primary and also high school students about both the realities of living with a disability, and how people can be unkind and thoughtless as they make incorrect assumptions. 

Highly recommended. 

Some posts to look at

There have been a couple of good posts & articles related to various aspects of parenting I have seen lately, you might like to have a look:

When your mother says she's fat: a heart wrenching letter from one daughter to her mother.

The lost years of girlhood by Steve Biddulph: the importance of being around as parents for our 10-14 year old daughters.

7 things you don't know about a special needs parent by Maria Lin: a great article voicing the reality for special needs parents and then explaining it to those who aren't.

A letter to patients with chronic disease - from a doctor's point of view.  Actually this one is for any one with chronic disease but I found out about it from a parent of a child with special needs.

Love Tears & Autism

Love Tears & Autism, Cecily Paterson

I feel like I am slowly learning more about disability. I have a number of friends that have children with special needs and I want to be helpful and supportive. Part of that is trying to understand their life with its various joys and challenges. To not assume, but to ask questions. To be willing to make a mistake in trying to help, in order to learn better ways to be a friend.

Love Tears & Autism, is the story of one family in the first few years of realising their son has autism. Written by the mum and from her point of view it is a raw, honest account of the pre-school years. From the trying to fall pregnant years, to the early happy baby days; from the mild concerns that he wasn’t quite like other kids, to the increasing concern over his tantrums and inflexible behaviour; from a diagnosis of autism to then seeing a way forward with treatment and management. She is bluntly open about her own struggles and frustrations, her crisis of faith, depression and her views on disability.

While it is a highly personal and individual story, it is a great insight for anyone seeking to understand the challenges of a child with autism. Those for whom autism is a part of their life will find understanding and acceptance of their emotions and reactions. For those who do not live with it daily, it gives a good idea of the challenges and how we, as outsiders or supporters, can be of help (or not!)

She challenges all parents to ask themselves “what do you want from your children?” Often it is selfish things. We want our kids to be well-behaved, well-dressed and manageable so that we look like successful parents. She is very honest about her own struggles with this and how she thought she was seen as a parent and whether or not it mattered. She is also achingly honest about how she felt about disability before her son was born and her fears of not being able to love him fully. This openness will be balm to other parents who have wondered the same things but felt unable to express it.

There were times when I swore, usually but not always under my breath.  There were times when I put my head down on the kitchen bench and cried, wishing that it would all go away...

But there were also times when even though I thought I couldn't go on any longer, or do it anymore, that I realised that I loved this child, and if I wasn't going to help him, then no-one would.  It was out of sheer, desperate necessity that I could somehow find another scrap of energy - from either me or from God somehow - to quiet my own angry heart and offer my son the calmness that he needed so much.  (p140-1)

This book is really an introduction to parenting a child with autism. I hope she will go on to write again about the early school and then later teenage years in the future.

For more on the topic of disability, I have also reviewed Take Heart, Ella and You Owe Me Dinner. As for two other points of view on being a parent of a child with a disability, you might want to read the snippets at Welcome to Holland (disability) and Welcome to Beirut (autism). I know a father who has found Welcome to Holland particularly helpful in processing his own feelings about his child with special needs.

Fearfully and Wonderfully Made

Fearfully and Wonderfully Made, Dr Megan Best

This recently published offering by Dr Megan Best offers Christians an excellent resource into the minefield that is the ethics surrounding the beginnings of life. Today we live in a world that enables us to choose when and when not to have babies, to decide whether to keep such babies in utero, to screen for potential disabilities and to create babies apart from the act of sex. We are used to such options, in fact most of the Western world has come to expect them as a right.

Yet how often do we stop and think through the ethics of it all? Many of us can testify that as Christians once you do stop and ask questions about contraception, abortion, genetic screening and IVF, you are met either with blank looks of “what is all the fuss about?” or at times, outright hostility from others at bringing ethics into the debate.

But we want to be informed. This book provides the information in one volume that many of us have been looking for for some time. Dr Best starts by clearly explaining the basics of reproduction and then how we would go about forming an ethic around it.  Her view is that life is created from the moment of fertilization (when the egg and sperm fuse).  As Christians, we choose to value any life that is made, no matter how it is made (whether in a woman’s body or in a laboratory), because it is a gift from God.  This therefore informs her ethic of how any life, whether in embryonic or adult form (or anywhere in between), should be preserved and protected.

From there she leads the reader step by step through the minefield that is modern medicine, technology and reproduction, with chapters addressing:

- contraception

- abortion

- screening procedures in pregnancy

- when abnormalities are detected in screening

- infertility

- miscarriage and stillbirth

- assisted reproductive technologies (IVF, surrogacy, etc)

- decisions regarding leftover embryos

- human embryo research and stem cells

Each chapter describes the science, medicine and technology involved and then draws it all together to form a Christian ethic about each.

The entire book is suffused with a grace and understanding of the choices women (and men) make and how they get there. She understands how the desire to have a child can be overwhelming, as can the grief associated with the loss of a child, or the change of expectations and the challenges of having a child with disabilities. She is pastorally sensitive and aware. Yet this is a book which is designed to provide information, and there are times where the information will be hard to read for those who have lived it, are living it or are supporting others through these life events.

It is medically detailed and scientifically thorough. Throughout there is additional information for medical professionals, which I think makes this book required reading for all Christians doctors, at least those involved with these stages of life. Having said that, it is very readable – I read it from cover to cover, even though it is obviously designed to be used more as a reference resource.

We will certainly be recommending this book to all couples at or entering this stage of life. We will be adding it to our marriage preparation book list.

There were a few specific things I was challenged by:

1. Abortion. This is a harrowing chapter. Abortion procedures are described in detail and she wisely warns readers at the beginning. What struck me most however were the statistics of abortion: 1 in 3 women in the UK, USA and Australia will have an abortion in their lifetime. What was clear what that there is little to no support for women as they make this decision. Even more so, I suspect that in our churches we are not caring for the women among us who have had abortions, because they are too terrified of being judged to voice their pain. How many women are being shut out from truly believing in God’s grace and that He forgives because of our lack of sensitivity and awareness?

2. Pregnancy screening for disability – what it involves and what it solves. We have watched a number of dear friends over the years get results from screening that shows their child will have a disability. What they are quickly shocked by is that the only cure for their child’s disability is to terminate the pregnancy, and that is the only solution proposed by medical staff.  They have to fight to keep their baby.  Dr Best argues that we are seeing a program of early eugenics in society, as people are choosing only to keep the healthy and the whole. She deals with the issues of disability well throughout the book, and touches on the impact this has for long-term services for the disabled. Parents with disabled children can witness that people are heartless enough to suggest that in choosing to have their child, they have placed a burden on society. What type of humans are we when we do not care for all members of society, especially those who are more vulnerable?

Consider…the decreasing tolerance for imperfections in our community. When did we decide that any of us were more perfect specimens? We are all of us damaged; it is just more noticeable in some than in others. And why is physical brokenness tolerated so poorly while moral brokenness is not just tolerated but chronicled, accepted and even celebrated in magazines and newspapers? (p461)

She finishes with some challenging words:

[while doing research for the book] What I found left me deeply unsettled as I realized the extent to which our society has decided to accommodate selfish adults at the expense of the children involved. We want ‘perfect’ children through genetic screening, freedom from inconvenient pregnancies, and the ability to override normal human biology when it suits us – all at the cost of embryonic and fetal human life. (p461)

This is a challenging book which raises numerous issues regarding reproduction today.  I am very glad Dr Best has done the work and the research, there are many of us who will benefit.

You can read the introductory first chapter on the Matthias Media website.

You Owe Me Dinner

I discovered this book via Jean's link to the macarisms blog.  I'm very glad I did.  It is a great book, easy to read yet challenging and heart-wrenching at the same time.

Jim Stallard worked with people with disability for years, but conceded he never really grasped the reality of a life of disability, even being an insulin dependent diabetic and blind in one eye himself.  Then an accident left him a quadriplegic and his daily life and health changed completely.

The book is the story of the 13 years since the accident.  You are allowed in to see the close family relationship of the Stallards and the many and various health issues raised by Jim's quadriplegia.  It is a gripping and emotional story.  Throughout it Jim weaves thoughts about society's inability to deal with disability, and challenges the church to be much more inclusive and understanding of the needs of people living daily with disability. 

I learnt very quickly that unless disability was personal, it could easily be ignored. (p94)  

It wasn't until I went to the CBM website to order the book that I discovered that Jim died last year.  He is already seated at the great banquet in heaven.  His challenge is to ask whether we are inviting those with disability to join our lives now.

I sometimes get asked if I want to be healed.  This question is not only dumb, it is demeaning, demoralising, and dehumanising.  Nobody with a disability I know has said, 'Gee, that's a good idea.  I wish I'd thought of it sooner!'  Nobody with a chronic illess thinks it is fun.  My disability is a circumstance I have to deal with, and I cannot afford to let my circumstances dictate my faith.  Rather, my faith helps me dictate how I handle my circumstances.  And my faith helps me wait for healing.

However, while I wait for healing, I need access, acceptance and affirmation...

...my disability is not my biggest problem.  My biggest problem arises when able-bodied people only see my disability and not the rest of me.  (p96)

It will challenge you to consider your response to disability, both as an individual and as part of the church.

Take Heart

Take Heart: For families living with disability, Kate Hurley

After reading Ella, another friend recommended Take Heart, which also addresses living with disability in a family, but from a broader perspective.

It is also excellent. Ella was a personal story of one woman’s experience, this is a compilation of many families’ experiences.

What is the greatest strength however, is the biblical input it also provides. This is an unashamedly Christian resource, written by Christians and for Christians. It will help those who are already in the role of parent and carer, and others as they seek to understand and support those around them who care for people with disability.

It’s primary focus is children, all perspectives are written by parents or grandparents, however some of those children are now adults. It represents a high number of families managing autism, but also includes Down’s syndrome, deafness and some congenital and rarer disabilities.

Each section begins with a one-page summary of a characteristic of God and the way he has worked in the world, these include:

• we are made in His image
• the eternal hope we have in Christ
• the peace of God
• prayer
• love, etc.

Each is very simple, yet also incredibly profound and helpful when thinking about disability. Each brings the Scripture to bear on the truth and shows how God works. It’s easy to read quite quickly, yet a slower and more thoughtful reading of each would bear much fruit. Interspersed between each of these sections is a personal testimony, mainly by parents, and here is where much of the emotion is found.

In the introduction, Kirk Patston makes a very helpful comment, which those of use who count ourselves ‘able-bodied’ would do well to remember: “When it comes to the ability to be wise, we are all disabled.” (p9)

Cecily Paterson, in her account of her son with autism, says this:

If we humans were truly able to love, having a disabled child would not be a cause of such sorrow. It might create a few extra challenges, but parents would not fear for their children, and societies would care for them. The ‘imperfect people’ in our world show up everybody else’s imperfection.

Love isn’t always easy. It isn’t always convenient. And the objects of love are not always attractive. I’m stunned again to think how great is God’s love for us, who are truly and thoroughly disabled, that he should give up his own son to make us perfect and beautiful in his sight. (p18)

For me, the most practically helpful section was the final chapter on how our churches can help. There were practical suggestions, but also the recognition that families with disabilities need understanding and they also need to understand ways people try to help (even if it’s not that helpful). There are suggestions for how we can support carers, siblings and those with disabilities, as well as making our churches better equipped to welcome those with disabilities. There is also the reminder that as a church we need to be willing to support these families for the long term: practically, with prayer, and with love and care.

For such a short book, it packs an incredible punch.

Ella

Ella, Madeleine Witham

A friend lent me this book recently, and as I am always happy to receive recommendations, I was eager to read it.

Ella is the story of Madeline Witham and her daughter, who was born 14 years ago with Cornelia de Lange Syndrome, a syndrome which is identified by particular physical characteristics and often includes intellectual disabilities.

It was confronting reading, there was so much raw emotion from Witham as she speaks of the joys and challenges of caring for Ella. It was definitely worth reading though for many reasons. It challenged me to think about the language we use when one is pregnant:

I go a little paler every time I hear someone say all they want is a healthy child, I experience a physical ache because it is so obvious that nobody wants a child who isn't "normal" or "perfect". Nobody wants a child like mine. (p19)

The frustrations many carers have when dealing with the medical profession:

There was much I was going to learn about how appallingly the health system cares for children who step outside the happy and self-satisfied label of "normal". (p25)

How hard mother's groups can be when your child isn't the same as everyone else's:

...no mother brags about a baby that is delayed in every way. I would take Ella to our mother's group meeting and my heart would just ache. I would feel physically torn to hear and see their babies and how normal they were. But you don't cry at mother's group. You cry when you put your little scrap in the car seat with her eyes focussed far away and wonder, "why you, and why her?" (p42-43)

The false idea that God gives parents of children with special needs extra patience, or a special ability to cope:

I am no different from any other parent. I don't have any training in Special Needs. I don't have a larger heart and a more patient disposition. I do what I have to do because I have no other choice. I am no saint. (p101)

And what she has learnt about love:

It is true that this child has taken away much that I thought I needed, but she has also brought me a great gift. She has taught me the meaning of unconditional love. It hasn't been an easy lesson to learn, but it has been by far the most valuable. (p45)

In the midst of her raising of Ella (and her older daughter), she was converted by the faithful ministry of a friend and minister. It seems that this has become her anchor over the years, and it was encouraging to read of her continued faith through the good and hard times:

Ella has been fearfully and wonderfully made by God, and she was born so the word of God might be displayed in her life. Amen to that. (p122)

It was an emotional and a challenging read, but I'm glad I did.