Book Review: Raymonds Room - part 2

One of the principles that is a common thread through out Dileo’s book is that it is not about getting a disabled person ready to participate in life – whether it be in a mainstream school, of having a job, or living in their own home – the question should rather be what support could be put in place to allow the disabled person to live life now, and pursue his dreams.

He gives wonderful, real life examples of how beautiful things can be achieved if the disability professionals start with the question: what are the life dreams of this person to whom we are providing a service? And how can we provide supports to make that happen. Thereby moving away from looking at what are the deficits in this disabled person and how can we better train them to “fit in” and “keep up” before we allow them to try out life in the real world.

I love this concept.

I will hold it in my heart to always look to Matt and give him time, space and opportunity to express what his life dreams are. And then to start asking the questions:  how can we work with him to make this happen, and what supports will he need to be able to move in this direction? I want to be led by his voice as far as possible.

I love that the focus is not on “what are the things that Matt can’t do and how can we try make him more normal by training him to someone do all these things”

I love that there is recognition that all of us need support in life, some more than others, but we all need support.

I love that my focus is all about connecting with the creative energy of all those who love Matt and those who engage with Matt professionally and through his school, so that we can find unique, clever, out-of-the-box, imaginative, and life-giving ways of helping Matt achieve his own life goals and dreams.

Isn’t that what all parents want for their children – to help them reach their dreams. I had put that parenting role aside when I came to terms with having a child with global developmental delay, as if some how he wouldn’t be able to have his own dreams. And if he did, he certainly wouldn’t have any capacity to reach them and therefore they were not worth reaching.

Well Dileo has changed that in me, by sharing a vision of what is possible. In his book he tells stories of various people with different types of disabilities who were viewed as people with goals and talents, and were supported to take meaningful steps towards their dreams. I encourage you to read the book to encounter this in a deeper way.

 

Find out more about Dale Dileo's "Raymond's Room, Ending the Segregation of People with Disabilities" here.

 

Check out part 1 of my review here.

Book Review: Raymond's Room - part 1

When deciding what education option is best for one’s child there are a multitude of factors that are considered. Dale Dileo’s book Raymond’s Room "Ending the Segregation of People with Disabilities" has significantly shaped my thinking about what might be in Matt’s best interest. Dileo has worked in the disability arena, in many roles, for many years and strongly motivates for inclusion not only in schools but also in the workplace. He covers many topics but it is the psychological perspectives and studies on difference that struck a chord with me.

It all starts with longing that we have for our children to belong. I believe one day too, Matt himself will have that longing to belong. In order to belong we need people’s appreciation and acceptance of who we are. To work towards that acceptance we have to understand a bit more about what causes people to reject some people and not others. The concept of deviance is key to making sense of this.

“People are viewed as deviant when they are perceived as significantly different from what is usually experienced. This is part of human nature. When we are faced with someone who is unusual in a way we do not particularly value, we are curious, but also mistrustful. This is not limited to disability.” (page 32)

So being seen as different from the norm can lead to people keeping us at an arm’s length, and thus not helpful for belonging. But it seems that being different is not fixed in stone nor is it an objective reality. Deviance can be exaggerated or minimised in the perceptions of people.

“The interesting thing about the perception of deviancy is that “differentness” can be subject to exaggeration. One way to highlight differentness is to group people who share the difference together. What tends to occur is that the shared difference becomes more prominent because it is more noticeable.” (page 33)

Dileo explores how by clumping all the “special needs” kids together we are doing them a disservice in terms of other people’s psychological view of them. When grouped together, all that other people see are the things that these kids have in common – that is their disabilities or special needs. It therefore becomes more noticed and more prominent.

“Grouping people of like disability only magnifies what they share in common – the disability.” (page 49)

He also shares how differentness can be minimised, or at least seen as only one characteristic of the person, not as the defining feature.

“People often generate opinions about others based on initial impressions, and then modify those impressions as they encounter new information. When a person has a single noticeable difference, such as a disability, that characteristic can be moderated by other characteristics, such as personality traits, style of dress, and job title.” (page 48)

Further studies show that people are more willing to tolerate deviance or differentness the more competency the individual demonstrates. He gives an example to explain this:

“Imagine you are meeting, for the first time, a woman in a wheelchair whose speech is a bit slurred. Some people will make assumptions about her intelligence, status, etc. based on the wheelchair and her speech. But now imagine that the individual in the wheelchair is introduced to you as the head of a local company, and that she is wearing a nicely tailored business outfit. The centrality of her disability immediately fades, in the light of her status and appearance” (page 48)

In Matt’s current school setting the other kids are certainly aware of the ‘differentnesses’ about Matt, but they also know that he loves drumming, he is good at kicking a ball, he is fun to play chase-chase with and he delights in telling everyone what pictures are on their t-shirts. So for many of them he is pretty cool. It’s because they have had the opportunity to get to know Matt as an individual. Things would have been very different if those same kids had encountered Matt as part of a crowd of other kids all with special needs. Dileo explains using the above mentioned story

“if you are meeting for the first time a group of eight individuals in wheelchairs, there is no opportunity to process information competing with  the disability. Instead, the fact that all of these individuals have a common difference, a wheelchair, is pretty much all you will perceive. In other words, you don’t see a group of individuals, all of whom happen to use wheelchairs. You tend to see a group of wheelchairs, all of which happen to have people in them.” (page 48)

Dileo's thoughts and writings have connected deeply with my passion of Matt being given the opportunity for other people and children to get to know him for all that he is, not just defined by one aspect of who he is. And so including him in a mainstream setting, as long as he is happy, learning and belonging, is key to pursuing this goal. 

"Grouping people who share a difference (a disability) exaggerates the perception of difference. It limits who will be friends, neighbours, schoolmates, and work colleagues. Lives become defined , not by interests, family, goals and social relationship, but by disability-related goals often imposed from a program." (page 49) 

 

Every Friday afternoon Matt goes to Soccercise Starz which is an extra mural activity at his school. He loves it. Fridays used to be noticeable because it was the day they served hot dogs at school. Matt would say HOTDOG DAY. But that favourite treat has been eclipsed and now Fridays are known as SOCCER DAY. The soccer practice takes place just behind the school parking lot so I can sneak a peak at Matt in action. I love watching how he is assisted to fully participate. And afterwards his eyes sparkle with delight.

 

In the next few blogs post I hope to explore more helpful perspectives from Dileo's book. Watch this space.


---- A big thank you to Cindy's mom who blogs here for recommending this book.

Book Review: Belinda and reflections on Pain

So how do you deal with your pain? Emotional pain. This is a question that I have been pondering for a while. Do you admit to yourself that you are in pain? If you do acknowledge it, should you share it with others? And who should these others be?

I've just finished reading a story of Belinda and how she survived a horrific car accident. She fought for her life, and then fought for her body to work again whilst grappling with the many losses that her disability brought her. I have met Belinda a couple of times - in fact Iblogged about her a few years ago. I don't know her well, but I was interested to understand more about her journey .

On the cover of Belinda's book is a picture of broken egg, which comes from the quote: "You cannot go back and unscramble eggs. There is no way to undo what has been done. Let’s move out of our past failures, and starting with our scrambled eggs, learn how to make soufflé!" by Barbara Johnson

Her book is really a diary that she kept over the 10 years following her accident, and she shares her triumphs and her frustrations. In some ways it was hard to read, as I was overwhelmed by the multitude of challenges that she faced and her progress was slow - requiring grit and determination. She also shared honestly about her emotional pain and loneliness. Also hard to read. Oh how we prefer the successes, the joys, the feel-good bubbles that make stories attractive. To be with someone in their time of aching is difficult - part of me wants to run from people's sorrows. Yet it is in that place of struggle that so much is learnt. And through her writing, it was when she took me into those dark places that I gained the most.

I’ve not been shy to share my difficulties on this blog and with others in my social circle. Explaining our challenges is one thing, but I don’t give myself much space or time to dwell on the pain associated with the difficulties. My attitude to life is to recognise the difficulty and then I move straight on to seeking a strategy in order to overcome it, and if that not possible find a way to manage life with it.

In the last couple of months I have found a tugging from my inner being to give myself permission to feel sad about the difficulties. My inner being obviously thought this would be healthy and appropriate, much to the reluctance of my more conscious self. The reality is that I am fearful that if I let myself feel the ache and sorrow then it will just be downward spiral into depression.

Yet I have come to see that by not giving myself space to “feel the pain”, I end up unexpectedly imploding. By imploding I mean seriously over-reacting to a situation, being assaulted by intense negative feelings and experiencing a desperate yearning to run away from my life.

But where is a wise and safe space to share this pain, and the reason for the pain. Is it fair to Matt that I share with the world all the ways he frustrates me? I am unsure if sharing this with the blogging world would be dishonouring to Matt. Yet by not sharing the hard things, then my blog ends up looking like life is easy and Matt is just sailing through. Yes there are joys and triumphs, but there are also tough, heart-aching times. 

In Belinda’s book she was very real about her pain. Maybe one can be in a book, where the reader sees the pain in the context of the whole story. Blogging is different because people can just dip in and out – and can completely miss the big picture. Hmm not sure yet.

But I do know that this year I am going to be a lot more honest with myself about acknowledging the soreness of our challenges. I will seek courage to verbalise this to close family and friends. And not just fast track to finding a solution or coping strategy.

Book Review: The Boy in the Moon

I have just finished reading “The Boy in the Moon” by Ian Brown. Ian is the father of Walker who was born with a genetic syndrome called CFC. I won’t begin to explain what that all entails, the book does that well enough. The book is about Ian’s journey as a parent of a child with severe health and development issues. Being a journalist and a seasoned writer gives Ian the   ability to write both from a very personal perspective whilst at the same time looking upon the matter from an objective distance.

Walker’s needs are very taxing on the family, emotionally, physically and financially. Ian descriptions of their struggles made me ache for him, his words bringing me into his tiredness and exhaustion. He shares about the dark times in his marriage and in his own private thought world. I appreciate such candour as often parents of special needs kids are so focussed on the positive, as this is how they cope with the life altering gift. But it does mean that others can get the impression that things are easier than they seem. I think I might sometimes fall into that trap in my blogging.

“The strange thing was that all this darkness could be relieved by a few pinpoints of light. A reaction alone was notable; a smile or one of his glee sprees charmed my afternoon.”

 

This quote from page 46 demonstrates that his book, although brutally honest, isn’t a pity-party, nor does it only focus on the struggles. His writing also invites the reader into those precious, glorious moments of connection with Walker, those moments that breathe life and purpose; and that inspire gratitude in one’s own life.

In addition to telling his story, he also shares his observations and critique of the medical system, genetics, government services, and society – obviously he is speaking from real-life experience, and unafraid to question the status quo. One interesting thought

“Until recently, no-one – certainly no part of the government-funding apparatus – was willing to admit that a child could be loved and still be too difficult to be cared for by his or her parents. Because until twenty years ago, children this medically complex didn’t exist. They didn’t survive. High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level” page 95-96.

In seeking to understand his son better he explores all that genetics and medicine can give him. Whilst at the same time he is also trying to determine if Walker has a sense of self, grappling with what life Walker could live, what would give it meaning. A hard goal to achieve, especially Ian is an atheist, and many of the more spiritual explanations don’t connect with his world view. He does reach one profound conclusion on page 234

“The purpose of intellectually disabled people like Walker might be to free us from the stark emptiness of the survival of the fittest”

Ian often refers to his wife, but less often shares her thoughts and perspectives. He did quote her reaction to the occasion when, strongly encouraged by someone, she takes Walker to a Shaman. I love the way she reflects on the experience.

“It was a huge relief to me, “Johannah said. “Because for the first time, the only time, someone wasn’t trying to fix him. They were just describing him. There was no judgement or fear. It was just very accepting. And I do think it was a turning point for me. Instead of trying to fix Walker or make him better or diagnose him or see what was causing his state, it was just what and who he is. This is what he is doing. It wasn’t a triumph or tragedy. It just was.” (page 111)

I can connect to that sense of peace one gets when one sees one’s child for what he is: when the yearning for the next milestone has ceased, when you have stopped comparing him to your neighbour’s child, when you are no longer trying to make him something he is not.

Ian shares about joining an internet-based support group aka listserv, and his description of the experience made me laugh in that it was so familiar – the various types of people and responses. He spends time and energy visiting various families whose child has the same syndrome. He introduces us to these children and reflects on what it means for him and Walker. One belief held by some of the parents he meets is the notion that God has chosen to give this special child to this specific parent, that the child is some time of heavenly gift. I appreciate his honest reaction to this way of thinking:

“I understood that impulse: Walker had given my life shape, possibly even meaning. But Walker had also made our lives hell. On the hellish days the mawkish sermonising about angels and specialness felt like rank self-delusion, the work of anxious cheerleaders desperate to justify themselves to a cynical high school. Disability is no different from politics or even college football: it divides and politicizes people according to their need, simplifying dark and unanswerable experiences into a dependable, reassuring stance. But the details of Walker’s life belied any certain path.” (pages 135-136)

I must confess, that even though I love Jesus and read the same bible as other Christians, I do not believe that God intentionally decides to inflict a chromosome disorder on a child, and then gives this child to a specific family as part of a greater, cosmic plan. Nothing in the life and person of Jesus teaches me that this is what I should expect from God. I am reading an interesting book on this topic and so will spare you a theological explanation here. But I must say, although thinking that God is all in control, like a giant puppet master, and that all that happens to us in life is God’s will may bring some comfort to some Christians, I believe it makes it really difficult for those who have experienced the rough side of our fallen world to have an intimate relationship with God. But more of that in another post.

My final comment on this book. When contemplating Walker’s care home, as well as his future, Johannah’s deep longing for him are expressed here: “As long as someone loves him every day” (page 184). I don’t think about Matt’s future that often, by future I mean what will happen to Matt when Lloyd and I have passed on. It is too scary, and as I don’t have much control over it from where I am now, I choose to leave that question in the future for now. But when my heart does wonder down that road, then Johannah’s words echo my deepest prayers for Matt – God, as long as someone loves him every day.

I would recommend this book to parents of children who have kids with special needs – the honest realistic reflection is so refreshing, and affirms you that you are not the only one struggling, and that you are not alone. I would also recommend this book to friends of families of children with special needs – it gives wonderful insight into a topic that is often avoided. Therapists, teachers, medical professionals who engage with children with special needs and their parents will also find this book helpful in developing insight and empathy.

Book Review: Look at Me

If you want to be inspired to rise above the challenges that have been thrown your way...

If you want a fresh new look at people with disabilities...

If you want to be reminded of how we can change perspectives - your own and others...

If you want to be encouraged that you can change how people view those with special needs...


...then you must get your hands the book Look at Me

Marlene le Roux is an activist for disabled women in South Africa. She had a dream to break the stereotypical view that society has of the disabled by publishing a book that showcases disabled women as sensual, sexual, feminine, powerful and creative. She compiled the life stories of 28 women who have a whole variety of disabilities - from being cerbral palsy to being quadraplegic to being blind. A highly experienced photographer took gorgeous photos of each of these women highlighting their womaness above their disability. Each photo is accompanied by the woman telling her life story - such courage, such determination in the face of giant hurdles, such perseverance through trials, and such achievement when many doubted.

It has inspired me to raise Matt to believe that he has a valuable role to play in our world.

It has inspired me to teach him to stand up tall against all the challenges and hurdles that come his way.

It has inspired me to build his inner strength and resilience so that he can truely reach his potential despite the society we live in.

It has inspired me to not be ashamed of his syndrome, to inform and educate all that I meet, and to invite them to see all of what Matt is, rather than all that he isn't.

Book Review: Expecting Adam

I recently re-read Expecting Adam by Martha Beck. It is a true life story of Martha's account of her pregnancy with a little boy who has Down Syndrome. She is a captivating writer with such  crisp descriptions of emotions and events that one can't help but feel completely in the moment with her. I appreciated her slightly dry sense of humour that is sprinkled in between fairly serious thoughts. Most of the account is about her journey of coming to terms with having a child with special needs, in the midst of the worst morning sickness I have ever heard about, whilst dealing with the very fierce expectations of how woman should cope from her Harvard environment, and simultaneously trying to make sense of the unfamiliar and profound spiritual moments that were breaking into her very rational world.

I loved the stories about her son that she wove into the fabric of the story - engaging, joyous and celebratory stories from his life that contrasted the struggles she was facing in coming to terms with the diagnosis. Being a mom of a kiddie with special needs I would have appreciated more about him, but as the title clearly states the book is about her season of expecting him, rather than raising him. I couldn't connect with some of her interpretations of the spiritual moments that clearly made a deep and lasting impact on her. My Christian world view would have interpretted her experiences differently. I have to acknowledge that I was reading her journey and I was hearing her story - she wasn't trying to convince me to believe as she did.

From what I have read, I think she is now an influencial life coach with columns in prominent magazines and newspapers, and has also been on TV. This is her website: www.marthabeck.com I must admit that I was a bit disappointed to find nothing about Adam, nor the journey of raising a kid with special needs as part of her current portrayal of who she is. I would think that much of the lessons that she is now sharing with others were birthed and refined through her struggles and victories of parenting a child with special needs. Maybe she shares that in her work, but it is sadly absent on the website.

I first read this book about 8 years ago. Lloyd and I, together with a couple other close friends, were on a 4 month road trip around Eastern Africa. We all swopped each other's books. And someone had brought along Expecting Adam. I think if we were back home in "normal life" we wouldn't really have picked up such a book, let alone both Lloyd and I read it one after the other. Given the many hours spent on the road, we had a good chance to chat through the books we were reading. In fact this book sparked what turns out to be a pivotal conversation for us as a couple - we chatted about what we would do were we in Martha's position; about the pros and cons of using abortion in cases of medical conditions; about our values; about what it would be like to have a kid who had some kind of disability. At the time it was all theory for us. But it really laid a foundation for us in preparation for the time when we needed to face those issues in our own lives. Looking back I am deeply grateful for that opportunity.

As I read this book last month, I chuckled to myself at what a different person I am now, and how different parts of the story meant more to me now than they did 8 years ago. Understandably, given my journey with Matt, I have a new set of eyes to view Martha's story, and for that matter, to view the world. Re-reading this book highlighted for me the extent to which my perspectives have radically altered. And I am deeply grateful for my new perspective on life.

One thing that did remain the same though, is that I was attracted to the exact same paragraph in the book both times. I actually wrote it my journal back then in 2003, and blogged about it yesterday. To read the quote in context you'll have to read yesterday's post. And just because it is such a profound statement I will repeat it here once more:

This is the part of us that makes our brief, improbable little lives worth living: the ability to reach through our own isolation and find strength, and comfort, and warmth for and in each other. This is what human beings do. This is what we live for, the way horses live to run.

Book Review: Where is God when it hurts?

Where is God when it hurts? by Philip Yancey

I found Philip Yancey’s exploration of pain and suffering to be sensitive and honest. His humility in writing made sure that I did not feel judged for any of my thoughts and feelings that I have had in my process of working through disappointment. He starts by explores the physiological benefits of pain which I found fascinating. He then grapples with pain from a spiritual point of view – is it from God? Here he examines some of the unhelpful myths and beliefs around suffering that can add more burdens to those who are grappling with loss. He then explores the ways we can respond to suffering. He delves into ways we can cope in the time of pain and ends by looking at the role of faith in the journey through disappointment and loss.

I liked how he drew on people’s stories and experiences so that the book is not just a theological document. However he does not shy away from exploring the bible and it’s perspective regarding suffering. I found Philip Yancey’s thoughts and teachings helpful in my own journey and would recommend it to someone who was grappling with suffering from a spiritual and Christian perspective.

Here are some passages that I am still reflecting on:

"Rabbi Harold Kushner cites an old Chinese tale about a woman overwhelmed by grief after the death of her son. When she goes to the holy man for advice, he tells her, “Fetch me a mustard seed from a home that has never known sorrow. We will use it to drive the sorrow out of your life.” The tale recounts how the woman goes from house to house, asking if the home has known sorrow. Each one has, of course, and the woman lingers to comfort her hosts until at last the act of ministering to others drives the sorrow from her life." (Page 193)

"A wise sufferer will not look inward, but outward. There is no more effective healer than a wounded healer, and in the process the wounded healer’s own scars may fade away." (Page 193)

How would the world be different if Jesus had come as a Superman figure immune to all pain? "What if He had not died, but merely ascended to heaven during his trial before Pilate? By not making himself exempt, but deliberately taking on the worst the world had to offer, He gives us the hope that God can likewise transform the suffering each of us must face. Because of His death and resurrection, we can confidently assume that no trial – illness, divorce, unemployment, bankruptcy, grief – extends beyond the range of His transforming power." (Page 231)

"I know well the helpless feeling of not knowing what I ought to pray, as I imagine every Christian sometimes does. (In the face of suffering…) What can we ask for? How can we pray? Romans 8 announces the good news that we need not figure out how to pray. We need only groan. As I read Paul’s words, an image comes to mind of a mother tuning in to her child’s wordless cry. I know mothers who, through years of experience, have learned to distinguish a cry fro food from a cry for attention, an earache cry from a stomach ache cry. To me the sounds are identical, but not to the mother, who instinctively discerns the meaning of the helpless child’s cry. The Spirit of God has resouces of sensitivity beyond those of even the wisest moth. Paul says that the Spirit lives inside us, detecting needs we cannot articulate and expressing them in a language that we cannot comprehend. When we don’t know what to pray, He fills in the blanks. Evidently, it is our very helplessness that God, too delights in. Our weakness gives opportunity for His strength." (Page 236)

To learn more about Philip Yancey and his books follow this link.

Book Review: So Now What?

So Now What? Winning over depression and loving a boy with special needs. By Celeste Smith

This short but moving book is written by a mother of a boy Mitchy who has Cerebral Palsy and a measure of autism. I was touched by how honest Celeste was about the many struggles that she faced – from battling depression; to dealing with the grief of having a child whose life does not fit into the “normal” category; to managing the practical challenges of helping him develop. She shares thoughtful insights on interesting topics, such as: how to prepare her son to accept his disability; disciplining a disabled child; and the impact having a disabled brother/sister has on the siblings. I found I could glean many helpful hints that will enhance my parenting as well as my coping skills. Through out the book there is a thread of hope (even in the hardest times) and that hope is Jesus. Celeste weaves her faith into all aspects of raising her boy. This hope and faith ensures that the reader finishes the book with a real sense of celebration at the life of Mitchy.

I am sad to conclude this book review with the news that Mitchy died this last month of a drowning accident. I am broken by this news as I feel like to have known Mitchy personally after reading his story. My deepest prayers go out to his parents and siblings in this time.

(This book is published by the author in South Africa, 2008)

Book Review: You are Special

You are Special. By Max Lucado

Max Lucado has created a world of Wemmicks (little wooden people) and this story is about a character called Punchinello. Wemmicks give one another stars if they have done something good or are something good (like being pretty). If they do something that they consider bad (like being clumsy or having chipped paint) then they give each other grey dots. Poor Punchinello was always getting grey dots because he wasn’t seen as good enough by the other Wemmicks. This story really connects with me because I often care too much about what others think and I fear for Matt that he will grow up feeling not good enough because he is not the same as “normal” children. I cry every time I read how Punchinello’s understanding of himself changes when he meets the carpenter who made him – Eli. He tells Punchinello: “All that matters is what I think. And I think you are pretty special…because you are mine.” He also tells Punchinello why the Wemmicks’ stickers don’t stick on another character called Lucia, Eli explains “Because she has decided that what I think is more important than what others think. The stickers only stick if you let them.” What an invitation by My Maker for me to take more seriously what He thinks about Matt, than what others may think. I find this book ministers to me every time I read it to Matt. Highly recommended for every child (and adult).

To see the Amazon webpage for this book click here