Book Review: The Guide to Good Health for Teens and Adults with Down Syndrome

Woodbine House sent me a copy of The Guide to Good Health for Teens and Adults with Down Syndrome by Brian Chicoine, MD and Dennis McGuire, MD.

The authors are physicians at the Adult Down Syndrome Center of Advocate Lutheran General Hospital in Park Ridge Illinois which has served more than 4500 people with Down syndrome since it opened in 1992. The authors tell us that neither of them are parents of a child with Down syndrome, but are willing to work with and listen to people with Down syndrome and have done so for many years (many readers will know the authors from their presentations at the National Down Syndrome Congress Conferences each year.)The book is based firmly in research and clearly benefits from their considerable experience.

Written in a personable tone that is informative and low on medical jargon there are chapters discussing each bodily system including skin, eyes, respiratory and digestive systems and more. Each chapter focuses on things things that are more common or are experienced differently for people with Down syndrome. There are also sections about health and wellness in the community, as well as outpatient and inpatient care--and handy things like 'what to look for in a physician.'

The authors share a nuanced understanding of the ways cognitive disabilities affect both health issues and their treatment. They recognize tendencies that people with Down syndrome seem to follow (without becoming stereotypical!) They also acknowledge some differences that are evolving as the quality of things like education and healthcare for people with Down syndrome improve.

I really appreciated things like the section on encouraging more fluids as well as the chapters on overarching issues like Preserving Health and Well-Being over the Long Term, and discussions about advance directives and such.

When Jennifer was a baby the book, Babies with Down Syndrome was never out of reach. This is the book to keep on hand for adulthood--both to review health and preventative needs and when facing health concerns. I found it to be informative and accurate and accessible. There is also a companion book by these authors called Mental Wellness in Adults with Down Syndrome.

Reluctant Book Review Because My Silence Will NOT Protect You!

I admit I am nervous about writing this post. I know that this is a topic that makes a lot of people uncomfortable. And I know the spam this post will draw is bound to upset me... But this is a topic that is just too important to avoid.

The Book: Teaching Children with Down Syndrome about Their Bodies, Boundaries and Sexuality: A Guide for Parents and Professionals by Terri Couwenhoven, MS.

Yes, I am going there!

Safe and appropriate knowledge and behaviors regarding our bodies and our sexuality are necessary for anyone to be successful and happy in this world. Yet a number of factors often work together to deny this essential information from being successfully taught to people with Down syndrome.

Many people believe that people with cognitive disabilities are eternal children therefore teaching appropriate boundaries, etc doesn't matter... others believe that information about sexuality and relationships is just too complex for someone with Down syndrome to learn. Then there are myths like the one that people with Down syndrome can't be taught safe boundaries because something in them makes them hug (ugh!!!)

That's right, it's a myth.

There are also circumstances related to disability that create what the author calls 'altered scripts.' For example, your non-disabled children learn about privacy because once they become independent, adults no longer go with them into the bathroom, for example. A child that needs assistance with hygiene tasks longer, or always, does not learn about privacy the same way or in the same timeframe as other children.

And, let's face it, it can be really uncomfortable to read about the particulars about things like intercourse in relation to our children, and terrifically difficult to think about teaching these and the more abstract sexuality concepts to someone who is a more concrete thinker or who needs a lot of support to learn.

But none of this makes avoiding sexuality education acceptable.

A lack of correct information--or any information at all--about how their bodies work or how to take care of themselves, how to seek attention and how or when not to, and how to say 'no' can have terrible consequences. People who do not learn to appropriate behaviors and boundaries can end up completely isolated, can be negatively labelled, abused or can even be arrested. This is tragic and largely preventable.

This book is both overwhelming and excellent. It is overwhelming because it becomes clear early on that ABSOLUTELY EVERYTHING you have ever done, taught or modelled (on purpose or not) has an effect on your child's understanding of these materials! It also makes you realize how important correct information about the body, sexuality and relationships is to having a happy, healthy life.

The book is excellent because each chapter breaks down an important topic into manageable chunks. Each chapter has a combination of background information, a number of concepts to think about and teach, teaching strategies, activity suggestions and stories from the author about people's experiences. There are chapters on the body itself that include teaching names for body parts and teaching hygiene, chapters on puberty, developing relationship skills, privacy, dating and more. And there are helpful hand-outs in the appendix that can be copied to support many of the chapters.

I like the way the book addresses concrete things like how to trouble-shoot issues with hygiene AND more abstract concepts like "how to tell if someone is not interested in you." The book talks about how to have a healthy relationship and how to avoid and handle exploitave situations. It doesn't minimize or avoid the challenge or the necessity of teaching any of this information. The author has a daughter with Down syndrome herself and years of experience teaching sexuality and her understanding really shows.

In one respect I think that every parent of a child with Down syndrome would benefit from this book. I think parents of younger children would benefit from having a big-picture view of where seemingly little things like lack of privacy and indiscriminate hugging can lead and some tips for addressing these things early.... In all honesty though, if this book had been available when my daughter was younger it would have sat unopened on my shelf. So much of the book is geared toward older children--and so many of the topics are things that NO parent considers very deeply for their small children that it would have remained on my 'manana mountain' for a long time. (I do think that parents of younger kids could use an introductory level book to start them on the right road though. And if the author writes one I want you all to remember that it was my idea!)

I think that by the time your child is 8-10 years old this book is extremely helpful and pertinent. That will seem early to some, but as Ms. Couwenhoven says, "Puberty happens in all people, whether we are ready or not!"  Better to be ready, I say!

By the same token, I don't think it is ever too late to start to use some of the information in this book. Life is a process and better understanding of self and relationships would enhance anyone's life at any time. Parents and professionals working with teens will find this book an ideal resource, and those working with adults will find lots of helpful information as well.

Read author Terri Couwenhoven's Top 10 Questions on Down Syndrome and Sexuality.

Autism Awareness Month:Book Review:Autism and Allelulias

I was sent a copy of Autism and Allelulias by Kathleen Deyer Bolduc to review for Autism Awareness Month and I have to tell you, I love this book!

I have shared my Christian faith here before, but I was a bit anxious about this book. I was not in the mood for a sappy faith and disability book full of "if you would JUST..." then your path would be easy and strewn with rose petals. I have too many faith-full friends who work too hard to understand, interpret and deal with too many issues to have Autism minimized in this way.

At the same time I cannot tolerate the "disability is tragedy" and "Autism is the enemy" mindset either--people with Autism deserve better. They have more and ARE more than those mindsets allow.

Happily this book does not go down either of these common paths. The author has a 24 year old son with Autism, intellectual disabilities and an anxiety disorder. She has dealt with the challenges of learning, behavior and societal challenges. And she LOVES her son and wants the most for him--now, not after he somehow changes.

In short, she gets it.

It is a lovely little book. It's written in a devotional format with short chapters headed with a Bible verse followed by reflective anecdotes. There are also some touching poems (one about good mothers brought me to tears.) And each chapter ends with a prayer--prayers of joy, prayers for peace or acceptance, prayers of gratitude. You can read it in small daily doses, or read as many as you want, all at once.

You will laugh, and you will cry.

I think any parent of a child with a disability could enjoy this book--I did and neither of my kids who have diagnoses have autism. I think any parent of a child with difficult behaviors would relate to this family--Bolduc is honest and descriptive--she knows where you are. And her interpretations of her experiences--joyful and tough--through the eyes of faith will be a gift to any reader.

Book Review: Late, Lost and Unprepared by Cooper-Kahn and Dietzel

Late, Lost and Unprepared: A Parents' Guide to Helping Children with Executive Functioning by Joyce Cooper-Kahn, PhD and Laurie Dietzel, PhD is a breath of fresh air. It offers a positive and practical approach to the maddening issues of Executive Functioning Disorder.

The executive functions are our brain's coordinating and directing functions. They include such skills as planning, organizing, scheduling, initiating, emotional control and working memory, to name a few. These functions can be disordered in anyone and can be affected by upbringing, experience, maturity and disability.

When these functions work smoothly, life goes well; and when they don't, it just doesn't.

From what I have found, there are traditionally 2 approaches to executive functioning difficulties: The first is to write the child off as lazy. The second is to write long, dull, negative, theory-dense, strategy-thin, tomes about it.

Neither of these approaches has helped my family much.

This book breaks that mold. This book is short. It is divided into 2 sections. The first discusses what the Executive Functions are, how they affect our lives and how they are assessed. The second section explains the process of changing behaviors and then has a chapter about each of the 8 components of Executive Functioning.

Each chapter in this section includes explanations, short term strategies, longer-term approaches for reducing support/increasing independence, and advocacy tips for working with your child's school on the issue.

The book is designed so that you can go directly to the chapters you need. So if my son is having trouble getting started on activities, but no difficulty with impulse control you can read the one chapter and not the other.

Each chapter offers lots of strategies for change--the strategies are concrete and doable and the overall tone is positive.

For my son who has Non-Verbal Learning Disorder these issues loom very large and I have been sharing quite a lot of the book with him as I go. For my daughter who has Down syndrome many of the same concepts apply.

The book offers strategies to meet a variety of learning styles with somewhat of an emphasis on auditory prompts and reminders. For my son these are great as-is, for my daughter the auditory prompts in the book require simplifying (a modification I would expect to make with most things.)

I am finding this book useful for helping my son and daughter with their differing diagnoses, I have shared a few nuggets with my other daughter and have even claimed a few strategies for myself!

That's my idea of a helpful book!

Picture and to learn more about this book click here.

Book Review: Seven Days at Oak Valley by Ruthie-Marie Beckwith

Well, my copy of Seven Days at Oak Valley arrived in the mail yesterday afternoon and I picked it up, thumbed through it and thought I would take a minute to read the first couple of pages.

It's a murder mystery set at an institution for people with developmental disabilities in 1978. And the main character--the one who figures everything out--has a cognitive disability. The author, Ruthie-Marie Beckwith is a long-time disability rights advocate.

Before I knew it I was on page 50 and there had already been 2 deaths (with hints of others), a couple of scandals and political tangles were afoot, we've seen glaring examples of institutional living and abuses of power, and we have met a handful of compelling characters.

Then I had to feed my family and drive people places...

I am resisting (with all my might) the urge to check the last page to make sure the characters I like make it through to the end.

I don't know how it is going to end, but it's pretty engaging so far!

Introducing Embry Burrus, Author of Mama and Margaret

Hi, my name is Embry Burrus, and my big sister, Margaret is one of the funniest, coolest people I know. In fact, she is one of my most favorite people to hang out with. She loves to have fun, and is always ready for a new adventure – no matter what it is, Margaret’s up for it! She is also one of the most loving, kind and non-judgmental people I know, too. She shows me everyday what unconditional love truly is. She is the best sister anyone could hope for.

Oh, and by the way, she has Down syndrome.

That used to be the first thing I would tell people about Margaret, as if I needed to “temper” whatever I said about her with those words: She has Down syndrome.

But now, I realize that the fact that she has Down syndrome does not define her at all. People don’t like to meet Margaret and hang out with her because she is all of those things and she has Down syndrome; they like to meet her and hang out with her because she is all of those things, period.

What an awakening that has been for me—one of the many things I’ve learned from being Margaret’s sister.

I realized several years ago that there was a wonderful story in Margaret’s life, and in the journey that I have taken in being her sister, so I’ve written a book about her, and our now 90 year old mother. If you’d like to meet both of them, please visit my website .

I look forward to meeting everyone on this blog, and thank Terri for the opportunity to contribute my story!

Book Review: Disability is Natural

One of my favorite disability books of all time is Disability is Natural by Kathie Snow. I have referenced it many times on this blog, but have never reviewed it.

Well, Kathie spoke in my area recently and I was there. I had lost my copy of her book some time back so I picked up the new, revised, 2nd edition (and had it autographed, naturally!) and read it again...

I still love that book!

The book begins with a primer about disability through history and then goes on to discuss disability today, and then on to ways to change things for our own kids for the future.

Kathie applies what she calls Revolutionary Common Sense to life with a disability in our society from birth through adulthood and shows how the sub-standard, sub-poverty level, un-real lives that are a reality for so many folks with disabilities are created. She de-constructs EVERYTHING--things we hate like institutional programs, and things we love like early intervention and therapies, and everything in between.

Kathie believes that "It is just as natural (for human beings) to have a disability as it is not to," and as a result believes that the structures that exist to 'fight' disability, or accentuate inability or difference in our society must be replaced.

Period.

She advocates for replacing everything with a positive belief about disability and creative ideas for building "real lives" for all people with disabilities IN our society.

She teaches about natural supports, a belief in Assistive Technology as a FIRST resort to give people mobility or communication--not as a last resort turned to when people have been years without them. She teaches about person-first language and the idea that we are not aiming for 'independence' but for healthy interdependence.

Much of Kathie has written is hard to read because it makes us look long and hard on our ideas about disability--some of which we truly cherish... and if you envision a coddling, segregated life for your child, or if you need to be told that every recommendation your district makes will be PERFECT for your child, this book is not for you!

I don't agree with every idea in the book, and have made decisions now and again for my daughter that I know Kathie would not.

Yet, I LOVE this book.

I NEED this book.

I find it challenging and clarifying and energizing.

It is way too easy to drift away from my beliefs about my kids because of professional input, school district's capacities, the challenges of everyday living, etc. I aim to compromise and end up being compromised--and I often don't even realize it has happened. This book makes me think, adjust and get back on track--for a while!

In her seminar Kathie told a story about her son, Benjamin who has CP. When he was little he did tons of therapy and the therapists said he should not get a motorized wheelchair because if he did he would never walk.

Kathie had also made friends with disabilities through her state's Partners in Policymaking program and one man with CP told her over and over to get him a motorized chair so he could LIVE.

She finally listened to her friend when Benjamin was 9. She said that afternoon he went out in the backyard to play... by himself... for the first time in his life.

That made me cry.

She said he still can't walk, but doesn't think he would have anyway--and she thinks that is fine. Inability to walk is not a problem, lack of mobility is.

As for Benjamin, he's gotten to zoom along with his friends anywhere he wants since he was 9. He is now going to college. And he thinks that if a trade was made, it was a fine one.

This book is challenging in the extreme, and absolutely worth every cheerfully prickly moment!

Read it, I dare ya!

The photo above has me at the top, fellow NY Partners grad Jenn Machucki on the left and author Kathie Snow on the right. To read an article by Jennifer Machucki click here.

Book Review: THAT Went Well by Terrell Harris Dougan

We enter the life of author Terrell Dougan and her sister, Irene, of the book THAT Went Well through an exciting moment in the meat department of the grocery store where Terrell ducks the chicken her sister chucks at her for inisiting on buying nutritious food... We blink a little and Terrell sits us down and 'splains it all to us, in the style of that one friend we have who always has a funny story to tell.

The author and her sister were born in the 1940s and they and their family were among the pioneers who laid the groundwork for the advances in education, community living and disability-respect that families and people with disabilities enjoy today (not that we are done evolving!) We learn about Irene's diagnosis and the common 'treatment' of the day for children with cognitive disabilities which was institutionalization, the advent of special education schooling in Utah (spearheaded by their father!)and the inception of community living options--from grouphomes (legislation and grantwriting done by the author herself) to what she calls a SAM--a self-administered model.

We hear the story of a family of loving people with successful, interesting lives who willingly walk the tumultuous path of supporting Irene with committment, warmth and humor. They take on the systems, the prejudices, the 'well-meaning' and the ups and downs of supporting someone with a disability who doesn't conform to the systems while spending a fair amount of time caring for aging parents and small children.

We hear stories of Irene, her family, her love of food, her relationships, her frustrations and behavioral challenges, her endearing quirks, her successes, the systems, helpful people, annoying people, people in-between and more. Some of the stories are hilarious and, as the mom a teen with a disability, some are heartwrenching.

This is the story of what it's like to be the sister of someone with a developmental disability. It's a strong dose of reality with an equal measure of hilarity and twinkling eyes--you feel the frustrations AND the love. And throughout it all is an unwavering belief in the community and most of all in her sister.

I enjoyed the book. I liked the firsthand view of the progress that has been made for people with disabilities in recent decades. And I LOVED Irene and Terrell's relationship--and their relationship with their community. There were chapters that absolutely thrilled me (like when the neighborhood firemen--who Irene visited often--came to her lemonade stand and made her a hit in her neighborhood.) And there were parts of the book that I admit scared me (like the repeated failures of systems to meet Irene's needs--and the amount of perpetual engagement success required...)

As a parent, there was much encouragement and there were many lessons in this book. I have asked my teenagers to read it as well. I don't know what their reaction as siblings will be, but I really want to know--I will keep you posted.

The author's website has a blog--I will be adding it to my blogroll.

Celebu-WHAT???!!!! Are you KIDDING me??

Apparently this week marks the release of the new book Celebutard by NY Post writer Andrea Peyser. A look inside the book at Amazon reveals that the author constructed the title by putting together the words CELEbrity and deBUtante. She added the suffix "TARD" because she wanted to convey to the world her heartfelt appreciation and respect for celebs and debs and her inestimable esteem for people with developmental disabilities and their contributions to our culture.

NOT!!!

She used the suffix "TARD" to convey her utter disdain for celebs and debs AND people with disabilities.

She intends not only to perpetuate the undeserved negative stereotypes that people with developmental disabilities contend with , but to profit from them.

I have to tell you, it makes me sick. Can you imagine if she'd used the final syllables of the "n-word" instead? Why didn't she, do you think??

I am curious what her friend Bill O'Reilly, who conceded on the air this week that his use of the "r-word" had been pretty tacky, will have to say...

You know what would be GREAT?? If Sarah Palin weighed in against this travesty...

Let's not wait for Bill-O or Sarah P. to do the right thing. Go to the Celebutard website, go down to the bottom to the contact us section and share your opinion. Also, if you happen to live where the author is appearing, show up and bring your "Words Hit Like a Fist" cards and T-shirts. Hers cannot be the only voice the country hears about disability.

Edited to add this idea someone shared: Leave a review on Amazon abut the book...

Also, it was announced this week by actor John C. McGinley (Dr. Cox on Scrubs) that March 31, 2009 will be the First Annual End the R-Word Day.

Dr. Cox, Andrea Peyser needs a housecall--and I'm not sure it can wait until 3/31.

Here's some food for thought .

Try this Tuesday: Book Recommendation

One of the most helpful books on my shelf is Steps to Independence: Teaching Everyday Skills to Children with Special Needs by Baker and Brightman.

It is a book full of step-by-step teaching information. It tells you how to break tasks down and how to avoid pitfalls. It is also full of tasks to teach. It has chapters on get ready skills, toilet training (I didn't have it back then), behavior management, independent living skills and more. It teaches you how to teach and how to evaluate. I admit that we don't always follow the process exactly (I really can't take that much process sometimes), but I never fail to find helpful information and ideas

While I find the book sort of frustrating sometimes because it is so process-y, this is of course why I need it. I find breaking things down hard to even think about sometimes and this book always gives me a place to start.

Beyond this it fully acknowledges the problem of creating kids who are totally cue-dependent and has you teaching the child to ask themselves "what comes next?" Teaching that thought process has been the biggest "step to independence" for us. It gets me out of the middle of the task once she has the steps. From taking showers to working on schoolwork, to playing games, to household chores, this book has been a HUGE help at our house.

For other book recommendations check out this post!

Guest Blogger: Author, Gary Presley

Today we have a guest post from fellow blogger (bloggist?) Gary Presley. He has published a memoir, Seven Wheelchairs: Life Beyond Polio about his experiences with disability and has been so kind as to share some thoughts with us about writing and about disability--enjoy!

Gary writes:

Let's face it. You need to polish your ego a bit if you want to write a memoir. Frankly, I didn't have much of one. I was raised as an Army brat, which means the "children seen but not heard" school of thought. Oh, of course, a child was "heard" occasionally, but it was to say "Yes, sir" or "Yes, ma'am."

But I do have a bit of ego. In fact, I sometimes display an off-beat, twisted sense of pride that I'm one of the few people you'll ever meet who has used a wheelchair for nearly 50 years. Of course, that didn't come easy. For too long, I was something of a jerk – and an angry, bitter one at that. With that mindset, it took me several years after I begin to write before I understood that there was a story worth telling about that long, seat-of-the-pants journey.

It began when I wrote an essay entitled "A Pot to Pee in," a whimsical meditation on what it means to use that little plastic bottle called a urinal. I thought it was interesting enough, especially because it begin in the bad old days before there were accessible bathrooms.

I belong to a writer's critique group, and several members read the essay and said "You need to write a book."

And so I did. I thought maybe I could offer the world an opinion or two about what we call "disability" – about it being simply another aspect of the human condition, about the need to integrate people with disabilities fully into society, about the ugliness of institutional care, and about the absurdity of the so-called right-to-die movement.

The book – called Seven Wheelchairs: A Life beyond Polio – was a multi-year project, but it was published October 2008 by The University of Iowa Press. Many readers have responded with notes that they've begun to regard disability differently because of my book.

Now here's the odd part of this saga: In writing the book, I taught myself something too – about myself and about disability.

I learned – no, really remembered and understood – how significant a sacrifice my parents made for me after I begin to live on wheels. I learned how deeply held the guilt I feel about that – not guilt imposed by my parents but rather guilt generated by my dependence. No one ever told me what every parent should tell a child with a disability: there is no blame related to disability. Disability simply "Is" – and it is only one of the qualities that makes the child a person of value, a person worth loving, a person of promise.

And what did I learn about disability? Mostly that things are better now than in the bad old days when I became a polio quad. Better access to education and employment are the two most important. On the other hand, there's one element in the "living disabled" lifestyle that still restricts full integration. That's social integration – the idea that many of us with mobility impairments and other physical and mental conditions remain isolated. Barrier-free home construction would go a long way toward fixing that problem – as would a concerted effort by people with disabilities, and their supporters, to never hesitate to move proudly and confidently out into every community activity possible.



(The picture at the top is a photo of the author, Gary Presley. The one at the bottom is a picture of the cover of his book, Seven Wheelchairs: A Life Beyond Polio.)

Update: The New York Times gave this book a rave review!!!!

Book Review: 37 Days and Life Is A Verb

Once upon a time there was a blog that became a book… and it was magic!

I have mentioned many times here my enjoyment of the blog 37 Days. Written by author Patti Digh whose resolve to live intentionally and record her heart for her daughters was steeled by her stepfather’s death which happened 37 days after his diagnosis with lung cancer in 2003.

Well, some of Patti’s wonderful, thought-provoking essays are now a book: Life Is A Verb. Not only a book, but a BEAUTIFUL book, full of artwork contributed by her readers, inspiring quotes and more.

Patti has a personal commitment and makes her living making the world more welcoming for diversity of all kinds—and yes, she does include the disability community in this. She served on the President's Committee on Employment of People with Disabilities when Bill Clinton was president and has written essays and tips for respectful presentation of disability. While her essays aren’t mostly about disability, her words on being intentional and inclusive, speaking your truth, and making a difference are both challenging and heartening for all.

Writing a proper review of this book is actually pretty difficult at this moment because this book is made for savoring and reflection and I am resisting rushing through. The book is interactive with wide margins intended for writing and exercises for deepening connections. (And yes, for my friends who know about my Pristine--with a capital P--book obsession, I am writing in it!)

Not only is this book is full of life-lessons to share with our children and each other. I think it contains a sustainable approach to advocacy. An approach that includes care for self and for others and contrasts starkly with the adrenaline charged confrontations many of us know and fear. It’s almost a mentorship.

I love it and I think you will too! Head over to 37 Days to see where Patti Digh will be doing a reading near you and to see the other blogstops on her tour. And check out my next post--an interview with Patti Digh (yes, she really answered my question--how cool is that??)

Well, thanks for stopping by my little corner of the blogosphere. Come again, we never close!

Blog Carnival #38: Book Giveaway

In my role as Virtual Trainee for the AUCD I attended their annual meeting last fall with people from universities all around the country who work to improve lives for people with disabilities through research, service and policy. After a full day of learning and a high-energy poster session I gathered with a group of starving people and went to dinner.

In the course of dinner conversation we ended up discussing how everyone became interested in working with people with disabilities. As a mom I found it fascinating that, while everyone’s stories were unique, they were all based on relationships they’d had with people with disabilities at some point in their lives.

One of our fellow diners, Dr. Erik Carter, had gotten to know people with disabilities while working as a camp counselor—he had intended to work with the non-disabled kids at the camp, but had been re-assigned much to his surprise. He said his experience at that camp changed his life—in fact one of the campers in his charge was the person that invited him to faith.

His experience so profoundly moved him that, in addition to his career work in education and research, he wrote a book to help congregations successfully integrate people with disabilities into their faith communities.

Including People with Disabilities in Faith Communities: A Guide for Service Providers, Families and Congregations extols the value of inclusion for faith communities, shares the current research about people with disabilities in congregations and gives tools and practical advice for applying principles of hospitality, belonging and continuous growth in your own community.

He builds a case for inclusion that is convincing and compelling.

“It is not enough for congregations to simply mirror the rest of society when it comes to including people with disabilities. Rather, they are called to be leaders in transforming the culture—to graciously, lovingly and actively influence their communities. When congregations push toward a higher standard than the rest of society; when they demonstrate leadership, rather than lagging behind; and when their efforts stand in stark contrast to those of others in their community, it sends a powerful message. When a welcome is compelled by deep love and a sacred call, rather than by legal decree, it speaks powerfully to a watching world and provides strong evidence of one’s faith commitment.” (p. 17)

Later he goes on to say:

“It is more than a “nice idea” to include people with disabilities in your congregation. People of faith are called to view people with disabilities as integral to the wellbeing of their community; every member should be regarded as indispensable. When an entire segment of the population remains absent from the body of believers, that community not only remains less than it could be, it remains less than it was intended to be. Wholeness will always remain elusive to a community when the gifts and contributions of a whole segment of people are missing. Indeed, it is the community that becomes “handicapped” when people with developmental disabilities and their families are not present.” (p. 18)

The book also draws a distinction between congregations that allow people with disabilities to be present and those in which these same folks belong, participate and do more than receive but also serve and contribute their gifts.

Beyond the why’s of inclusion, a good portion of this book is dedicated to the how’s as well.

There are questionnaires to evaluate physical and attitudinal barriers to , religious education and other programs, and the needs of individuals who wish to worship with you. There is a chapter on discerning and providing supports, a chapter on the role of support staff and one about expanding your initiatives to impact your larger community.

The whole book is geared to help congregations progress continuously in their hospitality.

In short, get 2 copies of this book—one for you and one for your faith community. I think any community would benefit from the support and challenge this book presents. Churches that are struggling (like this one in Minnesota)would be much stronger after studying this book together.

In honor of this blog carnival Dr. Erik Carter has donated a signed copy of his book for a drawing. If you would like to join the drawing, leave a comment by 5pm 5/29/08 and I will draw a name and we'll send it along. Good luck!

My other post on disability and faith is here.

(Image of book from here.)

And The Winner Is..... Giveaway Results

This is a picture of my daughter reaching into the happy, red raffle bowl of joy. And the winner is "gleichs." You will be receiving an e-mail from me in a minute and I will mail you your very own signed copy of The Memory Keeper's Daughter!

Thanks for playing!!!!

Here is a link to a review of both the book AND the movie.

The Memory Keeper's Daughter--a question and a giveaway

Did anyone see the movie The Memory Keeper's Daughter on Saturday? The movie is based on the book by Kim Edwards. We were busy on Saturday night, but I really wanted to see it because I really enjoyed the book.

The book is an interesting story about Down syndrome, but I think it is just as much about having to have complete control in life--sometimes things you didn't expect (even things you always thought were bad) lead to wonderful places...

I have a signed copy of the book that I got at the National Down Syndrome Congress Conference last summer (I have another copy so the signed copy is brand new.) If you leave a comment before NOON on Friday 4/18/08 I will enter your name in a drawing and will send you the book (US entries only this time, please--not up to international shipping this week!)

Picture from here.

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Book Review: Road Map to Holland by Jennifer Graf Groneberg

When I started blogging back in 2006 it was my plan to include book reviews in my writing (hence my title.) Well now, I am finally writing one! It appears that everyone in the blogosphere reads faster than I do—I got the book on Saturday (the day it came out) and there have been reviews popping up since Sunday…. I have to write this so I can read those—the pressure is intense!

I first ran across the writings of Jennifer Graf Groneberg in the blogosphere. Jennifer is a wife and the mother of three little boys: 4 year old Carter and 2 year old twins Bennett and Avery. Avery has Down syndrome. Well known in the blogosphere for her blog Pinwheels and her contributions to Parent Dish. ,

Road Map to Holland is a beautifully written memoir of the 2 years after the author’s twins were born. Embedded in the story of the consuming life of parenting babies and toddlers is the story of expanding a family and life-vision to embrace Avery’s diagnosis of Down syndrome.

Among the diapers, spoonfuls of rice cereal and trips to the park are the moments of struggle and the moments of success, the heartwarming responses of the neighborhood children and the heart-wrenching loss of friendship with 'a woman not named Cathy.' There are the inadvertent comparisons between Bennett who is developing typically and Avery who experiences delays—and the lessons learned about each child being on their own path. Woven into the story are the supports, resources and the books that serve as guides to living and thriving with Down syndrome.

For me this book was a delight.

The title is based on the wonderful essay “Welcome to Holland” by Emily Perl Kingsley which uses the analogy of changed travel plans to show that, while changed plans are disruptive and can be upsetting for a time, unplanned destinations have charms of their own. This essay was given to me by one of my friends while I was still in the hospital after my daughter who has Down syndrome was born.

My three children are 18, 16 and 14 today and reading this beautifully detailed story brought me right back to the years of parenting 3 kids under 4—especially poignant as my oldest prepares to graduate from high school.

I remember the exhaustion and the elation. I remember the reading—many of the titles mentioned in this book are on my own shelf (or were until I passed them on to other families.) I remember the worrying and the moments that assured me that I was right where I should be.

This book is a beautiful read for new parents of children with Down syndrome, it is also a touching reminder for parents of older children—each of our stories are different in the details, but connected at the core.