Books Are Great, Too!

So many books about people with disabilities have that whole "inspirational story" angle to them. When I first had my son, I thought these books were great! Then I started to think about how people with medical issues are not around for everyone else to get inspired by. That shouldn't be the requirement of anyone's lives.

With that said, here are a few books that have inspired me hhah along the way:

Reflections from a Different Journey. What Adults with Disabilities Want All Parents to Know, edited by Stanley D. Klein and John D. Kemp. This one has all the usual inspirational stories that get on my nerves, but I did learn two things from it: how to react when people stare and that my son is not my client or patient; he is merely my son. I have been guilty of treating him like my client or patient all too often, so I try to keep this in mind now. I'll write more on that later.

I really like Disability Is Natural: Revolutionary Common Sense for Raising Successful Children With Disabilities by Kathie Snow. She has a great website, too, at http://www.disabilityisnatural.com/. This book and website will change how you view people with disabilities.

Then there’s Changed by a Child: Companion Notes for Parents of a Child with a Disability. It’s great reading something by someone who has been through so many experiences that are so similar to mine. Sometimes I think I “think too much,” but reading this book, it makes me feel NORMAL to feel the way I do. I would recommend it to any parent with a child with a disability. Among other things, even though the book was written 10 years ago, she’s opposed to the term “special needs,” as I am, and she talks about it just like I think of it: “special needs” is just a way of saying “segregated.”

So much of the book is about the conflicting feelings parents may experience. She has short 1- or 2-page essays, and you can just turn to one and read however many you like. You’ll always come across something new, something written by someone who truly understands. An example: She talks about a father whose son (with a cognitive disability) is doing well, but then he comes home to see his son lonely while his siblings have all gone out with their friends. This brings up all kinds of feelings for the father, all the old feelings and fears:

The emotions do not fade. The intense sorrow and grief we felt when we first found out about our child’s disability live on in us and, like the emotions connected with other significant events in our life, will continue to be exposed by unexpected words or events. We cannot choose the moments when the covering of everyday life will tear and we will feel that first pain afresh. The rips will catch us unexpectedly, arising out of the most mundane events. There is really no way to anticipate or avoid them.

And we needn’t wish to avoid these moments of hurt, because they tell us we are alive—alive to live our own life experience and alive to our child and to everything about him. The part of us tender enough to feel that pain is the same part that enables us to respond to our child’s feelings, love him, and take action on his behalf.

Some other books that have kind of the “inspirational” angle but are still worth reading are:

Giant Steps: The Story of One Boy’s Struggle to Walk by Gilbert Gaul was probably the first book I read after my son was born. It was helpful to read about someone who had gone practically the exact same “birth experience” as me. The author’s son has spina bifida, so he writes about that and also about insurance struggles and things like that.

I read Still Me by Christopher Reeve when my son was a newborn, too. It gives a good perspective on what it felt like to him when he was coming to terms with his paralysis. This is not exactly the same viewpoint kids with CRS will have, but it was a good insider’s look anyway.

Related to the Christopher Reeve book is FDR's Splendid Deception: The Moving Story of Roosevelt's Massive Disability And the Intense Efforts to Conceal It from the Public on our only president who has been a wheelchair user, Franklin Roosevelt. The book is It spends a lot of time focusing on his rehabilitation at Warm Springs and then how he became president “despite” his disability. (I also saw a pretty good movie made from this book, starring Kenneth Branaugh, of all people as Roosevelt—and he was really good!)

I recently read Life As We Know It: A Father, a Family, and an Exceptional Child by Michael Berube. This one has a lot of “intellectual-speak,” including mention of every graduate student’s worst nightmare, Foucault! If you’ve taken even one graduate class in the humanities, you probably know what I mean. However, the parts about his son, who has Down syndrome, and how he came to terms with it as a father, are pretty interesting and helpful to other parents.

No Excuses: The True Story of a Congenital Amputee Who Became a Champion in Wrestling and in Life by Kyle Maynard, a kid with no arms or legs who is into wrestling.

You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children With Disabilities edited by Stanley Klein and Kim Schive is melodramatic and has that whole “inspirational” angle, but if you want more first-person stories from parents, this one is good for that.

Some of these books don’t do everything right, or the way I’d like them to do things, but I think you can find something of worth in each one.

Also, to find more books, this site looks really promising: Disabilities Books at http://www.disabilitiesbooks.com/.

Message Boards: An Invaluable Resource!

My links to the right are getting very long, but I wanted to add these links to CRS/SA message boards. Meeting other parents and also adults who have the condition helped me so much in the beginning, and we continue to share information every day that is so helpful. There was a pretty bad mesage board on MSN when I first had Jordan. I would stare at the images on there at 4 am while holding him when he wouldn't sleep. It was scary to see those black and white images of children with the condition that he has. Their eyes were blacked out for anonymity, somehow making it worse. I know it was for privacy, but to me, it was just more impersonal and scarier.

But things have progressed a lot since then, and the following yahoo message boards have been nothing but helpful to me. I can't imagine doing this without talking to other people who actually know what CRS/SA is!!!

These ones are the most active:
caudalregressionsyndrome
Sacral_Agenesis_Australia (this is a new group that is somewhat active, and they do accept Americans!)

These have very few postings, but it's good to join all of them just in case:
caudal_regression
SacralAgenesis
sacralagenesis2

These are some related message boards.
clubfoot
Warning: The clubfoot boardhas members who mainly believe in nonsurgical clubfoot methods. These do not always work for kids with CRS/SA.

LMC-TCS
Not all people with CRS have tethered cord, but it's good to know about the condition and be on the lookout for it.

I also find it very helpful to be on some spina bifida boards. Because SB is much more common, the groups have a lot more postings usually. And of course, many of the bladder, spinal, and lower extremity issues are very similar between CRS and SB.
InternationalSpinaBifidaSup...

Spina Bifida Parents List: This one is very active and has great members with great information and advice.
Add Yourself to the ListServ:Send an email to: SBParents-on@lists.sbaa-communities.org. Leave the subject line and the body blank.

The Diabetes Thing

Today I learned that the term "the syndrome of caudal regression" was first used in 1960 by Dr. Bernard Duhamel. I am still unclear about whether the term CRS replaced SA or means the same thing. I have thought that CRS is the older term, but others have disagreed with me.

It seems that researchers are always trying to make the case that CRS is related to maternal diabetes. Yet they admit that this is the cas e only 16% of the time. That leaves 84% totally unknown. Hmmm....

The article below discusses twins, one with CRS and one without. It seems that there is more to the situation than the maternal environment....

Zaw W, Stone DG: J Perinatol 22, 171-174, 2002.

Here is a strange one about an association with retinoic acid. They are adding another teratogen on top of maternal diabetes to cause CRS.

Chan BWH, Chan K-S, Koide T, et al: Maternal diabetes increases the risk of caudal regression caused by retinoic acid. Diabetes 51:2811-2816, 2002.

Another teratogen one, which states: "It is postulated, therefore, that diabetes may act as a coteratogen enhancing the teratogenic effect of other insults but may not itself cause malformations."

McCarter RJ, Kessler II: Is diabetes mellitus a teratogen or a coteratogen? Am J Epidemiol 125(2):195-205, 1987.

But what about when the mother does NOT have diabetes and took good care of herself, worked in a nontoxic job, took prenatal vitamins and folic acid for 3 years before conceiving....? I guess I shouldn't dwell on this, but when some pregnant women are literally on drugs and I took care of myself, yet I was the one to have this.... My son is wonderful, and I really can't imagine him any other way. I am just still wondering what is going on here and why this happened. I guess there really is no answer.