by Rich Wallace
It gives me great pleasure to hereby eliminate two fundamental but archaic rules of grammar.
My son texted me this afternoon to inquire whether “whoever” or “whomever” was correct in a sentence he’d written in a report for his job. I didn’t know the answer, and I have, in fact, never known the correct answer to a “who or whom” question, and have always opted for “who” (or “whoever”). I never use whom or whomever, even though I know I’ve been “wrong” nearly half the time. So I’ve decided to change the rules.
I looked up my son’s situation in two dictionaries and the Chicago Manual of Style and ascertained--with about 70% confidence--that “whoever” was probably the correct choice. But then I decided, who cares? So, henceforth, “who” or “whoever” will be the right choice in every situation.
In related news, constructions such as this: “To whom shall I send this letter?” will now be cast in real English as “Who should I send this letter to?” which is the way I have always said it (and written it) anyway. Every time I have said (or written) it that way is now retroactively correct.
Here’s the simple new rule, written poetically for easy memorization: Who and whoever are always correct; whom and whomever are never.
Monday, July 30, 2012
Monday, July 23, 2012
Title: Flip Words = Create Names
by Melissa Kline
Have you ever pronounced your name backwards? When I was a teenager my friends and I would get a laugh out of seeing what our names sounded like reversed. Some of them were quite funny: Kendrick is Kcirdnek, sounds like Curd-neck, (still gives me a chuckle). My name is Assilem, sounds like Asylum. And of course there are those that are not affected like Hannah and Bob.
I started to wonder if this strange practice could be of use, other than for a good laugh, and began flipping every word I could think of. Most words sounded like gibberish, but there were actually quite a few that had a unique quality to them.
Eureka! So why not flip random words to create unusual character names?
Here are some examples:
Carrot: Torrac
Pillow: Wollip
Camera: Aremac
Closet: Tesolc
Table: Elbat
Lemon: Nomel
Soda: Ados
I've found the simplest words work best - longer ones are harder to pronounce. You may have to tweak and twist them a little. Of course, not all words work for this. You've got to do some exploring - but that's the fun part. ;)
What words would you flip for a name? Give it a try!
Thursday, July 19, 2012
The Art of Not Being Rejected
by Jon Egan
I just read Kathy’s blog post, “The Little Black Book,” and was jolted into reality about the art and craft of writing and the dedication it takes to actually be a writer. It’s so much more than just throwing words on paper and rearranging them till they fit what you had in mind in the first place.
Turns out that’s kind of the easy part. Kinda.
I’ve written so much over the years, not hugely prolific, more like a sporadic continuous pace; that doesn’t even make sense, but it does to me.
I’ve got poetry written on old time sheets; I’ve got essays written in aging lined school books; I’ve got short stories written on loose leaf pages in binders, and I’ve got books written on my laptop. I’ve only ever submitted three items for publication (I’m not counting letters to the editor or stuff my mum published in her local newspaper.)
I’m not sure why I don’t submit stuff for publication. I spoke to a therapist about it one time and she told me that in her mind there were two explanations, the first being fear of failure, and the second being fear of success. I think I just found the real reason after reading Kathy’s blog, I believe it could be the fear of the injustice of the publishing process, or at least my perception of it.
I’ve read a lot of what Kathy’s written, and while I realize it’s personal taste, I just happen to love how and what she writes and I am astonished that she isn’t a New York Times Best Selling Author! No this isn’t a mutual admiration society between me and Kathy, it’s just that I know how hard she’s worked at this and it blows my mind. And while it blows it, it also scares me that someone so talented isn’t yet coasting along as a well-regarded writer. If Kathy can’t break in, then what hope is there for me? Why should I bother to submit and suffer through the heartache of rejection, or worse yet, the heartache of not even hearing back.
It scares me that someone as organized as Kathy is when it comes to their craft isn’t a member of The Club, because I really, really suck at organization.
So what is the answer? Is it a magic stamp on the submission envelope? A secret handshake at the conventions we attend? Is there a certain day that you should mail/e-mail your submission? There’s a lot of bad published writing out there (again it comes down to personal preference) that some acquisitions editor and committee sat down and went, “Yep, this ones a winner,” when in reality it’s really bad; I mean can’t-get- past-the-first-page bad and yet it makes it to the hallowed grounds of published book.
I guess maybe that’s the real fear I have, the fear of subjectiveness, the fear that because my manuscript didn’t land on the interns' desk on the right day, or that they maybe had a hangover the morning they picked up my stuff and were reaching for the Alka Seltzer while scanning the first sentence, that my manuscript suddenly becomes a distraction rather than an attraction, that my manuscript was used to wipe up the spilt coffee caused by trembling hands, or that the intern forgot where he/she was in the pile sitting on their desk and mine was unintentionally, but cruelly, passed over for consideration.
I may have a completely unrealistic and inappropriate fear, but I think there has to be some credence to my theories, or else we would surely not hear these stories of rejection from writers of the caliber of the Kathy Wiechman’s of the world. I think my stuff should make it onto bookshelves, and I do believe that I’m a good writer, even if I don’t know how to punctuate, but I have a feeling my stuff won’t make it onto bookshelves even if I do send it out, so I sit back and take the easy way out and don’t even submit it.
Am I alone in my fears?
How many of you people reading this blog have an un-submitted piece sitting in their drawer?
How many have simply given up submitting anything and now just write to write?
I just read Kathy’s blog post, “The Little Black Book,” and was jolted into reality about the art and craft of writing and the dedication it takes to actually be a writer. It’s so much more than just throwing words on paper and rearranging them till they fit what you had in mind in the first place.
Turns out that’s kind of the easy part. Kinda.
I’ve written so much over the years, not hugely prolific, more like a sporadic continuous pace; that doesn’t even make sense, but it does to me.
I’ve got poetry written on old time sheets; I’ve got essays written in aging lined school books; I’ve got short stories written on loose leaf pages in binders, and I’ve got books written on my laptop. I’ve only ever submitted three items for publication (I’m not counting letters to the editor or stuff my mum published in her local newspaper.)
I’m not sure why I don’t submit stuff for publication. I spoke to a therapist about it one time and she told me that in her mind there were two explanations, the first being fear of failure, and the second being fear of success. I think I just found the real reason after reading Kathy’s blog, I believe it could be the fear of the injustice of the publishing process, or at least my perception of it.
I’ve read a lot of what Kathy’s written, and while I realize it’s personal taste, I just happen to love how and what she writes and I am astonished that she isn’t a New York Times Best Selling Author! No this isn’t a mutual admiration society between me and Kathy, it’s just that I know how hard she’s worked at this and it blows my mind. And while it blows it, it also scares me that someone so talented isn’t yet coasting along as a well-regarded writer. If Kathy can’t break in, then what hope is there for me? Why should I bother to submit and suffer through the heartache of rejection, or worse yet, the heartache of not even hearing back.
If talent alone is required to be a prominent writer, then Swagger writer Kathy Cannon Wiechman should be there by now. |
It scares me that someone as organized as Kathy is when it comes to their craft isn’t a member of The Club, because I really, really suck at organization.
So what is the answer? Is it a magic stamp on the submission envelope? A secret handshake at the conventions we attend? Is there a certain day that you should mail/e-mail your submission? There’s a lot of bad published writing out there (again it comes down to personal preference) that some acquisitions editor and committee sat down and went, “Yep, this ones a winner,” when in reality it’s really bad; I mean can’t-get- past-the-first-page bad and yet it makes it to the hallowed grounds of published book.
I guess maybe that’s the real fear I have, the fear of subjectiveness, the fear that because my manuscript didn’t land on the interns' desk on the right day, or that they maybe had a hangover the morning they picked up my stuff and were reaching for the Alka Seltzer while scanning the first sentence, that my manuscript suddenly becomes a distraction rather than an attraction, that my manuscript was used to wipe up the spilt coffee caused by trembling hands, or that the intern forgot where he/she was in the pile sitting on their desk and mine was unintentionally, but cruelly, passed over for consideration.
I may have a completely unrealistic and inappropriate fear, but I think there has to be some credence to my theories, or else we would surely not hear these stories of rejection from writers of the caliber of the Kathy Wiechman’s of the world. I think my stuff should make it onto bookshelves, and I do believe that I’m a good writer, even if I don’t know how to punctuate, but I have a feeling my stuff won’t make it onto bookshelves even if I do send it out, so I sit back and take the easy way out and don’t even submit it.
Am I alone in my fears?
How many of you people reading this blog have an un-submitted piece sitting in their drawer?
How many have simply given up submitting anything and now just write to write?
Monday, July 16, 2012
Dirty Face
posted by Regina Gort
Violet Gort |
Where did you get such a dirty face,
My darling dirty-faced child?
I got it from crawling along in the dirt
And biting two buttons off Jeremy’s shirt.
I got it from chewing the roots of a rose
And digging for clams in the yard with my nose.
I got it from peeking into a dark cave
And painting myself like a Navajo brave.
I got it from playing with coal in the bin
And signing my name in cement with my chin.
I got if from rolling around on the rug
And giving the horrible dog a big hug.
I got it from finding a lost silver mine
And eating sweet blackberries right off the vine.
I got it from ice cream and wrestling and tears
And from having more fun than you’ve had in years.
This is your reminder that in order to be a great writer, you must have great experiences. To have great experiences, you must get your face dirty. Go out get dirty and enjoy the spoils of the summer. I am off to hunt up mushrooms, pick some berries, make some jam, and maybe even skinny dip.
How will you get dirty?
Thursday, July 12, 2012
Free therapy
By Juliet Bond
I have a confession.
I have a confession.
I didn’t read as a child. While my children’s book writer friends wax poetic about the books that shaped them – Winnie the Pooh, Alice in Wonderland, Ramona – I smile and nod as if I can relate. I’m not totally full of crap. I have read those books. But I read them as an adult.
As a child, we didn’t have many children’s books in the house and this never bothered me because I was a singer, a music listener and a dance-around-the-room-in-anything-pink-and-frilly kind of girl. I also loved old black and white movies, especially those where the heroine lifts the back of her hand to her forehead in despair.
I still love those.
The only real books I remember reading as a child was the Beatrix Potter series and I read those not so much for the stories but for the triumph of finishing a whole book (also, there was something about those Two Bad Mice and their make believe lives within dollhouses that really appealed to me – I’m going to have to explore that one in therapy…)
But falling in love with children’s books didn’t really happen for me until I had my own children. The morning I fist brought my tiny son over to our brand new, blue-cushioned rocking chair, sat down and cracked open Goodnight Moon, was a revelation. The cadence of the words, the lovely pictures, the sound of my voice as I mimicked the old lady whispering hush, was magical!
I joked about roping my young taste in reading into my therapy sessions but there is some truth to the folly. As my children grew up, I learned to use children’s books to prepare my kids for every new experience:
· Going to the dentist
· Staying the night at grandma’s
· The first day of kindergarten
I also used them as a voice to respond to incidents I hadn’t planned for.
· A pet dies
· A friend moves away
· Navigating a bully at school
In 2003, when a friend of mine went into a coma leaving her three children behind, I looked for a book to help her children cope with and make sense of their unusual situation. There were no, “parent is in a coma and the outcome is unclear” books so I tried my hand at creating a children’s book just for them.
It worked. The story I gave them was a (light) balm for their confusion and grief. And the stories I brought home for my own kids helped them to, if not triumph over difficult situations, feel like they were less alone in them. After all, Molly Lou Melon had a bully (Stand Tall Molly Lou Melon!), Mean Jean eventually learned to play nice with other kids (Mean Jean the Recess Queen), and Lilly Mouse discovered friends in her new neighborhood (Chester’s Way.)
Reading a book can be a subtle form of therapeutic support. It can prepare you for life’s challenges or soothe you when the world seems determined to get in just one more ugly punch.
So use books for yourself or for your children. Use them to learn, to glean pleasure, to bear up and to heal. Because when you read a book it becomes a part of your identity. The stories or information sandwiched between soft pages can shape who you are and who you will become, no matter what your age.
Monday, July 9, 2012
THE LITTLE BLACK BOOK
by Kathy Cannon Wiechman
In my office I have a big blue ledger, where I keep a record of all my manuscript submissions. I took writing classes many years ago from author Stephanie S. Tolan, and Stephanie was the one who told me to keep this list.
I made columns for title, date submitted, name and address of the editor, and publishing house submitted to, and the final column for the result. This final column usually says “Rejected” and a date. But I’ve kept this ledger for a very long time, and a few are marked “Accepted” or “4th Place” or “5th Place” for a contest entry. These are in red and punctuated with an exclamation point!
Some have an asterisk, if I was asked for a revision. Then when I resubmitted, I marked that with another asterisk.
More recently, the last column is sometimes blank, and I’ll go on record here with my complaint about the, “If you don’t hear from us, we’re not interested” policy of many houses these days. If I send an SASE, why can’t they slip a form rejection into that envelope and give me the common courtesy of a reply?
But the main reason for my post today is to write about the little black book from the title. It sits on the nightstand beside my bed, and is 75 years old. It has handmade alphabetized tab pages and was my mother’s equivalent of my big blue ledger.
Mom’s high school English teacher, Miss Etta O’Hara (who became my godmother), encouraged her to submit her work. And during high school, Mom kept this record of poems she submitted to newspapers, magazines, and literary publications. Each poem has its own page, with a list of places she submitted that poem. Each is marked “Returned” or “Accepted,” and sometimes “Printed” with the date the poem appeared.
The little black book sits and gathers dust most days, but every now and then, I pick it up and page through it to remind myself to keep submitting, just as “Aunt Etta” encouraged Mom.
The sad part of this story is that I have only these titles and no copies of the poems. I remember Mom showing me a newspaper clipping with the one titled, BROKEN BRANCHES, and I remember the sentiment of the poem and the final line: “Broken branches left to die.” According to the book, it was accepted on 9/21/37 and printed on 10/28/37 in a local (and now long defunct) newspaper.
Mom’s style usually used very strict rhyme and meter, and she taught me how to make a poem scan when I was only five.
She went on to write numerous poems for children that were published, and I have a small worn paperback book with a few of them. There are a couple I still know by heart from when Mom taught them to the nursery school she ran in our house.
These poems have a different hand motion for each line. I taught them to my grandson when he was fascinated by the hand motions his day care teacher did to ITSY, BITSY SPIDER. If you read my post from 7/2/12, you know that my grandson is “special.” Speaking is difficult for him, but he took to the poems’ hand motions right away. A poem about a caterpillar spinning a cocoon has a symbol for that cocoon, and my grandson used to do that sign to refer to me because I was the one who taught him the poem. It was a way for him to communicate. Mom didn’t live long enough to meet this great grandchild of hers, but she’d be thrilled to know that he loved her poem, and that it was an opening for him to express himself with sign language.
A few nights ago, I paged through Mom’s little black book, and wondered about the poems behind the titles. One was BEAUTY AND THE BEAST, and it was returned after each of four submissions. I have no clue to its content, so I scribbled down my own.
The beauty of the written word
Can be a wondrous feast,
From tales of rich and famous folks
To those who have the least,
And words of journeys to the moon,
Deep South, or Middle East.
But when rejection letters come,
Those words can be a beast!
It isn’t great literature, or even good poetry, but I felt Mom beside me as I put down the words. And it scans! She’d have liked that.
In my office I have a big blue ledger, where I keep a record of all my manuscript submissions. I took writing classes many years ago from author Stephanie S. Tolan, and Stephanie was the one who told me to keep this list.
I made columns for title, date submitted, name and address of the editor, and publishing house submitted to, and the final column for the result. This final column usually says “Rejected” and a date. But I’ve kept this ledger for a very long time, and a few are marked “Accepted” or “4th Place” or “5th Place” for a contest entry. These are in red and punctuated with an exclamation point!
Some have an asterisk, if I was asked for a revision. Then when I resubmitted, I marked that with another asterisk.
More recently, the last column is sometimes blank, and I’ll go on record here with my complaint about the, “If you don’t hear from us, we’re not interested” policy of many houses these days. If I send an SASE, why can’t they slip a form rejection into that envelope and give me the common courtesy of a reply?
But the main reason for my post today is to write about the little black book from the title. It sits on the nightstand beside my bed, and is 75 years old. It has handmade alphabetized tab pages and was my mother’s equivalent of my big blue ledger.
Mom’s high school English teacher, Miss Etta O’Hara (who became my godmother), encouraged her to submit her work. And during high school, Mom kept this record of poems she submitted to newspapers, magazines, and literary publications. Each poem has its own page, with a list of places she submitted that poem. Each is marked “Returned” or “Accepted,” and sometimes “Printed” with the date the poem appeared.
The little black book sits and gathers dust most days, but every now and then, I pick it up and page through it to remind myself to keep submitting, just as “Aunt Etta” encouraged Mom.
The sad part of this story is that I have only these titles and no copies of the poems. I remember Mom showing me a newspaper clipping with the one titled, BROKEN BRANCHES, and I remember the sentiment of the poem and the final line: “Broken branches left to die.” According to the book, it was accepted on 9/21/37 and printed on 10/28/37 in a local (and now long defunct) newspaper.
Mom’s style usually used very strict rhyme and meter, and she taught me how to make a poem scan when I was only five.
She went on to write numerous poems for children that were published, and I have a small worn paperback book with a few of them. There are a couple I still know by heart from when Mom taught them to the nursery school she ran in our house.
Kathy Cannon Wiechman's mother |
These poems have a different hand motion for each line. I taught them to my grandson when he was fascinated by the hand motions his day care teacher did to ITSY, BITSY SPIDER. If you read my post from 7/2/12, you know that my grandson is “special.” Speaking is difficult for him, but he took to the poems’ hand motions right away. A poem about a caterpillar spinning a cocoon has a symbol for that cocoon, and my grandson used to do that sign to refer to me because I was the one who taught him the poem. It was a way for him to communicate. Mom didn’t live long enough to meet this great grandchild of hers, but she’d be thrilled to know that he loved her poem, and that it was an opening for him to express himself with sign language.
A few nights ago, I paged through Mom’s little black book, and wondered about the poems behind the titles. One was BEAUTY AND THE BEAST, and it was returned after each of four submissions. I have no clue to its content, so I scribbled down my own.
The beauty of the written word
Can be a wondrous feast,
From tales of rich and famous folks
To those who have the least,
And words of journeys to the moon,
Deep South, or Middle East.
But when rejection letters come,
Those words can be a beast!
It isn’t great literature, or even good poetry, but I felt Mom beside me as I put down the words. And it scans! She’d have liked that.
Thursday, July 5, 2012
Wanted: Inexperience
by Kim Van Sickler
“Inexperience provides us with a childlike fearlessness that is the polar opposite of the alleged wisdom that age confers on us, the ‘wisdom’ telling us some goals are foolish, a waste of time, invitations to disaster. In its purest form, inexperience erases fear. You do not know what is and is not possible and therefore everything is possible." Twyla Tharp: The Creative Habit
“Inexperience provides us with a childlike fearlessness that is the polar opposite of the alleged wisdom that age confers on us, the ‘wisdom’ telling us some goals are foolish, a waste of time, invitations to disaster. In its purest form, inexperience erases fear. You do not know what is and is not possible and therefore everything is possible." Twyla Tharp: The Creative Habit
I’m trying to preserve my innocence.
Some of you may be familiar with my journey. You bait your hook, then wait for bites. The bulk of the fish swim by, but a few pause. They take a nibble. You begin to think that one will stay for the entire meal. Because one good fish is all you need.
But at the end of the day, all you’ve got are the few nibbles. None of them took that hefty bite you needed to catch them.
Your options are to throw your hands up in frustration and declare that enough is enough. Or…keep doing exactly what you’ve been doing, even though it hasn’t worked. Or…change your strategy. If you want to catch that fish, you can’t let past failures impede future efforts, but you also may need to re-think the way you’re going about trying to catch one.
I’m at that point right now. I’ve recently received two personalized rejections on two different manuscripts from agents who asked for fulls, but passed. I don’t want to wallow in helplessness, frustration, or fear. I don’t want to analyze why I’m doing this and what my odds are of success.
I plan to keep fishing.
After a little reconnaissance, I’ve devised a new plan of action. The month of June was devoted to revamping one novel with an eye toward addressing Agent #1’s comments. That manuscript is now with a group of beta readers. July is the month for me to retool the second manuscript, keeping in mind the comments I received from the second agent. By August, I hope to have both of those manuscripts in circulation again. Then I’ll resume first edits on manuscript number three.
It helps to have a plan of action. I focus on it rather than obsessing over the bigger picture, namely: will an agent ever bite?
Is all this effort a waste of time?
Am I foolish in believing that anyone will ever want to publish my books?
Is continuing to revise and release my manuscripts just opening myself up to pain and heartache?
I want to stay too inexperienced to get jaded or doubt myself. I want to remain too inexperienced to feel anything other than that my efforts will someday succeed. And I need to continue to write, revise, and submit with enthusiasm, dedication, and diligence. That’s the only way to catch that fish.
Monday, July 2, 2012
SPECIAL PEOPLE
By Kathy Cannon Wiechman
In the past decade or so, we have seen MG & YA books about “special” people, those with “handicaps.”
Lynn E. McElfresh wrote Can You Feel the Thunder from the Point of View of the brother of a deaf/blind girl, & Cynthia Lord wrote Rules, from an autistic boy’s sister’s POV. The genre moved forward and we found ourselves in the actual POV of the “special” person: Francisco X. Stork’s Marcelo in the Real World, Kathryn Erskine’s Mockingbird, & Sharon Draper’s Out of My Mind. These authors provided powerful stories, which let us inside the frustration & struggle of these individuals.
Every season, more books of this kind are released. It has raised awareness of people who are “different.” I was thrilled. I have special reasons to be drawn to these books—some very special people in my own life.
In 2000, my daughter Wendy worried because her 18-month-old son didn’t walk yet. She pushed his pediatrician for answers until they were sent to a neurologist, who examined him and found him physically perfect. But the doctor drew blood to check on other things—and one more blood test just in case.
Weeks later, by which time her son did walk in his own clumsy fashion, she was informed that the final blood test revealed her son has Fragile X. Fragile what?! We’d never heard of it. Wendy was sent to the genetics department at the local Children’s Hospital, where she learned plenty. We all did. We learned that my grandson was indeed “Special Needs.” We also learned that Fragile X is genetic and Wendy carries the gene. She cried long and often over the fact that she had passed this trait to her son. It was tough on her.
But we are a big family. I have four children, am one of seven, and my husband is one of seven. This diagnosis would have far-reaching effects. Blood tests began, and we learned that Kelly, our other daughter, also carries the gene. Her daughter was nearly two by the time test results were in. That grandchild also has FXS (Fragile X Syndrome). In those intervening months since we had begun to educate ourselves on this genetic villain, we had suspected it. Our granddaughter didn’t talk—and FXS causes speech problems.
FXS is a “spectrum” disorder, which means it has a broad spectrum of symptoms. In addition to speech problems, it can cause mild learning disabilities, extreme shyness, sensory issues, hand flapping, autism and severe mental retardation. We were overwhelmed.
My blood test showed I don’t have Fragile X, which was a relief to my sons. Since the X chromosome is the one involved, it cannot be passed father to son. A mother can pass it to either gender, but a father can only pass it to his daughters. While my sons were relieved not to carry the gene, my husband was devastated to know he does. It has been difficult for him.
Our past dozen years have been ones of learning, acceptance and adjustment. Sensory issues make my grandson uncomfortable at an amusement park. (He can’t tolerate loud noise or crowds.) We no longer take him there. And routine is important for these special ones, so while dozens of Disney classic cartoons gather dust on my shelf, my grandkids watch the same SpongeBob or Scooby Doo cartoon three times in a row.
Our grandson (who was diagnosed on the autistic spectrum) has to have his “Bobs,” small plush toys that he has carried since he was small. They provide him comfort when the outside world overwhelms him, and they are mended repeatedly from the too-much-love-and-handling they receive.
Kelly gave us a new granddaughter in 2003, who also tested positive for Fragile X, but her symptoms are much milder than the two older grandchildren. She is very close to a “typical” child, and if we had not educated ourselves on these issues and hadn’t had her tested, she is the type who might have gone undiagnosed.
There are hundreds of stories I could tell you (and perhaps I will in future posts) about what these special kids have added to our lives (a few tears, but much, much joy). But this post is to raise awareness. When news stories say “there is no known cause of autism,” it isn’t always true. Sometimes Fragile X is the cause, and Fragile X can be detected with a blood test. No, there is no cure—as yet—for FXS, but once you know that you or a family member carries the gene, you can make educated decisions and seek early intervention. It helps to know what you’re dealing with.
A nun friend once told me that, “God gives special children to special people.” I am proud of the mothers that my daughters have become, and I feel quite blessed with my family.
To learn more about Fragile X, go to www.fragilex.org
In the past decade or so, we have seen MG & YA books about “special” people, those with “handicaps.”
Lynn E. McElfresh wrote Can You Feel the Thunder from the Point of View of the brother of a deaf/blind girl, & Cynthia Lord wrote Rules, from an autistic boy’s sister’s POV. The genre moved forward and we found ourselves in the actual POV of the “special” person: Francisco X. Stork’s Marcelo in the Real World, Kathryn Erskine’s Mockingbird, & Sharon Draper’s Out of My Mind. These authors provided powerful stories, which let us inside the frustration & struggle of these individuals.
Every season, more books of this kind are released. It has raised awareness of people who are “different.” I was thrilled. I have special reasons to be drawn to these books—some very special people in my own life.
In 2000, my daughter Wendy worried because her 18-month-old son didn’t walk yet. She pushed his pediatrician for answers until they were sent to a neurologist, who examined him and found him physically perfect. But the doctor drew blood to check on other things—and one more blood test just in case.
Weeks later, by which time her son did walk in his own clumsy fashion, she was informed that the final blood test revealed her son has Fragile X. Fragile what?! We’d never heard of it. Wendy was sent to the genetics department at the local Children’s Hospital, where she learned plenty. We all did. We learned that my grandson was indeed “Special Needs.” We also learned that Fragile X is genetic and Wendy carries the gene. She cried long and often over the fact that she had passed this trait to her son. It was tough on her.
But we are a big family. I have four children, am one of seven, and my husband is one of seven. This diagnosis would have far-reaching effects. Blood tests began, and we learned that Kelly, our other daughter, also carries the gene. Her daughter was nearly two by the time test results were in. That grandchild also has FXS (Fragile X Syndrome). In those intervening months since we had begun to educate ourselves on this genetic villain, we had suspected it. Our granddaughter didn’t talk—and FXS causes speech problems.
FXS is a “spectrum” disorder, which means it has a broad spectrum of symptoms. In addition to speech problems, it can cause mild learning disabilities, extreme shyness, sensory issues, hand flapping, autism and severe mental retardation. We were overwhelmed.
My blood test showed I don’t have Fragile X, which was a relief to my sons. Since the X chromosome is the one involved, it cannot be passed father to son. A mother can pass it to either gender, but a father can only pass it to his daughters. While my sons were relieved not to carry the gene, my husband was devastated to know he does. It has been difficult for him.
Our past dozen years have been ones of learning, acceptance and adjustment. Sensory issues make my grandson uncomfortable at an amusement park. (He can’t tolerate loud noise or crowds.) We no longer take him there. And routine is important for these special ones, so while dozens of Disney classic cartoons gather dust on my shelf, my grandkids watch the same SpongeBob or Scooby Doo cartoon three times in a row.
Our grandson (who was diagnosed on the autistic spectrum) has to have his “Bobs,” small plush toys that he has carried since he was small. They provide him comfort when the outside world overwhelms him, and they are mended repeatedly from the too-much-love-and-handling they receive.
Kelly gave us a new granddaughter in 2003, who also tested positive for Fragile X, but her symptoms are much milder than the two older grandchildren. She is very close to a “typical” child, and if we had not educated ourselves on these issues and hadn’t had her tested, she is the type who might have gone undiagnosed.
There are hundreds of stories I could tell you (and perhaps I will in future posts) about what these special kids have added to our lives (a few tears, but much, much joy). But this post is to raise awareness. When news stories say “there is no known cause of autism,” it isn’t always true. Sometimes Fragile X is the cause, and Fragile X can be detected with a blood test. No, there is no cure—as yet—for FXS, but once you know that you or a family member carries the gene, you can make educated decisions and seek early intervention. It helps to know what you’re dealing with.
A nun friend once told me that, “God gives special children to special people.” I am proud of the mothers that my daughters have become, and I feel quite blessed with my family.
To learn more about Fragile X, go to www.fragilex.org
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