Tag Archives: Autism

Starting Down the Pathway to College

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Last night marked Jason’s fourth week in the Pathway Program and I’m encouraged by what I’ve seen thus far. After a somewhat shaky start (more about that in a minute), he’s buckled down and begun to get used to a whole new routine.

First, some background on the program. Offered by BYU-Idaho, the program is designed for three different groups of aspiring college students–those who are academically challenged and need a little boost to get them ready for college work; those who need to put their lives in order to be ready to abide by BYU’s strict moral code; and those, like Jason, who may have difficulties or learning disorders that prevent them from being at ease leaving home for college.

The program is simple. Jason takes two courses a semester (an online course that provides reading materials, study guides, writing prompts and weekly quizzes . . . and a second course on Thursday nights in a classroom at the local LDS Institute). Following the second course, he gathers with the Pathway Director and the other classmates to discuss what they’ve learned online that week. All told, Thursday nights are pretty long–about 3 hours in class. But the rest of the week, the load is really quite light. This semester, Jason is taking a religion class and a course entitled “Pathway Life Skills.” Perfect for someone like my son.

I say that because it’s teaching him the true value of a college education and how it will affect his life and prepare him to serve himself, his family, and his community. In other words, it’s drawing him out to engage with the world he lives in. Exactly what he needs!

As I alluded to above, Jason’s first Thursday night class didn’t go so well back in September. But that was because there wasn’t clear communication about the schedule for the evening. After one and a half hours of the religion class, he was maxed out and rushed out of there before they even announced that a Pathway class would directly follow. Jason doesn’t drive yet, so my husband was waiting in the parking lot. When he got in the car and insisted the class was over, Michael thought it a bit strange but began to bring him home. Not ten minutes later, I got a call from the Pathway teacher’s wife (fortunately, a couple runs the program) asking where Jason had gone. After a quick call to my husband, they turned around and Jason, rather humiliated, slumped back into the classroom and hid in a corner for the rest of the evening. Needless to say, he didn’t get much out of that first class.

I thought we might have a problem getting him to agree to return the next week, but after a bit of coaxing and helping him with that first week of assignments, he went. Now, after three weeks, the routine is set. He checks his email regularly. He logs in for his assignments, does his reading, goes through the study guides, completes his Learning and Attendance Reports, takes his quiz, and prepares for the next Thursday evening class.

Dare I say he’s beginning to resemble a college student? It’s exciting to watch.

Once he completes three semesters of the Pathway Program satisfactorily, he’ll be admitted to BYU-Idaho as a full-fledged online student and be able to pursue one of nine different Bachelor’s degrees or five different Associate’s degrees (and those are only the degrees they’re currently offering . . . by the time he’s accepted, I imagine they’ll have more).

I can almost see my son’s future opening up! Now if we can only get him to take Driver’s Ed. Patience, I remind myself. At least he’s begun to be open to the idea of driving.

By the way, all my postings about Jason are now being shared over at Madison House Autism Foundation. It’s a terrific organization designed for autistic individuals (and their families) who are trying to find their way into and through adulthood. They’ve agreed to follow Jason’s Journey with me.

Originally posted 2012-10-12 03:00:23.

Contest Author Interview – Lynn D. Parsons

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(NOTE: If you haven’t yet heard about the contest I’m running through September 24th, go here to see the entry details, as well as the 50+ different prizes, and please think about entering. After all, there’s no limit on number of entries and there are many ways to enter. If you’ve already entered, remember that leaving a comment about this interview earns you yet another entry!)

Currently an Educational Diagnostician, Lynn D. Parsons has worked for years as a Special Education teacher and in May of last year she co-authored one of my blog contest prize offerings, (dis)ABILITIES AND THE GOSPEL, with Danyelle Ferguson. She has a master’s degree in Integrating Technology in the Classroom and is currently working on her  PhD. Let’s find out if she has any more books up her sleeve, shall we?

Me:  Growing up, did you know anyone personally with special needs and, if so, what was their situation and how did it affect you?

Lynn:  My sixth grade teacher had our class buddy up with students in the self-contained class. As we shared activities, we learned they were just like us. It really broke down barriers.

(Smart teacher!)

Me:  I see that you graduated from BYU with a bachelor’s degree in Independent Studies. What were your particular areas of emphasis?

Lynn:  My capstone project was on non-drug treatments for ADHD. I chose this topic because my friend had a son with ADHD and I saw her struggles. (Me: Wow, you were being prepared even then for your future career.)

Me:  Tell us about your family, in particular how you came to understand and cope with the special needs of some of your children. (We’d love to see a family photo, if you don’t mind.)

Lynn:  My first experiences as a special needs parent came with one son, who had speech problems and dysgraphia (writing problems). I learned to be an advocate for him to get the services he needed. One daughter also had speech and reading problems, and my previous experiences made it easier to cope. Her first grade teacher thought she would never learn to read. I blamed myself for years for her challenges, until I learned she was born this way. She’s now in her third year at BYU studying to be an occupational therapist.

(Kudos to her and you! Oh, and here’s the promised picture of Lynn’s beautiful family, less one daughter-in-law and a grandchild.)

Me:  How about your other children? Were they ever challenged by the special needs in your home?

Lynn:  My daughter didn’t speak much until she was over the age of three. She would just make noises and point to what she wanted. Her siblings were as much as ten years older, so they often gave her what she wanted without making her speak. It was easier for them that way.

Me:  How did you come to be an Educational Diagnostician and what exactly do you do?

Lynn:  My daughter’s speech language pathologist told me how to teach her to read. I bought some books from the teacher supply store and we did it. Her siblings helped by playing phonics games with her while I made dinner. I thought I was Superteacher, so I finished my bachelor’s degree and tried substitute teaching.

I was a substitute librarian for a year, and that was so much fun, I became certified as a special education teacher. I took a grant-funded elementary school position that ended after a year, and then spent seven years teaching special education English in a high school. I wanted to help more students, so I became certified as an educational diagnostician.

I spent one year at two elementary schools, and have been working at a junior high for four years. I test children for learning disabilities, keep the legal paperwork in order, and take charge of the IEP team meetings.

Me:  In co-authoring (dis)ABILITIES AND THE GOSPEL with Danyelle, how did you split the writing?

Lynn:  We had a spreadsheet with each chapter. I took those that were more “teacher” oriented, and she focused on the parenting and family aspects. We ended up writing half each. We didn’t meet in person, and one difficult challenge was that just before every deadline, someone from our families would end up in the hospital or a computer would crash.

(Well, I, for one, am glad you both persevered!)

Me:  You’ve lived in three different states, I believe–Texas, California, and Utah. Which provides the best support systems and services for those with special needs, in your opinion?

Lynn:  Texas does. California is so strapped for cash, and hamstrung by ridiculous lawsuits that they can’t do the extensive testing we can. Utah also has far more budgetary restraints and isn’t able to offer the services we do here.

Me:  Tell us about “Survivor Bunch” and how you’ve used video to help teach social skills to those with autism and Asperger’s syndrome.

Lynn:  I taught this class after school and during the summer. We did all kinds of social skills. Individuals with an autism spectrum disorder tend to be very visual, so it was a natural way to teach. I started it in summer school as a project for my master’s degree. We acted out difficult teen scenarios and job interview skills. My professor thought it was revolutionary and pushed me to get my paper academically published.

I’ve also used it to teach a five-year-old with autism to sign to communicate rather than head-butting adults.

Me:  What are you working on now in terms of writing?

Lynn:  My biggest project is to finish my dissertation! Hoping to be finished with my PhD by summer of 2014. (Me: We’re rooting for you!)

Danyelle and I are working on a book to help teach religion to those with special needs. I also have an article about reaching out to families with disabilities that will be in the “Liahona” Magazine next year. I’m also planning to work with another author on a book about raising special teens.

Lynn has also posted a number of YouTube videos about working with special needs individuals at church, and she’s created a new website to provide resources. Here’s one of those videos:

You can read more about Lynn and her work on her blog and her website.

Originally posted 2012-09-20 06:00:54.

Contest Author Interview – Danyelle Ferguson

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(NOTE: If you haven’t yet heard about the contest I’m running through September 24th, go here to see the 50 different prizes and entry details and please think about entering. After all, there’s no limit on number of entries and there are many ways to enter. If you’ve already entered, remember that leaving a comment about this interview earns you yet another entry!)

Not only is Danyelle a talented writer, but she’s a brave organizer. Along with her husband, she founded a non-profit organization (more about that later) and is helping the LDStorymakers group better serve more of its members by taking the lead in instituting a second conference in a week and a half, located in the Midwest in a place called Olathe, Kansas (a place I’ve just finished reading about in one of my thrillers–Truman Capote’s In Cold Blood…as it turns out one of the two real-life killers in the book holed up in Olathe before they committed their crimes). But I’ll give my review of that story in a few weeks once my contest is over. Now, on with my interview!

Me:  Tell us about the first article you had published when you were in 6th grade. Do you still have a copy of it?

Danyelle:  I do have a copy of it! My mom saved it in a manila envelope along with other articles about me from the time I was young until I graduated high school.

I was lucky enough to have an incredible 6th grade teacher–Mrs. Seasholtz–who encouraged my love of reading. One book was about a boy named Charlie, the poor crime-filled neighborhood he grew up in, and his relationship with the city sheriff. Rather than write a book report, my teacher suggested I invite our city sheriff to visit our class. I met with the sheriff, then he came to talk to my class about our city, crime, and how we could help with crime prevention. Afterwards, Mrs. Seasholtz sat me down at her computer and had me write my very first newspaper article. She included a picture of me and the sheriff. It was the neatest thing ever to see my article appear in our city newspaper. It made an even bigger impression on me when lots of people started calling, stopped me at the store or in the school hallways to congratulate me and ask more questions about the book or presentation. It definitely hooked me into not only writing, but being brave enough to share what I wrote with others.

(Now that’s the kind of teacher we all want our kids to have, isn’t it?)

Me:  I see that you’ve written everything from poems to short stories, not to mention your nonfiction. Which form of creative writing do you enjoy the most and why? On the other hand, which is the most challenging?

Danyelle:  Short stories are definitely the most challenging. It’s hard to fit in a beginning, middle, and end, as well as character development, in a small limited amount of words! I admire writers who specialize in short stories.

My poetry is very special to me. I only write poems when I’m dealing with really emotional situations. I started writing them when my mom was first diagnosed with cancer then continued through two more diagnoses. When she passed away just after my high school graduation, I wrote one final poem for her and tucked it into her casket. I’m honestly not the best poet – not even a really good one – but it’s the creative expression that fills my mind when life is swirling around me.

Me:  As my book includes a young boy with Asperger’s syndrome, I’m particularly interested in hearing about your oldest son who is autistic. Could you share briefly the journey you and your husband had in discovering and coming to terms with his autism?

Danyelle:  Oh wow. I don’t know how to briefly describe that. =) Actually, we thought our son just had speech delay. Looking back now, we had a rather typical experience. From birth, our son always tested early in all of his childhood developments. He started walking and talking at seven months old. He laughed, played with our friends’ kids. All the normal things you expect from a baby. Then somewhere between 12-18 months, he gradually stopped talking. We talked to our doctor about it, but he said that just happened sometimes and to wait until he was two years old. We took him back when he turned two – at which time he didn’t speak at all. The doctor said to wait another six months and we said no way. So he referred us to the local early intervention center. The center sent out someone to evaluate our son for speech delay. A few days later, they called to ask if they could come back for another visit with one of their specialists. This time after the observation, the specialist asked us if we had ever heard of autism. Neither my husband nor I knew anything about it. Little did we know that question would lead to a life-changing journey for our whole family. We made an appointment for our son to be evaluated at our local Children’s Hospital. He was diagnosed with PDD-NOS. (Me: That stands for Pervasive Developmental Disorder-Not Otherwise Specified…which really doesn’t tell you much.) All of his results came back in the severe range, except for his motor skills, which were incredibly advanced.

During the first four to six months after our son was diagnosed, I couldn’t handle reading anything about autism. I was so overwhelmed, wondering what kind of future my son would have. Instead, I dived into training sessions with our Early Intervention therapist. I attended a parent/child group therapy class twice a week. The parents in the class were incredible, helped me through those rough beginning months, and are still some of my closest friends today. Meeting families who had older kids with special needs, seeing the progress they made, helped me to have hope for my son, as well. In my opinion, coming to terms with autism–or any other special needs–is a lifelong process. We never know what challenges we will need to face as our kids become older, teens, and eventually adults. It takes patience, a commitment to learning new techniques, a sense of humor, and lots of prayer.

(Amen to all of that!)

Me:  How did that journey help to bring about your recent book, (dis)Abilities and the Gospel, co-written with Lynn Parsons?

Danyelle:  During my son’s preschool years, my husband and I were the head of the school’s parent support group. Families often asked me to help them figure out how to help their child attend church or help their church leaders understand and love their child. As I researched on the Internet, I realized there were very few resources available about disabilities and church. Over the following four years, I spent quite a lot of time working with a variety of individuals, families, specialists, and church leaders to create the resources and information found in (dis)Abilities and the Gospel. Four years is a long time to work on just one project. But my son, my friends’ children, and people I met at conferences were a constant reminder of why the book was needed. It was truly an inspiring project to work on.

Me:  Tell us about the non-profit organization you and your husband founded in relation to autism and how my readers might contribute, if they so choose?

Danyelle:  Our son attended a private autism preschool called GIANT Steps. During our time there, my husband, myself and Karen Fairchild (one of the original founders of the school) created a Friends of GIANT Steps (501c3) to raise funds to supplement the school and its curriculum. We have put on sensory-friendly Christmas concerts, benefit concerts, held auctions, and a variety of other fundraisers. Thus far, we’ve been able to add a Kindermusik program (teacher training, equipment and materials) to help the kids with sensory issues and motor skills, bought playground equipment, sent teachers and paras to specialized trainings, and brought in speakers to help parents learn tips for raising their children and developing strong family relationships. Our goal is for the kids to have the best learning experience available and for families to have the resources they need. You can learn more about FOGS or donate through their website.

Me:  My son has Asperger’s and I know it was difficult, at first, for his older sister to deal with the social ramifications. How have your other children responded to your son’s autism?

Danyelle:  My son is our oldest child. So for a long time, our younger kids didn’t think anything about him being different. Even now, for the most part, they just think of him as Isaac and that’s the way he is. But as they have gotten older (3rd grade and above), they have asked more and more questions. We are very open about Isaac’s abilities and quirks. I’ve talked to the munchkins about how sensory issues or comprehension difficulties can frustrate Isaac and signs to look for so they know when to back off and let him decompress. One thing I want my kids to understand is that it’s okay to sometimes feel embarrassed or frustrated by things their brother says or does. It’s a natural human feeling, but I ask them that when they feel that way to remember he’s their brother and they are his best friends. So it’s okay to need a break, but they should always remember that they love him too.

My oldest daughter is especially empathetic to kids who are different from their peers (no matter if it’s a disability, language difference, etc.). She’s also in our school’s gifted program and pretty analytical–a trait she completely gets from her dad. last year for her big project, she chose to write a book about various disabilities, their causes, and spotlight examples of how people who have those disabilities made an impact on their community (whether through work, service, or challenges they overcame). I was impressed with how she took a personal challenge and turned it into a way to learn, grow, and find positive uplifting outcomes too.

(Sounds like her mother too, right?)

Me:  As I’ve noted before, I’m curious about authors’ writing spaces. How would you describe yours at present as if you were putting it into a novel?

Danyelle:

Danyelle scooted her wooden chair up to her desk, enjoying the warmth of the sunshine streaming through the bay windows. She sighed as she looked over at the pile of dishes that needed to be washed. Should she do them first? She calculated how many plates she needed for dinner that night before finally deciding she could safely ignore the ones in the sink. This was definitely one of the drawbacks of having her writing space in a nook off the kitchen. She quickly stacked her kids’ school papers into a pile and set them off to the side of her desk.

As she waited for the computer to boot up, she looked around at her little office space. She loved the trendy dark green walls with lime and white accents. Her favorite part was the white wall shelves filled with girly stuff – glass purses, Raine designer decorative shoes, and funky picture frames. She pulled out a sticky note and wrote a reminder to re-hang one of the shelves that came loose when the roof was repaired last fall. Maybe she’d actually get it done some time in the next year. She replaced her sticky note and pen back in the sparkly crystal crown that held her business cards, stamps and other office supply odds and ends that only writers loved and obsessed about. A variety of colored paper clips, cute binder clips, and multi-colored pens.

The computer chimed, signaling that it was ready for her to login and begin work. Danyelle nabbed a piece of chocolate out of her clear glass candy dish, popped the delicious treat into her mouth, then got ready to dive back into her current work-in-progress.

(And here’s the picture to show how well she described it!)

Me:  What are you working on at present?

Danyelle:  Right now, I’m working on one of the awesomest projects ever. The very first Storymakers Midwest Writers Conference! It’s Saturday, September 15th and in my backyard (well, almost)–Olathe, KS. Of course, that’s because I’m the one organizing it. We have an incredible line-up of authors coming to present. I’m honored to have Lisa Mangum (Deseret Book Editor & best-selling YA author), as well as Josi Kilpack (award-winning culinary mystery author) as our Keynote Speakers.

Along with the conference, we’re having a huge Authorpalooza. So if you’re in the Kansas City area, please stop by!

Friday, September 14th; 7-9 pm 

Authorpalooza Book Signing (Oak Park Mall Barnes & Noble, 11323 W. 95th Street, Overland Park, KS)

Authors include:  Lisa Mangum, Josi Kilpack, Heather Justesen, Don Carey, Karen Hoover, Traci Hunter Abramson, L.C. Lewis, STeve Westover, Danyelle Ferguson, Lynn Parsons, Tamara Hart Heiner, and more!

Me:  Finally, what are some of your favorite songs to sing while in the kitchen and how do your children react when you start belting them out?

Danyelle:  I have very eclectic musical tastes. I love everything from Natalie Cole to Bon Jovi to Katy Perry, with a healthy mix of my kids’ favorites–Justin Beiber, Hannah Montana, and Taylor Swift. I have a Kitchen Music playlist and sing along with whatever comes on. My favorite moment is when my big band music comes on and my hubby and I teach the kids our favorite swing dancing moves.

What do my kids think? They’re just as nutty as me. They dance around in the nook where my office desk is (also where the music is streaming from) and sing right along with me.

If you want to know more about Danyelle and her writing, take a moment to check out her website or her blog. Right now, she’s donating $5 from every sale of her disabilities book from her website to one of two worthy disability-related causes.

Originally posted 2012-09-05 06:00:35.

Jason is “Slightly Trendy”

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Present word count of WIP:  59,347

Okay, my Aspie son may not have a job…yet. And he doesn’t drive…yet. But, according to this terrific article from i09, one of my favorite futuristic websites, Jason is “slightly trendy.” It’s a fascinating read and so in line with my upcoming new novel (the title of which is yet again in limbo…the publishers decided against The Boy in the Pool, so stay tuned).

Meanwhile, Jason is reading on his own and attending Institute class and Mission Prep once a week (and we’re really grateful to the young men that give him rides home when they can). This weekend we’ll probably be shopping for a laptop for him to get used to using for his classes that start in September. He wants a Google Chrome book.

Anyone familiar with those? If so, please comment below, including both pros and cons.

Originally posted 2012-07-27 06:00:41.

“Thriller Thursdays” – Slow Suspense of That Tattooed Girl

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Present word count of WIP:  57,034

Stieg Larsson’s original version of the suspense novel, The Girl With the Dragon Tattoo, was to have been titled Men Who Hate Women (in Swedish, of course). And that may be all you need to know in order to look beyond the plot in this story for a theme.

While it has been praised all over the world and even won several awards, I have to say I was disappointed. After having just read The Silence of the Lambs, so tightly written with the type of spare and sometimes poetic prose I love, Larrson’s book felt dense and cumbersome. And I was confused about the quoted statistics regarding violence against women which began each new section…until I discovered his original title. This is definitely a book that is not nice to women, but fortunately an unlikely heroine arises to defend her gender.

Of course, this novel was edited and translated after Larsson died, so who knows how closely it hues to his original vision. It would have been interesting to see how the book might have fared had it been published before the author’s death.

For me, the main problem was that he had a terrific family saga mystery wrapped in the distant world of Swedish high finance. And that’s an Achilles heel for me. Anytime I start reading or hearing about economics, business, and numbers, my eyes glaze over and my brain tends to want to shut off. I would have enjoyed the book a lot more had he minimized the corporate world stuff and amped up the personal family story. (By “amping” I mean increasing the pacing.)

The opening Prologue was terrific because it honed in on the central mystery, intriguing the reader without giving away much. But then the story veered off into the corporate stuff in order to introduce the finance reporter who ends up tasked with solving the family mystery. My interest didn’t pick up again until about 30 pages in when the tattooed girl, Lisbeth Salander, is finally introduced.

Any time she was in a scene I was hooked. Any time she wasn’t, I found myself missing her. She’s that strong of a character. (I wasn’t surprised to learn later in the book that she’s likely on the autism spectrum.) The reporter was really quite bland in comparison and yet he appears to be the protagonist, since he takes up most of the book. Once they’re teamed to solve the mystery of the missing/dead girl (which only happens about two thirds of the way through the book), the pace finally begins to pick up.

Then, after the mystery’s solved, Larsson brings back the corporate stuff so the reporter can get his revenge on the corrupt financier who had sued him in the first place…but it takes away from the power that was in essence returned to women in the conclusion of the mystery.

In sum, I don’t understand why this was the huge hit that it was. The novel was too drawn-out and disjointed for my taste, not to mention it had some offensive scenes I skipped over. I’m giving it three stars.

Still, there were some quotes I liked:

“Normally seven minutes of another person’s company was enough to give her a headache so she set things up to live as a recluse. She was perfectly content as long as people left her in peace. Unfortunately society was not very smart or understanding.”

“Everyone has secrets. It’s just a matter of finding out what they are.”

“Friendship – my definition – is built on two things. Respect and trust. Both elements have to be there. And it has to be mutual. You can have respect for someone, but if you don’t have trust, the friendship will crumble.”

If you’ve read The Girl With the Dragon Tattoo, I’d love to hear what you thought. Did it hold your interest the whole way? Who was the real protagonist?

Next on my list: James Patterson’s Kiss the Girls . . . I’m expecting a fast read, so I’ll be reviewing it next Thursday.

 

Originally posted 2012-07-19 11:34:58.

From Food Issues to Communication (or the lack thereof)

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Present word count of WIP:  50,792 (yes, I refined a bit)

Before I continue my description of our own Asperger’s journey, I want to make three things clear:

1) No two individuals with an Autistic Spectrum Disorder (including Asperger’s) are alike. Some will have food issues, others won’t. Some may be strong in language, others in match and science, etc. These postings, then, are about our particular journey. There are plenty of other stories online. (I know this because I sought them out over a decade ago when I was hungry to know more, and I’m certain there are many more today than there were then.) If you want to understand the disorder better in all its permutations, check out the website for Autism Speaks, or if you’re particularly interested in Asperger’s, then I recommend the Online Asperger Information and Support Center. Also, I don’t pretend that Autism is the only developmental disability in the world. A fellow writer and friend of mine, Margaret Turley, included a special mention of Autism at the end of March as a part of National Developmental Disabilities Month. You might want to check out all her postings last month.

2) Jason has given me permission to share his story in this way. He comprehends that there is a need to help increase understanding about Autism in all its forms, as well as to seek its cause(s). We are doing this for the same reason we decided to take part in IAN, the Interactive Autism Network set up to link researchers with families impacted by ASD. We want to provide support, answers, and a sense of community for individuals who, for too long, have felt like outsiders in this “neurotypical” world.

3) Jason’s story will continue both here and on the website of Madison House Autism Foundation, a non-profit group formed by friends of mine in Maryland to assist those with autism (and their families) as they navigate the rest of their lives once they reach adulthood. Much has been written and produced to help children with autism, but what about when they grow up? Or what about those who don’t discover why they have felt so “different” all these years until they are older? With so many diagnosed on the autistic spectrum, we are facing a future filled with such individuals as my son. As Jason graduates from high school next month and begins to make his way into the adult world, I’ll try to share the challenges, setbacks, and triumphs every second and fourth Friday of the month.

Jason, aged 2 and 1/2, with Ariel toy

Now…on with our journey.

Early on, there were other signals that alerted me to the fact that Jason wasn’t a typical kid. Because our daughter had been a late walker, I wasn’t so concerned about his delay in gross motor skills. By the age of 2, however, he still hadn’t seemed to clue in to the process of communication.

Allison was an early talker, but Jason said very little. In fact, I began to wonder if he had a hearing problem because, often, when I’d call out to him, he wouldn’t even turn around, let alone respond. But the pediatrician checked his hearing and found it to be perfectly normal.

It wasn’t that he couldn’t speak or say words. He was very adept at repeating any word I told him. His vocabulary was adequate; he just didn’t seem to know what to do with all those words. I’d ask him a question like, “Do you want some water?” Instead of nodding or shaking his head, or saying “Yes” or “No,” he’d simply repeat my question or at least the last part of it. (I came to find out later that this behavior is called “echolalia,” a condition that often presents itself in autism and other developmental disabilities.)

By this time, my daughter was enrolled in Kindergarten and I was aware that her local elementary school had a speech therapist. I figured he needed speech therapy, so I called up the school. While the therapist would have been happy to meet with me, she fortunately pointed me to a much better resource: the school district’s Sunshine Early Childhood Center. I made an appointment there to have Jason tested and took him down on the appointed day–a Friday.

They tested him for everything: physical abilities, speech abilities, drawing abilities, social abilities, etc. As I recall, it took a good hour and a half, if not two hours. Then, at the end, they told me:

“Mrs. Mills, Jason definitely qualifies for our program. He’s communicatively handicapped. He’s delayed in fine and gross motor skills. And he’s orally and tactilely defensive.”

(I knew he was very careful about what he’d allow me to put in his mouth, but I wondered about the tactile part until I recalled the way I’d had to cut labels out of his tee shirts and pants…and how much he hated the feeling of rain on his head, or getting his clothes wet…and the way he howled whenever I had his hair cut.)

They didn’t call it autism then because he seemed so high-functioning in some ways (he really knew his letters and numbers), and this was in 1996, less than two years after Asperger’s became an official diagnosis.

Still, I was happy to have any kind of conclusion, so I said, “Fine. What do I do next?”

Keep in mind that I was only now getting used to having my daughter gone every morning for kindergarten. She had done a couple of years of pre-school before that but they had met only three mornings a week. I figured this Sunshine School was going to be like a pre-school. Boy, was I wrong!

The school principal told me to bring him to the school at 8 am on Monday, then pick him up at 3 pm. Thereafter, she told me, a bus would pick him up from our house in the morning and deliver him back in the afternoon.

I looked down at my darling little two-and-a-half-year-old boy and gulped. “Are we talking two or three days a week?”

“Every day,” she said. I remember that my mouth dropped open.

“Five days a week? He’s going to be in school longer than his older sister, and she’s three years older than him!”

They assured me that he needed it and that he would get used to it.

“But he’s not even toilet trained,” I argued. (M&Ms had worked wonders with his sister, but there wasn’t any special food I could use to bribe Jason.)

“Oh, we’ll take care of that. We’ve got special training potties in every classroom.”

Still stunned, I followed the principal and speech therapist as they walked us around the school to show me all the facilities. Not only would Jason be in a regular classroom with other disabled children, but he would receive regular speech therapy and occupational therapy. Talk about early intervention! Of course, at the time I didn’t appreciate the life-changing gift they were providing because I still knew next to nothing about autism.

All I knew that day was that, come Monday, I was going to be a very lonely mother all morning and a very worried mother all day. And I couldn’t help wondering if this, like the carrots, would lessen his trust in me.

Would he still love me Monday afternoon?

On Friday, I’ll post about Jason’s “Sunshine” experience.

Originally posted 2012-04-09 10:56:20.

From “Normal and Healthy” to “Food Issues”

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Present word count of WIP:  50,811

Jason at 4 months

I was already 38 by the time I was pregnant with our second child, Jason. We were living in Riverside, California, and our daughter, Allison (then 3) was thriving. She’d been born two weeks overdue and turned out to be a late walker and early talker. I suppose I expected some of the same after Jason was born.

He was pronounced “normal” and “healthy” at birth, weighing in at 6 lb. 14 oz. He was a really good, quiet baby, and nursed often. At six months, when I started introducing him to cereal and other baby foods, he didn’t show much interest, still preferring the breast. He quickly refused many of the baby foods I tried to give him, never even trying any of the meats. The only fruits and vegetables I could get him to eat for a while were bananas, applesauce, pears, butternut squash, and carrots. Soon, he started refusing the carrots. One day I tricked him into a bite of carrots and he gagged it up. After that, he wouldn’t eat any baby food.

I supposed I had lost his trust. In the meantime, my breast milk was drying up, so I finally weaned him at 18 months. After that, he refused to drink anything but water (which is the only thing he’ll drink to this day). As a toddler, the only things he would eat were plain white bread (without the crust) and Honey Nut Cheerios, but once he tasted plain Cheerios, he wouldn’t go back to the other kind. This became a pattern for him. Once he got used to anything new,  the old routine would be left behind.

Obviously, I was concerned about his diet. His pediatrician said I should force the matter. He said no child would willingly starve himself to death, so I tried to force other foods on two separate occasions. Both times, he refused, got sick (flu, fever, etc.) and I just didn’t have the heart to go back to starving him after he got better. I did manage to add a calcium supplement that had been recommended by the doctor, but it took a great deal of coaxing and even threatening to take away one of his favorite toys to get him to swallow a teaspoon of anything that didn’t look like water. It was that way with all medicines (and still is, to some extent), though he did get to start liking the sweet-tasting supplement.

We finally just gave in to his strange eating habits. He progressed (if you can call it that) from Cheerios and bread to white toast with butter, then Ritz Bits with Peanut Butter, then Ritz Bits with Cheese, then Grilled Cheese sandwiches, then French Toast, then marshmallow pieces in Lucky Charms (that was an accident), then a certain brand of Cinnamon-flavored Alphabet Cookies, then Eggo Pancakes, then Lays Baked Potato Chips, Vanilla Ice Cream, and Bananas (Yay!). He would never eat more than 2-3 of these items during any particular phase of his development.

The pediatrician thought we were “pushover parents.” I know because later, when I obtained a copy of Jason’s medical records for his first IEP, I was able to read all the doctor’s notations from my son’s visits and examinations. But that was before we–or the pediatrician–knew what Asperger’s syndrome (AS) was. AS only became an official diagnosis the year after Jason was born, so by the time we were dealing with his food issues, it was still very unknown, even within the medical community. Sure, the doctors knew about autism, but this was a very high-functioning autistic spectrum disorder, and you would never have thought Jason to be autistic at first, or even second glance.

We soon found out, however, that we were dealing with far more than a “picky eater.”

On Monday, I’ll share the other first clue to his “differentness.”

Originally posted 2012-04-06 14:06:14.

Autism: 1 in 88…My Son: 1 in 1,000,000

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Present word count of WIP:  49,832

1 in 88. That’s a much higher percentage than it was back in 1996, when I first suspected something was off about my son…or even in 2000 when he was a first grader and I got the official diagnosis. And in some places, like Utah, the rate is even higher (1 in 47).

Whether it’s an epidemic or not, it’s certainly a direct concern to over a million families here in the U.S. and many more around the world. Then multiply that million by at least ten for all the families indirectly concerned (relatives, teachers, health care professionals, scientists, taxpayers) and you might begin to understand why autism is a topic that won’t go away. There is a very good reason we devote an entire month – April – to  Autism Awareness.

But I don’t intend to cite figures and percentages here. I’m all about stories. So, for my postings during this month, I thought I’d share my son’s story. After all, he is the reason I wrote my second novel – the one that will be published later this year.  I’m not sure yet of the title. That may be determined today when I meet with Linda to sign the publishing contract. But whatever it’s called, it will be, at its core, Jason’s story. There are bits and pieces of him throughout, either in detail or symbolism.

I’m traveling right now, so my earliest recordings of our Asperger’s journey with him are inaccessible. However, let me share a glimpse of the kind of challenge we still face now that he is 18.

While no two children with an Autistic Spectrum Disorder (ASD) are alike, traveling with them is ALWAYS hard. Why? Because travel is all about change: changing location, changing the daily routine, changing the people you’re around, changing the places you eat and sleep, etc. And any change is most difficult for these individuals. They tend to want to cling to the familiar…even more so than the rest of us do.

We came down to Utah to attend our church’s General Conference, see our daughter, and sign my contract. Jason was reluctant, particularly since he was still getting over a chest cold, but he agreed since this might be our last opportunity to attend conference as a family for at least a few years. Besides, he had a particular question he was hoping to have answered during conference.

So, we packed up the grill, his preferred plate, fork, glass, and everything else I’d need to make his special grilled cheese sandwiches. He brought his pillow (to be honest, I wish I’d brought mine, as well) and three of his favorite books, his iPod Touch, etc. And once we got here and settled into our hotel, we tried to restore as much of his routine as possible.

He went to the Priesthood Session with his father, coughing through much of it. Later that night, my husband and I worried over how he might react should his particular question not be answered over the pulpit by one of the leaders or General Authorities. After all, he had been promised by church leaders that if you prayed faithfully to receive a particular answer during conference, you would get it. And those with Asperger’s take such things very literally. But by then, we knew what his question was and it was so particular that we both shook our heads in doubt. You see, the likelihood of his prayer being answered in that way wasn’t anything like 1 in 88. It was more like 1 in 1,000,000. Still, we’ve all known miracles to happen.

I’m sure, by now, you’re dying to know his question. Like others with Asperger’s (a high functioning type of ASD), Jason has his obsessive interests. For him, it’s media – particularly movies and books. He loves all things Disney and he loves the Harry Potter series (both movies and books). So, when he finally shared his question, we learned it was this:

Once and for all, are Disney and Harry Potter looked upon with approval by the Church?

I remember the way he perked up when President Uchtdorf began his talk Sunday morning by saying he’d felt moved to respond to the concerns of a mother about her two children. Surely, he must have thought, this will be my answer. Then, as the talk proceeded to focus on the dangers of contention and holding onto grievances, my son sagged back in his chair. Still no answer.

After the Sunday morning session, we had a talk about conference talks. We explained that while  some may provide very specific answers, they usually deal with general principles of the gospel. I told him that his best answer probably came Saturday morning when the prophet, himself, reiterated that we should seek for those things “that are virtuous, lovely, or of good report, or praiseworthy.” We told him that, guided by the Holy Ghost, he needed to determine for himself whether Disney movies and the Harry Potter series was of good report, praiseworthy, and uplifting.

Apparently, he made that decision. As we sat in the Conference Center waiting for the afternoon session to start, he pulled out my Kindle and began reading “Harry Potter and the Sorcerer’s Stone.”

Talk about juxtaposing the sacred and the secular. Nevertheless, it calmed him and he hardly coughed at all during the whole session.

On Friday, I’ll post about how this Asperger’s journey began.

 

Originally posted 2012-04-02 06:00:56.

Consider Organizations, Not Just Individuals

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Present word count of WIP:  47,161

Okay, I slowed down on my output the last two days. First, I was bummed yesterday at receiving another rejection. It was so nicely worded, however, and included enough good feedback that I almost felt guilty about feeling depressed. (At least, I know the agent judges me to be talented and would definitely consider future proposals.) Then today, things really began to look up and I simply couldn’t concentrate on writing all morning. I may have an important announcement to make next week, so stay tuned!

For now, Seth Godin’s next bit of Advice for Authors:

16. Most books that sell by the truckload sell by the caseload. In other words, sell to organizations that buy on behalf of their members/employees.

This got me thinking about another way to market my second novel, LAPS, once it gets published. Since a couple of key characters in the novel have Asperger’s syndrome, I could contact local chapters of Autistic Support groups and donate cases of books or, at least, provide them at deep discounts simply to help spread word of the book.

Autism Society of America

Since my son has AS, we have been participating in a study put on by the University of Washington. In fact, we recently gave them permission to share all our data with the National Instititute for Health. They might also appreciate copies of the novel. It’s something to keep in mind, for certain.

Asperger's Under the Umbrella of Autism Spectrum Disorders

How about you? Can you think of organizations that might have a natural tie-in to your most recent or upcoming book?

Originally posted 2012-03-09 16:45:10.

“Wednesday Writer” – Tracy Winegar

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As I wrote last week, Tracy Winegar and I share a couple of things in common: we both have sons with an autistic spectrum disorder, and we both wrote novels about it, though she set hers, KEEPING KELLER, in an earlier time period long before doctors really knew what to do about it.

Tracy WinegarME:  What was it like growing up in Indiana, and who were your earliest and/or strongest literary influences? Also, how would you compare the Western and Midwestern mindsets, and where do you come down between the two?

TRACY:  Growing up in Indiana was not a bad way to spend my youth. I had a fairly carefree childhood. I was the third of eight children. My mom was a stay at home mom. She was very fun and had a great sense of humor. My dad provided for our family. I had nothing but sisters until I was about five years old, when my brother was born and then two more sisters before my last sibling, another brother, was born. I grew up in cornfields and with a small town mindset. There were very few LDS people in our area, so I knew from an early age that I was very different, at times excluded because of it. Hard work was important and I began working part time when I was fourteen.

OLYMPUS DIGITAL CAMERA(Tracy as a teenager)

I spent summer vacations on my grandparents’ farm in Tennessee. When I think of my favorite places, that is one of them. It was quiet, and beautiful, and simple. Very few distractions gave me and my brothers and sisters the opportunity to use our imaginations and spend time in the great outdoors. My grandmother was a great storyteller and we loved to sit with her and hear her stories of when she was growing up and how she met Grandpa and fell in love.

I enjoyed a lot of different activities, but I loved drama and I loved writing. Each year they had a competition called the Young Authors Competition. I entered every year and always placed. (So, the talent showed itself early!) The prize for winning was that you were able to attend a lecture with a real life author. That was when I got to hear some of the great authors of my youth speak, one of which was Judy Blume.

Judy Blume(Judy Blume)

When I was young I loved to read Pippi Longstockings, Island of the Blue Dolphins, Little Women, Calico Captive, and The Witch of Blackbird Pond.

As I got a little older, one of my biggest influences was a teacher I had my sixth grade year. Mrs. Meier-Fisher. She had us read some really beautiful literature and she gave us some great writing assignments. I was on cloud nine when she read one of my pieces to the class as an example. (I’ll bet!) She had us read some of the great Hoosier writers and I fell in love with Gene Stratton Porter.

Gene Stratton Porter(Indiana poet and novelist Gene Stratton Porter)

One of my Grandma Beaty’s favorite books was her novel, A Girl of the Limberlost, and when I read it I was in love with it too. I also really loved James Whitcomb Riley, another Indiana author who had become a great poet. In seventh grade I read Gone With the Wind and loved it as well. I discovered that anything historical was right up my alley, fiction or non-fiction alike.

James Whitcomb Riley(James Whitcomb Riley)

I am still very much a Midwesterner, although I have lived in Utah for the past twelve years. I like things simple and uncomplicated. I love being home with my family as much as possible, and I miss the green landscape and beautiful stretches of empty land. I would love an acreage, but land here is very expensive and every space is taken up with houses. Gone are the cornfields and soy bean fields that stretched for miles.

ME:  When did you first know you wanted to be a writer, and what brought about that realization?

TRACY:  When I was a kid, I loved paper. Before I could even write I spent a great deal of time “writing” cursive loops, although none of it was actually words. In third grade I wrote a tall tales story for a school wide competition and was hooked when I was one of the winners.

I did a lot of creative writing in high school, but then I got married and had children and didn’t have a lot of time for writing. When I turned thirty, I told my husband that it was a dream of mine to write a novel and so I began and I kept at it and somehow managed to finish the thing. That was my first novel KEEPING KELLER.

Keeping Keller 1

ME:  Why did you move to Utah at 19? And if it involved college, how did your college studies impact the kinds of things you write today?

TRACY:  I moved to Utah because I wanted an adventure. I moved to Utah because I wanted to see what it was like to be surrounded by people who were like me and not be the odd man out for once. (I know exactly what you mean. That’s why I went to Utah after high school in Beirut.) It was fun to be able to go to parties and to have social events where I knew I would be welcome. I enjoyed dating and being independent. I missed my family very much, but also was happy to be experiencing new experiences.

ME:  What type of writer do you aspire to be, and which writers have influenced you the most?

TRACY:  My goal is to try and make people feel something when they read my writing. To invoke a reaction, to get people to relate on some level to the story or the characters would make me a happy character.

I love classic literature and I enjoy historical fiction. It’s hard to say who has influenced me the most, because I have read so many quality books by so many awesome writers. My favorites are the books that leave me feeling haunted… I just can’t forget the characters or the storyline. As I stated before, I love A Girl of the Limberlost, but I also loved Gone With the Wind and A Tale of Two Cities. More recent books that I enjoyed were The Forgotten Garden and The Secret Keeper by Kate Morton.

Kate Morton(Australian author Kate Morton)

While many great authors have inspired my work, I also attribute my writing style to the themes I know best. Motherhood, marriage, and my relationships with friends and my family (thanks Mom and Dad) are themes that are always reoccurring in my writing, because that is what I know best.

(And it shows.)

ME:  Strangely enough, I’d forgotten we were both Whitney Finalists in 2008 in the General Fiction category for our first novels, KEEPING KELLER (yours) and THE RECKONING (mine). (That’s why your title sounded so familiar to me.) As an awards program, what do the Whitneys mean to the LDS writing community in general and to you, personally?

Whitney Awards

TRACY:  I think it’s great that there is a forum for LDS writers. I thought it was a wonderful honor and was very excited to be involved when I was a finalist. It is difficult to be seen or stand out in a field where anyone can publish and the market is saturated with books, both good and bad. This gave me the opportunity to be seen, which is any author’s dream.

(Amen!)

ME:  We’ve both written novels based on our personal experiences with an autistic son. Please tell us a bit about KEEPING KELLER and how much of your son comes through in the book. Also, I’d love to hear the story of your son’s diagnosis and your reaction to it (and post a picture of you with him, if possible).

TRACY:  The character in KEEPING KELLER is nothing but my son. Many of the experiences I wrote about in the book were based upon things that had happened to me. It was very personal. I love the story, but do feel it could have been better with more editing. However, that was a very honest look into the life of a mother dealing with autism, as well as the difficulties she would have encountered during that time period (the 1950s).

I had it much easier than Beverly, because I was able to get help and learn how to work with my son. When he was young, our family life was very complicated and difficult. Thankfully he has gotten a little better and a little better, until we are now in our own comfortable normal. He throws us some curve balls every now and again, but I don’t feel as though I might have a nervous breakdown a majority of the time any more.

OLYMPUS DIGITAL CAMERA(Tracy with her son, Luke)

My son was my second child. I first had a girl who was very smart and very vocal. He began to develop normally until about eighteen months old. We noticed that the few words he had acquired seemed to be lost. He had odd behaviors that we couldn’t quite figure out. A lot of people told me that it was because he was a boy and that boys were very different than girls. I knew instinctively that something was not right. I persisted in trying to get him help until he was diagnosed with Autism when he was two years old. At the time, I was a month away from having my third child, another son.

(I imagine that made you extra nervous.)

One of the reasons we moved back to Utah from Iowa was in order to get my son into the Northern Utah Autism Program. There were many difficult and sad years. It is hard to come to terms with the fact that your child will never be normal. We love him, but Autism is such a devastating thing to live with. We have had many bad experiences, we have been judged and treated badly, but we have also had a lot of compassion and some true friends to come of it.

(That’s a blessing, indeed. It sounds like your son’s on the more severe end of the spectrum. You and your husband must be twice as strong and even more patient.)

Sometimes I see boys his age and think “He would be doing this” or “He could have done that” and I feel sad. But then there are times when I see boys his age and things they are doing and I am very grateful that he is innocent. I will never have a missionary, a football star, see him graduate, or go to college, or get married. But I will always have Santa Claus and the Easter Bunny and that will always fill my life with the magic of childhood.

(How true!)

ME:  Your second novel, GOOD GROUND, came out last year. What led you to write this story and what are its main themes?

Good GroundTRACY:  I wrote GOOD GROUND based on my love of my grandparents’ farm. I loved the setting and the time period, which was when my grandparents courted and fell in love. I had a deep commitment to telling the story of a man who was what he was because of his rearing.

I like to think that we have the power and ability to change the destiny of children who seem to have no future. I work with children on a daily basis, mine and many others. I see such great potential, but I also, at times, have seen children whose potential has been robbed of them by the adults in their lives and the examples they have set. There are more than a few that I have daydreamed about rescuing, taking into my home and raising as my own.

I also liked the idea that nothing is coincidence, things happen for a reason. The whole analogy of farming tied in so perfectly with the themes of work, family, and investing in something that will produce results. I think the thing I am most proud of is the change that you see in the characters from the beginning to the end, especially Clairey. Interestingly enough, she is someone that many women have related to, which makes me very happy. I love the fact that the love story is very real, based on mutual respect, an established relationship, hard work, and sacrifice.

(Sounds good. I’m going to have to check it out!)

ME:  Are you an organic type of writer when it comes to the process, or do you prefer outlining, and why or why not?

TRACY:  Very, very organic! I always have an end in mind, but I rarely outline. I am far too unorganized and my life is way too unpredictable for me to keep up with planning it all out. I’m not sure if that is beneficial or harmful. I could probably get a lot more done if I were able to outline, but then too, I am open to different impressions and ideas as they come to me and have the ability to be somewhat creative because of my oddball style.

(Yet one more thing we have in common…)

ME:  When do you do your best writing and what are you working on now?

TRACY:  I am definitely best writing in the evening, but I try and write whenever I have a free moment.

Right now I am trying desperately to finish a trilogy set during the Civil War. I have successfully finished the first two novels and am about 2/3 the way through the last. But the last one is KILLING me! Hopefully I will be able to complete it this summer. (Fingers crossed.)

ME:  Finally, I’m of the belief that a writer’s space is crucial. When you consider the area that you use to write, what five things stand out about it that makes it uniquely yours. (And I must have a picture.)

TRACY:  I wish I could say I have a space of my own. I do not. I write where there is quiet. Sometimes that is my dining room table, sometimes my bedroom, sometimes outside on my porch, or sometimes my lunch break at work.

I dream of an office with large open windows in a restored older home. Someday I may actually have that space. Right now I make do with what is available to me.

(Everyone…order Tracy’s books and spread the word so she can afford her own writing space!)

WritingSpace(Her temporary space at the dining room table)

Tracy has a website and a blog, where you can learn much more about her and her writing (and she’s posted lots of pictures on her blog). Her books are available on Amazon.

I only have two more weeks to go in my Wednesday Writer series because after July 2nd I’m putting it on hiatus in order to complete some exciting projects during the rest of the year. So be sure and check back next week to read my interview with Theresa Sneed, who’s recently released Book 1 of a new YA fantasy series.

Theresa04022014-285x300

Originally posted 2014-06-11 01:00:59.