An Unexpected Curve Ball in First Grade

Present word count of WIP:  51,899

Yes, I put the blog post ahead of my writing today. In fact, this may have to count as my writing today.

Jason in First Grade with his new glasses

I thought First Grade would be much like Kindergarten for Jason, despite his new glasses.

It wasn’t.

Even though he had a kind and attentive teacher and was classmates with many of the same kids he’d come to know in Kindergarten…and even though he was doing well academically, he was suddenly unhappy about going to school. He didn’t like doing homework (especially math), and he hated recess. First real warning sign.

He didn’t want to talk about his aversion to recess, so it was particularly hard, given his Aspergers, to get the details out of him. I even went on a few reconnaissance missions of my own to gain clues. (I felt kind of silly spying on my own child, but a Mom’s got to do what a Mom’s got to do.) Eventually, I got the full picture:

Almost every day, one kid or another (usually a second or third-grader…that’s the problem with graduating to first grade: you’re no longer in a playground all your own) was hassling him. Generally, it was something seemingly innocuous like chasing him or trying to scare him–normal behavior for kids that age, perhaps, but then Jason didn’t perceive things normally. He certainly didn’t like it. I found out that he’d been pushed down and held down a couple of times. Without a friend to stick up for him, school had suddenly become very lonely and even dangerous.

Jason in one of his costumes for "Alice in Wonderland"

The only fun outlet for him now was the Riverside Children’s Theater. We had signed both him and his sister up during his Kindergarten year and he thrived, both in their Saturday classes and in rehearsals and performances. (Why is it that actors are always so tolerant of unique qualities and characteristics?) In fact, he won the Best Actor award for his age group and even got a speaking part (one line) in their production of  “Cinderella.” The director thought he was so cute that he made up a line for him. For the following production, “Alice in Wonderland,” he got two roles. But the boys in RCT were nothing like the boys at school.

At school, he wanted to have friends, but all the boys he’d known in Kindergarten had moved on to sports like basketball, soccer, and baseball. Jason playing sports? Believe me, I tried. I signed him up for T-ball. He hated it. We got him a miniature Fisher-Price indoor basketball hoop. For the first week or so, he threw the ball into it, but gradually he started throwing one of his Power Puff dolls into the hoop instead. Then he simply left the hoop alone and played with the dolls.

Jason showing off Blossom, one of the Power Puff Girls

He was obsessed with the Power Puff Girls. That drew a couple of girls to him as friends, but the boys mostly thought he was “different.” They either teased him, or avoided him altogether.

Each day I’d send him off to school, hoping at least one boy would reach out to him and be kind. Each day, he’d return despondent. I was aching to help him, but felt powerless.

First of all, I didn’t know, myself, what I was dealing with. There was such a stigma a decade ago about boys playing with dolls and I’m afraid I gave into it. I tried to draw him away from his sister’s toys and instead interest him in anything more “masculine.” He just wasn’t interested in cars, trucks, soldiers, toy guns, etc.

Finally, I went on the Internet, typed “boys who play with dolls” in the search engine, and began to read. I must have spent a day and a half on my computer looking for any kind of clue to the puzzle that my son now appeared to be. First, I thought I’d found my answer when I landed on a page detailing some kind of disorder, having to do with the senses. (I believe they’ve either discounted that disorder now or folded it into another because I can no longer find it.) The description fit Jason, but not quite. Fortunately, the page included links to related disorders and one of those was Asperger’s.

I still remember how I felt when I clicked on the Asperger’s page and began to read about my son. As I read about the obsessions, the difficulties with sensory overload, the problems with communication and motor skills, and, most of all, the challenges in socializing, I kept thinking, “This is it! This is my son!”

I printed off the page and showed it to my husband that night after dinner. He wasn’t nearly as convinced as I was (but, then, it’s not uncommon for at least one of the parents to  fight the admission that there might actually be a scientific reason behind their child’s “different” behavior). Still, I called Jason’s teacher the next day and asked if I could meet with her after school. She agreed.

Once all the other kids had left the room the following afternoon, Ms. Rios and I got Jason involved in some games in the corner of her room and we sat down to talk. I was determined, first of all, to get her read on my son outside of any context involving Asperger’s syndrome or autism. So, I hadn’t given her any heads up other than to say I had some concerns about Jason.

I began by asking how he was getting along with the other kids in the class. She said that he didn’t seem to be having any problems, but that he did tend to stay to himself. I asked if she ever observed him playing games with any of the other children. She paused to think and then admitted that he preferred playing alongside them rather than getting involved in their games. I think I also asked about any peculiarities she might or might not have observed about my son. She noted a couple (relating to his sense of unease outside and being bothered by certain noises). Then I decided it was time to show her the printout. I handed it to her, saying, “Would you mind reading this and telling me what you think?”

I waited while she read, watching her eyebrows rise and her head nod more than a few times. When she finished, she looked up and said, “Wow. I’ve never heard of this before, but I think it sounds exactly like Jason. I think we should set up an appointment with the District’s School Psychologist.”

In that moment, I was both relieved and anxious. Relieved that at least one other person saw Jason the way I did, but anxious about the upcoming appointment and what it might confirm.

I won’t beat around the bush. We met with the psychologist. Fortunately, she was familiar with Asperger’s and she said that, in her opinion, Jason definitely exhibited signs of AS. She also was on our side, meaning that, since the district really only recognized autism and wasn’t yet aware of AS, she would be willing to mark him down as autistic so that Jason could get the services he needed.

Even with her diagnosis, I wasn’t through. Perhaps more to convince my husband than myself, I sought a second opinion from an experienced neuropsychologist, one who had worked with an autism center in San Diego. She confirmed the diagnosis.

I threw myself headlong into researching anything and everything printed or published online about Asperger’s syndrome. Even with a diagnosis from two different professionals, my husband still wasn’t persuaded. He’d say things like, “Everybody has quirks in their personality.” Nevertheless, I stayed up many a late night, reading blogs like this in which mothers or fathers shared their journey to seek the answers to the puzzles their children presented. (I have a full shelf of books today, not to mention videos, most of which I collected in that first year after the diagnosis.)

Later that week, when we took Allison to sign up for Girls Softball, we passed by the playing fields where Little League was starting up. I looked out at those boys running around, tossing the ball to each other, and taking their turns at bat. Then I looked down at my son, whose hand I was holding tightly so that he wouldn’t take off in a panic from the occasional bee flying by.

I won’t lie. Tears came to my eyes in that moment, for I knew then that at least some of the dreams I’d had for my son would never materialize. A curve ball had struck out the son I’d thought I had. It was time to begin learning about the son I really had and building some new dreams.

On Friday, we’ll all be down in Utah celebrating Allison’s graduation from BYU, so I thought it would be a good time to post sometime that day about how all of these developments were affecting Jason’s sister. Siblings of those on the autistic spectrum have challenges of their own, and I’m so proud of the way Allison dealt with his Asperger’s.

Originally posted 2012-04-17 13:28:52.

Peek Ahead at Jason’s Sixth Grade Science Camp

Present word count of WIP:  51,899

I know. I promised a posting recounting Jason’s pivotal first grade year. Unfortunately, I had to spend all afternoon on something else, and then some other things came up after that, not to mention the fact that my computer kept shutting down. It’s 10:23 pm and my poor husband was begging for lights out (the only drawback to having my office in an alcove in our bedroom), so now I’m out here on my iPad.

I will post about the next part of our journey tomorrow, but in the meantime, let me recommend the blog of a fellow writer, Danyelle Fergusen. She, too, has a child on the autistic spectrum and has been hosting guest bloggers all month in honor of Autism Awareness Month. It so happens that today she posted my essay on Jason’s Sixth Grade Science Camp experience. Due to computer problems on her end, she wasn’t able to include the picture I sent along, but I’ll post a couple of pics here tomorrow to go along with the essay (once I can get back on my computer).

Jason making his way up the rock face

Jason gets some coaching

Jason and I at Pathfinder Ranch

Tomorrow: First Grade!

Originally posted 2012-04-16 22:36:25.

From Communicatively Handicapped to…Genius?

Present word count of WIP:  51,026

I felt like the most heartless mother in the world that next Monday when I took him to the Sunshine School and then left, his crying following me all the way out to the parking lot. As you might imagine, guilt plagued me all day long, and when Allison and I went to pick him up again in the afternoon and I felt the way he clung to me, I was almost of a mind to forget the whole thing.

Fortunately for him, I didn’t. I tamped down the guilt the next morning and swallowed hard as I helped him on to the small school bus and then waited a second, long day…and a third…and so on. Eventually, he began boarding the bus himself.

Jason boarding the bus for Sunshine

Though it took a while for Jason to feel at home at Sunshine, by his second year there I couldn’t deny that he was thriving in ways he never would have at home alone with me. The staff there was tremendous and they fell in love with the little guy. So did many of his fellow students, whether they were blind, crippled, had Down Syndrome, or were otherwise disabled. In fact, that was one of the best things about the school. It broke down barriers between the so-called “different.”

Jason's the green M&M for Sunshine Halloween party

His teachers were able to help me finally potty train him by age 4 and speech therapy helped a lot. In fact, he was beginning to speak better than most children his age. Our health coverage paid for some occupational therapy sessions, but he didn’t make as many strides there in terms of gross motor skill development. In fact, he fought it. The one great thing we got out of it were the two big therapy balls, which he and Allison then began to play with around the house.

Jason sitting on his therapy ball while watching a favorite video

Every day after he’d get home from school and eat, he’d bounce all over on the smaller of the two balls as his way of decompressing or “stimming.” (Today, he draws cartoons, instead.) As for his oral and tactile defensiveness, the most progress he made was the day they said they got him to drink half of a little carton of chocolate milk…and the one time they got him to try finger painting (he hated it).

In the meantime, I was trying to teach Allison to read. To help her with letters and sounds, I bought a Muppets software program and tried to get her interested in playing the games it included on our computer. She didn’t feel comfortable around the computer, however. But Jason did. As soon as she’d climb down off the chair, Jason would take her place. He was fascinated by all these visual cues and he loved playing those Muppets games. Gradually, I became aware that he had taught himself to read. In fact, he was doing so well academically at Sunshine that they finally had to “exit” him from the school early because he no longer qualified as “communicatively handicapped.”

I put him in a regular pre-school for the remaining 4-5 months, which of course only met three days a week from 9 am to noon. He did fine there, but he really missed Sunshine and he didn’t make any new friends.

By the fall of 1999, he was reading at an advanced level. This was confirmed by Ms. Bouton, his assigned Kindergarten teacher, when she met him before the start of the school year. She met with all her kids before the first day of school to test their reading and math levels, and when she brought Jason out after testing him, she asked, “Who taught him to read? Did you?” I explained about the Muppets program and said he’d really taught himself, though I had always made it a point to read to both of my children every night. She informed me Jason was already reading at a first or second grade level.

I remember taking him back home that day and wondering, Do I have a little genius on my hands?

For that reason alone, I made another fortuitous decision: to get involved immediately in our school’s PTO. After all, if I had a gifted child, I wanted to be sure he was going to get all the services he needed.

He made his way through his Kindergarten year relatively unscathed. After all, all the kids were new, so they helped each other out, and they got to play in their own protected playground. They enjoyed Jason despite his little quirks because he was always well behaved. He even became popular in his own way. The other kids were entertained when he’d perfectly re-enact scenes and songs from videos he’d seen.

Ready to read a story for St. Patrick's Day in Kindergarten

But it wasn’t just the children who were charmed. The teachers and staff at his elementary school took to him as quickly as had those at Sunshine. He’d think nothing of correcting Ms. Bouton in a matter-of-fact way if she happened to misread something aloud to the class, and rather than be offended, she’d be amused.

By the end of his Kindergarten year, Jason had made several friends and I was in line to be PTO Vice President in the fall. In addition, I was becoming good friends with the school principal. As I saw it, I would be getting my little boy wonder ready for possible entry into the school’s GATE program for the gifted.

Actually, we were heading toward something else entirely. A new diagnosis.

On Monday, I’ll post about Jason’s pivotal First Grade year.

 

Originally posted 2012-04-13 12:21:21.

From Food Issues to Communication (or the lack thereof)

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”

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

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.

“Wednesday Writer” – Tracy Winegar

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.

A New Phase of Education for Jason

Present word count of WIP:  57, 414

Strangely enough, Jason’s elementary and secondary education were both marked by newspaper coverage.

The first was The Press-Enterprise newspaper back in Riverside (a decade before they had an online version), when he attended Sunshine Early Childhood Center:

The latest was his inclusion by the online edition of The Tri-City Herald in their slide show of Richland High School’s graduation ceremonies. It’s one of my favorite pictures of him because he is simply beaming!

Jason gets his high school diploma, graduating Magna Cum Laude!

Now, he begins the next phase of his education as he transitions into adulthood.

First, this past Sunday he was sustained by the general membership of our stake (equivalent to a Catholic diocese in our church) to receive the higher priesthood and be set apart as an Elder. The actual ordination will probably take place in early July before his sister leaves on her mission. This will help him prepare to serve a mission in our church soon after he turns 19 in December.

In the meantime, however, he plans on beginning college studies in the fall. BYU-Idaho offers a new online program, by which those with learning/social disabilities like Jason can learn the social and study skills they will need to succeed in college courses. Called the Pathway Program, it offers weekly skill-building meetings at the local LDS Church Institute and some college prep courses. Once he is accepted into the program and has completed three semesters satisfactorily, he can be enrolled online with BYU-Idaho to pursue the degree of his choice.

He meets for his entry interview tonight, forty-five minutes from now. I promise to add an update, detailing how the meeting went (or as much as I can get out of him about it, anyway). Wish him luck!

If all goes well, he’ll begin attending Institute next week and then the Pathway courses will begin in September. The terrific thing is that I believe he’ll be able to continue his studies while he’s serving a local service mission for the Church beginning in January!

Now, if we can only figure out how to occupy his time this summer, besides helping him try to find a job. I have a few plans, but I’ll write more about them in a couple of weeks when I next post about Jason.

In any case, I’m looking forward to my son’s educational achievements in the future. Perhaps he’ll even make the newspaper again!

Originally posted 2012-06-15 06:00:10.

One Chapter Ends, Another Begins

Present word count of WIP:  56,872

Jason before the Graduation Ceremony

He’s done. He graduated. He walked with the Class of 2012 on Friday evening, and received his fancy diploma holder (minus the actual diploma, which will arrive in the mail soon). After moving his honors tassel (he graduated magna cum laude) from the right to the left along with all the other graduates, he tossed his cap in the air.

Of course, he was careful to toss it only so far so that he could quickly and easily retrieve it. After all, Jason didn’t cease being Jason upon graduating.

It was interesting to me that I didn’t get emotional during the ceremony, though my feelings seemed to cut through to my heart like a sharp knife slicing through a doughy loaf of bread. I watched as he walked in through the honor guard of academically robed faculty toward his assigned seat to the strains of “Pomp and Circumstance.”

My eyebrow rose as he then walked straight past his row toward the front. Was he making a major faux pas? No, I realized, seeing his destination: the three small risers set up in front of the dais for the “Senior Choir.” As soon as all the seniors had entered and taken their places, everyone in the sports arena was asked to stand and face the flag as Jason and his fellow graduating seniors from Richland High’s Chamber Choir sang “The Star Spangled Banner.”

Afterward, they took their assigned seats and the welcome and speeches got underway. Two things that were memorable:

First, a young man from Egypt, one of the nine graduating foreign exchange students, surprised and touched everyone when he seized the podium for a moment to give a sincere thanks for his experience here, saying “I will never forget you.” Considering the political turmoil to which he’s returning, I am sure he won’t.

Second, in talking about success, one of the valedictorians quoted the poet, Maya Angelou: “Success is liking yourself, liking what you do, and liking how you do it.”

That spoke to me because I found that to be a measure that would work for someone like my son. So many of these graduates are headed away from home either immediately or once the summer’s over–to college, jobs, or the armed forces. Perhaps they will measure their success by the world’s standard: a degree, an increase in salary, or a promotion in rank.

In the end, however, it’s the inner measure that truly counts. How happy are you? Do you like yourself? Do you like what you’re doing and how you’re doing it?

And that brings me to the true moments of joy I felt and witnessed as I watched Jason end his high school days this past week and a half.

At his final choir concert, Jason was named “Most Inspirational” among the Chamber Choir members and you should have heard the roar of approval and cheers from all his friends. That’s when I got emotional. I think it even surprised Mr. Fryhling, his director.

Again, as I watched him with his friends after the graduation ceremony on Friday (and at yesterday’s Open House honoring the graduates at our church), I was struck by how far he had come since his pre-school days.

Jason and Cody

David and Jason

Jason greeting another friend

James and Jason

Christian, Harrison, and Jason

It was a surprise for me because, unlike elementary school where parents are allowed to hover a bit, helping out the teacher as their cover, middle school and high school are practically “No Trespass” zones (unless they happen to be teachers there, as well).

Sure, he made friends in elementary school, but they were perhaps a handful at most. And he spent time with them as much for the toys they offered as for camaraderie.

But these high school years have brought Jason true joy. Check out his smile in this picture with his friend, Harrison, for example. That is no pasted on smile. That is true happiness.

Jason and Harrison

And, in the end, that’s all that counts in my book.

I can’t be sure about what lies ahead for my son, but I know he’s already gained two things that last forever–knowledge and friendships.

Originally posted 2012-06-03 09:41:13.

Jason’s Future

Present word count of WIP:  54,620

Today is the last day of Autism Awareness Month…this year. Of course, it comes around every April and who knows what Jason will be up to at this time next year?

Jason in his Senior Picture at one of his favorite haunts–Barnes & Noble

As I said yesterday, he’s planning on serving a local service mission for the Church beginning in January after he’s turned 19. That means he’ll still be living here with us and going to his assigned work area every day except Sunday, I imagine. You see? I haven’t even researched all the options thoroughly yet. I know that Alane’s son worked at the Bishop’s Storehouse, for example, but I’m not sure if that was five or six days a week.

Until then, Jason is planning on beginning the Pathways Program offered through BYU-Idaho. It’s perfect for young men and women who have difficulties fitting in socially or being independent, because it allows them to do most of their learning online while still gaining opportunities for socializing at their local Church Institute. An ACT score wasn’t required (thankfully!), and once he succeeds in completing three quarters, he can then take any courses he likes  that are offered by BYU-Idaho online.

He’ll start attending Institute twice a week this summer and then begin his first quarter in September. The mission will interrupt his studies come January, but he can pick up where he left off afterward, and finish the two remaining quarters.

We’re hoping he’ll be able to find some kind of employment this summer, as well. Not only that, but he needs to learn to drive. He’s been fighting it, but it’s a skill he absolutely needs for his own independence. I’ll also be working with him on a few other life skills this summer, including finally learning to cook for himself.

From this point on, I plan to blog about Jason’s progress only twice a month (probably every second and fourth Friday) in order to document his entry into adulthood and independent living. I appreciate all of you who have read and followed his journey thus far, and particularly those of you who have left comments either here or on Facebook.

One last point: Jason wouldn’t have done nearly as well, had we not had the support of friends like Lisa Gonzalez (a good friend and daycare provider back in Riverside, CA who treated Jason like one of her own), the terrific staff and faculty of Sunshine Early Childhood Center and Ben Franklin Elementary School in Riverside, the wonderful Riverside Children’s Theatre, so many friends in Orangecrest Ward, the very helpful staff and faculty at Enterprise Middle School and Richland High School here in Richland, WA (particularly Mr. Kopf), the Richland High School Choir, and the many wonderful members of Hill View Ward.

Three young men, in particular, made a defining difference for Jason once he started high school: Braden Nelson, Casey Hare, and Jackson Ostler.

These three were some of the most popular LDS seniors at the school and they took Jason under their wing and loved him and accepted him. Because they did, others did, too. And Lily Harris invited him to one of the formal dances, where they both had a wonderful time. I hope any teenagers who might be reading this will take a lesson from this. You CAN make a huge difference in someone else’s life.

Lily is now studying at BYU-Idaho and all three young men are valiantly serving missions right now in Mexico and South America. They are due to return this summer and I know Jason can’t wait to welcome them home.

 

Originally posted 2012-04-30 17:34:54.