Tag Archives: Asperger’s syndrome

Jason Gets Scheduled

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Each week, I grow more and more suspicious that this Pathway Program was designed with someone like my son in mind.

First, they had a lesson that basically talked him into attending college for real. Then they had a lesson that made him focus on his future and what he might want to be. Next came a lesson about general and particular goals in certain areas of life–intellectual, physical, spiritual, etc.–in the immediate future (he chose the physical…but I’ll post more about that next time).

And this week, he had to make a daily schedule.

What an eye-opener (to him, anyway). His father and I were already well aware of how he spent most days.

First, he had to track how he spent his time over 24 hours. Just the idea of it made him uncomfortable, and it’s obvious why when you examine the results:

(Just click on the image for a closer look)

In case you’re having a hard time reading the fine print, the result showed that he essentially spent a third to half his day on the computer. He calls it “researching” but he’s basically surfing the web and reading about all his favorite topics on Wikipedia or checking Facebook, Mugglenet, and the like.

Then they had the gall to ask him what he learned about himself from this exercise. As he put it to me (but not on the question sheet…there he was a bit more diplomatic), “I learned I’m a lazy slob!”

He’s exaggerating, of course, but the lesson did get through that it was time to reorganize his priorities. And that’s just what he was required to do next. Make a list of his priorities and things he needed and wanted to do. Then he had to make up a new kind of schedule.

Here’s what he came up with (after a bit of nudging from me):

(Again, click for a closer peek)

What an improvement in his use of time! I think it helped that the week before we’d already gotten him (and me) going on an exercise routine, but the addition of the commitment to spend actual daily hours in the local library, not to mention time reading rather than glued to a computer monitor, really made a difference.

As I reminded him, he can’t hope to be able to hold down a full-time job schedule until he’s able to maintain a personal schedule of his own. So on Monday we begin the new schedule. I’m so proud of the strides he’s making!

And my suspicions that the designer of the Pathway Program must have an ASD child of his own only continue to grow.

Originally posted 2012-11-09 13:09:07.

A Possible Career for Jason

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A couple of weeks ago, I wasn’t surprised to see that Jason’s homework assignments all revolved around exploring his own preferences in terms of interests and possible careers. He took three different tests online, one of which I immediately recognized as a version of the Myers-Brigg Personality Indicator test.

You know the one. It asks you to choose your preference in various situations and it’s designed to discover whether you’re introverted or extroverted, intuitive or sensing, thinking or feeling, and perceptive or judging . . . or something like that. I recalled that when I took it, I ended up being an INFJ (introverted, intuitive, feeling, and judging). So I was curious to see where my son would end up on this other man-made “spectrum.”

I decided to watch and say nothing as he answered the various questions, though more than a few times as he answered, I had to bite my tongue because that wasn’t how I saw him at all. In fact, I got to wondering how accurate this test could be for someone who has a hard time stepping outside of himself enough to judge how different circumstances truly affect him. His first result: ISTJ.

He went on to take the other two shorter tests and then let the computer spit out the jobs that seemed a good fit. There was only one–some kind of housing inspector. Jason and I looked at that and then at each other and said, “What?”

I guess I shouldn’t have been surprised. After all, when I took one of these kinds of tests in college, I was told I was most suited to be either a Priest or a Rabbi.

Anyway, I encouraged him to take the personality test again and this time I prompted him a bit based on what I knew of my son. This second time around, he turned out to be INTJ and two main careers were suggested:

Desktop Publishing or Library Science. Both were a much better fit. Of the two, he said he’d prefer working in a Library.

I was happy to discover later, in a blog posting about careers suited to those with Asperger’s, that Library Science can be a good fit for Aspies.

In any case, based on those results, he’s begun to lay the groundwork for his college courses, with an eye toward earning either a Bachelor of Science degree in Interdisciplinary Studies (which can all be done online) or a Bachelor of Science degree in University Studies (which requires some courses toward the end in residence). In either case, he’s thinking he’ll focus on the areas of English, Communications, and Literature.

Finally, a glimmer of a plan for his future. YES!

And how ironic it is that most of his senior pictures for high school were taken in our local library. Here’s one of my favorites:

Now my only concern is: With the rise of e-books, is the future of libraries in jeopardy? How will libraries change in the next five years, and will it still be a good fit for my son by the time he graduates?

Originally posted 2012-10-26 06:00:51.

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.

“Wednesday Writer” – Jason Eric Mills

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I’m kicking off my weekly “Wednesday Writer” series by interviewing not a published author, but a writer (perhaps) in embryo–my eighteen-year-old son.

Given that he was the inspiration behind A NIGHT ON MOON HILL, this won’t be like all my other author interviews (though I will ask him about his own writing at the end). Instead, I thought it would be interesting to get his take on the story he inspired. You see, he was about the age of Eric, the ten-year-old boy in my novel, when I had my first ideas for this tale. At the time, we were finally getting a handle on his Asperger’s in terms of helping him make friends at school. This interview was also my first opportunity to see what he thought about me being a writer.

Me:  Do you remember how old you were when you first became aware that I was writing on a regular basis? And what did you think of that?

Jason:  I’m sorry to say that I don’t exactly remember how old I was when I first became aware that you were writing on a regular basis. I do, however, vaguely remember you being on the computer all the time back in Riverside. (We used to live in Southern California.) But I think I truly became aware when we moved to Richland and you actually let us know that you were writing a novel. As for what I thought, I think I was like, “That sounds pretty cool. Maybe she got inspired by J. K. Rowling.”

(Not really. Don’t misunderstand. I love the Harry Potter series, but Barbara Kingsolver is more my style.) 

Me:  What was your first reaction when you learned I was writing a novel in which there would be a young boy with Asperger’s? Did it make you nervous at all? If so, why? If not, why not?

Jason:  To tell the truth, I was excited that you were writing a novel based on me. I thought it was only natural for you to write about that particular subject matter since you’ve done so much research on Asperger’s. The more I thought about it, I realized that it would be really important for you to write A NIGHT ON MOON HILL because it explains many things about AS, and I think tons of mothers with children who have AS will learn a lot from it. So, to answer your question, no, I wasn’t nervous in the least. (In fact, I was rather flattered!)

Me:  I offered to let you read the finished manuscript more than once but you always refused. Why did you want to wait for the actual physical copy of the book to arrive before reading it? What made you give in and read the Kindle version?

Jason:  I guess I wanted to wait for a physical book because I’m a freak like that. I just think it’s so much more satisfying to actually open a book, turn the pages, and be transported to another world. When you’re reading from an electronic device, I think it’s a little less satisfying because you can’t turn any pages, you don’t physically open anything, etc.

As for the second question, after Dad read it and practically raved about it, I thought to myself, “Well, if Dad really liked it, maybe I should just read it on Mom’s Kindle.” And boy, am I glad I did; otherwise, I wouldn’t have noticed that little mistake in Chapter 18. In fact, I’m surprised Dad didn’t catch it! (A mistake, by the way, which the publisher has thankfully rectified . . . so, unless you read a very early Kindle version, you will never see it!)

Jason finally getting his hands on a physical copy of the book

Me:  What did you think of Daphne, the main character, at first?

Jason:  I definitely noticed some similarities between me and her (e.g., love of swimming, neat freak, slight outdoors hater, etc.), and I also loved how brave she could become if someone she cared about was in danger. She’s practically the textbook definition of an “unlikely heroine.”

Me:  What was it like to read about Eric and the way he interacted with Daphne and others? Did it feel at all familiar or were there enough differences to set him apart from you?

Jason:  I fell in love with Eric the instant he was introduced. The conversations between him and Daphne were brilliant, and I could tell she was impressed with this boy who knew so much about angels and other things. I think there are some differences between us, like how he loves being outside while I don’t like being outside for too long. Some of his quirks felt very familiar (like how he prefers his food done “the right way” and his high soprano voice), and I thought you did a great job on his character. (Aw, thanks. Jason, by the way, had a lovely high soprano voice when he was Eric’s age…now he sings bass beautifully but has a wide range.)

Jason and I when he was about ten or eleven

Me:  Without giving anything away, what did you think of the book? What did you like most and what did you like least?

Jason:  I thought A NIGHT ON MOON HILL was very well-written and the characters were enjoyable, particularly Daphne’s agent, Judy (I thought she was the most hilarious character in the novel). I liked the whole conflict with Morgan and you did a really good job making him . . . (Okay, I don’t think I should include the rest of that sentence . . . spoiler.) I, of course, loved the relationship between Eric and Daphne, but I wish there were more descriptions of Eric’s activities with . . . (Sorry. I can’t print the rest of that sentence either. If you read the book, you’ll probably be able to guess what Jason was about to say.) But, on the whole, A NIGHT ON MOON HILL is, in my very honest opinion, your best novel yet.

(Now that I can print!)

Me:  Finally, I’m aware you’ve written a story or two . . . mainly of the fan fiction variety. Did reading my novel increase your desire to write fiction? If so, what would you like to write a story about next?

Jason:  It’s true I’ve written stories–a Lion King/Alice in Wonderland crossover fanfic, 2 “Gargoyles” fanfics, and a Wile E. Coyote fanfic–but writing an entirely original novel is pretty daunting. I don’t know that I ever could because all the good ideas seem to be taken. I am tempted to take one of my Language Arts assignments back in my freshman year in high school (about “Wicked”) and expand it. So if I do any writing in the near future, that’s probably what I’d focus on.

I’ll be certain to let you know if Jason follows through on that. In the meantime, if you’re interested, beginning next week I’m posting every other Friday about my son’s progress post-high school as he journeys toward independence.

And next week I’ll be featuring an interview with author GG Vandagriff with many of the usual and some not so usual questions.

Originally posted 2012-09-26 22:12:53.

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.

Pathway Accepts Jason

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Jason got accepted! In this next phase of his ongoing autism story, he’s been admitted to the BYU-Idaho Pathway Program, which is perfect for someone like him with Asperger’s.

According to the letter, as a new Pathway student, he’ll begin his studies in the Academic Start Curriculum. Once he completes three semesters satisfactorily, he’ll be a regular online BYU-Idaho student and able to pursue any of a number of college degrees.

Here’s a short video about the program:

While the program is new and really still only getting started, it’s going to have a tremendous reach all over the world eventually. Here’s a map showing how far it had expanded last year:

I guarantee it has grown since then and it’s exciting to think Jason will be a part of it come September. This will give him the opportunity to continue to live at home and even hold down a job or serve a local service mission while completing his course work.

Now if I can only talk him into learning how to drive. That’s the next big goal.

Originally posted 2012-06-29 09:49:07.

Jason’s Future

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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.

Challenges at Church

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One of the first books I read about Asperger’s syndrome after Jason was diagnosed was a brief, fascinating autobiography entitled Asperger Syndrome, the Universe, and Everything by Kenneth Hall, a British teenager. The book gave me hope because not only was its author an intelligent young man, fully capable of communicating how he felt about everything, but he seemed inordinately interested in spiritual matters.

I realize that may have been his particular obsession or interest, but one of the things I worried over most about Jason’s disability was whether, or how much, it would impact his involvement in our church.

LDS children are raised with certain expectations, or guided toward particular milestones, if you will, from an early age. Blessed at birth, usually by their fathers who hold priesthood authority, they are taught the gospel each Sunday in Primary from the age of three. When they reach the age of eight, they are given the choice to be baptized as members of The Church of Jesus Christ of Latter-day Saints. After baptism and confirmation as members of the church, again usually at the hands of their fathers and other priesthood holders, they continue learning simple lessons of the gospel on Sundays in Primary until they turn twelve.

At that point, the girls advance into the Young Women program. The boys, now part of the Young Men program, are ordained to be deacons in the Aaronic Priesthood, and they begin attending Priesthood Meetings. (At age twelve, both girls and boys begin attending youth Sunday School classes.) One of the duties of deacons is to help pass the Sacrament to the general congregation on Sundays. When each boy turns fourteen, he’s ordained to be a teacher, at which point he helps to prepare the Sacrament and he becomes involved with home visits. Then, at sixteen, he’s ordained to be a priest. This means he may now be worthy to bless the Sacrament and even perform the ordinance of baptism.

The next major milestone for an LDS young man is to serve a two-year mission for the church when he turns 19. (Young women may serve an 18-month mission, if they choose, once they are 21.) In preparation for the mission, the youth, once deemed worthy, enters the holy temple to make certain sacred covenants with the Lord and to receive necessary instruction.

The last milestone is a temple marriage, binding for eternity, not just this life.

Given all of this, you might well understand my concern about my son. Would he develop enough of a love for God to want to pursue all these goals? Would he gain a testimony? How much would he be able to love and serve others?

It can be difficult for those with an autistic spectrum disorder to empathize because they are so caught up in their own world. There’s a whole theory of mind problem, about which scientists have done experiments, proving that it’s nigh impossible for these children to put themselves in another’s shoes.

This is why that autobiography gave me so much hope.

So we continued to take Jason to church every Sunday and I helped him prepare and give talks in Primary. We went to all the ward activities, but usually couldn’t stay the whole time because the noise and numbers of people would get to him after a while…or if it was held outside, our stay was even shorter. Michael or I would take Jason home while the other remained with Allison.

Jason and I on his baptism day

By the time he turned eight, most of the adults in our ward knew he had been diagnosed with AS or at least that he was a bit “different.” I was nervous about his baptism. He enjoyed swimming in our pool, but I kept thinking we ought to borrow one of the white baptismal outfits and let him try it out in our pool to get used to the feel of having wet clothing on. We never did, though.

We got to the day of his baptism. In our stake in Riverside, CA, they would have one service for all the children being baptized on a Saturday. Because there were four scheduled to enter the waters of baptism that day, and so many had come to share in the experience, we had the service in the Stake Center chapel. Jason, who had a beautiful boy soprano voice, had volunteered to sing a solo, “When Jesus Christ Was Baptized,” and he did it perfectly. Then we went back to where the font was.

Seeing the font full of water, he began to get nervous and elected to go last. The longer he had to wait, the more nervous he got. When it was his turn, it was all Michael could do to convince him to step out of the Men’s changing room and step into the water. It must have taken a good ten or fifteen minutes (though it seemed longer) of hearing his high-pitched voice saying, “No, no…I don’t want to!” as Michael gently tried to convince him it would be all right.

At about the moment the Stake President, who was there, was ready to call it off and give us permission to baptize him later in our backyard pool, Jason and Michael finally came out and took the first step down into the warm water. It took another five minutes to get him to take the next step. As the water begin to soak through the bottoms of his pant legs, he said, “It feels funny. I don’t like it.” He almost turned around again, but somehow Michael got him to step all the way down, then quickly baptized him. I can tell you, practically everyone in the congregation felt like cheering at that point (particularly the Stake President).

One milestone down.

We had a few more years to breathe before the next one. (I’m not even mentioning the Boy Scout program, which turned out to be a total wash, as far as Jason was concerned. He stuck it out with Cub Scouts and Frank Gonzalez was a terrifically patient Webelos Leader. But he couldn’t stand the camp outs once he became a Boy Scout.)

The real challenge at church was his peers, but I can’t really blame them, looking back now. I should have done the same thing with them that I ended up doing with his classmates at school in fifth grade.

When his fifth grade class began studying the brain, I saw a golden opportunity to nip a growing problem in the bud. Up until then, his classmates had been pretty supportive, but in fifth grade the teasing was beginning again. One day when Jason had had a particularly hard time of it, he asked me why he felt so different from everyone else.

This was the day I’d been waiting for. All the experts had advised not telling your child about his diagnosis until he seemed ready for it. I knew he was ready. So, Michael and I sat down with him and, using a simple book I’d found that was written on a child’s level, we told him about Asperger’s syndrome. I’m not sure how he took it at first, but once I arranged to give a special presentation about it to his fifth grade class, he began to feel almost empowered in a way. Another class sat in on it, as well, and they were all enthralled. Suddenly, they understood why Jason behaved the ways he did and they no longer made fun of him. Instead, they stuck up for him.

If only I had insisted on giving that same presentation to his peers (and their parents) in our ward. It would have saved a lot of heartache, I think.

In any case, when Jason turned twelve he was ordained a deacon. He seemed to be the littlest deacon up there passing the Sacrament, but they were kind and gave him an easy route to remember.

Some eight months later, we moved to Washington and, as I said before, into a ward that already knew their way around Asperger’s.

Are there still challenges? Sure. He still hates Boy Scouts and camping. He’s grown shy in front of an audience, so he has yet to give a talk or bear his testimony (though he came close) in Sacrament Meeting. He’ll sing in the choir, but refuses to sing a solo even though he now has a beautiful bass voice. He goes to the temple with the youth to do temple baptisms, but only does the confirmations.

But as a priest now, he blesses the Sacrament with sincere power and authority. And he accompanies his father on home teaching visits, even giving the lesson now and then.

And in January, after he’s turned 19, he plans on serving a two-year local service mission.

Who knows? Perhaps a temple marriage yet lies in his future.

Only Jason can answer the most important questions about how he really feels about God and Jesus Christ and his relationship to them. All I know is that he’s come a long way spiritually from that little boy of eight who didn’t want to come out of the changing room and step into the water.

 

Originally posted 2012-04-29 20:42:24.

A More Social Second Grade

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By the beginning of his Second Grade year, Jason had made some definite advances.

First, it helped that we had put in a pool in our backyard. We wanted to get him more used to water and getting wet. He was due to be baptized by the end of the year and we just couldn’t see how that would come about unless he had a good deal more exposure to being underwater. (As it turned out, the baptism was more than memorable. I promise to write about it later, but for now, be assured that he was baptized.) Besides, he had begun to be afraid of the outdoors (by now, we had figured out that it was all the gnats and flies and anything else that flew–other than birds and butterflies–that bothered him to the point of panic) and he needed fresh air and sunshine.

Jason pushing the raft with Allison and his cousin, Cole

As you can see from the picture above, the pool worked wonders–as long as he had his goggles. Sure, he’d still run from the sliding back door of the house and into the pool, trying his best to avoid any bees or flies, and as soon as he was done swimming, he’d run back inside again…but at least he got some fresh air and sunshine while immersed in the water. Believe it or not, he developed a tan for one of the few periods in his life.

That summer we also tried to push him regarding his food issues. We weren’t very successful, but Michael did get him to help make cupcakes one day. I’m not sure that he took a bite of one when they were done, but at least he’d cracked open an egg and dealt with getting his fingers slightly slimed with the egg white.

Jason cracks an egg to help his father make cupcakes

Another big hurdle was his fear of dogs. A visit from an old friend who had the most gentle Labrador (I think–I’m not a dog expert) proved to my son that not all dogs get excited and jump all over you. After about half an hour of watching the dog from inside the house, Jason ventured out. When the dog stayed where he was, Jason approached and softly petted his hind quarters. Still, the dog didn’t get up. So Jason began petting his head. The dog sat up at that point, but that was all. Soon, they were fast friends. (Unfortunately, the visit didn’t last long. Jason’s still uncomfortable around dogs unless they’re quiet and calm.)

Jason with my friend's dog

As Second Grade began, his social challenges had diminished in terms of being bullied or harassed on the playground. This was mainly due to his making friends with one boy–Adam–who was strong and athletic and kind of looked out for him. He continued to be mainstreamed academically, except for Math. He received special math tutoring with the Resource Specialist four times a week, and went to speech therapy twice a week.

He still had a lot to learn about getting along with his peers in terms of his words as well as his actions. In some areas, he had improved, and in others he had regressed. These were the notes I made and shared with his teacher in September of 2001:

Senses

  • He seems a bit less ticklish now…at least “soft” tickling no longer feels like scratching to him.
  • He’s quite bothered again by the feel of certain inner seams and tags in clothing…the seams in socks bother him a great deal (there are only four pair he will consent to wear at present).
  • He’s gradually getting a bit better now about dealing with a drop of water on his clothing. He put up with a small drop last week for the first time, though he tried to blow it dry first.

Communication

  • Because of current speech therapy, he’s beginning to learn what certain idioms and sayings mean, but he still takes things quite literally. Now and then, however, he appears to catch on to the meaning of an expression without it being explained to him…particularly if he’s seen it used in context in a video.
  • He’s now reading at a 4th grade level, though his comprehension is not at that level.
  • He’s beginning to formulate written sentences on his own better if you give him some parameters within which to work.
  • He’s back to watching more videos again and playing less on the computer (except on Sundays)…so we’re getting a lot of quotes from “The Swan Princess” and “Sailor Moon” lately.

Motor Skills and Movement

  • He’s doing a bit better with Legos.
  • I haven’t noticed him stemming much anymore…except to bounce around on his big ball every few days or so.
  • He was assessed for Adaptive PE and the School District Specialist found him to be on the borderline, so she recommended keeping him in regular PE for the time being (which he gets twice a week with his class…I don’t know how he’s doing there).

Social Interaction

  • He’s got a few friends now…particularly a girl in his class and Adam, a boy in another second grade class (they were in the same class last year). According to his teacher, however, he’s quite jealous and possessive of Erica, for example…to the point of being rude to any other boy who appears to be a rival. As his teacher put it, he can’t quite accept that Erica can have other friends as well as him.
  • His social interaction is still mainly geared towards other toy or pet opportunities (that is, he wants to go play at Adam’s house so he can play with his cat…or he wants to go to Becca’s house to play with her toy swan).
  • Does not do well in large, rambunctious groups, as I’ve found out during the school’s annual Skills Day and their most recent attempt at a regular grade-wide PE class…he just shuts down and refuses to participate.

Obsessions/Preoccupations

  • His current obsessions are Sailor Moon and Princess Odette (from “The Swan Princess”)…also Powerpuff Girls to some extent.

Routines

  • He no longer insists on putting the right sock on before the left one…but does stick with it for the shoes.
  • A happy addition to his morning and nighttime routines: I succeeded in getting him accustomed to using an electric toothbrush.

By the end of his Second Grade year, he was the happy little boy who had disappeared for a while at the beginning of First Grade. School was fun again and he had made some friends.

Jason with Erica. He still goes for taller women.

Jason with a friend from school

I think one of the highlights of 2002, for him (and us), was his successful “Harry Potter” Birthday Party. Six friends from school came and they all loved it…everything from the castle entry to the sorting hat to Potions Class and the Snitch game. Allison even deemed it “cool” enough for a twelve-year-old to attend.

Jason holding Hedwig in front of Hogwarts Castle

Allison and Jason at entrance to Hogwarts

Jason with his guests at the entrance to Hogwarts. (Adam is the blond boy lower left)

Jason with his Harry Potter Birthday Cake

Tomorrow, I’ll post about his baptism and his general response to church in comparison with school.

Originally posted 2012-04-28 08:00:09.