“Wednesday Writer” – Jason Eric Mills

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

(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

(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

Present word count of WIP:  59,985

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

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.

Challenges at Church

Present word count of WIP:  53,497

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

Present word count of WIP:  54,620

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.

Checklists for the IEP

Present word count of WIP:  53,497

I know. I didn’t post yesterday as promised. I’m afraid that the closer I get to the LDStorymakers Conference next week, the harder it’s getting to keep up with everything I need to do daily. Still, I’ll try to finish this out (even if it runs into May a bit).

Also, I said my next posting would be about changes between his First and Second Grade years. But then I realized I ought to include two lists I provided (prepared in advance) at his IEP at the end of his First Grade year (in preparation for Second Grade). Parents of children on the autism spectrum need to go into these meetings as fully informed and equipped as possible. I believe I came across the first, a suggested checklist outlining suggested modifications, adaptations, and support systems that might be useful for a child with Asperger’s, on the Online Asperger’s Syndrome Information and Support (O.A.S.I.S.) center website (which has since changed a bit since they combined with another support group). But I don’t recall for certain. Anyway, I went ahead and adjusted it a bit to more closely fit what I thought Jason needed.

Here it is:

Specially Designed Instructions for Educators:

IEP Modification/Adaptations/Support Checklist

For:  Jason Mills

Date:  May 10, 2001

Grade:  First & Second

Communicating to the Student:

____Be concrete and specific

____Avoid using vague terms like later, maybe, “why did you do that?”

____Slow down the pace

____If necessary for understanding, break tasks down into smaller steps

____Use gestures, modeling, and demonstrations with verbalization

____Provide accurate, prior information about change

____Provide accurate, prior information about expectations

____Specifically engage attention visually, verbally, or physically

____Avoid idioms, double meanings, and sarcasm

 

Encouraging Communication with the Student:

____Pause, listen, and wait

____Watch and listen to attempts to respond

____Respond positively to attempts

____Model correct format without correction

____Encourage input and choice when possible

 

Social Supports:

____Protect the child from bullying and teasing

____Praise classmates when they treat him with compassion

____Create cooperative learning situations where he can share his proficiencies

____Establish a “buddy system” in each class he attends

____Build in time to watch, encourage watching and physical proximity

____Practice on specific skills through natural activities with one peer

____Practice on specific skills through natural activities with a few peers

____Structured activities with set interaction patterns and roles

____Focus on social process rather than end product

____Specific teaching, rehearsal, practicing, and modeling in natural settings of the

following skills:

____turn-taking     ____complimenting     ____negotiating     ____responding

____inviting     ____waiting     ____greeting     ____repairing breakdowns

____joining others     ____accepting answers of others     ____joking and teasing

____accepting success of others     ____taking the lead

____following ideas of others

 ____Shared interests using inteerests and strengths

____Teacher or school personnel advocate who will problem solve and facilitate

____Individualize social stories giving specific situations emphasizing descriptions and

perspectives

____Concentrate on changing unacceptable behaviors and ignore those that are simply

“odd”

 

Environment and Routine:

____Provide a predictable and safe environment

____Minimize transitions

____Offer consistent daily routine

____Avoid surprises, prepare him thoroughly and in advance for special activities,

altered schedules, or other changes, regardless of how minimal

____Talk him through stressful situations or remove him from the situation

____Provide personal space in resource or other room for relaxation

____Reduce distractions and sensory overloads, including:

____noise     ____vision     ____smell

 ____Allow modifications as needed to deal with sensitivity to touch issues, such as

immersing hand in gooey liquid

 

Presentation of Material:

____Presented visually through:

____written     ____demonstration     ____pictured and written     ____pictured

____objects     ____calendars/maps/charts/diagrams     ____computers

____video

 ____Use established routines

____Consistent use of expectations

____Peer tutoring

____Divide instruction into small, sequential steps

____Provide repeated opportunities to practice

____Provide needed prompts and cues

 

Assessment and Assignments:

____Modify difficulty where needed

____Shorten

____Alter activity

____Highlight text

____Provide choice of activity

____Learn format ahead of time through rehearsal

____Modify questions format

____Allow extra time

____Apply learning to real situations

____Provide visual cues as a way of teaching how to summarize/write

 

Self Management/Behavior:

____Teach use of timer or other visual cues

____Individualized contract

____Provide reinforcement that is:

____individualized     ____immediate     ____concrete     ____other

____Incorporate strengths and interests into daily plan

____Encourage choices and decision making where appropriate

____Analyze the purpose of behavior from student perspective

____Translate purpose into skills to be taught

____Avoid pressure to “be good” or other abstract expectations

____Avoid punitive measures that lower self esteem, increase anxiety, and aren’t

understood, like:

____taking away set routines, free time, exercise     ____sending home

____lecturing or yelling at

 ____Avoid disciplinary actions for behaviors that are part of the disorder, i.e.:

____avoidance of eye contact

____talking to self

____slow response time

____lack of “respect” for others

____repeating words or phrases

____upset in crowds or with noise

____anxious

____perseverating on topic of interest

____upset by change

 

Homework:

____Individualized

____Shortened

____No more than one hour per evening

____More time and help

 

Staying on Task:

____Break assignments down into small units

____Provide frequent teacher feedback and redirection

____Provide time in resource room for completion of classwork

____Sit him next to buddy so buddy can remind him to return to task or listen to lesson

____If necessary, lessen homework expectations

 

I know now how overwhelming all of that would look to an elementary teacher with a class of 30-35 kids. Why? Because my daughter is just completing her first year of teaching Fourth Graders, and I can’t believe how overloaded she is and she has only one student who appears to be on the autism spectrum.

On top of that list, I presented the school personnel with another list I’d adapted from the Technical Assistance Manual on Autism for Kentucky Schools by Nancy Dalrymple and Lisa Ruble. (I would imagine you could google it, but if you can’t find it and want it, let me know by email.) The list is titled, “Behaviors That May Be Personal Challenges For A Student With An Autistic Spectrum Disorder,” and I checked off every one of the behaviors that I thought applied to Jason.

But I didn’t go into that IEP expecting to receive ALL of those accommodations. I simply hoped to receive some, if not most, of them. Remember, the IEP, if approached correctly (meaning if you’re polite, well-informed, prepared, and willing to meet the school halfway) is like a negotiation. You ask for everything possible, but in the back of your mind, you decide those things you absolutely won’t give in on for the sake of your child.

By asking for so much, I certainly got the school’s and his Second Grade teacher’s attention. I could be assured she wouldn’t be ignoring him that next year. And I assured her that I would be there at least three days a week to help her out…not just with Jason, but with all the kids, or with whatever she needed. As I said before, it certainly helped that I was slated to be the next PTO President, but it helped even more that I was able and willing to lighten the teacher’s load. After all, she/he is the one who’s dealing with your child on a daily basis for at least six hours. These teachers need and deserve our help.

Tomorrow, I’ll post about his growth that next year.

Jason with his fabulous Second Grade Teacher, Mrs. Frausto. Notice he's holding two of the Powerpuff Girls.

Originally posted 2012-04-27 10:26:49.

Obsessions, Preoccupations, and Routines

Present word count of WIP:  53,060

One of the main symptoms of Asperger’s is some kind of obsession or preoccupation with a particular subject or object or topic. For some, it’s trains. They can tell you all about every kind of train ever built. For others, it’s the Crimean War. Again, they can talk for hours about what led to it, where the battlefields were, etc.

With Jason, I had a hard time pinning down his particular obsession. He tended to fixate on a few particular videos, toys, books, computer games, or magazines (which were often related to a show or two with which he was obsessed). Looking back now, I’d have to say that, for him, the overarching obsession was Disney and it continues to this day.

At the time I compiled this list, however, I would have pegged it as media and media-related objects or toys, though there were other fixations:

Obsessions/Preoccupations

  •  Anytime we go somewhere in the car, he has to take one or two small toys with him. He used to have to take them into wherever we were going–the store, the mall, church, a house we were visiting–but we’re gradually weaning him by making him leave them in the car.
  • His latest obsession is the Powerpuff Girls and that’s all he will draw (and his drawings are spot-on, by the way). He’ll draw them on any paper…even drawing them into totally unrelated coloring books. It’s as if they have to be a part of his world.
  • Early on, at ages 2 and 3, he was fascinated with globes and, later, maps.
  • He knows all the planets and is fascinated with the stars and flying.
  • Anything Disney. He devours any Disney catalogue that comes in the mail. He loves all Disney videos and tapes. He loves the Disney Store and Disneyland, but he won’t go on many of the rides. He’s really only interested in the characters.
  • Lately, anything Lego…including Lego catalogues. He actually prefers Legoland to Disneyland now because it’s less crowded and the rides aren’t as scary. He LOVES his new Lego Island CD game on the computer, and he can’t wait to get his promised Lego Train Station at the end of next month.
  • He can easily spend 2-3 hours on the computer if I let him. He had an early fixation on “My First Encyclopedia” and still quotes often from it.
  • He had a “Sailor Moon” fixation based on the videos, but got teased a lot for singing the theme song at school and acting like Sailor Moon, so he doesn’t do it anymore.
  • He loves Barbies and Polly Pocket toys (mainly because there’s lots of pink–his favorite color–and because the latter are so small…he loves small toys).
  • He used to dress up in his sister’s dresses to re-enact favorite scenes from Disney movies (he always wants to play the female lead)…doesn’t do that as much anymore.
  • He used to line up his smaller toys a certain way on his nightstand (as many as 15 different toys or figurines). He also used to be more obsessed about putting toys away in a certain order or way.
  • His current obsessions seem to be Powerpuff Girls and Legos.
  • If he watches a video or movie on TV he HAS to watch the whole thing, particularly the credits (he was already into credits at a very young age). If the video gets interrupted or paused, he won’t pick up where it left off. It has to be rewound and watched from the beginning in its entirety. It’s the same with a book, though he’s not as inflexible with an interrupted book.

I wasn’t sure, at times, where his obsessions ended and his routines began because he could be so obsessive about routines. Early on, Jason seemed to want particular routines that went beyond the norm. Indeed, the routines could become very complex as they developed.

If we did something one way, and he accepted it, then he wanted it that way every time thereafter. If we happened to unsuspectingly add something to the routine, and he accepted the addition, then the next day it had to stay part of the routine. This would go on in some cases in such a way as to make the routine ridiculously convoluted after a week or so:

Routines

  • Food Routines:  Cheerios had to be served in a bowl from an early age…then he’d take 5 or 6 out and line them up and eat them one at a time until it was time to line up the next set of 5 or 6; French toast and bread had to be served with the crusts off, one slice on top of another, then cut vertically and horizontally four times each way so you ended up with 16 small pieces on top of 16 other small pieces (he wouldn’t eat them presented any other way); Vanilla ice cream will only be eaten if you present it to him with the spoon already in the ice cream (he has to have the spoon first and he only eats it from the bottom of the spoon, licking it off); Banana peels at first had to be cut off halfway down because he couldn’t stand the peels hanging down over his hand (we finally broke him down to accepting them hanging as long as there were no stringy parts hanging separately); Eggo pancakes have to be heated in our microwave exactly 1 minute and 20 seconds, then taken out and cooled for exactly 4 minutes (when they’re brought to him on a plate, he won’t eat them unless and until the three pancakes are positioned to look like Mickey Mouse; upsetting his food routines really causes him to lose control…it’s really the only time he throws any kind of mini-tantrum.
  • Morning routine: This has gotten more relaxed lately, but he still insists on putting his right shoe on before his left shoe (same with socks). He tends to want to wear some of the same clothes and it’s really hard to get him to wear some new clothes, particularly when they are darker in color. Also, once it’s warm enough to wear shorts and he finally gets into wearing them, then when fall comes and it’s getting cooler again, it’s hard to get him switched back to wearing long pants.
  • Bedtime routine: After scripture reading, family prayer, and a bedtime story, he won’t go to sleep until both my husband and I have taken turns saying, “Good night, sleep tight…” then he says, “Don’t let the bedbugs bite” and we say, “That’s right,” touch his nose and kiss him (plus lately I also have to blow kiss him on the neck). Something that was added to his routine later and remains to this day (unlike the bedtime story, the sayings, the touching on the nose, etc.) was a humidifier when he got sick. He liked the noise so much that when he got better he still insisted on it. We’ve replaced that today with an air purifier.

At the conclusion of my list, I wrote:

“Despite all his idiosyncrasies, Jason’s a very well-behaved little boy who sometimes seems to talk like a little man. The most he’ll do when he gets mad is grit his teeth (though his teacher says at school he’ll shake a bit and pump his arms up and down), go to his room, and slam the door. But he always says, “Sorry” later, forgives and forgets. He has no stage fright and is enjoying his classes at Riverside Children’s Theatre (as he enjoyed being in “Cinderella”)…We love him so much and just want to do our best to see that he starts enjoying school again.”

Tomorrow, I’ll share his developmental update from Second Grade. On Friday, I’ll skip ahead to another turning point for him–Fifth Grade.

Originally posted 2012-04-25 17:00:20.

Jason’s Motor Skills and Socializing

Present word count of WIP:  53,057

I came across an old email sent to a PTO colleague toward the end of Jason’s First Grade year. Reading it again these many years later still transported me back to the mindset of that first year after his diagnosis:

“Two days ago when I was watching Jason on the playground I wasn’t stressed so much as depressed and kind of lost in thought. He seems so normal at times and then I catch him so obviously unlike most of the other kids…playing by himself, in his own world. After he went in to see the private psychologist yesterday, Allison asked me if I wasn’t disturbed or unhappy that he has Asperger’s syndrome…I said that, certainly, for the first few months it was depressing (without explaining why) but that I’d come to grips with it. In truth, I have moments (and probably always will) when it’s a depressing, discouraging, and unsettling realization. Anyway, the moments pass. Enough venting.

My stress lately hasn’t been so much PTO but, rather, getting my kids to all their various appointments with doctors, Jason’s psychologist, dentists, the orthodontist, etc. I probably seemed stressed the other day because I had to get Jason to his appointment with Ms. Bouton (Even though she was his Kindergarten teacher and he’s now in First Grade, she’s graciously offered to help him twice a week after school with his math, since he gets along so much better with her than with the Resource Specialist, Dr. Mahdavi…Ms. Bouton has a nephew with Autism and her brother-in-law’s niece has Asperger’s), and then hustle back to meet with Dr. Mahdavi and the District’s Adaptive PE Specialist concerning the results of her assessment with Jason. Bottom line: TOO MANY APPOINTMENTS AND MEETINGS! I’m just not used to it…but I’d better get used to it because, in a week or two, Jason will get started on Occupational Therapy twice a week for six weeks or so. Anyway, like I said before, enough venting already!”

No, it wasn’t easy, but it wasn’t nearly as difficult as many parents with kids on the autistic spectrum have it. I recall one mother at our school who had triplets, one of whom had pretty severe autism. She ended up having to institutionalize him after her divorce because by middle school he was simply too big for her to handle when he got violent.

I certainly felt blessed when it came to Jason’s temperament.

Now, on with the list of his differences in Motor Skills and Movement, followed by those in Social Interaction.

As with speech, Jason was delayed in both fine and gross motor skill development. He showed no interest in sports (I signed him up for T-ball and basketball and even gymnastics, since he was so small…but he didn’t seem to fit in or enjoy any of it) and hardly ever wants to go outside to play. That latter characteristic might mostly have been chalked up to his inordinate fear of dogs, but by his first IEP he seemed to be beginning to get over that. (Actually, he’s never really gotten over his fear of dogs even today.)

Motor Skills and Movement

  •  He’s only now getting comfortable using scissors to cut things up (this after two and a half years of pre-school, plus Kindergarten).
  • As a toddler, he had a real fear of stepping up or down off a curb (even when holding on to my hand). The occupational therapy helped here, and he will now go up and down an escalator (holding my hand).
  • He’s been described by my father as having a strange gait, walking like Hercule Poirot in the PBS Masterpiece Theatre series (whatever that looks like).
  • Halfway through Kindergarten he was finally able to ride the big trikes…but he shows no interest in his own little bike with training wheels. He is showing an interest, however, in his sister’s new scooter. (That didn’t last.)
  • He can’t pump himself on the swings and, when pushed, only wants to go so high.
  • He still needs help dressing himself (he can’t do the zipper, some buttons, or put on his own socks).
  • He avoids slides at all costs, unless they’re small slides he’s familiar with.
  • He doesn’t seem to have the strength to build with Legos himself…but we’re working on it.
  • He used to rock a lot while eating at the table until he had a bad fall. He also rocked whenever we held him in our lap. He still does when he’s bored or antsy (like at church).
  • He used to rub his thumb and index finger together softly while he read or listened to stories or sat at the table…he doesn’t anymore.
  • When he’s not feeling well or worried about something, he’ll sit or lie down and softly stroke his bare stomach (he was doing this today after school).

Jason with one of his older RCT friends

Socially, Jason at age 6 was very affectionate and loving with those he was close to (mainly his immediate family and Grandma–my mother) and could become so very quickly with others he met (like Amanda, a 14-year-old at RCT, the children’s theatre group)…generally, however, he didn’t have any real friends among his peers either at school or church.

Social Interaction

  •  Kids in his class at school are nice to him and some really go overboard to help him out in class (with cutting and gluing, etc.), but he doesn’t seem to really make a personal connection with them. I thought he was becoming friends with Drew, particularly because they started out taking swim lessons together last summer, but nothing’s really ever come of it. The only time he wanted to go to Drew’s house was because he wanted to see one of his toys. As I’ve thought about it, most of his requests to socialize seem to be geared toward getting an opportunity to play with a particular toy or item.
  • Even when he’s playing with his cousins, he’s playing more with the toys than with the cousins.
  • He seems to socialize better with adults or older kids or younger kids.
  • Generally, his social behavior seems immature for his age.
  • He’s content to play by himself with his toys, his Gameboy, or on the computer. He’ll go upstairs and read or play for hours without complaining about being bored. Unlike his sister, he never complains of being bored.
  • If he takes a dislike to someone, adult or child, he shows it readily with off-putting, rude behavior (often to the point of embarrassing us).
  • In fact, he seems to have developed very little tact despite our best efforts to educate him to be polite. He just says what he thinks.
  • He also doesn’t seem to be able to clue in to certain social graces. Hardly a day goes by when I pick him up after school that someone will say “Bye” to him on our way out to the parking lot and he doesn’t respond. Invariably, I have to tell him to say “Bye” back. There are a few people he goes out of his way to greet or say “Bye” to (like his teacher, Ms. Rios), but he’s oblivious to most.
  • If the teasing by others is subtle, he doesn’t get it and ends up laughing at himself just because the other person’s laughing. I guess that’s what he’s supposed to do, too.

Jason playing with his cousin, Cole

Tomorrow, I’ll post about his Obsessions/Preoccupations and his unusual Routines. Some of you have expressed a desire to know how he’s changed (or not) over the years. I promise to conclude by covering that development by the end of the month.

Originally posted 2012-04-24 18:53:18.