An Unexpected Curve Ball in First Grade

Present word count of WIP:  51,899

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

Jason in First Grade with his new glasses

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

It wasn’t.

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

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

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

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

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

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

Jason showing off Blossom, one of the Power Puff Girls

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Peek Ahead at Jason’s Sixth Grade Science Camp

Present word count of WIP:  51,899

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

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

Jason making his way up the rock face

Jason gets some coaching

Jason and I at Pathfinder Ranch

Tomorrow: First Grade!

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

From Food Issues to Communication (or the lack thereof)

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

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

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

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

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

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

Now…on with our journey.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Would he still love me Monday afternoon?

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

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

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

Present word count of WIP:  49,832

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

The Book Business

Present word count in WIP:  47,161

(That doesn’t count the fact that I did write today…I wrote a 999-word personal essay to be posted on Danyelle Fergusen’s blog some time in April–Autism Awareness Month. I’ll let you know when it’s up and link to it. She asked for those who’ve dealt with autistic spectrum disorders up close and personal to share some positive, uplifting stories, so I complied.)

And now for Seth Godin’s last three pieces of Advice for Authors:

17. Publishing a book is not the same as printing a book. Publishing is about marketing and sales and distribution and risk. If you don’t want to be in that business, don’t! Printing a book is trivially easy. Don’t let anyone tell you it’s not. You’ll find plenty of printers who can match the look and feel of the bestselling book of your choice for just a few dollars a copy. That’s not the hard part.

18. Bookstores, in general, are run by absolutely terrific people. Bookstores, in general, are really lousy businesses. They are often where books go to die. While some readers will discover your book in a store, it’s way more likely they will discover the book before they get to the store, and the store is just there hoping to have the right book for the right person at the time she wants it. If the match isn’t made, no sale.

19. Writing a book is a tremendous experience. It pays off intellectually. It clarifies your thinking. It builds credibility. It is a living engine of marketing and idea spreading, working every day to deliver your message with authority. You should write one.

I love how he covers all three aspects of the business in these last three tips–publishing, marketing, and writing.

Publishing isn’t easy and that’s why it’s so difficult for writers to break into it. They have to build up their writing muscles over time so that the content they offer is worth the publishers’ risk. They have to build up their fan base over time so that, again, the publisher will be tempted to take a chance on them. And then, once they’re in, from all I can observe it becomes like a long-distance race. Either they’re in it for the long haul–all the signings, appearances, marketing, and, most importantly, more writing–or they get left by the wayside.

Bookstores are becoming more and more obsolete because now the reader can go directly to their chosen writer via Amazon.com or another online bookstore. And with the advent of the ebook, who needs shelves? Of course, this is not news. But more and more, I foresee bookstores using their personal touch to compete online with the big elephant. Check out Just the Right Book, for example. Here is a bookseller who got smart, moved her bookstore online and is offering the kind of service Amazon is too big and impersonal to give. If you doubt me, check out the Just the Right Book Facebook page. This is one bookstore, in my opinion, that is not a lousy business. They have vision.

As for his last tip, I readily agree. I always learn more about a topic (and myself) when I have to write about it. Once I can encapsulate my thoughts or the pictures in my head in a well-described scene, complete with realistic dialogue (both inner and outer), I am enriched…and, if I’ve done my job right as a writer, my words will likewise enrich the reader. The most fascinating thing about the writing process, besides the splashes of insight and inspiration, is that no two readers will read the same words with exactly the same result. Why? Because the reader brings his/her own life experience to meld with the author’s. That’s why the author-reader relationship is so valuable.

If you’ve ever been tempted to write your own book, do it!

 

 

Originally posted 2012-03-12 21:22:00.

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.

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.

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.

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.