Category Archives: Personal

Obsessions, Preoccupations, and Routines

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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

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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.

Jason’s First IEP

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After all of his testing by school officials, a date was scheduled for Jason’s first IEP (Individualized Education Program). This is a regular meeting (at least annual) at which parents and school officials (teachers, special ed and/or resource specialists, school psychologists, etc.) get together and agree on how best to meet the special ed student’s academic needs within the parameters set by the law and district policies.

I’d read online all kinds of horror stories about these IEPs. Generally, it seemed to be a bargaining process and the student often ended up with the short end of the stick. Fortunately, in our case, I was now slated as President-Elect of the school’s Parent Teacher Organization and I already got on well with the Principal. In fact, Ms. Aklufi set aside time so that she could attend the IEP and make certain Jason got what he needed.

We all agreed that, other than certain speech difficulties (having more to do with understanding idioms than being unable to make certain sounds) and a definite defecit in understanding math, Jason should stay mainstreamed. That is, he would be pulled out of his regular classroom only for math plus a couple of speech therapy sessions a week. Those speech therapy sessions turned into social skills training, as well.

I believe that another reason that first IEP went so well was due to my preparation. In advance, I compiled a report on our son that reviewed the history of his physical, emotional, and social development. In fact, I’ve been using that report to help jog my memory for these postings. Included in that report at the end was a detailed listing of many of his quirks and idiosyncrasies up to that point. In other words, anything that seemed to me to stand out as different from the “norm.” I’ve decided to share that list here over the next several days. I broke it down into six different areas: Senses, Communication, Motor Skills and Movement, Social Interaction, Obsessions/Preoccupations, and Routines.

I’ll begin today with Senses and Communication. (Keep in mind, these were up through his First Grade year. Some of these may have been mentioned already in earlier posts.)

Senses

  • Medicine and food that most kids can ingest will make him gag.
  • I’m assuming that the reason he won’t even try some of the foods we eat is due to their look and smell. The other night when we were eating chicken from KFC, he complained aloud, “Your food smells!” He’s eating Eggo pancakes now, and a couple of times when the store was out of them and we had to buy the store brand or another brand, he wouldn’t even try them simply because they looked a little different. He won’t try our home cooked pancakes either, probably because they don’t look as evenly cooked as Eggo pancakes.
  • When I have forced him to try something new (my only successes have been apple, a baby carrot, and a tiny piece of turkey…I had to really bribe him for those), he takes forever eating the smallest bite, chewing and chewing for more than five minutes.
  • He’s extremely ticklish all over his body, but if you tickle too hard he says it feels like scratching.
  • He refuses to wear certain clothes because they aren’t soft enough. I have to take the tags out of his clothes and slippers because they bother him.
  • He can’t stand getting wet when he’s dressed (we finally got him used to being in a swimming pool). If water or liquid spills on his shirt or pants, he HAS to remove that article of clothing, even if it’s only a small area of wetness. He won’t wait for it to dry. Even in the bathtub, though he’ll let us pour water over his head, he doesn’t seem to like getting his face wet and wants it immediately dried as soon as it’s been washed and rinsed. As a toddler, he cried and cried if we ran carrying him through the sprinklers to have fun in our swimsuits on a hot day. This past year, he finally ran through the sprinklers on his own and seemed to enjoy it. But he has always disliked (and still does) sticky stuff like glue.
  • As a toddler, he hated walking or sitting on the grass if it meant bare skin was touching the grass. He also hated walking barefoot on sand. Now he’ll go barefoot on sand (and enjoys playing in it even to the extent of lying down in it and making angels), but still doesn’t like the grass as far as I can tell.
  • He has always hated loud noises (like the vacuum cleaner, ceiling fan in the bathroom, hair dryer, etc.) He’ll tolerate the vacuum now but still tries to avoid being in the same room when I’m vacuuming. Much as he loves Disney movies, we’ve rarely been able to get him into a movie theatre because he can’t take the volume of the sound, particularly during the previews.
  • When he was younger, he loved staring at a light or at the sun till we broke him of the habit, convincing him it was bad for his eyes.
  • At around the age of three, he was fascinated with the dust particles that showed up in the ray of sun coming in through the living room window. He’d stare at them for lengthy periods and even tried playing with them (running through them and turning to look at how they moved in response).

Communication

  • He taught himself to read between ages 3 and 4, and is now reading at a 2nd and 3rd grade level, seeming to comprehend much of what he’s reading.
  • Despite his high reading level, he still confuses the meaning of some words such as hot and cold, or today and tomorrow and yesterday, or on, or before and after.
  • He reads aloud like an adult, with proper inflection and expression.
  • He has difficulty responding to general or vague questions such as “What did you do in school today?” or “What did you learn at Saturday Class (Riverside Children’s Theatre)?” His usual response is “I don’t know” or “Never mind.”
  • He’s writing well as far as forming the letters and words and constructing sentences. He also doesn’t seem to have difficulty writing answers to questions (unless the question is something like “What is on the hat?” because he doesn’t understand “on”). But he can’t seem to make up his own stories, even if given a topic or idea. He’ll just say, “I don’t know what to write!”
  • Any kind of subtle sarcasm goes right over his head. He takes things literally. If he asks me a question and I say, “Wait a second,” he immediately asks the question again. (I don’t know if this applies, but I’ll never forget the night his father and I were trying to convince him to try eating some chicken and he looked at us, deadly serious, and responded, “I don’t eat animals.” He’d had no exposure to vegetarians up to this point, so it was as if it came out of left field…another expression he wouldn’t understand.)
  • Often, he will ask me a question, I’ll give him an answer, and then a few minutes later he’ll ask the same question again (sometimes two and three times). For someone with as phenomenal a memory as he has, it’s amazing that he can’t remember what I just told him…so either he needs repetition to remember, or he isn’t paying attention to my answers.
  • For the most part, his memory is phenomenal. He’ll see a video once or twice and be able to quote whole sections from it…the same with songs he hears…IF he’s really paying attention. Not only can he quote it verbatim, he mimics the voices and accents. By age 3, he was mirroring everything Julie Andrews was doing, singing and saying in “The Sound of Music.” The same with Mulan in the Disney video. He has no problem repeating any Italian phrase I tell him, complete with accent. His latest such feat in mimicry was doing Mrs. Potato Head and Tour Guide Barbie in “Toy Story 2″…and Linus in “A Charlie Brown Christmas.”
  • He’s not watching as many videos lately (spending more time on the computer instead), but out of nowhere at the dinner table or in the car or at the store he’ll say some little snatch of something that may have nothing to do with what we’re doing or talking about. So I’ll ask, “Who says that?” or “What’s that from?” and invariably it’ll be some Disney or cartoon character or a quote from some video or computer game he’s watched or played…and not necessarily recently (he may not have watched that show for over a year or more).

Perhaps the best thing about that first IEP was my husband’s response to it. He finally began to take Jason’s diagnosis seriously, particularly as he saw that school professionals were doing so. He has, since then, become Jason’s strongest champion and supporter.

Tomorrow, I’ll cover Jason’s differences in Motor Skills and Movement, as well as his Social Interaction at age 6.

Originally posted 2012-04-23 20:44:26.

The Challenge for Siblings

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Today my daughter walked with her graduating class at BYU. I can hardly believe how grown up she has become. A lot of it has come in this last year as she’s been teaching her own class of Fourth Graders in a paid internship here for one of the school districts in Utah. I saw it later in the morning as I watched her interact with her pupils. She was the one in charge. There was no question. But I could also tell how much they love her.

Something else I noticed that was different today: she was dying to introduce her brother, Jason, to her class. Ten years ago, that would have been the furthest thing from her mind. Today, he’s cool. Back then, in the throes of peer pressure, he was simply embarrassing.

Of course, what little brother isn’t? Growing up, we’re all so easily humiliated by our family members, both older and younger, once we reach adolescence. So, imagine that humiliation magnified ten-fold by a brother who ducks under the table at a restaurant, refusing to come out until our “yucky” food is gone…or one who does anything girls on the playground ask him to because he’s doing his best to be agreeable and doesn’t realize they’re intentionally making fun of him. I mean what teenager wants to be related to someone so “clueless” socially?

To be honest, Allison didn’t truly begin to accept her brother’s differences until she finally began having friends who thought he was cool. Both in school and at church. That happened when we moved here to Washington. We lucked out and moved into a ward whose bishop had a son with Asperger’s. And there were a couple of other families, too, with a child on the autistic spectrum. Jason was welcomed with open arms. That made it a whole lot easier for Allison to behave as lovingly around him outside the home as she always had inside our home.

The other difficulty for a “neurotypical” sibling is feeling a lack of attention in comparison to that paid to the AS child. As parents, we had to be very careful to make certain Allison knew she was as loved and valued as Jason was.

I knew she’d turned the corner on her acceptance of her brother when she graduated from high school and made a few of her friends who were going to be seniors promise to look out for him once she went off to college. They did, and Jason blossomed even more.

Allison’s there for him now…and she always will be.

 

Originally posted 2012-04-20 21:55:55.

An Unexpected Curve Ball in First Grade

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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

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Present word count of WIP:  51,899

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

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

Jason making his way up the rock face

Jason gets some coaching

Jason and I at Pathfinder Ranch

Tomorrow: First Grade!

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

From Communicatively Handicapped to…Genius?

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Present word count of WIP:  51,026

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

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

Jason boarding the bus for Sunshine

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

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

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

Jason sitting on his therapy ball while watching a favorite video

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

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

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

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

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

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

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

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

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

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

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

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

 

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

From Food Issues to Communication (or the lack thereof)

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

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

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

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

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

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

Now…on with our journey.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Would he still love me Monday afternoon?

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

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

From “Normal and Healthy” to “Food Issues”

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Present word count of WIP:  50,811

Jason at 4 months

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

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

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

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

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

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

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

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

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

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

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Present word count of WIP:  49,832

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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