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.

Jason’s Motor Skills and Socializing

Present word count of WIP:  53,057

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

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

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

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

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

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

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

Motor Skills and Movement

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

Jason with one of his older RCT friends

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

Social Interaction

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

Jason playing with his cousin, Cole

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

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

Jason’s First IEP

Present word count of WIP:  52,346

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.

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.