In a literal sense

I went to see Dr. Temple Grandin speak a couple of years ago. I just love her success story, because of the positive influence she has had on other autistics’ lives and her willingness to share her own stories to advocate for others. She gave me an “a-ha” moment that night when it comes to Jewel that I think of on an almost-daily basis.

Grandin said when she was a young child, she and her classmates were told to “draw a church.” Other students got to work, drawing the typical triangle/rectangle for the steeple, the roof, the square house part, maybe even adding in some stained-glass windows. But Grandin said she couldn’t just get to work, because the instructions set off the “card file” in her head she needed to flip through: did the teacher want her to draw the church she drove past in the center of town, the beautiful temple she had seen in a book once, Notre Dame or some other famous church? To the teacher, I am sure it appeared Grandin wasn’t able to grasp the instructions, a reflection of her intelligence. Of course that wasn’t it at all; she was processing the instructions differently than her classmates.

The “a-ha” came because I had had a similar experience with Jewel. I had asked her to draw me a tree once, trying to keep her busy. She said, “But mom, I don’t have enough paper.” In her head, to “draw a tree” meant that it had to be a true representation of a palm tree in the backyard, and exactly that size, about 30 feet. She was right, she didn’t have enough paper!

What comes intuitively to most is lost on Jewel and other autistics. And that hesitation in getting started is not a reflection of their intelligence, it is a reflection that they process information differently and more deliberately.

One of the key differences is how Jewel takes things literally, hence the “draw the tree.” It also takes her longer to process spoken words and determine the literal meaning. If someone is talking too fast, or including several directions all at once, something will get lost. And even as she figures out the literal meaning, there’s simply not enough time to get into the figurative meanings.

When Jewel was younger, saying something like a dress would “cost an arm and a leg” scared the bejesus out of her. She had no intention of losing two limbs for that dress. Idioms, euphemisms, puns and sarcasm cause a lot of confusion and upset to autistics. Most are visual as well as literal (concrete) thinkers, so the pictures in their heads when they hear phrases such as “kick the bucket” or “elephant in the room” have nothing to do with what those phrases actually mean. It takes a lot of effort to disengage them from those images and get them back on track. Only then can you get into explaining the figurative and broader meaning of those words.

Jewel is often laughed at for such misunderstandings, which of course adds to her stress. Also, there are times when her literal interpretation of instructions and rules at school are misinterpreted as noncompliance or “bad” behavior. It confuses her when she is doing what is “right” in her head and then learning from the teacher she is doing it all “wrong.” She is not deliberately trying to get out of work or do the wrong thing, she just needs guidance, support and clarity as to what the right, literal instructions are. Teachers can do this by avoiding abstract concepts and generalizations.

The concept of sarcasm is especially tough for Jewel. In the beginning, if someone would literally say something, she would take it literally. Then I explained that sometimes people say, “Nice haircut,” and mean exactly the opposite, because they are being sarcastic (and cruel as well, in this case).

The trial and error period on the sarcasm lesson is still going on with her. The other day, a boy cut his finger in class and was about to go to the nurse’s office. Jewel noticed and quietly took a bandage out of her backpack (bonus points for preparedness and empathy!) to hand to him. He said, “You keep Band-Aids in your backpack?” and tears sprang to her eyes as she quickly asked the teacher for a break.

Burned before by classmates, especially boys, being sarcastic to her, she thought he was making fun of her for having such an item at the ready. He wasn’t; he was honestly surprised that someone would think to carry bandages around with them and offer them readily. From a teacher’s perspective, Jewel could be seen as overreacting and ungrateful toward the boy. It’s because the teacher and the boy knew, intuitively, that there was no sarcasm in his statement. However, Jewel does not know this intuitively; she must learn it through trial and error.

Each time such misinterpretations and misunderstandings happen, Jewel learns something new and important. And that will help with the next time, because there will always be a next time.


The best accommodations, for students and teachers

I got an email from one of Jewel’s teachers the other day saying she was having a hard time getting Jewel to do the work in class that is required. She said she knows Jewel is smart in math but is worried she will fall behind if she doesn’t put in the work, and that any “input or advice” from me would be appreciated.

This is exactly the kind of open communication that is needed to help autistics learn and grow in a general education environment. Something seemed to click with Jewel last year when I came up with “Team Triangle”… the concept of Jewel, me and her dad, and the folks at school working together to make sure she gets the support she needs.

Along those lines, it has been a joint effort in coming up with the modifications and accommodations that will help Jewel in the classroom. It’s an impressive list going back through her IEP reports, with standbys that have stood the test of time, others added after something worked on the fly, and some  going by the wayside naturally as she grows and matures.

For example, the physical act of writing is a “non-preferred task” for Jewel. The fine motor skills of gripping a pen or pencil don’t come easily to her and many other autistic kids, and trying to align her slow-moving writing skills with her rapidly firing brain is many times an exercise in frustration. Neurotypical kids don’t think twice when told to “pick up their pencils and get to work.” She does.

So, what to do? Some of the modifications we have tried over time are pencil grips so she can grasp something thicker, mechanical pencils that don’t dull, gel pens that flow more easily. Some of the accommodations we have tried include that she is allowed to circle answers or draw lines between columns instead of rewrite them out, or just do the odd-numbered answers to show her knowledge.

When it comes to these accommodations and modifications, some have more weight than others depending on the student and some are more universal than others. Some of the more commonly used ones are allowing more time on tests, allowing tests to be taken in a less-disruptive environment, breaking assignments into small sections and having an aide scribe for the student.

Here are the top accommodations/modifications that have specifically worked the best for us. Feel free to add any and/or all to your IEP reports if they aren’t already in there:

1) Give adequate notice of any change in routine/schedule. A head’s up about a substitute, an assembly, etc., helps Jewel visualize her day and change up that “tape player” she had turned on the morning to adjust to the changes. Routine and predictability is vital to autistic kids and lowers their stress level; any shift in gears can possibly upset them.

2) Build in breaks, and allow for spur-of-the-moment breaks. Sometimes Jewel needs to just retreat to a different area in the classroom, other times she needs to breathe fresh air to relax, and other times she needs a change of venue to gather her thoughts. It takes many, many conversations to help teachers and others understand break requests are overwhelmingly because of overstimulation and self-regulation, and not Jewel’s way of avoiding tasks. With clear and consistent rules, kids must be trusted to know when they have had enough. Denying a break when a child repeatedly asks for one is one of the major causes of escalation.

3) Give preferential seating. For many teachers, having Jewel sit at the front of the class, where they can easily assist her, seems the right thing to do. However, for Jewel, she much prefers to be by the door. The visual of being close to a potential escape without having to run past all those faces helps her stay calm. Also, who she sits next to his important. Nice classmates who support her and don’t judge (peer mentors) are ideal; kids who invade her space, make a lot of “mouth noises” and click their pens are the opposite of ideal.

4) Designate “safe” spots. In early elementary school, Jewel had a beanbag chair in a corner she could go to in the classroom when she needed to calm herself. Beanbag chairs are like swimming in water and weighted vests; the pressure on so much of the body helps with sensory overload and calming the frayed nerves. However, when she eloped out of class, no one knew where she would go. That’s when we added a designated “safe” spot at school (her speech room, and later her special-ed program director’s classroom) to her IEP report. She knows she always has a place to go to and self calm. This has evolved into an outside space being added (the playground or garden area) if fresh air is what is needed.

5) Assist with initiating a task. Self initiation is tough for Jewel … she tells me she would rather not do the work at all than do the “wrong” work and “be laughed at.” As she watches other kids seem to naturally just get to work, she can tense up, blank out or freeze. It takes a teacher or aide to go up to Jewel, calmly, without drawing attention, and help her take the first step. She can go on from there, she just needs to be coached on the first step.

6) Allow “non-typical” classroom materials. Over the course of her school years, Jewel has been allowed to use a timer, pencil grips, gel pens, privacy boards, “fidgets” such as squeeze balls and bendable figures, earplugs … even a photo book I made featuring funny photos of her dog and cat. They have all served a purpose. She is a visual learner, so the timer and schedule kept her on task, others helped her writing, and fidgets and her pet book let her take mental breaks so she wouldn’t need as many physical breaks. Once teachers understand these aren’t ways of escaping work, but actually help with the work, everyone benefits.

Of course, there are lots of other accommodations that can evolve over time and/or never make it into an IEP report but just make sense. For example, it was soon apparent that a combination lock on her middle-school locker would not work for Jewel. The fine motor skills of lining up numbers after three to the right, one to the left, under time pressure, etc. was an unneeded stress. We got permission for her to use a different type of lock, and that source of frustration has been eliminated.

As for Jewel’s math teacher, I let her know that Jewel has trouble with self-initiation, and would need a prompt from her or an aide as she got started on her work in the classroom, to make sure she (literally) was on the right page. I let Jewel know what I had told told the teacher, and she later came up to me and said, “Mom, thanks for keeping me on track at school.” Time stood still, the heavens parted, and for that moment I soared as Supermom, cape and all. Then Jewel looked at me, cocked her head, and critiqued my current outfit and fashion sense, and I crashed back to Earth.


Turning a meltdown inside out

Misbehavior. Outbursts. Tantrums.

All kids are guilty, with a surprising lack of awareness of setting and timing … what politicians and pundits call “the optics.” A can of corn is swept off a supermarket shelf by a kid who doesn’t like riding in the cart. A first-grader decides the first day of school is the first time to try out his push technique coupled with a “Get away from me!” on his new teacher.

Parents get the “control your kid” look from strangers. Or at least that’s how it is feels. And the kids learn just how little (or, worse, just how much) they can get away with.

There is something very different that comes into play with Jewel and other autistic children. Yes, she does the typical testing of boundaries, she’s a kid, after all. But with autistics, the sensory inputs are contorted. What Jewel is seeing at any given time can become blurry or wavy, stationary objects appear to move, she can “taste” what she is smelling, background noise is amplified and reverbs, and she feels “enveloped” by the textures of what surrounds her. There is no tuning out. Because her brain’s connections are wired differently, there’s just too much distorted input.

Think of a fabric store as the ultimate in sensory overload: all those buttons and yarns and bolts of fabrics, all different colors, all different patterns, all different textures, all different smells, rows and rows of black coarse leather next to the multicolored brown fur next to the cowboy-patterned with red background cotton times infinity. Then add in the sound of someone sifting through the beads in the notion department, and someone else humming along to the classic rock on the radio, REO Speedwagon, “Keep on Loving You,” sugary sweet platitudes, while the woman is using rusty scissors to cut beige smelly burlap while smacking her gum. Yep, I’m squirming now too.

When the input gets this “loud” and the different senses get mixed up for Jewel, the overwhelming feeling of loss of control takes over, and her coping skills are forgotten. That’s when the meltdown happens. People on the outside see and hear the screaming, the anger, the loss of control. The “flight or fight” response takes over.

Jewel, a lover more than a fighter, much prefers flight. At school, she elopes out of the classroom to her predetermined “safe” place. In a store, she heads for a dressing room. It took me a long time to realize why: It’s the one place in which the sensory inputs are at a minimum, small, clean and clear of people and things.

Certain things contribute to the sensory overload that leads to true meltdowns for autistics. For example, while neurotypical people filter out the “pulsing” fluorescent lights emit, autistics (and those with ADHD) have difficulty doing so. Waiting in line is also a particular challenge. With no option to leave, they are in a crowd of people with all types of looks and all types of clothes, and there are all types of smells and all types of noises.

A meltdown doesn’t happen every time autistics go into unfavorable or chaotic situations, of course. Sometimes there’s enough front loading, or enough luck, to head one off. It’s not overly hot outside, the kid has a full belly, isn’t extra tired, is in the right, optimistic mood … lots of things come into play. This very unpredictability makes dealing with meltdowns all the harder, because they can come seemingly out of the blue.

But if you dig deeper, you discover they aren’t out of the blue. The triggers were there. They just need to be identified, and then addressed. Transitions to a new task are a challenge, so extra support to make sure the child is sure of the directions and expectations is needed. A teacher casually going up to check whether Jewel is working on the right page in her workbook can head off a potential meltdown. And placing demands on hold can throw a towel over the flames, just as making demands is like adding gasoline.

I can lessen the probabilities of Jewel having a meltdown, but I can’t alter her reality. She will have to cope with a world that sometimes pulses, in which she can “see” lyrics dance around a room, and feel as if she is being rubbed by sandpaper when she sees a certain color. I can empathize but not experience life as she does. And I can help her find her way in this world by using her vantage point to her advantage.

The bold and the beautiful

And there it is again, another teacher, another specialist saying to me, “I’ve never had a kid like [Jewel] before.”

“She’s so … bold,” said the specialist who runs the program at her middle school for autistic kids. The program is specifically designed for those children who do well in a mainstream educational environment but need social skills support.

Be fearless. Be brave. Be fierce. The statement T-shirts scream these attributes at tween girls. Be bold. But all of a sudden, the concept is being used as something that sets Jewel apart, that could stand in her way.

To set the scene: It’s a little more than a week into Jewel’s first year at middle school, lunchtime recess out on the yard. Jewel is trying to find her footing as kids from four or five elementary schools blend into this mishmash of cliques. Her best friend from her old school buys lunch and so is still in eating after waiting in the long lines. Jewel spots a girl from her classes, one she admires as “stylish and cool and beautiful,” walking in a large group of eight to 10 friends. Jewel, wanting to be this girl’s friend, goes up to the group, on the fringes, hoping to just “blend in,” in her words. But one girl in the group says to another, “Who’s she?” And the girl responds, “That’s [Jewel]. She thinks she’s so special, she just follows people around.” Jewel froze in shock, and then ran away.

Yes, it is a truth universally acknowledged: middle school sucks. Oh wait, Jane Austen didn’t write that last part? There’s a reason why people groan at the words “middle school”: it’s just one long social nightmare for most, to varying degrees, of course. It’s a place in which going up to “stylish and cool and beautiful” girls and their friends without introduction is social suicide. It’s just not done, and most young girls know this social norm innately. Jewel doesn’t; social norms and cues are something extra she has to study, beyond history and math and science.

And, because autism is still much more predominant among boys than girls, the slings and arrows that tween and teen autistic girls specifically face is still relatively unchartered territory for many school specialists.


But there’s something beyond that here that is baffling Jewel. One of my more frequent admonishments to her is, “Have courage and be kind” (which I blatantly and unapologetically stole from the recent “Cinderella” movie). So if I am telling her to have courage, why shouldn’t she go up and try to befriend Ms. Stylish and Cool and Beautiful and her friends?

Ah, the gray areas, the bane of autistics’ existence. Jewel lives in a world of absolutes, in which she always reads the posted rules and has a near-photographic memory from which she will cite any contradictions to what you are currently saying. She absolutely insisted once we could not ride an escalator at an American Girl store because somewhere buried in the posted sign was “no open-toed shoes” and we were wearing flip-flops. We had driven 40 miles to the place, and ended up in the employee elevator so we could see the second floor.

Jewel has mellowed some, and with enough explanation I can get her to see some rules are more “strict” than others. But what about the unwritten rules? The gray areas are even harder to explain. Why DON’T you go up to that group you want to belong to? Why isn’t that showing the courage I always tell her to have? Why is that considered “following” people instead of friendliness? Why aren’t these rules all written out somewhere so she can memorize them? Why does everyone else seem to know them and she doesn’t?

The specialist at Jewel’s school explained that most of “her kids” are shy and hesitant in the face of social situations, either having been burned before or having no interest in such interactions and social dynamics. There are social skills programs that go into great detail about how to approach someone new, call them on the phone or text them, etc. She will be launching such a program in the next several weeks; Jewel is just ahead of the curve and jumped in quickly. Boldly.

So how can I fault Jewel for doing something I encourage? I don’t. I told her that she would be encountering a lot of social norms she would have to learn over the next few years, including letting friendships happen organically, by finding common interests. And that she would find friends and where she belonged. And that she would encounter many more judgmental girls who would offer their opinions of her that she knew weren’t true. And it would hurt. And in the moment, she could say, “That isn’t true, and that isn’t nice.” And she could walk away with her head held high.

I also told her she is far more brave than I am. And she said: “I already knew that, mom. I want to go on way more roller coasters that you do.” And now we’re on to the next lesson, social bravery versus thrill ride bravery. She’s got me beat on both counts.

The big, bad second-grade ‘incident’

There was Jewel, scrunched in the corner of the principal’s office, face to the wall. I had been called to the school that morning and told there had been “an incident.” I tapped my then-second-grader on the shoulder, and as she turned to me she growled, her face unrecognizable, behaving as if she didn’t recognize me. How had it gotten to this point?

The “incident” became a turning point for us, and put into motion events that ultimately led to Jewel getting the services and support she needed through her public school district. Because the transition to middle school has gone pretty well so far, I have been thinking a lot about the “what if’s” and want to share the story as a way of helping others still struggling.

By second grade, Jewel had been assessed and was on an IEP (Individualized Education Plan) for “autistic-like behaviors” with the school district, receiving services since preschool. The then-principal was tough but fair, and Jewel had lucked out with teachers, especially an open-hearted first-grade teacher who helped her flourish. But the RSP (Resource Specialist Program) teacher at the school was assigned to the job as a second career, and she had little experience, training or intellectual curiosity. One of Jewel’s other aides, her speech teacher, “got it,” and he and I and another aide worked together on a “decision tree” to craft some accommodations and goals for her IEP.

Things changed at the school as Jewel entered second grade. There was a new principal, who appeared to not be the least bit versed in special education. She also was actively hostile to learning anything more, saying it was a general education environment and “behaviors” such as disobedience would not be tolerated.

Jewel’s second-grade teacher had told us at the start of the year, “I have never had an autistic kid in one of my classes.” Knowing this was statistically impossible, I replied, “No, you’ve had autistic kids, you just never knew it.” She had been teaching the same way for decades and was one of those one-size-fits-all instructors: books had to be put away in desks in the same exact order by each student, and the kids had to pick up the floor around their desk every day. Jewel saw no reason for all the books to match in all the desks and, as a budding fashionista, found it a grave injustice that she should be required to go down on all fours in her beautiful dresses to clean the floors every day.

Faced with such a “my way or the highway” teacher, Jewel chose the highway. For autistic kids, with their sensory issues, non-neurotypical thinking and social deficits, it takes a lot of mental training and strength to sit in one place, under fluorescent lights, and pay attention and process commands quickly and accurately, and all the while tune out the background noise, whether it be mental or physical (kids drumming their fingers or kicking the desks in front of them, and all the “mouth noises,” as Jewel calls them, that come from fidgety elementary schoolers).


This can cause a child to escalate to a four or five on the scale commonly used to monitor kids and their moods. All it would take is one more demand from the teacher when Jewel had yet to process the last one, and the flight-or-fight response would kick in. The teacher, who was used to giving multi-step directions after so many years without slowing down, would make that one more demand. And Jewel, more of a lover than a fighter, would choose flight, bolting out of her seat and running out the classroom door (they call this “eloping”).

By mid-October, only a month or so into the school year, Jewel was eloping with frequency. And the principal, on at least one occasion, was giving chase. It must have been quite the scene … my girl doing her slow gallop around the school, with the new sheriff in town in hot pursuit in heels. Here’s a little tip: don’t feed into children’s “fight or flight” responses … they’ll just think, “Game on!” and want to make the principal chase them every day.

The principal began to threaten Jewel with suspension, sometimes in front of other children. The speech teacher and I (quaintly now, thinking back on it) suggested putting a stop sign on the inside of the classroom door, instead of addressing the larger issue. WHAT was making her bolt?

It came to a head that October day. Jewel got overwhelmed in class, a nearly daily occurrence by then. The principal and I had had a fairly heated phone discussion about her threats of suspension in front of others, and I had told her that I wanted to be present if she felt the need to discipline Jewel. When Jewel had asked me what she should do if the principal tried to talk to her alone in her office, I had said there would be no way that would happen and to “kick up a fuss” if it did. Bad move by mom.

It did happen. The principal insisted on talking to Jewel alone in her office, and Jewel kicked up a fuss. Throwing herself to the floor by the front office staff, she screamed, “No, my mom told me not to talk to you.” That’s when I was called.

It took me the whole weekend to get Jewel back to herself; it is the only time I have been scared she might not be able to “snap back” out of an escalation. The principal dug in her heels and insisted on suspension, which I knew would be seen as a reward instead of a punishment to Jewel (“Stay home with mom instead of go to school? Sign me up!”). To get Jewel the “free and appropriate education in the least-restrictive environment” (FAPE) that federal and state law requires, we enlisted the help of the school district. After much back and forth, by January of her second-grade year Jewel was transferred to another school that had a special, “push-in” program for autistic children. She flourished there, and is in that same program at the middle school. We know we are extremely fortunate that this was an option.

But what about the next non-neurotypical child at her old school? That’s why everyone with a vested interest in education needs to get past the “what” and to the “why.” The easy part is for a teacher or principal to tell, sometimes in great detail, what your child did; the hard part is to figure out what prompted your child to do that.

Parents and school officials need to look at the causes, what is called “antecedents” by therapists and others, to keep children from getting to a four or five on the escalation scale of five. To determine these antecedents, a “functional behavior assessment” needs to be done. It looks beyond the behavior itself at the purpose behind the behaviors, and serves as the basis for a “behavior intervention plan,” which is a separate plan but included in the IEP team process.

Once the “why” is determined, then the IEP team can come up with modifications and accommodations. These can include, for instance, built-in short breaks throughout the day, a teacher slowing it down or checking back with the student, visual cues on the desks (most autistic kids need visual reminders), preferred seating near like peers, classroom “jobs” to build confidence, privacy boards, acceptance that it’s OK that books are put away differently or some kids might want a broom instead of crawling on the floor … the list can go on forever.

I didn’t know all this back then. I wish I had.


The beginning of the middle (school)

It’s been hanging out there, all summer, the knowledge Jewel will be starting middle school this fall, and all the anticipation, dread, anxiety and hopefulness that means. The transition is tough on all kids, as they start a new school, with new people and new routines, then throw adolescence and being the youngest on campus into the mix … it’s a big ball of uck feelings. This is especially true of girls. And this is especially true of my autistic girl.
If talking about the impending changes counts for anything, then Jewel is 100% ready. She has worked through so many scenarios in her head, culled from extensive reading and website searches. Variations of “what to expect from middle school” and “How to deal with bullying in middle school” litter her web search history; I am thankful her mind works this way, that she needs the visual cues of a written-out list to help guide her.
This research and our talks (oh, how we’ve talked) help her develop scripts in her head for all sorts of situations, but of course you can’t plan what reality will be. And all of the front-loading in the world can’t either.
Jewel has been obsessed with getting a top locker. She doesn’t want to bend over to load and unload, she says it makes her dizzy. She has used the phrase “top locker” with me about 3,197 times, approximately, since last spring. I do not use the word “obsessed” lightly.
At registration day last week, I front-loaded her: we had completed all the necessary forms online so would get in a “fast-pass” line to begin, take school pictures, turn in PTA and emergency kit forms, buy PE clothes, get her class schedule, get a combination lock and her locker number, get textbooks, and escape with our lives. I didn’t know what order it would go. We got there early but not too early because the other grades went before us and I knew Jewel couldn’t handle waiting in the sun for too long.
And of course it was chaos … the fast-pass line extended quite a ways down the parking lot and the sidewalk. Jewel had a fan that attaches to her phone via USB, which helped. A friend of hers joined us in line to provide a needed distraction. A wonderful teacher from her elementary school was working the PE clothes stop and took Jewel aside to help her. But it was hot and overwhelming and confusing, and I took my eye off the prize. Jewel left with a couple of friends to find her locker while I tried to find the textbooks stop, but she came back to me in tears. It was a bottom locker.
I had her look at me hard, and reminded her first impressions mean a lot, and the school cafeteria was teeming with kids she would have classes with, see every day. She pulled herself together as I told her we would talk to the school office staff about switching lockers, that we had talked about that plan if she indeed had been assigned a bottom one. We both took a deep breath, and headed to the office.
While locker assignments were not among the major issues the lone woman working in the office instead of the registration area needed to be contending with that day, she remembered Jewel from her old elementary school as I explained she was in the program specially designed for autistic children. She gave us a list of the limited available lockers and Jewel found one that was at the end of the row, at the end of the hallway, next to an open door, and best of all, it was a “top locker”! Success came with A LOT of help.
School starts Thursday, so now it’s about front-loading the specifics. She has her class schedule and a map of the school, so she can map out her moves from class to class. She is practicing how to do a combination lock and has organized her binder and other supplies. Her first day of school outfit is, naturally for this fashionista, planned out to the last detail.
The wonderful part of all this is that all of the other kids are doing this too, it is typical. This is a big deal to someone who is usually confronted with being “non-typical.” She wants to fit in, and it appears she is off to a great start.

A rookie mistake

Jewel was almost 4 when I first heard “autistic” in reference to her. She was months into a part-time preschool program overseen by the local school district, her first significant time around other children, and I was told her interactions were noticeably different.

In denial, I went into observation mode. I saw Jewel take her place on the classroom rug, and the preschooler next to her pop up and go to her mom, saying, “I don’t want to sit next to her; I’m going to wait for the other girls.” I was crushed, but Jewel wasn’t; she kind of squished around a bit on the rug and shot me a look as if to say, “Great, more room for me.” I look back on this now as the defining moment when I realized different, or non-neurotypical, doesn’t have to be a negative.

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It’s been more than seven years since then. As much as I have learned, there is still so much to teach her before she declares her independence. And I still make mistakes, lots of them.

Here’s a big one I made recently. My plan was simple: surprise Jewel with tickets to an awards show concert featuring a few of her favorite performers. I had tried to track down tickets to the sold-out show for weeks and reached a deal off Craigslist the day before to buy two up close to the stage at face value. Sure, we had to drive 25 miles one way in Friday afternoon L.A. traffic, but it would be worth it to see the look on Jewel’s face when she realized we were going to the show, right?

Trying to keep the surprise, I told Jewel when I picked her up from school we were going for a long drive, but she insisted to learn of the plan. When I excitedly told her about the prime seats at what I thought was the show of her dreams, she immediately shot down the idea. “I don’t want to go,” she said emphatically.

What a rookie mistake by me. I thought I knew my 11-year-old daughter inside and out, and could anticipate her every reaction. I thought she would sing my praises and call me the “best. mom. ever.” Nope, I was “the worst!”

My first misstep was putting too much pressure on a quick decision, because we needed to go right then, after a long week at school, and pay for the tickets. But I made others, including going for the element of surprise instead of front-loading and giving Jewel time to plan out the event in her head. Also, I had taken away all control over the situation, and she had no say in the who, what, when and how.

But as I delved deeper with Jewel about why she didn’t want to go to the show, it became apparent it was the fear factor. She didn’t know whether she could deal with the noise of the performances, the disappointment of her favorites not winning, even the requirement she would have to “keep a secret” from her friends for a day about the winners until the concert aired on TV.

As I listened to her reasoning, I was impressed. My key mistake was putting myself in her place, thinking of how joyful I would have been at age 11 to get such a surprise, instead of taking into consideration my daughter is non-neurotypical.

I am a firm believer in what Dr. Temple Grandin says about stretching autistic children outside their comfort zones to help them become independent. I think of it as a stretch band when it comes to new experiences: Jewel goes out a little further each time, and I pull her back for some front-loading and to come down from the sensory overload, and then she stretches again more and further. It takes patience (not one of my virtues) and persistence, and sometimes I’m grabbing the stretch band and pulling it back like crazy because it didn’t work, and sometimes the stretch band has extra slack I didn’t see and Jewel is mad at me for not letting her go all the way out.

So with the concert awards show, I grabbed the stretch band and pulled it back, and we didn’t go. I ruefully laughed at myself for thinking I knew it all when there’s still much to learn, and I reveled in the progress Jewel has made. She knows herself and her limits so much better now. She was able to thoughtfully and plainly tell me why she didn’t want to go, instead of enduring the show (or worse, getting very upset in the middle of it as it was being filmed for TV).

Instead of the show, we went to Jewel’s aunt’s house to go swimming. And afterward she called her aunt the “best. mom. ever.” Just in case I was still convinced I deserved the title.