All you do to me is talk, talk

When Jewel was little, I did a lot of talking (Who am I kidding? I do a lot of talking now). Back then I would take her on long walks on the beach path, me yakking away behind her as I pushed her in the jogging stroller.

As people are wont to do, I had come up with nicknames in my head for some of the regulars I saw out there… there was “stooped-over jogger lady,” “tan biker lady,” “kite shop dude,” etc. Years later I met a woman who said she used to see me a lot back then, and she was glad to finally put a name to “stroller mom who talks a lot.”

Words and language are my things, as an editor and writer by trade and purveyor of sarcasm and wit since birth. By nature and nurture, today Jewel is most often described as “hyperverbal.” While nonverbal is one end of the autism spectrum, the range goes all the way up to hyperverbal, in which certain autistics like Jewel have highly developed vocabularies and tend to talk incessantly and quickly, as if their mouths are trying to keep pace with their brains.

When Jewel was diagnosed autistic, I did a lot of reading, as all parents in that situation do, to help me understand what to expect and how to guide her going forward. One of the key criteria in diagnosing autism (which is done through assessing behavior; there is no blood or other such test) is “literal thinking.” People like Jewel take things literally and have difficulty with figurative language, such as idioms, sarcasm and jokes.

This was one of those “a-ha!” moments for me, as in, “A-ha! That’s why she’s always looking at me like I’m nuts!” because a phrase like that might make Jewel look at me in search of actual almonds, cashews and peanuts.

So in ways large and small I went about teaching Jewel how to understand and use figurative language, something her neurotypical peers learned to do instinctively.

How do you teach about figurative language to autistic literal thinkers? Here are a few of my tips:

*Use exaggerations as jokes. This helps autistic kids learn that unrealistic or unexpected things often make people laugh, such as in cartoons with the flattened Wile. E. Coyote. For example, I made up a simple story about a goat going to the grocery store and buying up canned goods, and hilarity ensuing as the goat ate the cans and threw away the food. This oft-retold and expanded-on story helped Jewel understand fiction and distorted reality can be funny, and not everything she will learn about can happen in a literal sense.

*Teach how to kid around with someone or be self-deprecating in a gentle, nonjudgmental way without teasing or being mean. This one pays off for life, but it’s probably the most difficult. Sarcasm is a go-to move for me, but I had to learn to really tone it down around Jewel because it confused her too much. I learned that if I was going to say something like, “Oh yeah, you really HATE football” to my husband, I had to be aware to tip off Jewel that I was kidding around with him and I actually meant the exact opposite. So I’d add a wink or some other visual “tell” to help her realize what I was doing. The key thing is to avoid jokingly criticizing the autistic person, who won’t understand why you’ve suddenly turned on her and her My Little Pony obsession. It’s an important skill to learn how to be funny without hurting someone, and it takes a lot of trial and error for autistics.

*Explain about idioms and their meanings/derivations. Most social thinking curriculums spend a lot of time on idioms, because of the confusion they can cause literal thinkers. A kindergarten teacher can tell students something will happen “when pigs fly,” and kids like Jewel might run to the window looking for airborne swine. It helped Jewel when I would explain the meanings behind them, such as telling her about “big wigs” and how politicians and other power brokers in Europe wore wigs a couple of hundred years ago, and it became a matter of the bigger the better.

*Use a lot of analogies to explain what’s going on. This is a go-to move for me. I have told Jewel many times that having her experience new things is “like stretching the rubber band.” It’s become routine for us to discuss whether it’s time to stretch it a little further or pull back, and we talk about me trying to pull it back rapidly when things aren’t working out and what might cause it to actually snap. It’s the easiest way to get her to understand hard concepts. I just read another analogy recently from another mom of an autistic child in which she talks about her child in school in terms of square pegs and round holes. She said most of the time it’s the school trying to make that square peg (her child) round, and it’s her job sometimes to push out on the edges of the round hole (the school) to make it more square. Oh yeah, I’m going to use that, next time I’m yakking away in a school meeting.

 

‘Mama Bear’ sends an email

 

So, who had “less than three months” in the pool as to when I would end up in the principal’s office at Jewel’s middle school? You win!

I’ve been in dozens of meetings with school officials over the years advocating for my autistic daughter. Some of these have been a breeze, one I remember storming out of in anger; most do not include tears.

The ideal school meetings are ones in which everyone agrees on Jewel’s areas of need, we see eye to eye when it comes to the accommodations and modifications that are needed to achieve clear and measurable goals, and small areas of conflict are solved with mutual respect and trust.

What did I do this time to prompt the call to the principal’s office? I emailed Jewel’s math teacher and special-ed program director to say Jewel had talked nonstop from school pickup to bedtime, falling asleep in tears, about her math teacher’s “bad mood” and the kids all agreeing and that she yells and “needs a spa day.” I said in the email that I know I only get Jewel’s side of things, and the sensory profile we provided to all teachers addresses this very issue, stating ” … Ask her to tell you her story. It will be her version, which might not be reality, but she needs to get it out. She often self-corrects when she is totally back to receptive mode.”

My email did not go over well, to say the least. The teacher looped in the principal and assistant principal in her response. She took umbrage, saying she isn’t in a bad mood and doesn’t yell. She also said in her email: “There seems to be a theme here when [Jewel] doesn’t get her way.  She automatically sees it as she is being victimized, when she isn’t.”

The intent of my original email was obviously lost. It wasn’t about bad moods and yelling and spa days, it was about Jewel’s fretting for hours about math class and falling asleep crying. I was reporting exactly what Jewel said to me as her advocate, not because I thought it was reality, but because it is Jewel’s reality, and it needs to be addressed.

That said, the response to my email revealed something troubling … the teacher’s untrue, negative mind-set. Jewel is nonneurotypical, so this isn’t about neurotypical willfulness or playing the victim; teachers and others at the school need to understand, acknowledge and accept this. Her executive functioning challenges, difficulty reading context, emotional regulation issues and lack of flexible thinking make any such battle of wills over who is “getting their way” counterproductive. Jewel’s rigidity means the teacher cannot be rigid, it only causes friction when two “rocks” are rubbed together. Teachers can inspire Jewel, or they can be the ones she survives, based on their willingness to understand her perspective.

In discussing all this, someone from the school referred to me as a “mama bear.” It isn’t the first time and won’t be the last I get called that. I am Jewel’s voice until she can advocate on her own, and I take that seriously, educating myself, learning from the past, trying to see all points of view, and most important, discussing with Jewel what’s working and what isn’t to determine the whys and what can be done. There’s a reason that parents are part of the IEP team; it’s called institutional memory.

So,  how did the meeting the principal’s office go?

When I tried to make the case that Jewel is responding to negative, rigid teaching, I was told, well, life is like that, she needs to be exposed to all types of people.

When the emphasis is put on her alone having to change, I get frustrated. Sometimes I lash out. This time, taking a cue from Jewel’s own reaction, Mama Bear cried, with the realization that again the onus was on Jewel and Jewel alone to adapt, instead of a shared responsibility.

It isn’t about accommodations, it’s about approach. And by basically saying Jewel has to get used to the fact there are mean people in the world, it gives teachers a pass. We ask Jewel to adapt time and again. Her IEP calls for teachers to “place demands on hold.” Logic tells me we are the adults in the room and have to adapt and accept her differences. I am not a patient person, but I’ve had to learn to be more patient because of Jewel. Teachers and others who come in daily contact with her need to fully understand there is too much and too narrowed focus on the outside, and that we always must look at what is happening inside Jewel. Her behavior is a symptom of the problem, not the problem itself.

These issues weren’t fully resolved. We left cordially, agreeing we all had to work together. But I failed in the advocacy department because I let my emotions overtake my responsibilities to Jewel.

As an advocating parent, I go into these meetings with notes, copies of Jewel’s most IEPs and any other supporting documents, a recording device and a clear sense of what Jewel needs to succeed. I also go in with an open mind and knowledge of what is up for compromise and what the absolutes are. Even with all that preparation, sometimes I fall short of my goal.

And so I learn from this, and forge ahead, and promise to do better by her the next time. I want to be the Mama Bear running through the ocean with her cub on her back, protective and free and joyful, not the one crying oceans of tears with her in frustration.

And I deal with it all by keeping my sense of humor. Jewel was quick to point out something about this latest episode. “Mom, you got called to the principal’s office before I did at middle school!” Thanks, dear, for the reminder.

Explaining Trump’s win to my autistic tween daughter

Jewel asked whether she could stay home from school the day after the U.S. presidential election. She didn’t want to be around the “Trump boys” who have been chanting, “Build the wall” the last few weeks. In her autistic mind of absolutes, it’s her alone versus them, and she wasn’t sure she was up to the task.

She has been very tuned in to this campaign and had been so excited at the prospect of a president who cares about kids and those with special needs, one who doesn’t use vile language and speak so hatefully, especially about women, a particular sore spot with Jewel. She worries the teasing at school will only get worse, with kids emboldened to follow Trump’s lead, as he is the new leader.

I am all about giving her life lessons, but this is the hardest one I have had to teach her to date. And it begins by her squaring her shoulders, and going to school with her head held high, knowing she has value, deserves respect and is an equal to her peers in every way.

I told her we will accept the outcome of the election, but never bend in our own core beliefs of open-heartedness, kindness and courage. I told her the country is deeply, deeply split, as Hillary appears to have won the popular vote. I told her that the U.S. was founded on the principles of diversity and inclusion, and this result hasn’t changed that. I told her she is protected and loved. And I told her that in a democracy, there are processes in place that keep one person from exerting absolute power. And I am trying to convince myself of that last one.

Selfish braggarts, those who discount anyone who looks different than himself or herself, those who pick on the weak and disaffected and lack empathy toward people walking a difficult path, and those who think women are to be judged on their looks alone and be flattered if someone deems them attractive enough to force unwanted attention on them … these are the personality traits that will get you scratched off my list when it comes to people I choose to have in my life. And it is a philosophy Jewel also wholeheartedly embraces.

And yet here we are, with someone who has openly embodied all these traits now the president of the United States. I told Jewel that not everyone who voted for him embodies these characteristics, that here is a lot of frustration in this country from people who feel left behind, that government leaders have let them down. I told her that she cannot compromise in speaking her own mind, expressing her own opinions, in this deeply divided country. She has an equal say as an American, she is not “lesser” because she is female and because she has a disability.

I preach all the time that Jewel needs to feel “safe, accepted and competent,” but how do I protect her when I feel none of those things after this election? We are not alone. Women, immigrants, minorities, Muslims, those in the LGBT community and other disabled students are feeling this. My only advice to Jewel, myself and everyone else is “fake it ’til you make it.”

Jewel asked whether Trump would take away special ed programs from schools, especially for those with autism. His only public mentions of autism during the campaign came in a primary debate and tweets, in which he clung to the thoroughly discredited study that linked vaccines to autism but found to have been based on falsified research. I can’t help but remember his mocking of a physically disabled reporter.

Trump has the power to appoint health officials that could steer autism research dollars away from valuable inclusion programs and toward this disproved autism-vaccine connection, and has shown intolerance toward the disabled. Hillary had a comprehensive plan, developed with scientists, educators and autistics, to help autistics find jobs and live more safely, and she says she does not believe vaccines cause autism. I couldn’t reassure Jewel on this point about the special ed program.

I sent emails to Jewel’s program director and the school psychologist, telling them about Jewel’s worries and asking for their support. I know how lucky we are to have this resource, and everyone needs to lean on their support systems during this difficult transition. Their response gives me hope: We’re all trying to make sense of this, and we’re here to help.

Always a pessimist and planner, I began bracing for impact a few weeks ago. Several months ago, we had lost our beloved cat, to cancer at age 5. Jewel was devastated, and it began to feel right to look for a new kitten, not to replace but to heal our hearts. The timing could not have worked out better; we picked up our new kitten last weekend, and Jewel is hugging her and loving on her and talking to her about all this. Just seeing her furry face, knowing she is now in our lives, is calming to us. My advice to those feeling dismayed, disoriented and distraught: Hug your people and find your bliss.

Searching for anything else positive in all this, I told Jewel that this means SHE still could be the first female U.S. president. It gave her no solace; she said Hillary would win next time. I explained what a longshot that was, given her age and this defeat, and she grew pensive. “Wow, I really didn’t think this would happen.”

I know, honey, I know.

For more blog posts from this author, visit Please Bring Tacos.

The New Normal

Last week I met with Jewel’s middle-school teachers as they each assessed how she is doing so far. It was a really good meeting, not a litany of complaints, but a great, honest exchange of ideas about the best ways to get the best out of Jewel while taking into consideration her autism.

Some of it hurts my heart, to hear about how Jewel pushes back when it comes to doing warmups in math (she can’t see the point) or how she lashes out at classmates when she can’t tune them out. This makes me worry about long-term perceptions about her among her peers. However, parents and teachers have assured me that kids are mostly about themselves in these tween years, and such things may soon be forgotten.

What I love about these teachers is their willingness to make accommodations, to figure out what works individually for Jewel. That may mean a more lenient goal time in running the “cross” in PE, or letting her show her work in different ways in math. Their open-mindedness in creative solutions to help her best learn and thrive are appreciated and welcomed. I came away from the meeting impressed, and grateful.

Something else really amazing has happened at school. Jewel decided to start a fashion club. It takes serious initiative … she had to get the administration to sign off on the plan, line up a teacher advisor, do a club “rush” with signups and posters, and come up with a game plan for what the club might do at each meeting.

I thought maybe it would be too much, or Jewel would lose interest. It’s been quite the contrary. Her special-ed program director agreed to be the advisor at the lunch meetings, and Jewel’s “rush” efforts (a glittery poster full of fashion designer sketches and eye-catching signup sheet) attracted 20-plus kids to join.

This is WAY outside Jewel’s comfort zone … at club rush, for example, she had to sit at a table and ask her peers at a new school to join something she has created. The fact that she did it, her bravery, still amazes me. I couldn’t do something like that at that age.

And then, yes, all the gals (yes, all girls, it IS a fashion club) that signed up showed up for the first meeting. Jewel was bubbling about it after school, saying it went extremely well and going so far as to observe, “Mom, I think it’s really going to help me fit in at school.” That’s a lot of insight. She also told me that she wants the newspaper to do a story on it and that creating the club “will look good on her college applications.” She’s got a little public relations gene in her.

Her special ed director/advisor gave a glowing report after the first club meeting:  “They ate lunch, talked, and had fun being creative with the art supplies you brought in. …  I wrote “Music Playlist” on the board and had the girls sign up to pick different songs for us to listen to as we worked and socialized. Fun was had by all!”

I don’t take such victories for granted. Jewel’s social limitations and awkward encounters have made me appreciate the successes all the more. My favorite part is that she did this and continues to do this on her own. She has complete control over her “fitting in” and “being normal” (what she calls “making my autism disappear,” but what I think of as using all of her brain to her advantage), and with that ownership comes pride and bravery and determination.

So yes, I revel in this, but I must point out, my husband and I are fond of saying, “Well let’s not start patting each other on the backs quite yet.” This is the edited-for-basic-cable-TV version of a memorable Harvey “The Wolf” Keitel line in “Pulp Fiction,” cleaned up to hilarious effect. It helps us keep perspective that even when things are going well with Jewel, it doesn’t mean there’s smooth sailing from here on out. But of course, this is true of any child, and perfectly, wonderfully normal.

 

A view from Jewel’s seat in the classroom

This is the first year of middle school for Jewel, which means multiple teachers with varying styles and experience. At a status meeting about what’s working and not working several weeks into it, these are the key points, tips and tricks I will give teachers to shed light on what it’s like for Jewel in the classroom. I’ll let you know how it goes over next week.

TIPS FOR MIDDLE-SCHOOL TEACHERS

My autistic daughter’s brain is wired differently; she’s trying to plug her XBox brain into a Playstation world. Her IEP and support systems are in place to guide you to ensure she gets the free and appropriate education in the least restrictive environment to which she is legally entitled. She needs predictability and well-structured classrooms in which rules are consistent, clear and concise.

Middle school is difficult for every child. This isn’t the time to make an example of my daughter or get into a battle of wills. She is already at a disadvantage socially because she doesn’t instinctively know the unwritten social rules that neurotypical people do. You must understand her motivations are not disrespect or defiance. They are fear of failure and not being seen as smart because she doesn’t know what others know naturally. She’s been laughed at too many times and carries that hurt.

In the classroom, she thinks she is following and enforcing “the rules” as she sees them. When her classmates listen to you go back and forth with her, or worse, kick her out of class, you’ve caused damage to her beyond those classroom walls. Please pause, restate your instructions in simple language, encourage her and place demands on hold. Making more or repeated demands when she has not processed the first set is the best way to ensure escalation and a meltdown. A meltdown is not a temper tantrum: a tantrum is when someone is trying to get what he/she wants, a meltdown is when there is too much sensory information to process.

Here are eight tips to remember:

  1. Transition warnings (and a routine) are important.

My daughter has problems with initiation. If you say, “Get to work,” neurotypical kids know that means take out their workbooks, look up the pages, remember what was just taught, etc. It takes her longer to go through these steps and come up with a game plan; it’s called sensory processing delay. She many times needs a specific prompt. “Here are the problems we are working on. Remember you are looking for the ratios.” Get her started, and she will finish. Tolerance is the key part of this.

  1. She is literal.

If you say, “Don’t interrupt” when another student is presenting a project, she thinks she is not allowed to react at all. The squirming and “not paying attention” you see outwardly is her trying to ignore the student because she wants to react so badly and believes she has been told she can’t. Don’t assume disrespect; dig deeper with her. Figurative language can send her mind off course; your reference to something being “a piece of cake” puts her at the bakery counter eyeing the selections. It takes some time to get her back, which means she probably missed part of the lesson.

  1. She needs extra time. 

Use simple phrasings and short sentences. Scaffold instructions, giving just a couple at a time and then building on that. It might appear to you she is staring off into space or not following directions; most of the time, she is just processing what is expected of her in the quickest way she can. Simple prompts help; harsh words and scolding do not. Telling her to do something and then counting down has no value; it makes her unable to process the instructions because she is focusing on the descending numbers. Trying to hurry her will only slow her down.

  1. It’s all about visual learning.

She needs to see something to interpret it, not just hear it. Posted schedules, assignments, etc. are always helpful.  If you show her what you regard as a well-done assignment or project looks like, she will know better what she should shoot for. Any time you can share notes, graphics and samples that she can see, it helps her. Also, you might notice she takes notes sometimes that are undecipherable to you or I, but she understands them.

  1. Any help with social interactions would be appreciated.

You can do at school what we can’t do at home: encourage my daughter to interact with her peers, and her peers to interact with her, in positive manners. Sit her next to tolerant, open-hearted classmates who will help her and whom she can look up to and model her behavior.

  1. Sensory issues are a key distraction.

Did you know the fluorescent lights in your classrooms pulse? She does; the whole room pulses with them in her head. The hum of the black cable box she also finds impossible to tune out. Her classmates’ pen-clickings feel as if someone is actually snapping something inside her ear. Certain textures, smells, the sight of a green witch…she will physically recoil with disgust. Please be mindful of this.

  1. Don’t question her effort.

She is motivated to do well in school by her desire to go to college and start her own business. If she isn’t doing what’s expected, look for the cause. Is it fear of failure? Or is it she doesn’t know what “show your work” means, because she can look at a problem and instantly figure it out, no “work” necessary? She says she can’t “show how her brain does that.” Support and encourage, don’t doubt her abilities.

  1. The unspoken rule of deference to teachers/adults is lost on her.

Trust me, I’ve put my ego on hold since she could talk. It is something we work on daily and she hasn’t mastered; don’t take it personally. She’s a work in progress.

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.