Please ‘include’ the following

There’s a switch that was flipped with Jewel this year, her first in middle school. She’s more accepting of change, more engaged and much more willing to go with the flow. In looking back at all of what sparked this evolution, there’s one thing in particular that’s extraordinary in its ordinariness.

Jewel is particularly obsessed with one class. She’s named it like a team, and identifies with it so much so that when she does something, it’s often because “hey, I’m a 6-7er.” Why this class? It’s led by a gifted teacher who cares about what she teaches and does so in an interesting manner, and Jewel loves the subject matter. But there’s something else. In the first week or so, a boy in this class said to the teacher offhandedly: “You mess with one of us, you mess with all of us.”

Jewel has never been part of a team, never had a “squad” per se, and this appears to have had a profound effect on her. For the first time, she felt as if she belonged, was part of a group, and that someone, actually lots of someones, had her back. She was included. A moment in time, a remark that boy and everyone else probably have long forgotten, meant everything to her.

So yes, there’s a maturity and a lot of other positives, but first and foremost is her believing she’s part of a whole, not the different one. Because of her past needed supports, aides, modifications and accommodations, she’d felt separate from the group. She rarely does now, and has learned to advocate for herself when she does feel as if a teacher is trying to “separate her out.”

There’s other ways she’s getting this message. A school administrator often reaches out to Jewel with a fist bump and advice. This goes a long way in what I call “singling her out by including her.” He doesn’t treat her any differently, so she doesn’t feel different. And he sets the tone for her peers to not treat her any differently.

This inclusion issue looms large as we face another summer of uncertainty. Because structure and routine are so important to helping autistic kids build skills toward being more self-reliant, what is seen as “freedom” to others can be a special kind of hell for us. We lose the structured environment of school and Jewel’s everyday social interactions with her peers.

And yes, I and other parents of autistic kids can “just sign them up” for camps and sports and recreational programs and the kids will get that structure and interactions, right? If only it were that simple.

Most of my attempts to find programs and activities to make Jewel feel included (including a city-run gymnastics program and a summer theater workshop) did not go well, suffice it to say. The vast majority of such “mainstream” sports and other programs don’t have the support systems in place that schools provide. It’s a catch-22 that all parents of autistic and other nonneurotypical kids face: the kids need to build social skills, but the places and activities that would help them do so aren’t equipped to do so.

Here’s what I mean. Part and parcel of autism, to varying degrees, are an inability to process multistep directions, sensory sensitivities, issues with adapting to change in routine, and especially troubles with “reading” people and responding to nonverbal cues. Those guiding these kids, whether it be parents, teachers, coaches, program directors or others, need to slow it down, break it down, and allow the kids to catch up, while placing demands on hold. The key part of this is that if that “front-loading” and guidance is not given, there’s a great risk of Jewel and others becoming so frustrated and overloaded that a meltdown occurs.

So let’s say Jewel is on a soccer team for the first time and is at the first practice. The coach starts going through what the drills will be, what’s expected, when the first game is, who’s going to be on what practice team, when there won’t be practice, what the parents need to bring, etc.

Jewel, on the other hand, came into this first meeting worried about one thing only: what about the clothes? In her head, as the coach talks, it’s: “Will I have to wear shorts or can I wear leggings to practice? Will the uniforms be itchy and not stylish? What color will they be? I won’t wear them if they are the wrong color, so you need to tell me NOW.” When the coach doesn’t address these concerns, Jewel doesn’t hear anything else. And she is lost when the coach then says, “Go line up.” And she’s embarrassed when all the other team members look at her when she doesn’t line up. And it escalates, because the coach has all these kids to direct and can’t figure out why she isn’t doing what she was told. And there you have a meltdown.

At schools, there are supports to help Jewel succeed in a mainstream setting and help her learn to advocate for herself, learn these skills and become self-reliant. In the mainstream world, those supports are negligible. So autistic kids miss out on the very social opportunities that would help them most.

One solution would be private companies and camps (even, a mom can dream, cities and communities!), offering “blended” sports and recreation programs in which nonneurotypical and neurotypical kids can enroll. There would be extra supports and knowledgeable staff, and tolerance and inclusion is built into the business model. This is another example of “singling out by including” them.

Another solution is to make existing public and private programs more flexible and accommodating. For example, I found a surf school last summer that I was able to front load about Jewel’s autism and what to expect, and it enthusiastically said, “No problem,” and followed through. It’s a win-win, because we’ll be going back this summer and Jewel will get to do something she really enjoys with her peers … she will be included. And if any shark messes with one of them, it will mess with all of them. Wait, what? Hm, looks as if I’ve got to do some more front-loading, this time on the shark situation.

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Busy as a tween bee

Jewel’s middle school had its annual Open House the other night. You know the drill … you get to tour the classrooms the teachers have painstakingly gussied up, check out the projects they are working on and get a brief, tiny glimpse into how your kids spend several hours of their day.

It’s loud (SO loud) and confusing. Jewel’s school is built on this odd, honeycomb- type sort-of circle, with the “mall”/cafeteria/general assembly area serving as the center and hallways and classrooms spreading out from there. Sometimes kids have to go around the outside to get to class, and then they throw in some portable classrooms outside this circle to add to the disorderly jumble.

It amazes me how well Jewel has adjusted to this, because it gives me a headache every time I’m there. She was happy to play tour guide and show off how many teachers and rooms she knows beyond the classes she has. She’s always been great at directions and maps, and interacting with adults more than he peers, so she was in her element.

I tell Jewel that I did the middle school years once in my life and I refuse to do it all again through her. Sixth to eighth grade is something to be survived, an onslaught of slings and arrows and insecurities and “populars” and cliques and raging hormones. The kids are entirely focused on themselves and their place in the school and the world … it’s Trumpian extreme narcissism playing out among the 11- to 13-year-old set.

But here’s the thing: Jewel is LOVING EVERY MINUTE OF IT. My little contrarian, who has never met a statement of mine without introducing it to a counterpoint, is now seemingly the only kid having fun, fun, fun in almost every moment of middle school. She is giddy on Sunday nights, looking forward to the school week. When I pick her up after school, she talks nonstop about her day in excruciating detail, going class by class by class to tell me who did what to who and when and how (and sometimes why if she slows down enough to consider what others might be feeling). So she’s taking me along, whether I want her to or not.

So what’s the problem, right? She’s happy, she’s engaged in her surroundings, she’s part of something. I’m ecstatic for all these things, realizing the hard work she has had to put in to develop her social skills because of her autism.

However (you knew that was coming), I can’t help but worry because she is obsessing. She has great difficulty in what I call “turning the recorder off”: once she starts in on the retelling of her day, she has to go all through her story in her way, even if some other more pressing matters need to be addressed. If I stop her and say, “Yes, but remember, you called me from school midday and you had run out of class and what happened with that?” Jewel will just continue with her story, and I have to stop her again to snap her out of it, get her to focus and stop playing the “recorder.”

As she gets more into her environment, she has become convinced her classes are the most drama filled, the most spectacular and her everyday dealings are the most important events going on. Yes, some of this is the middle school narcissism, but neurotypical kids learn to at least fake interest in what other people are doing or their surroundings, or go quiet and think all about themselves in their head. Jewel has yet to learn this. A trip to the grocery store becomes a recitation of the school hallway Doritos incident, or me looking at a map on the computer becomes a play-by-play account of looking for fault lines in science class, told in real time.

I also can’t help but worry that she will tire of the act or grow frustrated that she must put so much more time and effort into being social, which others take for granted because what they are doing comes naturally. I already hear Jewel’s envy when she compares how her peers and her teachers respond to her versus others. She wants to make her autism “disappear,” but I tell her that it is what makes her her, and she should embrace it instead of fight against it.

There’s a cheesy line from the movie “What a Girl Wants” with Amanda Bynes (Colin Firth is in the movie, I had to watch it) that I repeat at least once a week to Jewel: “Why are you trying to fit in when you were born to stand out?” She rolls her eyes at me, sighs and says I don’t understand her or middle-schoolers and that she has to blend in to survive.

Apparently this blending in even extends to mechanical pencils. After Jewel told me she was running low in her school supplies, I bought more on Amazon. It turns out I bought the “clear point elite” and not just plain “clear point.” This simply won’t do for Jewel: the lead size, color and all that is good, but the design is infinitesimally different than the one “everyone else has.” Is this the attention to detail of her autism or the desire to blend in that every middle schooler seems to have? Either way, it is annoying.

But I do remember that feeling all too well, of trying to make it through the school day without a misstep, doing everything in my power to not draw attention to myself. I also remember failing miserably at it, because I was trying to be everyone else instead of myself. Jewel needs to learn that on her own.

However, as she learns that lesson, she is also trying to suppress something that is part of her. She is changing and growing up. She dresses differently, fewer pinks and purples and more muted colors, and lots and lots of jeans. She is using makeup, and is much better at it at age 12 than I am in my 50s. Many days she’s taking a straight iron to her curly hair and smoothing all the kinks out.

It gets me to thinking it would be awesome if she could take a straight iron to her brain and smooth out the way its wiring works. But there’s no easy fix for that. When the day comes that she embraces her brain, kinks and all, she will be truly happy. And I know that day is coming.

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.

 

A friend, indeed

When Jewel went to kindergarten, I was especially worried about the social aspects and her making friends, much more so than the academics. She was coming from a small “blended” preschool program in which six of the 12 kids were autistic like her, and going into a class of 30-plus general ed students with support.

I was overjoyed when she came home that first day of kindergarten talking nonstop about her new friend “Kendra” and how well they got along. She said they “talked and talked,” about their homes and families and what they liked to do. Over the next weeks I got daily updates from Jewel about her conversations with Kendra and how they were bonding.

At a status conference with the kindergarten teacher more than a month into the school year, I mentioned how thrilled I was that Jewel had found a friend such as Kendra. The teacher looked at me a little quizzically and said, “Oh, that’s nice. You know Kendra is selective mute, right? So I’m glad Jewel can feel the bond despite the fact Kendra doesn’t talk.”

No, I didn’t know Kendra didn’t talk, because Jewel had been repeating their “conversations” to me verbatim. It was then I realized Jewel had found the perfect friend on the very first day of kindergarten … someone who would let her ongoing monologues become dialogues, with Jewel providing the entire script. Always hyperverbal, Jewel found a friend who would let her be her special self in that new environment. It was fascinating, once I got over my shock at the altered reality my then-5-year-old had been presenting to me.

There have been playdates and sleepovers for Jewel with girls over the years, and giggles and shopping trips and trips to the science center and amusement parks. They take place at our house or with me planning and in attendance. There have been very few party invitations, but I am grateful for the ones Jewel has received.

It takes a special kid with an open heart to take the time to get to know Jewel, and see beyond her emotional regulation issues and fast speech, which makes her difficult to understand, especially when she is excited.

This brings me to “Cassie.” On the face of it, Cassie and Jewel don’t have that much in common. Cassie plays soccer, doesn’t have a ton of interest in fashion as Jewel does, and is much more up to date when it comes to choices in music and apps and movies.

But dear Cassie has been a friend, a true friend, to Jewel for a couple of years now, and I couldn’t be more grateful that their paths crossed and they are in each other’s lives. I never take for granted watching them together and overhearing them fall into easy, flowing conversation. Cassie deserves a ton of praise for being such an open-hearted soul, and her parents have my deepest gratitude for raising such a special girl.

Some people actually have the extreme view that autistics can’t make friends. That is ludicrous. Yes, there are times Jewel doesn’t want to be social and wants to regroup on her own. And I would say many of her acquaintances don’t know how to relate to her completely. However, she has extensive social skills training through school and at-home therapies, something neurotypical kids learn naturally but don’t “study” as she has had to. She has language and knowledge of social interactions that works to her advantage, if she works hard at it.

A study this year by the British Psychology Society suggests autistic girls are more socially motivated and have more intimate friendships than autistic boys; researchers say this distinction might contribute to the difficulties in detecting autism in girls in general. There is a huge disparity in diagnosis between girls and boys: the Centers for Disease Control’s most recent statistics estimate autism spectrum disorder is about 4.5 times more common among boys (1 in 42) than among girls (1 in 189) in the U.S.

The British study does draw one distinction between girls such as Jewel and her neurotypical peers: it suggests autistic girls are not as good as girls without autism at recognizing conflict in their friendships.

Jewel regularly reads into and misinterprets meaning when it comes to her interactions with acquaintances, especially new ones. However, with time and attention and nurturing, a really good understanding and heartfelt affection has grown between Jewel and Cassie. As the friendship has progressed, Cassie has gotten more comfortable in letting Jewel know what she needs and wants as they go about their activities, and Jewel has learned to be more flexible.

Jewel says of Cassie: “She’s just really chill, and I like that.” This might be my favorite part of this friendship: Jewel needs to learn what’s a big deal and what’s not such a big deal. To be around Cassie’s calm, happy and positive nature, and talk out such things with her, helps Jewel with much needed perspective, much more than anything I can say or therapies can teach.

Jewel also sees Cassie taking things in stride. For example, the three of us were about 10 minutes into exploring a museum it took 45 minutes to drive to, when Jewel said she didn’t feel well and wanted to go home. We had planned to take the Metro Rail to a holiday event in downtown afterward, and Cassie had been excited about the whole day of activities and new experiences. However,  she just shrugged it off when we called an abrupt end to the plans and headed home. How chill is that? In a world full of tween drama, Cassie’s simple calm is just what Jewel needs.

When you find someone genuinely kind and compassionate in your life, hold on to them and appreciate them. And if you are the genuinely kind and compassionate one, the one who sees past differences and struggles in others and just simply cares, know that you are deeply admired and not taken for granted. You give me hope for the future.

‘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.