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.


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.

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.