Thursday, February 15, 2018

How Not to Make a Kids' Movie

The new Peter Rabbit movie opened recently and has drawn a lot of criticism for its depiction of a group of rabbits attacking their nemesis with his known allergen. Using a slingshot, the rabbits shoot a blackberry into Tom McGregor's mouth causing him to have a severe allergic reaction and forcing him to his use his epipen. This is not actually the first time Sony Pictures has depicted severe food allergy reactions in kids' movies. Similarly harrowing scenes occur in Smurfs 2 and Cloudy with a Chance of Meatballs.

Just a week or so before, in response to a news story out of Pennsylvania in which three teenagers were charged with a crime after one of them spread pineapple juice on her hand and then tried to touch a severely allergic classmate, I pointed out that this kind of thing happens a lot more than people think and that I don't expect things to change until there is some kind of shift in the way we think about allergies. Severe food allergies continue to be used as a source of laughs. If it's funny to portray people who swell up and struggle to breathe after exposure to an allergen, is it also funny to depict a child getting knocked out of a wheelchair or dying from a disease? People argue that we should all just loosen up a bit, but really?

Allergy-friendly homemade pizzas!
Every time anaphylaxis becomes the butt of a joke or a twist in the story line, and every time it's depicted unrealistically, it becomes that much harder to overcome the various stigmas and misconceptions still associated with food allergies. And, as a result, the risk to our kids gets graver.

When Pink was in second grade, another kid on the bus shoved a peanut butter and jelly sandwich in her face. Several other peers have joked about doing the same thing. I get it; most kids have no idea of the kind of injury they can cause by exposing a kid with allergies to something they're severely allergic to, but can you imagine never knowing whether or not someone will threaten to try to kill you today?

Kids with food allergies are often described as weaklings or snowflakes. Their parents are accused of being overprotective and enabling. I can't help but think that at least part of the reason for these risky behaviors and negative attitudes toward kids with allergies is the fact that allergies continue to be a joke.

Another of the hundreds of lunches Ren and I have prepared over the years.
Children like Pink are fierce. They encounter serious risk on a daily basis and take it in stride. They learn earlier than most how to advocate for themselves (by reading labels and making sure they have their epipens handy, for example); they quickly figure out how to deal with being excluded or treated differently from their peers; and they become pretty adept at finding alternatives and workarounds. Plus, learning these tough lessons over and over again teaches them empathy and compassion that will serve them well for life.

So, how about this? What if we lived in a world that accommodated kids with allergies like we accommodate all other kinds of difference? What if schools spent as much time on allergy education and awareness as they do about other kinds of disabilities? Pink has had classmates tell her that they didn't invite her to their party because of her allergies. Others have admitted that they haven't had her over because their parents are worried about possible exposure. I find it hard to believe that she would experience these kinds of things if allergies were more widely accepted and understood.

As my bento post earlier this week illustrates, most parents and kids living with allergies work hard to live a normal life. We figure out how to prepare safe alternatives of our kids favorite foods. Though, we carry an epipen wherever we go, we also seek to make sure that our children live not in fear but in courage. Day after day, we do the work.

After much pressure, Sony Entertainment apologized (way too late) for the tasteless scene in Peter Rabbit, but wouldn't it be great it Sony and others who have larger platforms than our kids (who often fight this fight alone) followed our kids examples and showed a little empathy and compassion without having to be coerced into it?

Wednesday, February 14, 2018

Order in the Chaos

During Stow's final autism evaluation last month, the doctor told me that after seeing so many families living with autism, she's come to the conclusion that parenting with autism is just like regular parenting, only magnified by about 1000. I don't know if this is true; I can only guess what it's like to parent in a family not impacted by ASD. What I do know is that life continues to be INTENSE.

Some things are actually a little better, though. The biggest improvement? After working with therapists for what feels like an eternity, we have finally managed to help Stow get the hitting under control. This doesn't mean that various forms of bodily contact aren't happening--Stow has adopted the practice of aggressive hugging when he's frustrated. Aggressive hugging consists of using his face and shoulders to push me backwards like a sumo wrestler while he simultaneously shoves his hands into my pockets and/or yanks at my shirt.  It's still not ideal, but it sure beats the months and months  of getting pummeled. Change takes time.
Autism isn't the only ongoing challenge at our house. It has been 7 months since Ren's last surgery, but at this point, I can't tell if we are post-op or pre-op. The back and leg pain have returned, and the shoulder pain is slowly but surely ratcheting up. In practice, that means there are days when Ren can't do much of anything, when he looks a lot like this:

Man down.
Honestly, life's not easy. It can be hard to cope with all the chaos. And, sometimes I just need to be able to control what I can control, even if it's just a little thing.

To that end, I bought these for the kids in hopes of making it easier to prep and pack three lunches EVERY. SINGLE. DAY.

Lunch boxes lined up and ready to be filled.
Thanks to these fancy insulated lunch boxes, we can now send the kids with hot food that will still be hot(tish) at lunch time. Suddenly, the tedium of the morning feels slightly less tedious. When my alarm goes off at 5 a.m. after I've been up late catching up on work or awakened in the night by Ren's cries of pain, thinking about what new thing we can put in the kids' lunches helps me face the day. I know it sounds strange, but there's something soothing in knowing that I have control over this one thing.

When I first posted pictures of the lunches on FB, friends were amazed by how fancy they seemed. To be honest, most of it is leftover dinner. Soon I started posting descriptions of all the things that were going wrong while we made these lunches--from kids not eating, to meltdowns, to insane conversations, to Ren being laid low by pain. Maybe everyone is tired of hearing about and seeing the lunches, but for now, they are order in my chaos...

Here's a photo retrospective of recent lunches. Hope you enjoy it!

Fried rice with miso soup
Gyudon (beef on rice) with egg soup
Pork cutlet with egg soup.
Ginger chicken and burdock root
Ginger pork
Beef teriyaki
Potato and bacon soup
Rolled egg with chicken nuggets

Kani-tama don

Wednesday, February 7, 2018

Sports Star

When Sky was four and five, we signed him up to try various sports. Over the course of a year or two, he did swimming, basketball, soccer, gymnastics, and T-ball. Given his status as a not-yet-diagnosed kid on the spectrum, I guess it isn't surprising that most of these endeavors were horrifying failures. Week after week, he would run into people and walls; he would be oblivious to swinging bats and rackets, hurtling balls and bodies. And, of course, he could have cared less about whatever any given coach was saying. Looking back, I'm amazed we kept trying. It was a traumatic time for all of us.

Of course, now we know about the autism, and now we know what his triggers are, but that year of watching--over and over, week after week--as he barely avoided causing or receiving grievous bodily injury made it hard for us to find the courage needed to enroll the younger two children in any kind of sports activities at all.

So, when Stow said he wanted try basketball, I hesitated. I wasn't sure we could go through that again. When he insisted, I relented. At least this time, we'd know what to expect.

Go team!
The universe has a way of really messing with me, though, because the first day of basketball practice coincided with Stow's final 3-hour evaluation at the autism and developmental disabilities center at the research university not far from our house. The final evaluation not only confirmed that he is on the spectrum but also gave us excruciating details about the ways this impacts him. My guess is that anyone who knows us or who reads this blog isn't surprised to learn Stow is on the spectrum. After all, we'd already been told that by a pediatric neurologist. But, even as the neurologist was giving Stow the diagnosis, he admitted that autism wasn't his area of specialization. He wasn't able to answer any of the questions that had sent us to him to begin with.

Instead, the diagnosis from the neurologist became the impetus we needed to pursue a thorough evaluation. Before that, I worried that I was just imagining everything and that the people at the autism center would dismiss our concerns. The evaluation took close to a year to complete; it was a year during which Stow was seen by a wide range of specialists who were amazingly adept at putting their fingers on all of the things I'd seen but couldn't quite explain. Maybe it seems strange to make Stow go through all those tests when we already had a diagnosis in hand, but deep down I hoped that if these people who see kids with autism day after day could help us understand Stow, it would be easier for us to help him.

Either way, I didn't expect the confirmation of the diagnosis to hit me so hard. I went into Stow's first basketball practice feeling pretty raw with an odd combination of emotions. I was sad that no matter how hard we tried, we couldn't help Stow avoid being on the spectrum (which I know sounds weird). I felt stupid that I didn't trust my maternal instinct from the start. And, I felt scared that Stow would struggle in all the ways Sky has struggled. Honestly, the last thing I wanted to do was see how Stow handled a roomful of hurtling bodies and bouncing basketballs.

Then the most amazing thing happened. Practice wasn't a catastrophe. Stow tried hard to follow directions and to do what the coaches asked of him. He didn't crash into anyone or anything. He generally stayed where he was supposed to be. I mean, it wasn't perfect--he was unnecessarily goofy (a coping mechanism), he had a hard time grasping most of what the coaches were saying, and the ways in which he is different from his peers was really obvious. Even so, he tried hard and showed a pretty amazing ability to compensate for the "holes" caused by his autism.

At their game on Saturday, Stow guarded his opponent on offense and defense. When a teammate finally passed the ball to him, he didn't come close to catching it. But, when the score was tied going into the final stretch of the game, his coach put him in and told him to guard the best player on the other team. "Follow him around and don't let him get the ball," his coach told him. Stow is nothing if not literal, so he did exactly what the coach said. He stuck to his guy like glue, and that kid didn't touch the ball for the rest of the game.

Watching your kid play a sport he doesn't necessarily grasp and in which he is not particularly talented can be hard. Stow will most likely never be a sports star. He may not even make the team when he's older. Still, I'm grateful for those two years with Sky all those years ago (and all of the years in between) because they helped me learn how to see. Autism parenting has taught me find the positive in every developmental phase we go through, and it is teaching me to reign in my outrageous expectations and to be more patient with myself and (more importantly) with my kids.

If that's not winning, I don't know what is.