Dear Parents of Kids who Didn't Come to My Kid's Birthday Party

Dear Parents of Kids who Didn't Come to My Kid's Birthday Party,

I've got a problem. It's been bugging me for awhile (for the past 9 or so years since I started hosting the occasional kids birthday party), and I just can't seem to solve it. So, I thought maybe it would help to create a guide to how to RSVP to an invitation.

Before we go any further, did you RSVP that your kid couldn't make it? Yes?  In that case, you don't need to read beyond this paragraph. We appreciate that you RSVP-ed in a timely fashion. It helped with planning to know you wouldn't be able to come. We were sorry to miss you but know people are busy.

What? What's that you say? You forgot to RSVP? I'd like to tell you that's ok. I really would. But, see, your kid told my kid he was coming to the party, and without your RSVP, there is no way for me to know if that's true or not. Sure, I can tell my kid to remind your kid to remind you to RSVP, but really, do you think that's going to happen? If you're someone who forgets to RSVP, somehow I imagine your kid might also have a hard time keeping on top of that kind of thing. And, even if your kid didn't tell my kid they were coming, my kid still believes everyone is coming unless the RSVP tells him otherwise. So, please, just send me a text or an email. It's fine if you can't come. Hell, it's fine if your kid hates my kid. What's not fine is not RSVP-ing. How are we supposed to plan or manage our kid's anticipation if we don't have any idea how many people are coming?

You RSVP-ed "yes" but then found out you couldn't come? That's no big deal. Schedules change all the time. Just let us know; we can adjust. But, you know what's not easy to change? It's not easy to change the fact that my kid's feelings got hurt when you said your kid was coming and she didn't actually come. Sure, I can make excuses about the weather or about people being busy or about people not being good with email, but she saw your kid at her friend's party, so she doesn't buy it. Instead, she believes it's because your kid doesn't like her. And, maybe your kid DOESN'T like her. It happens. Most of us have people we don't like. But, it seems extreme to say yes to an elementary school birthday party invite and then no-show just because your kid doesn't like mine. What? Your kid doesn't hate my kid? Then, why in the world would you break her heart like that? That doesn't make any sense at all!

Look, here's how this works. Someone plans a party, and as part of the planning, they decide who they want to invite and send an invitation to that person. The invitation has a lot of useful information like the date and time of the party and the location. It also has contact information so you can let the person throwing the party know whether or not you can come. If you don't quite know your schedule, you can wait a bit to respond, but really, you should let people know at least a week or so before the party so they can plan. It's okay if you can't come, it happens all the time. Just say so when you RSVP. And, if you RSVP "yes" but then learn you can't come, it is MUCH better to let the host know things have changed. I mean, they will notice that you're not there anyway, so what does it hurt to give them the head's up?

And, of course, if all of this is happening in the context of a child's birthday party, please think about how you would like to have your own child treated (honestly, I can't believe I even have to write that last sentence). Kids LOVE their birthday parties. They talk about who they will and won't invite for months before the party. Sometimes they tell each other these things at school. Sometimes they can be pretty childish about the whole thing. But, you? You're not a child; you're an adult. You have access to a phone, a computer, and a car. If your kid doesn't RSVP or if your kid says they're going to come and then doesn't, it's on you, at least until they're old enough to text/email and/or to drive themselves to the party.

I know you probably think I am overreacting here, but we have thrown many parties over the last 9 years, and elementary school parents are by far the worst at RSVP-ing. I've sent Evites, emails, paper invites, and texts, and I routinely only receive RSVPs from about 50% of the people we invite. And, every party (Every. Single. Party.) we have at least one, and sometimes more than one kid who says they are coming and then doesn't come (and doesn't let us know they're not coming). Have you tried to explain to your kid why only 1 of the 4 people (or 2 of the 6) people who said they were coming didn't come? Because, no matter what you say, all they believe is that the other kids don't like them. And, then, when the go back to school the Monday after the party, they see those kids and they worry about whether they're friends anymore. Even when my kids tell me they don't care about this, they are lying--usually to try to make me feel better since they know how much time and energy we put into getting ready for the party (which is really, really sweet but also heartbreaking in its own way).

So, I don't know. You guys tell me what I'm missing here because in the world I live in, it's proper etiquette to RSVP and standing up a child on his/her birthday is just a shitty thing to do.

Sincerely,

MOE

Color Blind

The start of the school year means multiple emails and meetings with various folks involved in educating our kids. For Sky, who started seventh grade this year, the exchanges I've had with his teacher center around ways to lessen his anxiety related to assignments or unclear instructions. For Stow, my time has been spent working with his first-grade IEP team to incorporate new strategies related to recently diagnosed language delays. These are the kinds of interventions I expect to have to make as a special needs mom.

But, this past week, I found myself writing a whole different kind of email to Pink's school principal in response to an incident on the school bus.

Before she even made it into the door, she was telling me what happened. "A mean boy on the bus said Jay and I were boyfriend and girlfriend," she fumed.

I was half-listening in that way I do when I am trying to do too many things at once and said something to her about just focusing on her friendship with Jay and not worrying much about the negativity of others. Then she said something that made me stop what I was doing and ask her to repeat it because I was sure I'd misheard.

"He said, 'I'm going to put a Made in China sticker on you,' and then he pointed at me. And, he said he'd put a Made in Africa sticker on Jay. I tried to tell him he was wrong because I wasn't made in China; I was sort of made in Japan, but even that's wrong. He wouldn't listen to me, though! He told me I didn't know anything! He only believed it when Jay told him he was dumb for not knowing the difference between Japan and China."

What do you say to your child when a thousand thoughts rush through your head at once? I wasn't sure where to start, so I started with the perhaps dumbest question possible.

"Is Jay black?" I asked.

Pink looked at me funny and said in an exasperated tone,  "No, Mom. He's brown."

We talk more about skin color at our house than other people might because it's a question that comes up, usually in first grade or so, when the kids become aware that they don't quite look like their peers. The conversation usually starts with the same question: "Am I white?" and is usually followed by the equally vexing, "Then what color AM I?"

This is not a simple conversation to have. Kids are not "color blind" and we shouldn't strive to raise children who are. Non-white kids see and feel the ways in which they are different and experience that difference sometimes quite painfully. If we tell them to be blind to these differences, we erase their experiences. Instead, what I've tried to teach my kids is that the color of a person's skin doesn't tell us a thing about their character, their talents, their flaws, their pasts, or their futures, but it can tell us a lot about how they experience the world around them. When Tamir Rice was shot, Sky was about the same age as he was, and it hit me in ways I hadn't understood before that parenting a black son is different than parenting an Asian son, so Sky, Pink, and I have talked a lot about how to recognize overt and covert racism and how to stand up for their peers.

I struggled to explain to Pink why what the kid on the bus said was so wrong. Sure, both of us bristled at the complete lack of awareness that Japan and China are nowhere near the same country. And, sure I was incredibly annoyed to see that "mansplaining" happens even in fourth grade. But, mostly I wanted her to know that everything that happened in that interaction was wrong and was not her fault. Pink was silenced and Jay was provoked almost to the point violent resistance. And, this was done to them solely because they look different than all the white people around them.

Pink didn't want to spend much time talking about any of this. Once she'd told me what happened on the bus she was ready to move to other things. But, I wasn't. It's hard to know how often things like this happen to my kids. I'm sure it happens much more than they tell me. I imagine something like this is why Stow to tells me that he hates his Japanese face but loves his American body. Maybe it explains why he wishes he looked like the neighbor boys and had a daddy that looked like theirs. It's hard to parent against the effects of ingrained stereotypes and ways of thinking. And, it's hard to help educators and others who have never not benefited from their white privilege to understand that it exists.

At first, I wasn't going to follow up with Pink's principal. I figured there was little I could say that would push him to think beyond a single disciplinary action for the mean boy on the bus. But, then I saw how worried Pink was about school, so I asked her if she wanted me to follow up with him. She did, so I did. Here is what I wrote:

This evening Pink told me about an incident on the bus that I wanted to relay to you. Apparently, she is assigned to sit next to Jay on the bus as well as at school, so the two of them have become friends. Today on the bus, a peer named D started to tease them about liking each other. This kind of thing happens, so when Pink told me about it, I told her just to ignore it. Later, though, she told me that D also said, "I'm going to put a 'Made in China' sticker on you (pointing at Pink) and a 'Made in Africa' sticker on you (pointing at Jay)." Pink was most upset by the fact that D didn't know the difference between Japan and China and that he ignored her when she tried to tell him this.

As you know non-white students like Pink and Jay are few and far between in the R schools, and I think this incident highlights the need for education in diversity and the often subtle but strong impact that racism (or at least the notion that the white majority prevails) can have on the thinking of kids even as young as 9 and 10 years old. I understand that it is hard for students from a small town in the rural Midwest to understand that there is a great big and diverse world out beyond the boundaries of their town, their state, and their country, but it is important that we start working to help them grasp this reality--if not by ensuring that it's reflected in the population of children and teachers they encounter from day to day, then at least in purposeful education about this.

On her one of her papers today, I saw that Pink had written, "I hate school." When I asked her why, she struggled to explain, but I imagine the fear and discomfort she felt at being made fun of because of the physical features she was born with (and that are an important part of her identity) had a lot to do with the development of such a sentiment. Implicit bias in any form can be detrimental to the person who is subject to it, but this is even more true for children like Pink who are just now starting to figure out who they are and who they want to be.

I'm not sure what the answer is. I fear that disciplinary action directed at D will only lead to more trouble for Pink and her friend, but I wanted to make sure that you were aware of this incident in the hopes that we can work harder to prepare all students to be open-minded and accepting of difference.

********

Postscript:

The principal's response was entirely predictable. He assured me that he wanted all students to feel welcome and safe and that he did his best to make sure "situations like this stop completely." Then he met with all involved and meted out what he determined to be the appropriate punishment. I mean, I appreciate the effort, I really do. But, this is an issue that requires all of us to regularly interrogate the ways that we respond intentionally and unintentionally to people who aren't like us and to think about how we can best make sure our kids aren't inheriting biases we sometimes don't even realize we have. I can't imagine a lost recess or in-school suspension achieving that.

Dear Verizon, I Didn't Think It Was Possible To Be As Bad As Comcast

I just wanted to let the universe know that Ren finally got a cell phone--not that I think he will use it all that much. He famously avoids texting and shies completely from social media, so I don't anticipate major waves of change here. Still, it's good that I won't have to worry about him when goes out of town on his own or when he's at the doctor with one of the kids or we are trying to execute a rendezvous.

The additional cell phone may even help us avoid fiascos like the 2014 Chicago weekend trip when we lost each other for nearly an hour despite the fact we were only 100 feet away from one another. And who knows, maybe we WILL communicate more so that we don't both make trips to the grocery store only to awkwardly run into each other in the vegetable aisle. Yesterday, for example, he called me from the Red Box kiosk and then Face Timed with me when I was trying to eat lunch. That's two times more than I usually talk to him during any given work day.

This particular lifestyle change happened nearly a month later than planned due to my misguided attempt to change cell phone carriers. I am too tired to do justice to the rant I'd like to write about Verizon, but it was HORRIBLE. First, they sent us the wrong phone, and even though I realized the mistake had happened almost immediately and called Verizon right away (well before the phone shipped), I was told my only option was to wait for the wrong phone to arrive and then return it to the Verizon store. So, I waited dutifully. But, when I went to the Verizon store with my unopened phone, an associate there told me the phone couldn't be returned in person. She also told me the phone we wanted was backordered for three weeks but that it didn't matter since we couldn't get one anyway--what seeing as how we already had a Verizon phone and all. That less-than-helpful associate also told me my other phone was set up and ready to go, so I went an entire day using it without realizing that no one could call me on it (something I learned when I came home from work to find Sky in a complete panic because he thought I was ignoring his calls).

These two problems led me to call Verizon again. And again, and again, and again--in all, I talked with 6 different people and spent more than 9 hours over the course of one week trying to work out these two messes. On my fifth phone call, I learned that the person who signed me up had actually given me incorrect information regarding the pricing of my plan (something the first four phone associates AND the store associate failed to mention), and that I would not indeed get the promised discount. Since the discount was the whole reason I decided to switch in the first place, I tried pushing the issue. Whenever I expressed my frustration to the associate, however, he simply said, "I'm sorry to hear you received wrong information. I want to make sure you have correct information going forward." Apparently Verizon has been working hard to train employees in empathetic listening.  Every person I talked to was indeed very sympathetic to my horrible luck (which their company manufactured), though no one ever seemed to care enough to actually FIX their mistakes.

Screen shot from my chat with Riley at Verizon: "If I am the one to accept your frustrations, I certainly understand it. If this will let you express your disappointment about the matter, I am ready to listen...You can count on me."

Here's the thing: empathetic listening doesn't help me if I am being misled and then overcharged. Baiting and switching consumers seems like a bad business model. Since I'd already changed carriers, I thought about waiting it out to see if Verizon's coverage was any better than my old carrier or if eventually they would get my bill right. But, then I decided I didn't need the stress. Verizon, like Comcast, has adopted a seemingly customer-friendly (but ultimately patronizing) approach to talking to us because they know they've made us mad by constantly changing rates and offering sub-par service. Only after I could finally extract myself from the clutches of the Comcast monopoly did I realize that well-run, customer-centered businesses don't need to sweet talk consumers.

While I would have much preferred spending those 9+ hours hanging out with the kids or reading a book, at least I feel like I am growing as a person. Instead of sticking around to fight it out with Verizon, I decided to just walk away. That's progress for me! I'm glad to be back where the customer service staff is helpful and no one tries to make me feel better! Hopefully, this is the beginning of a long future of being able to find Ren when I'm looking for him.

Letters from the Edge (November 2015 Version)

Dear People Who Burn Leaves Instead of Bagging Them,

Stop. Just stop. The air has been hazy with smoke for weeks now. I know there's a legal burning season, and that this is it, but, why not just pay a couple of bucks for the lawn bags at Ace Hardware,  fill them, and put them on the curb? The yard waste collection service here is pretty efficient, and you'll be surprised at how much those bags hold! And, heck, given the money we'd save by avoiding the ER and asthma-related hospitalizations, I'll even buy the bags for you.

Sincerely,

Your neighbor

I contemplated enlarging this and hanging copies of it all over town, but then I decided it would be too mortifying for my kids and we don't want to move again any time soon.

**************************************

Dear Local Church with Your Stupid Bonfire (Alternate title: How Can You Have "Life" in Your Name When You Tried to Kill My Sister?),

As your close neighbors to the east, my family and I have appreciated the many different ways you've engaged with our community. The various events you host each year seem intent out reaching out to a wide audience, and as a fellow Christian and church-goer, I appreciate your church's clear commitment to making a positive difference.

Today I write to ask that you reconsider your use of bonfires during your various fall events given the church's close proximity to a residential neighborhood. The bonfire you had on Sunday filled our yard, and even our garage, with a thick layer of smoke that triggered an asthmatic reaction in my 7 year-old daughter that will most likely result in an ER visit and possibly a hospital stay. I get that bonfires are exciting and fun, not to mention warm on a cold fall evening, but they also make it nearly impossible for children like my daughter to breathe. In the future, we hope that you will think about foregoing the bonfire or at least holding in on the opposite side of your campus so that houses like ours aren't so heavily impacted by the smoke.

Thank you for your consideration,

Moe

This one, I actually did send, last Monday, when Pink was starting to look like she might be on the downhill slide. I haven't heard back from them. I hope they respond because Sky just can't abide by the irony that a Christian organization would do something to harm people in its community, and I'm getting tired of hearing about it.

**************************************

Dear Second Grade Teacher,

I think it's great that your class will be singing for an all school assembly for Veteran's Day, I really do! But, I wonder if you might be able to send a note home about this next time? In it, I'd love it if you could tell me ahead of time that my daughter will need to wear something that is red, white, and blue, AND that has pockets. When I get a text about this at 8 p.m. the night before, I'm kind of stuck, especially in November when it's hard to buy patriotic cold weather wear. I mean, we have a couple of great red, white, and blue sundresses left over from the Fourth of July holiday that still kind of fit, and one of them even has stars on it. They don't have pockets, though, and apparently that's a deal breaker since Pink needs to be able to pull out a streamer and wave it at the end. When you put me on the spot like this, our options are limited: I could send Pink to school in her blue and red Japanese national soccer team jersey (though I don't know how the WWII veterans will feel about the Japanese flag placed prominently on the front of it). Or, I could send her in this (spoiler alert--I DID send her in this):

You could argue that a patriotic Hello Kitty isn't much better than the national soccer jersey for a former war enemy, but at least I didn't send her in hot pink as a close approximation to red (like we debated doing). Hopefully in the future, school-home communication won't depend on those last-minute mass text messages!

Oh, and I do love patriotic music, but it creeps me out every time I hear my little girl sing--

If tomorrow all the things were gone
I worked for all my life
And I had to start again
With just my children and my wife

--especially when she dips down into the low register and holds out the word wiiiiiiiiiiiiife. Thanks, by the way, for getting that song stuck in my head for days! It turns out there are all kinds of awkward moments in which you can find yourself humming it at work. Maybe next year you could just go with "God Bless America" instead.

Sincerely,

Moe

I actually really love the kids' school, so I didn't send this letter. Given the stress of the past month or so, though, I couldn't resist writing it in my head (and then feeling compelled to put it on the blog).

Peanut-free or Not Peanut-free, Part 2

A new school year is about to begin here, so I am in full advocacy mode again! Here's a follow up to the peanut issues from spring:

Dear Superintendent Brown,

In the spring, Mr. E forwarded a message we sent regarding an incident with a peanut butter sandwich on the bus. I’m sorry I didn’t have a chance to follow up then (I spent several weeks of the summer in China and Japan and got a bit behind on my “to do” list), but I am writing now as we are set to begin a new school year.

Our daughter Pink has a life-threatening peanut allergy, which we have managed by teaching her self-advocacy and how to interact safely with her peers when food is involved. She is aware of her allergies and proactive in protecting herself.

What we can’t control, unfortunately, is the behavior of other students. The incident on the bus on at the end of the spring semester highlights for us just how unsafe the world beyond the walls of our house and of her peanut-free classroom can be.  As if to punctuate this for us, the day after the incident on the bus, when the topic of peanut allergies came up at a club meeting, one of our older son’s classmates laughingly told me how “a bunch of kids at our school rub peanut butter in the faces of the kids with peanut allergies.”

I know it will sound like an exaggeration, but when Pink faces a child who has peanuts or peanut butter, it’s akin to her encountering someone who is wielding a knife. The risks of injury and/or death are no different between the two. As her parents, we understand that our goal is to teach her to be safe and to live her life without fear (to the greatest extent possible), but we also believe it is extremely important to educate others about the real risks of severe nut allergies. Children of all ages need to understand just how dangerous something seemingly innocuous like peanut butter can be for their friends.

We understand that this is an "allergen aware" district. We also understand the logistical challenges to becoming a peanut-free district. Our hope is that serious discussion would happen around the pros and cons of going peanut-free, particularly with thoughts about free and appropriate public education in mind. If the district won’t or can’t go peanut- free, we hope there will be sincere discussion (and hopefully then action) in the area of student education and awareness. We ask that concentrated effort be paid toward educating students in all buildings about the risks of allergies and the importance of promoting safety and respect. We also ask that that school-provided lunches and snacks be free of peanuts. In particular, we ask that lunches provided for field trips NOT be peanut butter sandwiches. Pink describes field trips as being extremely scary and her teachers these past two years agree that the entire experience is nerve-wracking for them as well. Because Pink's peanut allergy seems to have worsened, her allergist is suggesting that perhaps she should no longer attend the school field trips. With plenty of alternative sandwich options (sunbutter, wowbutter, ham, cheese, jelly, and, in the case there are no children with severe tree nut allergies, also almond butter and cashew butter), we sincerely hope the district is able to move toward a different alternative for the sack lunches provided on field trips, so that we won’t have to decide between keeping Pink safe and sending her to school so she can enjoy the same learning experiences as her classmates.

Though Pink's allergies don’t impact her ability to make friends and perform well academically, they do cause her to experience fear and alienation when at school. We will continue to teach her to self-advocate, but we ask for your help in educating other students and in making the school environment one that feels like a safe and welcoming space for all students.

Sincerely,

Moe and Ren 

Peanut-free or Not Peanut-free

Well, it's been awhile since I posted a letter, but here's one I wrote to Pink's principal this morning. Interesting timing especially given my last post about food allergies (link). Also, apparently May is National Asthma and Allergy Awareness Month (so now you know!). I think this e-mail letter speaks for itself, but what do you think?

Dear Principal Edwards,

We write to let you know about a frightening incident that occurred on the bus on the way home yesterday. Pink tells us that the girl sitting in front of her was eating a peanut butter sandwich on the bus and when Pink informed the girl of her peanut allergy, the girl shoved her sandwich in Pink's face. Luckily, the peanut butter did not touch Pink, but since smelling it, she has had a tight chest and asthma-like symptoms. Only this morning did Pink think to tell us about this as she was preparing to ride the bus and reminded of what happened.

Recent allergy testing has re-confirmed for us that Pink's peanut allergy is at the severest level, and exposure to peanuts in any form constitutes a high risk. Given the severity of Pink's peanut allergy, this behavior by the other little girl on the bus is similar to a life-threatening assault. It is particularly concerning since Pink does not have an epi-pen with her on the bus ride due to the fact that the bus has been assumed to be an allergen-free space.

We'd like to request several things happen as a result of this incident. First, we'd like to ask that the child who did this to Pink is educated so she fully grasps the implications and potential outcomes of her behavior. We'd like to be sure that the child understands she shouldn’t do something like that again.

Second, we'd like broader education for students regarding severe food allergies. We are sure that no parent would like their child to be the cause of another child's serious illness or death and believe it's important to educate children about these risks and to promote better awareness.

Third, we'd like to ask that the district re-examine its policies regarding peanut/nut allergies. While we understand that there are many different kinds of food allergies (indeed, Pink has many other food allergies herself), peanuts are a special issue because they are more easily spread (from oil left on children's hands and through dust particles) than eggs, soy, or shellfish, particularly in the school environment. While it's not the most common allergy, it’s potentially very deadly with a very small amount of the allergen. 

While Pink's teacher is aware of these risks and we have epi-pens available at school, we remain unconvinced that Pink is safe in her current environment, particularly in light of yesterday's events. Pink's teacher has been very good about maintaining a peanut-free classroom. We are less sure that Pink is safe in the cafeteria or on the playground or in the hallways or on the bus. A severe peanut allergy like Pink has is classified as a disability and therefore is subject to FAPE. We would like to explore ways to ensure that Pink is safe and healthy at school and that she is not unfairly limited by her allergy. We understand this request is coming near the end of the school year, but we think it's important to address this issue for her future placements particularly in light of the district-wide policies regarding life-threatening food allergies.

Sincerely,

Moe and Ren

Dear Gym Manager, Part Deux

Several days after I sent my message (read part 1 here), I got a reply. It came a few hours before Sky's scheduled class with John. Before I got this e-mail, I was still undecided about what to do. The gym manager's response didn't make the decision any easier.

Dear Moe,

I have spoken to my co-manager regarding your son.  She has spoken to John about the situation that occurred during class.  My co-manager does believe that John is still the best teacher for your son even though he has a tougher approach to situations.  She also believes after speaking with John that he would never "punish" your son if it was an issue related to his Autism but would hold Sky accountable for his actions if he was testing authority.  John also wanted you to know that he did not kick Sky out of class, Sky choose to leave when John asked him to sit down and wait while he gave the rest of the class the next instruction.  In John's view of that situation Sky did not want to wait for John to provide instructions to the rest of the class  If that situation happens again John believes he cannot act any differently than he did since Sky was unwilling to wait for John so he is unsure of what he can change in the future. He will take each situation as it comes and decide the best way to handle it at that time but if Sky is not cooperating and it is not due to his Autism John will have him sit out hoping he will learn to wait for further instructions before leaving class or that non compliance has a consequence of sitting out. If you feel you are unable to work with John and his methods we can start looking into other instructors.  Let me know if you are going to give this another try and see how it goes or if you would like me to look for another class.  Whatever you decide I would like you to be satisfied and happy with Sky's class. 

Gym Manager

Besides the punctuation and grammar issues, what bugged me about this is that I didn't seem to be getting through to them. Autism (with its mysteriously capitalized A) doesn't always look like you expect, and "bad" behavior can mean a lot of different things. Believe me when I tell you guys that THIS is the biggest hurdle when you have a kid like Sky. People always think he's doing something to be a jerk. Occasionally he is, but most of the time he's not. My points about the need to develop a means of communication and about the importance of teacher training didn't get far either. 

I started to consider the possibility that this would be one of those times when advocacy failed, but instead of throwing my hands up in the air and pulling Sky out of the class,** I decided to write back.

Thank you for following up on this.

As I have said, I never thought John kicked Sky out of class. Sky left because he wanted help communicating. That was not a great choice on his part, but the only one he felt he had. I am happy to keep Sky working with John, but I do think it's very important to understand some behaviors that kids with autism demonstrate don't look like what most people think autism looks like. We are in agreement in that I want Sky to learn appropriate behavior and what he needs to do to comply, but it's pretty important to understand how autism affects Sky in order to know why he behaves in certain ways and how to best work on those behaviors. I understand there are limits to what can be done in class, but I hope his instructors understand that autism impacts kids in much more complicated ways than they may realize. Sky is brilliant and a good kid, but he is also not coming from the same stratosphere as a lot of his peers. 

I am not advocating for John to be less strict or to hold Sky less accountable, what I am advocating for is that people who work with kids today understand that autism doesn't look like what you might expect it to and that failure to communicate does not equal non compliance. Sometimes it equals panic. I hope in the future John will give clear cause and effect statements (i.e. "if you don't do this warm up, I know your body is not ready to be on the trampoline, so you won't be able to be on the trampoline") and instructions. I hope it will work out for Sky with John because he does love the class.

I'll be honest, I thought this was a pointless gesture (though one I felt compelled to make).** As I finished up at work and prepared to head out to meet Big Sissy and the kids at the gym, I had already resigned myself to the class going poorly. These folks didn't seem to be getting it AT ALL.

Then, just before I shut down my computer, I got this:

Thank you for your cause and effect example I find that to be very helpful. I will relay this to John in hopes of finding a better way to communicate with Sky.

Hmph. Well, that's something. And, something is better than nothing. I wasn't ready to feel a glimmer of hope, but my sense of doom lessened a bit as I drove to the gym. When I got there, John was going over this with Sky:

It's certainly not perfect--it looks like the malformed beginnings of a really heavy-handed social story (with a seriously underdeveloped narrative voice). Still, if the thought counts, we were definitely getting somewhere. These rules were laminated ahead of time, and John explained them to Sky before class. Then he let Sky ASK QUESTIONS!! That alone convinced me that all hope wasn't lost after all. Upon reading these, Sky asked, "Is it okay to yell if I break my arm or leg?" (A perfectly logical question based on his experience and rule #2 on the list--If you're wondering, in this case John finds it is perfectly acceptable to yell).

In the end, the lesson went well. Sky worked to remember the rules and John willingly overlooked his slip ups. Most importantly, they seemed happy together and Sky got to get back on the trampolines.

In the end, here's what I learned: sometimes advocacy doesn't work like you want. Sometimes the messages get lost or misinterpreted. That's okay. Keep trying because even when folks don't seem to get it, they can still do okay by your kid. And, in the end, that's what's most important, anyway.

**I never sent my letter to the swim instructor and just pulled Sky from the class, instead. I still kind of regret it. Silence helps no one really.

Dear Gym Manager

Well, trampoline was going pretty well until it wasn't, but I suppose that's par for the course. Here's another letter for you. I think it explains things pretty well. 

~~~~~~~~~

Dear Gym Manager,

Thank you for taking the time to talk today as well as last week when Sky was asked to leave John's trampoline class. Here is the link to the post I mentioned. Though the kid described here isn't exactly like my son (no two kids with autism are alike, after all), the points it makes are relevant. Sky does not always have control over what he is doing/saying, and sometimes his body feels quite foreign to him. This, in fact, is one of the reasons we've chosen to put him in trampoline --to help him gain body awareness and control. I believe Sky experienced a loss of body control (which he described to you as his brain failing to convince his stomach muscles to do what they were supposed to do) last week when he couldn't do the warm-up exercise. I believe this both because he told me that was the case and because this week, before he went onto the floor for trampoline class with Amy, he lay down in the middle of the floor in front of the lockers and tried to do the same exercises (and then was ecstatic that he could do them). In other words, despite John’s belief that Sky was testing the boundaries and engaging him in a power struggle, he was actually trying to figure out why his body wouldn’t do what he wanted it to.  

He tried to explain this to John but was silenced before he could. This is where I have a problem. See, it's important that we hear and believe a kid like Sky when he tries to explain what is going on with him because 1) we can learn from him, 2) appropriate expressive and receptive language skills are harder for him, so when he feels unheard he falls apart, and 3) he needs to be able to be heard so he can make it in a world for which autism makes him less well suited. Autism rates are currently 1 in 68 children, a 30% increase from 2 years ago. Based on current tends, some estimate the rates could rate could be 1 in 10 ten years from now.  Chances are you will see many kids like Sky at your gym in the coming years, so I hope his experiences can help your staff become better aware of how to best teach kids like him. 

On the whole, we've been very happy with the quality of instruction our kids have received at your gym, but I think we can find a solution other than removing Sky from the class when a situation like what happened in John's class occurs. Sky was not being intentionally confrontational, disobedient, or defiant, and his inability to do the warm-up and then his lack of opportunity to explain why he wasn't able to do it led him to leave the floor (without permission) to seek me out for help. After all, after many years of being punished for things he can't control and bullied by classmates for his odd and somewhat clueless behavior, he's been taught to stand up and speak out, and when that fails, he knows to go to an adult he trusts. When John refused to let him speak, he lost his ability to advocate for himself. It was frustrating for both of us to feel like our attempts at advocacy on his behalf failed. Like the kid in the post above, Sky works harder longer just to appear and behave "normally." When that breaks down, it devastates him to be told he is just testing boundaries or making excuses. Since his behavior can sometimes betray him, he knows that his only hope is that people will believe what he says.

To avoid communication breakdowns in the future, I hope we can work with you and with John to come up with a strategy to enable Sky to express what is going on with him while also not causing disruption to instruction or being assumed by the instructor to be misbehaving.  Of course, we will continue to work at home to make sure Sky understands the expectations we all have for him. But, we also need to know that he has a way to be heard. I am happy to talk with you about strategies that have worked and think with you about how they can be implemented in the gym setting.

Sincerely,

Moe

~~~~~~~~~

This week, I was able to put Sky into a session with a different teacher, but what do I do next week? Sky loves trampoline and he even loves John's teaching techniques. Me, I'm not so sure. How about you? What do you think? How would you handle things differently?

All the Joy, All the Sorrow (Part 2)

The after-school art teacher’s e-mail hit me like a sucker punch to the gut. Instantly, I could feel my pulse quicken, my breath shorten and my eyes burn. I stopped being able to hear whatever it was the Ren was saying to me in the next seat. I had to remind myself to breathe, to focus, to keep it together. Every time this happens, every time Sky is rejected so completely, I never fail to be amazed by just how close to the surface my emotions are. Raw, is probably the right word for it. I always think I’ve moved on, gotten thicker skin, figured out how to not let these things bug me, but then something happens, and I am right back in that horrible, vulnerable space.

“What?” Ren asked, noticing my sudden inattention to our car conversation.

“Sky’s been kicked out of the after school program,” I said under my breath. In the car, I’m aware of the three pairs of ears listening to everything we say.

This was Sunday afternoon. The new session was scheduled to start the next day after school. I had no idea what was going on, so I had to ask.

“Sky, buddy,” I started, “have you been having trouble in after school art class lately?”

“I don’t think so,” he replied. “Why?”

Listen. I know I could have lied here. To be honest, I tried stretching the truth a bit by saying something about how the class was full, so he wasn’t going to be able to take it because the teacher wasn’t sure she could help him if he got overwhelmed. This was kind of true—the program director mentioned losing a parent helper and larger numbers than usual in her message. But, then I started to think about how we are always talking to him about the importance of understanding his behavior and how it affects others and learning how to self-advocate. And I realized he needed to know. It broke my heart to have to tell him.

“The teacher says you’ve been shouting out and sometimes you throw things. She says you fall out of your chair. Is that true?”

“Well, I guess I am kind of loud since I’m excited. But I don’t throw things. Sometimes I toss them onto the table though."

“Okay, buddy, I see.”

“Why?”

“Well, that’s why they said you couldn’t come back.”

“Oh." Pause. "Wait, so you mean, even if the class wasn’t full, I couldn’t go?”

“Maybe,” I said hesitantly. “Yeah, it kind of seems that way.”

He got stuck on that point and asked me the same question in several different ways just to make sure he got it. When it seemed he had, I said, “All we can do is keep working on those things that are hard for you. I know you’re awesome and that it's going to get easier. It just takes time. And practice. I'm not worried about it, though.”

Then, I shifted the conversation back to the great art show and how proud we were and how proud his art teacher and his homeroom teacher were of him. I reminded him of all the people who gave him a shout out on Facebook and what his grandparents said.

After a long afternoon and evening of willing myself to breathe deep and keep my eyes dry, I finally got the kids to bed. I had three hours of work ahead of me, and I really, really just wanted to let the ignorant woman and her stupid program go. Clearly the program wasn’t a good fit for Sky. Clearly they didn’t see him the way he deserves to be seen. Screw them.

But, the more I thought about it, the more I just knew I couldn’t let it go. This was the first time since he’d been diagnosed that Sky had been asked to leave anything. Worse, the more I mulled over wording of the e-mail, the more I was convinced it was just plain discriminatory. I can’t tell Sky to advocate for himself if I'm not willing to do the same.

So, I wrote this response to the woman:

Thank you for your message. Since I had not heard of any concerns regarding Sky’s behavior recently, you can understand our shock at receiving it. (In fact, our last correspondence was more than a month ago, when you wrote, “We will see how it goes, and I will advise from there.” I responded to your message immediately, asking to be informed as soon as possible if there were problems, but didn’t hear from you again until today, when you wrote to tell me that Sky’s registration was being denied.) 

You should know that your “difficult decision” has deeply hurt my son who loves art and who struggles but works hard to try to fit in with his peers. Sky is upset, a situation made worse by the fact that we are just now learning of your decision (by e-mail, no less) the day before he was set to begin a new session, one in which he was very much looking forward to taking part. 

In your message, you list several “efforts” made by the teacher, but they are far from adequate since we were never able to have enough communication to actually talk about why Sky might be behaving the way I am told he behaved. You mention that she tried to use some of the phrases I suggested and that she made laminated cards (even though those are cards that, at my request, were made by his IEP team, discussed with Sky, and sent with him to the classes in order to try to help him). None of these things will be effective without some understanding of why Sky is doing what he’s doing. This, I know from experience (and is, in fact, supported by much recent research on Autism Spectrum Disorder), which is why I have offered repeatedly to try to work with Sky and the teacher to alleviate some of her concerns. 

Interestingly, when I try to ask Sky about some of the incidents you mention, he is truly befuddled. This is not because he has forgotten or because he is lying about his behavior, it is because much of the “verbal outbursts,” etc. you describe were most likely part of his natural way of engaging with his environment and therefore not entirely noticeable to him. It is unfortunate that his behavior disturbed other children, particularly because much of it could have been remedied if I had been made aware of these “incidents” in a timely manner or been given the opportunity to try to help. I do wonder, though, if a child was upset by another’s physical disability, for example, whether the same blame would have been assigned. Would you fail to try to accommodate his needs if he was in a wheelchair? Or needed someone to sign the directions? 

Your pattern of waiting weeks or more to tell me that there were problems, your slow responses to all of my e-mails regarding concerns about Sky’s behavior, and your unwillingness to work more closely with me to try to make the classes work for Sky are extremely disappointing and, in my opinion, unacceptable. By being unwilling to work with me to help Sky succeed in this environment, you have ensured his failure. While it’s a difficult decision for you, it is devastating one for him (and, I should note, the first time in the four years since we received his diagnosis that he has failed to thrive, with support, in an environment, or worse, been asked to leave it). What makes it so frustrating is that it could have been avoided. 

In the future, I hope that you will make clear to the parents of special needs children wanting to take art classes that they cannot be accommodated in those classes.

This message didn't pull any punches, but I had to write it. I wasn't going to be able to sleep until I did. You know, I write these kinds of letters (calling people out on their idiocy) from time to time, but I almost never send them. This one, though, needed to be sent.

But, I was a little afraid to send it. I'd never been quite this blunt to anyone about how their actions impacted my son before. I'd never so blatantly accused someone of discrimination. It made me nervous. So, to make sure that I wasn't taking the wrong tone and unnecessarily pissing anyone off, I showed the letter to my friend, fellow ASD mom blogger Michelle Awesome. (She asked me to call her that--I agreed, but only because she promised to call me Samurai Mama from now on). Michelle's feedback was short and sweet:

"I think it's f^#*!ing awesome. Press send."

I knew she was right, but I needed that conversation and the support of someone who so thoroughly understood what this was like. (Thanks, Michelle!) Finally, I pressed send, and then (and only then), I could sleep.



To be continued.... 

• PART I
• PART 3
• POSTSCRIPT

Dear Comcast and TOMS, You Suck (Can I Say That or Do I Need to Say "Stink"?)

Dear Comast,

This afternoon, I spent 40 minutes (no, I am not exaggerating--I timed it) on the phone with one of your "customer service" representatives. Initially, I called because one of our "premium" channels had been removed, and I hoped to get it back. Over the course of the conversation, I decided to try to resolve my repeated bill increases. Four months ago, a representative promise me, cross his heart, that my monthly fees would absolutely not, I repeat NOT, go up. That promise lasted for an entire month. Three months ago, it went up $5. I waited to pay until I could call and haggle over the bill, and in the end, my payment was late and $5 more than I wanted to spend. The same thing happened two months ago. As a result of my inability to find the time to call and convince your "customer service" folks to lower my bill, it keeps going up. You're stressing me out, and it needs to stop. The result of today's 40 minutes? Three crying children and a promise that my bill should be lower next time. Actually, the person told me it would stay low for 12 months, but they've told me that before. Incidentally, in order to get the promise of a bill the amount that I was promised four months ago, I had to agree to give up the premium channel I'd called about. In other words, Comcast 1, MOE 0.

I know my blog readers are wondering why I still have Comcast given how crappy you are when it comes to billing and customer service. I don't have a good explanation. Some of it has to do with limited options for cable and internet where we live (way to take advantage of your monopoly). Some of it has to do with trying to minimize complications--switching would require me to take multiple steps that I don't have time to take right now. Mostly, I think it's because I am never one to back away from a fight. That, and I might be just a tad insane. Isn't that the definition of insanity--to keep doing something the same way and expecting a different result? Please don't persist in making my life crazier than it already is.

Sincerely,

Mom on the Edge

My first rant (link).
My second rant (link).

Reposting the picture of Pink's shoes, so you can see what my next rant's about....

Oh, TOMS, TOMS, TOMS,

You never did reply to my letter and phone calls. I'd almost let it go, figuring that a company run as poorly as yours with such shoddy product would soon exhaust its fifteen minutes of fame. But then I saw it--a TOMS display at Whole Foods, touting the One-for-One program, playing on the heartstrings of the environmentally- and socially-conscious Whole Foods customer. Thing is, Whole Foods is not one of your so-called authorized retailers. I checked. That means all those folks buying TOMS at Whole Foods are not participating in the One for One program. No, they're not giving shoes to less-fortunate kids unless they are handing them the pair they just bought. Those unsuspecting well-intentioned folks also don't realize they're out of luck if their TOMS fall apart like ours did. After all, your company won't replace or exchange shoes that aren't purchased at an official retailer.

You, know, whatever. If you want to send mixed messages and take advantage of the good will of people, go right ahead. It'd be awesome, though, if you felt just a tad guilty about it.

Sincerely,

Mom on the Edge

Here's my first post about TOMS (link).
And the second one (link).

Your Perfect Child

I shouldn't care. I know I shouldn't care. 

I know your closed-mindedness and hyper-narrow world view say more about you than they do about me or my kid. I know your choice to ignore me when I say "hello"--even though our kids go to the same school and participate in some of the same extracurricular activities--is immature and not even worth the energy it takes me to wonder about it. I know that what you say to others about my kid's behavior and my presumed failures as a parent reflects your ignorance about autism and special needs parenting. I know that your sense of religious superiority indicates a grave lack of understanding of grace and much of what Christianity represents. 

I know all these things.

And, I know I shouldn't care. 

But, I still do.

I care because it's not just about you and me. It's about how you treat my kid and kids like him when you volunteer at school or chaperone a field trip. 

I care because I know you are passing your ignorance and self righteousness on to your perfect children. You are teaching them to be unaccepting of those who are not like them. You are teaching them that it's okay to treat others as "less than" and to judge and look down on them. 

I care because some days your close-mindedness makes me want to pray that God would bless you with a son who has autism or ADHD. And then I feel guilty. 

I care because I realize there are so many more people like you out there, and it scares me to think of what people like you might do to kids like Sky.  

I care because life is too short to have to worry about people like you.

There are days, especially the really hard ones (like today), when the baby is sick and Sky is in permanent impulsive meltdown mode, when I wish I could have perfect kids like you think you do.  

And then I remember that I have something much better.  I have kids who are compassionate,  kind,  and curious. 

I have kids who understand that no one is perfect but that the imperfections are where we find grace and strength and joy and hope.

And I'd say that makes me pretty darn lucky--maybe even luckier than you.