What's Your Super Power?

Ren thinks Sky should guest post with an illustrated story from time to time. I think we all can agree the blog suffers from my complete lack of artistic talents, so I ran the idea past Sky. Once he grasped the concept of creating something to entertain complete strangers, he jumped right in.

"What kind of story should I write?" he asked.

"How about one of your robot, super-hero stories?" I suggested. "You could be the hero."

"What, like a super hero with a special brain like mine?"

"Yeah, 'cause you can hear and see things I can't. Like how you can hear the TV hum from two rooms away when I forget to hit the power switch."

"And I can solve mazes just by looking at them."

"Right, but just like other super heroes your powers come with some weaknesses. You know, like Superman can't be around kryptonite. So wouldn't it be cool if you could write a story about that? About how to save the world with your strengths and your weaknesses?"

"What would my power be?" Pink P wanted in on this action.

"I know! She can sense smoke and dust since she has asthma, so she can have super-duper smelling powers and sniff out bombs," Sky offered.

"Yeah, and I can ball up like a rock, so I can hide and trip bad guys," she added.

"Good idea! And Stow can just paralyze people with his super cuteness!"

"Yeah, because everyone stops to stare at him."

*****

Before bed, Sky showed me the first page of the story. I don't want to give too much away, but it started with, "Somewhere in Ohio..." which is awesome, particularly because we don't live in Ohio. Now I don't know if this story will ever get written, but it might be the coolest comic ever. And you should have seen the look on the waitress's face tonight when Pink tried to explain her super powers at dinner. That alone was worth the idea.

(Just ignore the recycled paper)

Two Years Out: Reflections from an Autism Parent

Two years ago this month, we got Sky's autism diagnosis. As I've said before, I was less shocked than relieved to finally know why life with him was so darn difficult (link). So, two years out, here's what I want you to know about life with autism:

Kids with autism have what's called a pervasive developmental disorder, a term you probably haven't heard unless you're living it. Post diagnosis, I quickly learned how totally appropriate this designation is. Autism impacts every aspect of my son's life--his relationship with food and sleep, his experience in school, what he obsesses about, the way he sees, hears, smells, and feels, how he understands what people say and do. In other words, essentially every point of contact he has with the world around him is impacted by autism. It also impacts every aspect of our lives with him; it’s pervasive because no one in our support network escapes his autism unscathed. Everyone who interacts with him has to have a deep understanding of his dietary needs. They also have to understand how to talk to him so that he can understand what they are saying. They have to know the routine and be able to stick to it. They have to be infinitely patient (especially when he interrupts for the millionth time to explain in excruciating detail a scene from a movie he watched months ago). Most importantly, they need to know what to do if he has a meltdown.

When my son has a meltdown, time stands still. He’s so loud, we couldn’t carry on a conversation if we wanted to. He’s totally out of control of his words and thoughts. When he melts down, I have to drop what I am doing, go to where he is, and try to talk him off the ledge. If that doesn’t work, I have to hold onto him until I can walk him to his safe zone where sometimes (but not always) he can calm himself down. Meltdowns happen when he is overwhelmed, and he can get overwhelmed for myriad reasons. Maybe he didn’t sleep well. Maybe he’s getting sick. Maybe someone said something he couldn’t understand. Maybe Mom is a little tired. Maybe there’s a bug on the window sill. Maybe Sister is singing too loud. Maybe she isn’t singing loud enough. Maybe Dad didn’t answer the question fast enough. Maybe his sock has a tiny hole. The list of possible triggers is maddeningly endless, and there is no way to completely eliminate them. We do our best by maintaining vigilant consistency in our routine and our diet. If it’s not on the schedule, we don’t do it.

When you're handed an autism diagnosis, you aren't also handed an autism handbook. That’d be way too easy. Instead, you're given a list of suggestions and sent out on your own to make sense of it all. In our case, our list said he might benefit from occupational therapy, he should join a social skills group, he'll probably be bullied, so he'll need support in school, and if the sensory stuff gets to be too much, he might need medication. Oh, and don't believe the stuff you read about diet. None of that's true, and if you read it, it might scare you.

It took me awhile to figure out that the person who diagnosed Sky was decidedly afraid of biomedical interventions, though I still have no idea why. See when you have a kid with autism you also unwillingly stumble into two very contentious debates--one is about the role of vaccines in causing autism and the other about whether autism can be "cured" with diet, supplements, and other interventions. Your doctor can't help you understand these debates. In fact, most pediatricians know surprisingly little about ASD and what to do about it. If you're lucky, like we were, you will at least have one that's willing to consider the information you present about these issues and try to refer you to where you need to go. If you're even luckier, you'll find a doctor like our new one who is up on the research and who knows which tests to run and which diets to try and who knows what to do when an ASD kid is sick.

The thing is, there is no road map for any of this. It takes a good year post diagnosis to figure out how to start getting the services you need. In our case, it took another six months to find a good doctor and to understand enough about the diet stuff to embark on a gluten free, casein free, organic diet. It all takes time. It all takes money, and meanwhile, you're still living with a kid with autism.

And you can’t escape your life. You inhabit it every single day with the knowledge that it might not get easier and that the only people who really understand what it's like to have an autistic kid are people with autistic kids. We're like an exclusive members-only club full of people who really don't want to be there. You're lucky you can’t join this club. Please know how lucky you are. My son’s case is relatively mild. He can talk. He doesn't run away or stay up all night. He’s potty trained. He keeps up in school. So, we're lucky, too. I know that, and yet, I can't help but mourn for all we’ve lost to autism.

It’s taken awhile for me to accept that this life is mine, and as I have, I’ve come up with a list of things I want people with “neurotypical” (aka non-autistic) kids to learn from my experience.

Here you go:

1. Know that some things are a lot easier for you than they are for other parents and that doesn't make us bitter or jealous. We just want you to understand things are really REALLY hard sometimes.

2. Don’t judge the parents whose kid is total chaos. Chances are he’s melting down, sensory over-stimulated, or completely confused by the social cues coming at him from all sides.

3. Don’t be afraid to reach out to a family affected by autism. Offer to help. Drive their neurotypical kids to practice. Baby sit. Bring the grown-ups coffee.

4. Educate, I mean really educate, yourself about autism (and don’t use television or movies to do it).*

5 Resist references to Rain Man or that kid from Parenthood. As the saying goes, “If you've met one kid on the autism spectrum, you've met one kid on the autism spectrum." They can all be very different from one another.

6. Don’t bat an eye when you see a kid who's clearly too old for diapers. Believe me, his mom already knows this.

7. Resist the urge to tell a kid she's too old to chew on a baby toy/ride in a stroller/hold mom’s hand/get carried. This may be the only way the kid can get from point A to point B without everything falling apart.

8. Understand that most ASD kids don't "look" autistic (whatever that means).

9. Realize that to some kids a trip to Walmart/an amusement park/the mall/a grocery store/pretty much anywhere can be like running the sensory gauntlet without a sword.

10. Know that even though you can't really understand, you can still help.


For my reflections on year one, click here.


* The HBO movie about Temple Grandin (called Temple Grandin) is the exception. You can also see her TED talk.

Dear Comcast

Well, I thought I would make it to the end of 2012 without any more griping, but alas, this letter needed to be written. For those of you keeping track at home: Frontier responded positively and in a reasonable amount of time (link). I've yet to hear anything from TOMS (link). I'll keep you posted...

______________________________



Dear Comcast (or Xfinity or whatever it is you like to be called these days),

I can't believe it's taken me so long to write, to be honest. Usually, I'm much more proactive with my consumer complaints. I guess I just kept thinking it had to get better.

We've been Comcast customers since the summer of 2009. From the beginning there were problems. Specifically, when I called to open an account I was promised certain services at a price that was agreeable to me, but my first bill was for an amount three times that. I called to resolve the issue and twenty hours and fifteen phone calls later, I finally found a customer service rep who agreed to give me the deal originally promised. It took 15 phone calls and 20 hours of my time. I should've run while I had the chance, but holes had already been drilled in my walls and boxes installed on my TVs, so I decided to stick with it.

Since then, my bill has increased by 35% despite the fact our overall services have not really changed. I've also had another child and entered the world of special needs parenting. In other words, I have even less time to spend on calling Comcast once every couple of months to negotiate my bill. So, I write today to beg you to rethink your company policy. Instead of consistently raising people's monthly rates and hiring more employees to work your phones and ensure us that they really do understand how frustrated we must be (that's a nice touch, by the way, training them to seem sympathetic to our plight), won't you please quit messing with our bills, instead (unless of course you want to lower it)?

The tipping point for me, what finally made me decide to write this letter, was a comment made by Delia*, one of your billing support reps, who I talked to yesterday. I called because my bill went up for the second straight month despite the fact I was assured by the rep I talked to two months ago that it would stay the same as it'd been for several months prior to that. During our 35-minute conversation, Delia told me that she could help get my bill back close to the amount I was paying before the rate increases, but that I would have to call again next month to renegotiate my bill. In other words, she was the first Comcast employee to openly admit that I would have to keep calling to keep my bill down.

For a working mother of three, with special needs kids and way too many family health issues to count, this feels like a combination of bullying and extortion. I know your bottom line depends on the fact that some folks don't pay attention to their bills or that they are too timid or too busy to fight with your reps to get the services they ordered at the price promised to them, but I wonder how this is honest business practice?

This is what I propose. You guarantee my rate and services for for 12 months, and I will be a grateful, timely-paying customer. I'll be happy to call and chat with your reps once a year to renegotiate my plan, but please stop requiring me to do more than that. If you continue to raise my rates without good reason, I will cancel my account and encourage everyone I know to do the same.

Thank you for your time.

Sincerely,

Moe



*Name has been changed.

And So This is Christmas

"Mom, how've I've been doing lately?" Sky asked from the back seat one November evening as we drove to Cub Scouts.

"What do you mean?" I replied, impressed that he seemed to be taking a global perspective on his progress as we continue to try new interventions.

"Am I doing better than last year?"

"Sure you are, Buddy. Little by little," I said, happy that he seemed to notice his own improvements.

Then, after a few moments of driving in silence, he said, "Good. Because Santa came last year, even though I made a lot of bad choices. So I'm sure he'll come this year!"

And, he seemed genuinely relieved.

*****

This year, we made it a point not to talk about Santa watching, not to coerce with threats of presents lost. Though many of Sky's friends have elves on their shelves, we opted not to put more pressure on our already anxiety-ridden child. And, you know what? He kept it together. He didn't have a pre-Christmas regression, and, aside from some over-excitement surrounding a certain Playmobil remote control car, he's been unusually calm.

Last night, at Christmas Eve service, someone asked Sky whether he thought Santa was headed his way.

He responded as cooly and articulately as I've ever seen him in such a situation, "I was approximately one percent better this year than last year, and Santa came last year, so I'm pretty sure he'll come again tonight."

Then, stopping to gather his thoughts, he concluded, "He knows I'm trying."

Yes, he does, Buddy. He really does!



May your holidays be filled with peace and may you all be able to rejoice in your accomplishments big and small.

Updates

Three totally unrelated updates to past posts--also known as "how to write a blog post when you can't sustain a train of thought."

First, check this out. Santa wrote a response to Sky's letter.

You remember the letter (click here for the previous post):

We dropped it in the red mailbox at the historical museum, and this is what we got back:

(click on the image to enlarge it).

I'm pretty sure this convinced Sky. At least for this year. Thanks, awesome letter writer! You should've seen the sheepish grin on his face when I read it to him.

Second, here's Day Two of gluten-free lunch:

They really liked the waffles. Obviously, I can't keep this pace with each waffle costing approximately a dollar, but at least it will be fun while it lasts. Once the waffles are gone, we will go back to rice balls and octopus hot dogs (Google it. Trust me).

Third, I never did hear back from TOMS. Click here for the story about the shoes if you haven't already seen it.

I don't know about you, but I kind of hate it when my supposedly socially conscious retailer ignores me. Not sure how you can claim to want to make a difference while being totally unwilling to engage with customer concerns. But maybe that's just me. Meanwhile, Frontier Airlines was awesome in handling this (link) complaint. So, fly Frontier, but don't buy TOMS. And, please, feel free to complain to TOMS directly. I have the address if you need it.

A Diversion

I still can't figure out how to write about what happened in Connecticut, so here, a diversion:

Just in time for the holidays, we've decided to take the plunge and go gluten-free. We've been toying with the idea for awhile, and in fact, had almost made it to a totally gluten-free diet when we got celiac test results that were negative. At about the same time, our nutritionist told us that while going casein-free helps more than 80% of spectrum kids who try it, going gluten-free only helps 57%. Oh, and you need to be completely gluten-free for months before you may see results. These three pieces of information were enough to put me off the idea for a couple of months. To be honest, I'd been fighting the urge to give up completely after realizing just how many times kids bring in special treats (i.e. cupcakes or cookies) for school snack time. I don't know about you, but I don't remember there being a snack time after nursery school. But, whatever.

The point is, after a couple of months of not trying to be gluten-free we have finally come to the realization that we need to do it before we can decide whether to panic about Sky's unpredictable behavior. So here goes...

Day One went okay with gluten-free pretzels and sun butter and jelly sandwiches on gluten-free frozen waffles. Only a jillion more days and dollars to go! Oh, and it only took two years, but I figured out if I include crunchy things like carrots and apples in Sky's lunch, he's able to eat peacefully with a little zen attitude left for his afternoon. Who knew crunching could be so therapeutic (Well, except for all the OTs out there--I'm sure they knew).

What You Need to Know: Two Years Out

First, this. A statement from Autistic Self Advocacy Network about the events in Connecticut.

The shooter was autistic. So what? Please know all you can about autism before you even begin to think about what that means. My guess is that this fact alone is irrelevant. The shooter was also 20, male, the son of a teacher, and the youngest in his family. And, there's a lot we don't know and shouldn't know about him, his family, or the situation. Please don't let mainstream media tell you what you know about autism.

Ren and I are heartbroken for all involved just like the rest of our nation in mourning. What else can we say? What can anyone say?

*****

And now, my original post for today, this two-year anniversary of Sky's diagnosis--What You Need to Know:

Kids with autism have what's called a pervasive developmental disorder, a term you probably haven't heard unless you're living it. Post diagnosis, I quickly learned how totally appropriate this designation is! Autism impacts every aspect of my son's life--his relationship with food and sleep, his experience in school, what he obsesses about, the way he sees, hears, smells, and feels, how he understands what people say and do. In other words, essentially every point of contact he has with the world around him is impacted by autism. It also impacts every aspect of our lives with him; it’s pervasive because no one in our support network escapes his autism unscathed. Everyone who interacts with him has to have a deep understanding of his dietary needs. They also have to understand how to talk to him so that he can understand what they are saying. They have to know the routine and be able to stick to it. They have to be infinitely patient (especially when he interrupts for the millionth time to explain in excruciating detail a scene from a movie he watched months ago). Most importantly, they need to know what to do if he has a meltdown.

When my son has a meltdown, time stands still. He’s so loud, we couldn’t carry on a conversation if we wanted to. He’s totally out of control of his words and thoughts. When he melts down, I have to drop what I am doing, go to where he is, and try to talk him off the ledge. If that doesn’t work, I have to hold onto him until I can walk him to his safe zone where sometimes (but not always) he can calm himself down. Meltdowns happen when he is overwhelmed, and he can get overwhelmed for myriad reasons. Maybe he didn’t sleep well. Maybe he’s getting sick. Maybe someone said something he couldn’t understand. Maybe Mom is a little tired. Maybe there’s a bug on the window sill. Maybe Sister is singing too loud. Maybe she isn’t singing loud enough. Maybe Dad didn’t answer the question fast enough. Maybe his sock has a tiny hole. The list of possible triggers is maddeningly endless, and there is no way to completely eliminate them. We do our best by maintaining vigilant consistency in our routine and our diet. If it’s not on the schedule, we don’t do it.

When you're handed an autism diagnosis, you aren't also handed an autism handbook. That’d be way too easy. Instead, you're given a list of suggestions and sent out on your own to make sense of it all. In our case, our list said he might benefit from occupational therapy, he should join a social skills group, he'll probably be bullied, so he'll need support in school, and if the sensory stuff gets to be too much, he might need medication. Oh, and don't believe the stuff you read about diet. None of that's true, and if you read it, it might scare you.

See when you have a kid with autism you also unwillingly stumble into two very contentious debates--one is about the role of vaccines in causing autism and the other about whether autism can be "cured" with diet, supplements, and other interventions. Your doctor can't help you understand these debates. In fact, most pediatricians know surprisingly little about ASD and what to do about it. If you're lucky, like we were, you will at least have one that's willing to consider the information you present about these issues and order the appropriate tests or refer you to the appropriate professional.

The thing is, there is no road map for any of this. It takes a good year post diagnosis to figure out how to start getting the services you need. In our case, it took another six months to understand enough about the diet stuff to embark on a gluten free, casein free, organic diet. It all takes time. It all takes money, and meanwhile, you're still living with a kid with autism.

It’s taken awhile for me to accept that this life is mine, and as I have, I’ve come up with a list of things I want people with “neurotypical” (aka non-autistic) kids to learn from my experience.

Here you go:

1. Know how lucky you are.

2. Don’t judge the parents whose kid is total chaos. Chances are he’s melting down, sensory over-stimulated, or completely confused by the social cues coming at him from all sides.

3. Don’t be afraid to reach out to a family affected by autism. Offer to help. Drive their neurotypical kids to practice. Baby sit. Bring coffee.

4. Educate, I mean really educate, yourself about autism (and don’t use television or movies to do it).

5. Resist references to Rain Man or that kid from Parenthood. As the saying goes, “If you've met one kid on the autism spectrum, you've met one kid on the autism spectrum." They are all very different.

6. Don’t bat an eye when you see a kid who's clearly too old for diapers. Believe me, his mom already knows this.

7. Resist the urge to tell a kid she's too old to chew on a baby toy/ride in a stroller/hold mom’s hand/get carried. This may be the only way the kid can get from point A to point B without everything falling apart.

8. Understand that most ASD kids don't "look" autistic (whatever that means).

9. Realize that to some kids a trip to Walmart/an amusement park/the mall/a grocery store/pretty much anywhere can be like running the sensory gauntlet without a sword.

10. Know that you can't really understand, but you can learn how to see all the difference in the world with openness and acceptance.


For my reflections on year one, click here.

Darn You, Santa!

Sigh. Christmas is coming.

Don't get me wrong, I love Christmas. And I don't get terribly bent out of shape by the whole Christmas-shopping thing, either. After all, since Sky's birthday is just before Thanksgiving and Pink P's is between Thanksgiving and Christmas, I am usually completely done with my shopping right about now. Plus, the Great Fall Regression seems to subside a little at this point, too, so December tends to be smooth sailing compared to what precedes it. What I don't love about Christmas is the whole Santa schtick (ugh, and even worse, that blasted elf on the shelf--don't get me started).

Every December, I have what amounts to an existential crisis. Do I tell the kids the truth (which is my M.O. on every other topic under the sun) and destroy their sense of fantasy and wonder, arming them with knowledge that they will share inappropriately and widely? Or do I just play along and feel guilty about lying to my hyper-literal, justice-oriented ASD kid who I am pretty sure will have a complete meltdown when he realizes I have been leading him astray all these years?

For what it's worth, even on the topic of Santa, I manage to tell the truth 90% of the time. It's all semantics, mind you, but somehow knowing I am not explicitly lying makes me feel a little better.

Here are a couple of sample conversations from last Christmas:

Sky: "Mom, I don't know if Santa is real or not."
Me: "I know what you mean, but people say he is."

Or

Sky: "That mall Santa doesn't look like the real one."
Me: "Yeah, I guess it'd be pretty hard for one person to be in so many places at one. These guys must just be helping out."

That said, I've been known to encourage letters to Santa. After all, it's a perfect way to ensure you get them exactly what they want, and, more importantly, to convince them to want what you've already bought for them (on sale many weeks in advance). So, I'm not without guilt here. In fact, I may have earned a permanent position on the "naughty list" the year I bought a Thomas train set on sale while Sky was with me, convinced him it was actually for his cousin, and told him he should ask Santa for the same set because it was so cool.

Actually, I did that two years in a row.

This year, I'd planned to just tell Sky the truth. He's 8, so he'll be figuring it out soon anyway. Funny, though, he hasn't asked about it once. But, he did write this letter:

Perhaps my work here is done already.

This Midwestern Landscape

I'm taking off from Chicago O'Hare. Below me the landscape stretches out in hues of dull greens, browns and greys. Winter is setting into these parts, and though the sunset in the distance is probably beautiful, it's muted by an evening haze.

Hazy.

Maybe this is the best word for how I've been feeling lately.  See, Stow's sick again. And it's a lot like things were a year ago, when he stayed sick for six weeks, started losing weight, and went from being in the 90th percentile to "failure to thrive." What a year ago seemed like an extremely mellow baby because he was so chill and inactive, at eighteen months is truly unsettling. When Stow's sick, he becomes silent and stops moving. Looking back, Stow was probably sick a lot during the first year of his life, and we just didn't know it because he seemed so darn easygoing.

Sweet boy.

This last bout started with a round of C Diff followed by the stomach virus which was accompanied by exacerbated asthma-like symptoms. The C Diff lasted for three weeks and requires treatment even now, and the stomach flu that hit most people for 24-48 hours hung onto Stow for 7 long days of diaper blowouts and refusal to eat. Today, finally, he woke up seeming like his old self, but he's lost some of his words. He no longer says "Daddy" or "Sky" or "Pink." Just "Mommy."

Over and over.

Mommy. Mommy. Mommy.

And I know he's pleading with me to make this better. To figure out what is going on. To advocate for him. And he's begging me not to go. It seems I'm always going. To work. To therapy for Sky. To call the doctor, the insurance company, the school. 

I don't know what's going on. I really don't. But I'm starting to get glimpses of it, and it unnerves me. And it makes me angry. It angers me to know that Stow might be the most heavily affected by the same confluence of forces that brought Sky to autism and Pink P to asthma and allergies. With Sky and Pink, I had no idea. But, with Stow, I did. And, still, I couldn't stop it. One day soon I will get beyond the disbelief. The guilt. And the anger. And I will start to fight. And when I do, there will be no stopping me. But today, today, I am gathering my strength and trying to figure out which of these battles I need to fight first...

Suspended thousands of feet in the air, I look out into the darkness that has enveloped the earth below. The night is clear and tiny lights dot the landscape. I know tomorrow the sun will rise, and we will go on. We will laugh, we will cry, we will love, and we will keep moving. And somehow, we will be okay, because despite everything, we always figure out how to go on. 

Be Prepared

Recently I had to travel for work. As an academic, I've adopted what I like to think of as rumpled chic. I'm hoping to affect the absent-minded professor look. In all likelihood, I actually need a serious fashion intervention, but who has time for that between work and dealing with special needs kids? 

So, at 7 o'clock the night before my early-morning departure, I realized that none of my business wear, or at least not enough of it to pull together a complete outfit, fit anymore. 

Exhausted after a day full of teaching and grading and an evening of making dinner, giving baths, and mediating sibling strife, I knew I had no other choice. "I'm going shopping," I said to Ren, grabbing my keys and wallet.

"Ok," he responded unfazed, surrounded by three kids who still needed to be put to bed. This isn't the first time I've had to go shopping the night before a trip.

Thank goodness for holiday hours. The mall was open later than usual, and the clerk at the department store made it her mission to get me into shape. But first she had to give me a hard time. 

"You're an educated woman," she said in a thick German accent, unexpected in the rural Midwest.  "Why aren't you prepared?"

Ah, that eternal question. Why wasn't I prepared?

I wanted to explain about Sky and Stow and the diet and the doctors' appointments and the therapies, but what good would it do? Have I ever really been prepared?

In the end Rita helped me find three pairs of pants, three blouses, and two jackets.  She walked me to the shoe department to make sure the shoes I bought would have the right size heel. She steamed the jackets and reminded me to put socks in the folds of the pants to avoid creasing when I packed.

I know how to do all these things, but it was nice to be reminded just the same. 

If it hadn't been for Rita at the mall, and Ren, who graciously sewed a new button onto my coat at the eleventh hour (once I figured out where I'd stored the coat after I last wore it two winters ago), and Stow's speech therapist, who brought dinner to Ren and the kids the second night I was gone, things wouldn't have gone nearly as well. 

"I hope that whatever you wish to happen happens," Rita said to me as I walked away, purchases in hand. 

"Indeed!" I thought. 

Though I'm not sure what I that is anymore.

Gobble, Gobble (or Happy Pukesgiving)

We had this conversation tonight:

Pink P: (Playing with her handmade paper turkey under our feet while we cooked) Cluck, cluck. Cluck, cluck.

Me: Gobble, gobble.

Pink P: Huh?

Me: Gobble, gobble, not cluck, cluck.

Pink P: (Distractedly) Cluck, cluck.

Ren: Pink, speak Japanese!

Me: How do you say gobble, gobble in Japanese?

Ren: What?

Me: Gobble, gobble. In Japanese?

Ren: .....

Me: You know. A cat says meow and a dog says bark. But, what does a turkey say?

Ren: Dunno. I'd never even seen a turkey until I came to the US.

Pink P: Cluck, cluck.

There you have it. Thanksgiving in two cultures. The only thing that would make this party more fun? Vomiting. Lucky for us, we have some of that, too. So here's hoping your thanksgiving is full of family and fun but NOT full of puking preschoolers and toddlers!

Girl Power 2

Pink P doesn't really sleep at night. For the first year of her life, she woke up consistently at 10, 1 and 4. Even as a tiny baby, it must have been clear to her that she had to carve out a space for herself in the midst of the chaos that is her older brother. Though I complained bitterly about getting up three times a night for baby Pink, I was secretly glad she figured out a way to assert herself and insert herself into the peaceful spaces.

I wish I could say much has changed since then, that her brother is responding well to various interventions and that the balance of family time and attention is closer to "normal." But, I can't. While it's true we are slowly but surely making progress, it is slow and our way is marked with innumerable pitfalls and setbacks.

But still, Pink P perseveres.

Last night the task at hand included 20 cupcakes for Sky's class. Sky's birthday means Sky gets to make the cupcakes. Fair enough, right? Not for Pink. She has to be in the middle of things. And, since Sky's in the throes of his Great Fall Regression, my attempts to elicit teamwork and camaraderie between the two of them were doomed from the start. In the end, Sky agreed to let Pink P put in the cupcake liners. Then he demanded she go play with Stow while he did the rest.

Pink did as she was told, but throughout evening play time and the bed time routine she insisted I let her help ice the cupcakes. I explained that the cupcakes needed to cool, so I would have to ice them late at night when they were sleeping. Still, Pink P wouldn't give up, and one thing I know about Pink is that she will not stop until she is sure she's been heard and understood. On this night, she wouldn't go to sleep until I agreed to try to wake her when icing time came.

As she burrowed under her covers, she said, "Mommy, you'd better wake me up, or I will be very sad."

"Okay, I'll try, but if you don't get up, it's not my problem," I replied, assuming that by 11 p.m. she'd be dead to the world.

And she was.

Still a promise is a promise, so once the cupcakes were cooled, I went into her room and said in a neither purposely loud nor purposely quiet voice, "Icing time."

Pink, who had been sleeping deeply (and snoring) just moments before, shot out of bed, clearly not awake but determined to ice the cupcakes. She walked into the door and then the wall but somehow made it safely to the kitchen, where she proceeded to ice three or four cupcakes before collapsing onto the couch.

And that, dear friends, is how I know Pink's going to be just fine.

That Baby Ain't No Fool

Stow got hit with a nasty intestinal thing that requires 6.5 ml three times a day of the most horrible medicine you can imagine. The pharmacist shook his head when he handed it to me. "Good luck," he said, but in his eyes, I could tell he thought we'd need a lot more than luck. They only had raspberry flavoring, so I came home with a huge bottle of purplish-red glop.

The first dose went off without a hitch. The completely unsuspecting Stow drank it all before realizing just how bad it tasted. By the next dose, he was on to us. After happily consuming his regular medicine, he flat-out refused to have anything to do with the new stuff. I knew we were headed for trouble when he actually checked the dropper to see what color the medicine was before taking it. He clamped his jaws shut and turned his head away from me, kicking and pushing for good measure. Any little bit of the medicine I managed to get into his mouth came spilling out onto his clothes and the floor, red dye everywhere. Blasted raspberry!

Thus began 48 hours of Stow refusing absolutely any medication. 48 hours. We tried everything. Really. We mixed it in juice, apple sauce, rice (what? He loves rice). We tried hiding it in strawberry jam and spreading it on bread. We put it on bananas. We mixed it with Sun Butter and stuck it to the roof of his mouth. We even called the doctor and then the pharmacy so we could get it in tablet form, thinking we could crush it up and hide it in more things, ninja-like. We tried catching him when he was sleeping, playing, watching TV.

On the first day of absolute refusal, I called the doctor.

"You have to get this stuff into him," she said. "Otherwise, he will get very sick."

I already knew this. The pressure didn't help.

On the second day, I called her again, desperate this time. She'd tried to find alternatives medications. There were none.

"Have you tried pinning him down, forcing the dropper to the back of his throat and holding his lips shut?" she asked.

"Umm, no." I mean, who wants to do that?

"Well, it's that or hospitalization and an IV."

So, that night, while I held him down, Ren pushed the dropper as far into Stow's mouth as he could without actually gagging him. The baby struggled and gasped, but we managed to get about half of a dose into him. After we let him go, he stood up and dutifully drank the rest as if it was the most natural thing in the world.

That baby ain't no fool. If the choices are to be gagged or to take yucky medicine, he'll take the medicine, thank you very much.

Leaving on a Jet Plane

So I'm going to a conference at a place that's even further than the last one. This time I'm off to a different continent and even a different hemisphere. Actually, that's not true. It's the same hemisphere. Just really close to the equator. I'm going to present a paper to an audience of my peers in hopes of getting fruitful feedback and expanding networks of knowledge. Six months ago, when I proposed my paper and decided to go, I figured life might be a little less crazy by now. Hahahahahahaha. Right. 

In fact, Ren's legs still hurt all the time, and he's still at half speed and wondering what the point of two back surgeries was. And Sky is in the middle of a major regression, something that happens every fall. In fact, I'm thinking of naming it "The Great Fall Regression." Pink P developed a cough two days ago, which means she could be inching her way toward an asthma episode. And Stow, bless little Stow. He's managed to pick up another hard-hitting gut illness that requires some serious medication which he absolutely refuses to take. 

So I'm leaving on a jet plane tomorrow and at least two kids have the potential of getting hospitalized while I'm gone. I'm not sure how I feel about those odds. 

To help myself stay organized in the midst of all this chaos, I've been creating lists. Here's the list I have for the plane:

To do on plane:

Write blog
Finish talk
Grade
Solve world's problems

That last one seems a bit ambitious, but, hey, it's a 22-hour plane ride, and I won't have to cook for special diets, shuttle anyone to therapy, dose out any medication, or manage any meltdowns. Just think of all the possibilities. 

*******

Update:

I got violently ill just hours after I wrote the entry above (see what happens when I tempt fate like that?), and I was officially grounded by the doctor. Guess the world's problems will have to wait. But, at least I'll be here should anyone else require hospitalization. See, there's always a bright side!

Girl Power

I took the kids bowling yesterday. Among other things, we were trying to see whether they wanted to have their birthday party at the bowling alley instead of the skating rink. Not sure how things would go, we only paid for one game, and after figuring out the right shoe size and finding a ball for each of them--one that would not pull their arms from the sockets--we got to bowling. Since the bumpers were up, I thought we were headed for a stress-free game.

Wrong!

Well, kind of. The first game actually went pretty well. Sky, Pink, and Sky's friend from school had a pretty close game. Pink scored two spares and Sky a strike. All might have been perfect had it not all come down to Pink P's final ball. Because, on that final ball, she rolled a highly improbable spare, moving ahead of her brother by a mere two points, snatching the victory from his exuberant grasp. To add insult to Sky's injury, because she "spared" on the final ball, she got to roll one more than he did.

To Sky, who was only beginning to grasp the nuances of the game, this was simply too much. I could see him beginning to come unhinged, so I made a quick and ultimately fatal split-second decision. I declared we should play another game, figuring he had a good chance of winning the second game.

After all, how lucky could Pink P be?

Oh, you laugh, surely by now Moe knows better than to tempt the fates like this. Surely she knows better than to rely on the laws of probability.

You're right, I should have known better.

But, I didn't.

And on the second game, Pink P bowled a 111. That's right, on her second ever game of bowling, my twirling, prancing, ballet-loving four year-old daughter broke one hundred.

Sky lost it. And he couldn't regain it. He yelled. He pinched his sister. He cried. He flailed about. He angrily hurled his ball down the lane.

And I failed to stop it. I tried soothing him. I tried reasoning with him. I tried reprimanding him. I tried giving him squeezes for compression. I tried removing him from the situation. He weighs over 60 pounds now. When he loses it, I can't contain him. I can't keep him safe, and I can't really keep him from hurting others.

And it makes me furious.

In the end, I gave him my iPhone and he was able to zone out playing a marble labyrinth game. To the observer, I'm sure it looked like I was rewarding absolutely horrendous behavior with video games. Awesome parenting, lady. Way to go!

The iPhone game got Sky back to a place where he could hear what I was saying. He managed to tell his friend, "Good game," even if he didn't entirely appear to mean it.

But I left the bowling alley feeling utterly defeated in a way I've felt so very many times before.

Crestfallen.

But way more than that.

Once again, I'd failed to protect Pink P. Instead of being able to celebrate her accomplishment, we had to do damage control. Instead of joy, we had fear and sadness. Pink says she doesn't mind, that she understands. But I doubt it. How can anyone understand the barrage that is life with her brother. I don't.

I have no doubt that Pink P will be okay. She's got spunk and determination and sheer grit. She's also got a spring in her step, a wiggle in her behind, and the most infectious laugh. And for all these things, I am very, very grateful.

But, for the other stuff, there are no words.

Another Day, Another Intervention

I recently heard a story about the positive effects of yoga for kids on the autism spectrum, so in typically frugal fashion, I bought the cheapest kids' yoga video I could find. It was an actual VHS tape, new for only $2.48. Last night, as I made dinner, the kids tried yoga. (Amazing, right? I not only kept them from bugging me while I cooked but also encouraged mediation and exercise.)

When I bought the video, I expected to see this:

Instead, I got this:

At least I'm only out a couple of bucks.

Sky and the Art of DIY

Sometimes when I walk into the play room, this is what I see.

And it used to be that something like this would really annoy me. I mean, with all the toys and other stuff the kids have to occupy them, why must they take apart the sofa?

And then I learned about sensory processing disorder and what it means to need a little compression now and again. Temple Grandin had her cow squeezer. We have this:

Frankly, I'm glad Sky found an alternative to having a huge contraption in the middle of the play room. A weighted blanket might also do the trick, but they're expensive! And my DIY attempts were a dismal failure. If you figure out how to sew compartments into a blanket so that hundreds of navy beans stay in place, please let me know! And, then, please tell me how I can wash a blanket full of beans without something going terribly, terribly wrong.

Oh, just in case you missed it, the side-by-side (AKA "dummy") version:

(Click to enlarge)

WTF Vermont Curry?!?!!

Now I don't usually use foul language, but seriously who ever heard of peanuts in Japanese curry? Not me, obviously! Peanut butter is not at all popular in Japan, and aside from a few bar snacks, you rarely see peanuts, period. So, why would it occur to me or any other parent to a kid with a severe peanut allergy to check the label on the Japanese curry?

The good news is that Pink P is fine. The bad news is that even though she complained of CHEST PAINS, I told her to get an ice pack (her panacea of choice, along with the princess bandaids) and sent her to bed. In my defense, Pink P is known for melodrama and overreaction. I can't count how many times we've discussed the story about the boy who cried wolf. Just in case, I gave her an albuterol treatment, thinking she might be headed into an asthma episode.

I did not, however, break out the epipen. Why would I? We don't have any peanuts in the house, and if we did, she knows enough to check with someone before eating anything new. So, instead of keeping her safe, I made her eat the curry, which she doesn't really like anyway, and then sent her to bed without realizing she was having an allergic reaction to it.

Thanks a lot Vermont Curry. Thanks for once again making me feel like the shi**iest mom on the planet. And thanks, too, for setting off all of my panic sensors so I can never let my kid eat anything ever again without being totally paranoid.


**Oh, and consider this your PSA: VERMONT CURRY HAS PEANUTS IN IT.**

My Totally Unsolicited Parenting Advice

A friend of mine just learned she'll start fostering two young girls in a few days--after years of planning and months of waiting, she's now experiencing those moments of sheer terror we all feel when we realize we're about to become parents and we have NO idea what we're doing.

Her story got me thinking about what I've learned as a mom and what advice I have to give (not that she needs it or even that she asked for it). So, here you go. My totally unsolicited parenting advice.

1. Establish routines organically and from the very beginning. Structure is key.

2. It's good to give them choices, but limit the choices to things you're ok giving them.

3. No dyes, no processed food. If you don't have it, they won't expect it, and life's a whole lot better without that crap.

4. Have plenty of band aids, preferably ones with pictures.

5. Don't assign chores. Instead, instill a sense of team and working together for the good of the family.

6. Teach them to see what needs to be done around the house and to do it. Mine come into the kitchen and help get things on the table without being asked. It's heavenly.

7. Remind them how lucky they are to have each other. Sometimes this keeps them from trying to kill each other, but not always.

8. You can really never have too many books, sketch paper, crayons or markers. But you can have too many toys that make noise.

Some of the kids' books. You can never have too many books, but you can definitely have too many skeletons.

And even Stow has his own set of books to tear up read.

9. Praise and encouragement go a long way. So does giving your kids the benefit of the doubt.

10. If you feel like you're completely out of your element and that you're flying by the seat of your pants, you're in good company. That's how we all feel, all of the time. Or at least most of it.

This is what happens when Sky gets his hands on some markers and some paper.

A Funny Thing Happened...

We took the kids to a koto** concert on campus (a.k.a. the place I work, filled with my students and my colleagues). Not so very long ago, we had easy access to koto music, so the kids could recognize the sound and the instrument. Not so much these days, though. When I heard about this concert, I realized it might be one of the few chances my children might have to see and hear a koto. So even though the concert started later than their normal bed time, we dressed them up and made our way to the university auditorium.

Part of my motivation for bringing the kids along was the fact the person who organized the concert worried there might be a small turnout. We're nothing if not strength in numbers, so we brought seven seats' worth--our clan plus Sky's friend William and William's mom.

I'm not sure, really, what possessed me to do any of this. If you've been reading this blog for any length of time, you can imagine all the things that could've gone wrong. I mean, sometimes we can't even make it to the garage before a major catastrophe befalls us and forces us to turn around and go back into the house to regroup.

Miraculously, on this particular night, we made it all the way to our destination without incident. In fact, we made it into the building, to the auditorium, and into our seats all without anything going wrong. It. Was. Amazing. Transcendental, even.

Once I got everyone settled, I looked up. Then, and only then, did I realize two things. First, the place was packed, and second, practically everyone was there. Directly in front of us, the provost, and behind us? A retired president of the university who also happens to be a specialist in my field. Suddenly, the sheer idiocy of my plan hit me. And, we still had at least 10 minutes until the concert would start. What. Was. I. Thinking?

Those were the longest 10 minutes of my life. The kids squirmed. They giggled. They competed for William's attention. Twice, we changed our seating configuration.

But, they didn't fight. No one cried, and no embarrassing personal information was shared.

They actually held it together all the way until the music started, and then were quickly enraptured by the whole experience. The musician combined her twenty-first-century compositions with some premodern favorites. It was ethereal. It was magic. And, it almost immediately put all three kids to sleep, leaving William stuck in the middle a bunch of snoring mini-MOEs. At the end of the two-hour concert, they all woke up without a fuss, walked to the car, then into the house and straight to bed also without a fuss.

In other words I took my kids to a grown-up event past their bedtimes, and nothing went wrong. I suppose there are all sorts of lessons for me to learn about trusting my kids to do the right thing and believing in the benefit of all the interventions we've been pursuing.

I don't know about those things, but I do know I need to get a copy of that koto player's CD.



**The koto is a traditional Japanese instrument with 13 (or more) strings and made from paulownia wood. Here's a link.

Photo adapted from Wikipedia.

The World According to Pink P

I'd say this pretty much sums it up:

(And she's never even heard the John Mellencamp song...)

Are You SURE We're Related?

We got to school a little early on Friday, so Pink P's teacher had a chance to corner me.

Teacher: Have you heard about her "boyfriend?"
Me: (Sigh) Yes.
Teacher: I just wanted to let you know that they were holding hands during naptime, so I separated them.
Me: Thank you.
Teacher: She still has a problem with blowing kisses though. So maybe that's something you can talk about at home?
Me: Of course.

Those of you who know me can understand why I am wondering where this kid came from. If teachers talked to my mom, it was usually about how I beat up a boy on the play ground or didn't try hard enough to make the other kids like me. Just the other day, I was reminiscing about the fact that I was essentially kicked out of Brownie Scouts. Apparently, my scoffs and refusal to glue doilies onto empty coffee cans was the last straw. I don't remember. I just remember wishing I could be home playing basketball or building forts in the woods.

In the last 48 hours, Pink P said all of the following:

» I can't wait to go to school so I can be with my boyfriend.

» (To a complete stranger) I just love your hair.

» (Again to a complete stranger) What a pretty bow!

» Can I take my unicorn with me?

» I don't want to wear pants! I want to wear a dress!!!

» This needs more glitter.

» They like it when I blow them kisses!

» He thinks I'm cute.

» I never have enough money to go shopping.

» Why can't I paint my fingernails? I'm old enough!

I don't think I've ever, in my entire life, uttered any one of these phrases. Ever.

***

I tried to intervene, I really did. And when I did, we had the following conversation:

M: Pink, I don't think Chase thinks of you that way.
P: Yes, he does. He's my boyfriend. He loves me and I love him.
M: But when we saw him the other day, he seemed kind of annoyed by you. I think he just wants to be your friend.
P: (in tears) Mommy! That's mean! You just don't understand.

***

Now, I know you think I am overreacting, but look. She drew these this morning:

I admit it. I'm worried. Because she's right. I don't understand. I actually have no idea what she's talking about. Probably because my brain went into panic shutdown mode and hasn't been able to reboot since.

Proof Once Again that These May Not Be My Children

I've long believed that my kids' artistic talents are the clearest sign they may not be my children. I can't draw.

Ren can.

You've seen the awesome cakes Big Sissy designed, and you know I'm not her biological mom, so there. More proof.

In the past 15 hours, my children created these:

Tokyo Towers by Sky, Age 7. (Yup, that's Tokyo Tower and the new Sky Tree.)

Anpanman by Pink P, Age 4. (Google "Anpanman." You'll be amazed at how accurate this is, except of course for the signature pink instead of red.)

And, Titanic by Sky, Age 7. (Check out the detail. People are plummeting to their deaths, and he's NEVER SEEN THE MOVIE. This is just based on a description he heard from a friend at school).


Meanwhile, I'm left to wonder whether any of my genes made the cut.

Welcome Back, Ren (Phew)!

So Ren is starting to feel better three weeks after his second major back surgery in five months. And, fortunately, recovery seems to be a little faster this time, despite the fact it was a much bigger surgery.

The kids are ecstatic to have daddy back. Because instead of this:


They get this:








And this:




Which reminds me of something that has been puzzling me for awhile now. What's with the bento craze? When I hear the word bento, I think of the boxed lunches that are part of every day life in Japan. When I first got married and we still lived in Japan, bentos were the bane of my existence. Why are they so popular here? Clearly the word doesn't reference the same thing, and it confuses me.

But, here, since I know many of you probably have a love for bentos that I just don't share:



A gratuitous bento box picture just for you!

Dear TOMS

I know. I know. I know. It's been forever since I've written a "real" post, and instead of writing one today, I'm posting another letter of complaint.

To be honest, life's been a bit hellish lately--lots of things out of my control. But what I CAN control is my response to the little injustices.

Just think of these letters as free therapy.

Oh, and did you know that TOMS doesn't actually give a free pair of shoes to a child in need when you buy a pair? You can read about it in the letter.

______________________________



Dear TOMS Customer Service Supervisor,

This summer, I purchased our family's first pair of TOMS, a pair of children's size 11, red Glitters, for my 4 year-old daughter. The day she started wearing the shoes, the glitter and red color started coming off the toe. Within a few hours, the shoes had two frayed white toes and looked completely tattered and worn. After being told by the retailer that they could not refund my money for the defective shoes, I contacted your company directly hoping TOMS would replace the pair since the problem was clearly with the product.

When I inquired with your customer service, though, I was told that TOMS would not replace the faulty shoes because I did not buy them at an "authorized" TOMS retailer. I find this response to be problematic for several reasons. First, unless I know to go to your website and record the list of authorized dealers BEFORE making my purchase, it would be impossible for me to know whether or not the retailer selling your shoes is authorized. Isn't it funny how retailers don't post signs saying they aren't "authorized" to sell something? It's also "funny" how customers assume the retailer is authorized to sell something since they are selling it.

Second, TOMS unwillingness to provide exchanges for faulty shoes indicates that TOMS is not willing or able to stand by its products. Regardless of where I purchased our shoes (or ‘how long they were in the warehouse’--the reason given for why you couldn't provide an exchange pair for our shoes), your company should be able to back its shoes and replace faulty products for customers. In fact, you should WANT to replace bad product so you don't have a bunch of customers walking around wearing tattered TOMS.

Third, it indicates you don't have a very effective (or customer-friendly) business structure. If you can’t guarantee, or aren't willing to replace, shoes purchased at the myriad non-authorized dealers where they are sold, perhaps you should stop allowing them to be sold there.

Finally--and this is the part that really irks me--in the e-mail I received from your customer service representative, I was told that our shoes, since they were not purchased directly from TOMS or an authorized retailer, did not qualify for your One-for-One program. Everything I've seen from TOMS proudly announces: “With every pair you purchase TOMS will give a new pair of shoes to a child in need.” There is no asterisk next to this statement. I checked. Nowhere on your website or in any other TOMS promotional material I've encountered, including the voice-mail greeting I heard when I called customer service today, does it say that the shoes have to be purchased at an authorized dealer. To be fair, I did find mention of this stipulation buried in the returns section of the TOMS website--not an obvious place, you'll agree. The problem is that TOMS promotes its shoes by telling customers that EVERY pair sold means a pair of new shoes for someone in need, and this is blatantly false advertising. Your advertising and public relations messaging should be changed to reflect reality.

As a customer, I feel doubly betrayed. Not only was I not supported in my effort to replace our faulty pair of TOMS, but I also learned that the shoes I purchased were not part of the One-to-One program. It’s heartbreaking to learn that TOMS' discussion of social conscience is more public relations ploy than social activism. As I’m sure you know, many pairs of TOMS shoes are purchased by people like me, hoping to help those in need, and it's shocking to learn that our purchases are actually only helping the company's bottom line.

I work at a university particularly committed to social justice and community service. Many of my students and colleagues, not to mention my kids' friends and classmates, wear TOMS because they believe that your company has a socially-conscious business platform and that you care about providing quality product. I admit it, that’s why I bought our pair of TOMS despite the fact they were much more expensive than what I usually spend on kids shoes. I hope that none of my friends, colleagues, students or blog readers makes the same mistake I did, so I will freely share the details of my experience with them.

As a fairly important side note, I'd like to also point out that my experience interacting with your customer service was also less than pleasant. After the first e-mail inquiry I sent through the TOMS website, I got numerous e-mails telling me I would eventually receive a response, but the actual response was slow to come and generally unhelpful. Then, today, weeks after I received an e-mail telling me that my shoes would not be replaced, I received FOUR unsolicited, automatically-generated e-mails from TOMS thanking me for my message and telling me I would receive a response shortly. This is perhaps the height of poor customer service--to refuse to help someone and then send unwarranted e-mails reminding the person just how unhelpful you are. For the record, I also tried online chatting with one of your representatives, but she left the chat mid-conversation and no one else picked up my chat, despite the fact I waited for quite some time. And when I called your customer service line to ask where to send this letter, it took your representative at least five minutes to track down that information.

I do hope that you will work to improve your customer service and make infrastructural changes that will enable you to stand by your product no matter where it is sold. More importantly, I hope you will edit your One-for-One campaign so that it reflects the reality of your business practices. Finally, I’d really love it if you would replace my daughter’s size 11 red Glitters.

Sincerely,

Mom on the Edge

_______________________________________
UPDATE: As of December 16, 2012, still no word from TOMS.


You can see the outcome of an earlier complaint here.

Mom in Two Cultures: The Comic Version

I've been messing with Comic Life in preparation for a new semester and perhaps some super cool student assignments. As a result, I present:

Mom in Two Cultures: The Comic Version





(Click to enlarge image. Created with Comic Life 1.3.6. www.comiclife.com)

This comic references the following posts:

Phalluses and Other Inapprpriate Symbolism
The Family Portrait
Sky in Motion
Back to School
Halloween is Coming Panic

Back to School

School started today. Like everyone else, we went on a wild goose chase for school supplies: washable markers for Pink P but not for Sky. Eight-pack of crayons for Pink P instead of the standard (and much cheaper) 24. Four reams of copy paper and three containers of disinfectant wipes between the two of them.

Normally, I forget to start early and find myself desperately buying, and then sharpening, ten number 2 lead pencils in the wee hours of the morning the day school starts. But not this year. This year, in anticipation of Ren's back surgery, I got everything early. So early, in fact, I forgot that I'd gotten it. Then, I inadvertently bought everything again. Apparently, I have an uncanny ability to remember everything on both supply lists and no ability to remember I bought the stuff already. There's nothing I love more than another trip to the store just to return stuff I bought twice. Really.

When we roll into Sky's classroom for the first time, we come with a little more baggage (and a few extra supplies) than the other kids. Each year our list of "extra" supplies grows as we become more adept at figuring out Sky's sensory issues. Here is some of the gear he'll be using at school this year:




(Drat! That's supposed to say "The Frugal Mom's Guide to a Weighted Vest," but PSE won't let me fix it. And I don't have time to start over! Sigh.)

Sky and I always meet with his new teacher a few days early. This gives us a chance to drop off (and explain) our Sky gear. It also gives him a chance to quell his anxieties about the first day and me a chance to give his new teacher a crash-course on life with Sky. I used to try to be more "hands-off" and less "helicopter-y." I'd love for his teachers to organically come to understand how Sky ticks, but frankly, that takes too long. So this year I went "all in" the first chance I got. I was unmistakably clear with his teacher about about what she's up against.

He will become overstimulated.
He won't always hear you.
He will interrupt.
He won't respond well to frustration.
Part way through the semester, he will regress, and when he does, you will feel like everything you tried up to that point was useless.
It wasn't.
You know, two steps forward, one and a half steps back.

Welcome to my world. I hope you enjoy the ride.

A Thousand Tiny Bombshells

Stow had his first speech appointment today. In usual fashion, he was happy, curious, and engaged with the therapist who visited our home. He pointed and grunted and squealed and vocalized some vowels--pretty much his entire repertoire of communication.

Toward the end of the session, against my better judgment, I asked, "So where does his current communication fall? What age is it comparable to?"

"Six months," the therapist responded.

Six months.

Stow's fourteen months. Though you might not know it. He doesn't really talk. He doesn't really walk. The therapists tell me it doesn't mean he's on the autism spectrum. But he's got low muscle tone, motor planning issues, and speech delays. People tell me not to worry. That I am overreacting, maybe even projecting things onto Stow that aren't really there. I hope that's true, but somehow, I doubt it.

It feels like the last fourteen months have been filled with a thousand tiny bomb shells. Some of them just words. Harmless words. Words like: "Six months." Each phrase seems so innocuous. Individually, none of them are catastrophic. But combined, they threaten to destroy our very sense of well being, our ability to right our ship and navigate our way into another day.

But, then, just when I am about to be overwhelmed with this nagging sense of despair, I encounter tiny glimmers of hope. My children giggling. A bright blue sky. A good night's sleep. A joke from Sky. A picture from Pink P.



And I decide that maybe, just maybe, everything will be okay.

Who's Got the Skillz?

Ren told me not to post this:



He said if I posted it, you all would know I couldn't sew.

I admit it, I can't sew. Well, that's not entirely true. If pressed, if a dire situation called for it, I could sew. It wouldn't be pretty, but I could do it. But the beauty of it is that I don't have to. Ren likes to sew, and he's totally willing to take on a challenge (in this case, shortening curtains to fit the living room windows). I don't, and I won't.

So it turns out we're perfect for each other.

In case you're worried, I'm not without skills. Check this out:



That's right. That's some of my special homemade toddler mush: daikon radish, carrots, seaweed, peas, and bonito flakes, all mixed with tri-color rotini.

The babies, they love it.



Apparently, it's positively irresistible.

Dear Swim Instructor

Dear Swim Instructor,

You may have noticed my children didn't sign up for your lessons the last two sessions. If you wondered about it at all, perhaps you figured we stopped because the kids were tired of lessons or because we were busy with other activities.

But that's not why.

To tell the truth, Sky wants to keep taking lessons. He's proud of his ability to swim and loves being in the water. But, I just can't do it. I can't leave my kids in your hands, even though I am sure that swim lessons could benefit them both greatly.

The thing is, the last time we were there, Sky had one of his days when it's impossible for him to keep it together. He was loud, had a hard time following instructions, and had trouble minding the personal space of those around him. In other words, he had a pretty typical day for a kid with an autism spectrum disorder. It was difficult for me to watch him that way. It can be frustrating to see him miss out on opportunities because he's lost in his own world and heartbreaking to see how other people respond to him when he's so out of sync.

Do you remember what you said to me that day? My guess is that the conversation has long since left your memory.

You said, "Phew, I'm glad I only have him for an hour. I feel sorry for you!" Your facial expression (you were smiling) indicated you were trying to be light, maybe even funny. You know Sky is on the spectrum, though, and even if you don't quite get what that means, you should be able to imagine that he faces challenges that affect his behavior and make it difficult for him manage certain situations successfully.

Your comment made me wonder. I wonder if you would tell a mom whose kid is visually or hearing impaired that you're glad you only have to spend an hour with her kid? What about a mom whose kid has Down's Syndrome or whose kid is in a wheelchair?

ASD is with us 24 hours a day, every single day. It greatly impacts our lives. It limits Sky's ability to demonstrate his many talents. It cruelly allows him to seem "normal" when he's actually completely bewildered by the onslaught of input from the sensory, verbal, and social cues all around him. We invest much of our time and resources toward helping him function in a world that he is not suited for. It's exhausting. So you're right. You're lucky you only have to "deal" with him for just an hour out of your week. You're lucky you can go home to a family not burdened with autism.

I get that you probably don't really understand how my kid ticks. I get that he can be annoying. I even get that working with him can be demoralizing at times. But please don't dismiss him and his challenges. And, for the love of God, please don't offer me your pity.

Sincerely,

Mom on the Edge


PS -- I know you've been teaching swimming for awhile, but since 1 in 88 kids today has an autism spectrum disorder, it might not hurt to educate yourself about it.