Update Number Twenty-seven Zillion

Okay, not really, but it's been awhile since I posted an update on all of our various endeavors, so, here you go!

It has been 278 days since we moved, and, drum roll please........ I finally managed to hang pictures on the walls in Sky's room! The quality of these photos isn't great because it turns out that "midnight blue," or whatever the heck that color on the walls is called, doesn't work well when sunlit and then auto-smart-fixed on Photoshop. But you should definitely ignore all that and admire my wall-hanging skills.

You should also know that Sky cleaned his room just so I could take and post these pictures. He hopes you like his staging.

Second, after much pain and suffering (and approximately a bajillion phone calls), we may have finally managed to get Sky hooked up with some OT and behavioral therapy. It. Was. Not. Easy. And, it's way too early to see how it will go, but it's a (desperately delayed to the point of being ridiculous) start.

Did I mention that the new OT is hippotherapy? It's pretty awesome because it forces Sky to (naturally and willingly) keep tight control over his various impulses and sensory responses.

And the behavioral therapist is a play therapist--also something we didn't have access to before we moved. Again, the jury's still out on the effectiveness of this, but if nothing else, they all love the sand table. (Sorry for the fuzzy picture--this is what happens when I try to photo under cover).

Finally, it has been 498 days since we went gluten free. I've written about the ups and downs of going gluten free here, here, and here. But what I haven't told you is that since we went GFCF, Pink has not had to go to the hospital for her asthma even once. She has also backed off the serious meds she used to take. Now she's just on a mild maintenance medication and only taking half of the usual dose. Plus, she's needed her emergency inhaler only 6 times in the last year. Pre-gluten free, Pink was hospitalized twice a year and on steroids at least once every three months. She needed her emergency inhaler almost daily. The post-GFCF change is nothing short of miraculous.

Gratuitous bento shot.

Gratuitous bento shot. (These two, I made).

Stow, meanwhile, no longer sports a bloated gut, and Sky no longer randomly vomits. There are behavioral and developmental changes going on here, too, but, to be honest, even without that, the reduction of asthma emergencies and random yet persistent stomach issues has improved the quality of life at our house tremendously. Gluten free is a hassle, and it's expensive, but I am sure it has paid for itself many times over just in the number of averted trips to the pediatrician or ER.

Gratuitous bento shot.

Gratuitous bento shot (and these two were made by Ren, a.k.a. Mr. Overachiever)

Open Sesame--Or--The Lamely-titled Post About Nothing Terribly Earth-shattering

After months of wondering, waiting, and worrying, waiting and worrying and testing poop, and, after a traumatic (for me, not for him) combined colonoscopy, endoscopy, and cystoscopy, the results are in. We finally have a better idea of what's going on with Stow.

The good news? Actually we have quite a bit of good news. Stow's gut issues don't appear to be Crohn's or Celiacs. It's also not C-diff. Other good news? He's finally gaining weight--4 pounds in 6 weeks after gaining zero pounds over the previous five months--and he's catching up in other ways, too. He's starting to talk (finally) and even putting together some simple sentences. His gross motor delay is hardly noticeable, especially when he's scaling furniture and wrestling his older siblings. He's still got some delays and sensory issues, but compared to a year ago, he's a totally different kid. Of course, there's that whole winter-failure-to-thrive thing that seems to happen for Stow from late October to early March each year when he stops gaining weight and fails to develop (we're still trying to figure this out), but where we are now, in mid-May, is a pretty good place to be.

The bad news? We may have figured out the source of Stow's malabsorption and generally crazy diapers: He has a sesame allergy. "So what?" you ask,  "How many toddlers eat sesame anyway?" And, in a way, you're right. Most toddlers don't eat a lot of sesame. Our toddler is not like most, though. He loves Japanese food, and more of it has sesame in it than you might think. Ironically, avoiding sesame may prove to be more difficult than removing milk and gluten and staying away from peanuts. The only thing that would be harder (and I KNOW I'm jiinxing myself here) would be a soy allergy. While sesame hides in a lot of Japanese dishes as seasoning, soy is everywhere. Miso soup, soy sauce, edamame, tofu, and soy milk are soy regulars in our Japanese repetoire. It's also the substitute of choice for most dairy free products. When a soy allergy shows up, we're screwed.

Now, I'm not naive enough to think sesame is the answer to all of our problems. I'm not totally convinced there isn't something else going on somewhere between Stow's gut and his brain. We have enough clues to support the paranoia that rattles around in the back of my head. And, we still need to figure out the winter lull that seems to happen every year. So I have every intention of proceeding with caution, keeping an eagle's eye on Stow's development (and on his poop). But, for now, at least we have a place to start fiddling. And, you know what? His poop looks better already!

So that's what's up with Stow. Let our experience serve as your PSA: Allergies often don't look like we think they should. We think we will see swollen eyes, itching, runny noses, and tummy aches. But, sometimes what we see are behavioral issues, developmental delays, general poor health, and funny poop. By the third kid, I should know to suspect allergies. Funny how I never learn.

Things My Kids Eat That Yours Probably Don't

One of the benefits of being a bicultural family is that Sky, Pink, and Stow have been exposed to a wide, some might even say extreme, variety of food. Since Ren is a better cook than I am, and since I basically learned to cook in Japan anyway, nearly all of our dinners and about half of our lunches are Japanese.

I realize may be going out on a limb here, but I am guessing that your kids don't eat some of these Moe Family favorites:

SEAWEED AND SEA KELP 

Once we start to introduce table foods, the first favorite foods for all of them was wakame (sea kelp). Ren is convinced it's the perfect food for a growing baby. He may be right. Wakame is  low in calories or fat and high in things like calcium, iron, iodine, magnesium, and folate, not to mention several different vitamins. The most common usage of wakame for us is in miso soup.

Dried wakame (before it's reconstituted)

The kids also like good ol' seaweed. It comes in individual packages so they can take it in their lunch and wrap it around their rice balls.

Yummmmmm.

While all of our kids love wakame and seaweed, only Pink P is a "dai-fan" (super fan) of arame. She would eat it every meal if we let her. Between the arame addiction and the princess fetish, I sometimes wonder if she's my kid. But then she stomps her foot and digs her heels in to fight a completely pointless battle about something that's only significant to her, and I realize she's just like me.

Arame--Pink P's Obsession (photo credit: veggieatlas.com)

TOFU

The kids also all totally dig tofu, which is awesome because then we could avoid that whole pureed meat phase when they started eating solids and needed the protein. Meat should never, ever come in a jar. I don't care what anyone tells you. Tofu is high in protein and low in saturated fat. It has been shown to lower cholesterol. Fortunately, no one has turned up allergic to soy yet, though it may just be a matter of time. Oh, and when you buy tofu, organic is best, but if not organic, at least make sure it's non-GMO certified.

Miso soup with tofu and wakame.

ALL KINDS OF FISH EVEN THESE LITTLE BABY ONES

When I first started getting interested in Japan, my mom joked that it'd never last since I absolutely hated fish. Since the Japanese diet is very much fish based, she figured I'd either starve or find another way to spend my time. I hated fish so much, I couldn't even be in the house when it was being cooked.

Fortunately, things have changed. We now eat fish regularly (sorry, Mom!), but not too often (and not when pregnant), just to be on the safe side.  Like tofu, you should be aware of where the fish came from before you eat it.

The kids love salmon, but they also seem to indiscriminately love of all things fishy, including this:

Shirasu -- baby sardines (not one of my faves, not by a long shot)

And most of this:

Though no one, I repeat no one, can convince them to eat mushrooms.

NATTO

Two out of three of my kids also love natto, which according to my informal research, is statistically impossible. Families are usually evenly divided over the natto question. Every seventh-grade class I taught during my time in Japan was evenly divided as well. I know this because one of the first grammar points I taught each year was "I like ~~." ("Do you like natto?" "Yes, I do." "No, I don't.") Given the number of times I asked or was asked this question, it's obviously a contentious debate. And yet, and yet, in my family 3 (and possibly 4) out of 5 of us, love natto. I am firmly in the "no" camp, and Stow is still too young to vote--mostly because it's hard to find so we haven't had any in the house since he started eating table food.

Photo credit: seriouseats.com

What is natto, you ask? It's a sticky mess of fermented soy beans that folks usually eat with breakfast, though goodness knows Ren would eat it three meals a day if he could. Fermented = stinky. But actually, it's not the smell that I don't like. It's not even the sticky. It's the fact that when you chew it up, it expands in your mouth. My like/dislike guidelines for food are pretty simple: First, the food must be dead and no longer moving. Second, it shouldn't be chewy (unless it's candy such as licorice, taffy, or chewing gum). Third, if it is a meat, it should not too closely resemble its living form (so no heads or eyeballs, please), and fourth, it should never, ever multiply or expand once I put it in my mouth.

You'd be surprised the number of times one or more of these guidelines has been tested. There was the time the squid tentacle flopped over the edge of the plate and started moving up and down as it made a last-ditch effort to escape. There was the time a guy plucked out the fish's eye and popped it into his mouth just before I could get to it (darn!--and by "darn" I mean "OMG! Did he really just do that?!!?!!!!"). There was the time my mollusk tried to crawl off the teppan** when it started heating up. There was the raw chicken. And, there was the broth full of tiny swimming fish that was harder to eat than it looked.

SUSHI

And, of course, my kids like sushi. The stuff pictured below is one of Ren's creation. If they had their way, Sky would eat kappa maki (cucumber rolls) every day and Pink P, sweet potato rolls. But if you twist their arms, they will eat some of this stuff, too. Stow? Well, Stow eats just about anything.

In the end, it turns out we're lucky that the kids are adventurous eaters. It lets me pack lunches like this:

And it also makes it a tad bit easier to deal with our newly embraced gluten-free, casein-free diet. Not sure what I would have done if they only liked chicken nuggets, pizza, and mac-n-cheese!



**Teppan -- metal griddle used for cooking

In the End, It Was the Fruit Loops

In the end, it was the Fruit Loops. More than thirty of them, strung into a necklace. But then again, it wasn’t really the Fruit Loops at all. It was too many days out of routine. Too many snacks that he couldn’t eat. And then, finally, the realization that things haven't really gotten all that much easier. In short, it was the moment he recognized that, despite all the interventions, he still really has a long way to go.

OMG, you guys, I am so tired, I can't even spell "fruit." Sigh.

So, then, he wept.

He wept for how hard it is to remember what he can and can't eat. He wept for his inability to keep it together when things get too loud, or too exciting, or too "fun" around him. He wept because he really is doing the best he knows how, and still it's not enough. He wants to be able to anticipate how any given day will go and how he will react to what the world throws him, to feels a sense of control over himself in any given environment. But, he can't. 

He just can't.

Don’t get me wrong, we’re thrilled with the progress he has made. It took fifteen days into post-Christmas break for Sky to fall apart. That’s approximately 14 days longer than in post-Christmases past. But, to be honest, I’m not sure what our goals should be at this point. Does he learn effectively? Yes. Does he have friends? Yes. Is he able to express his feelings and understand when others express theirs? Generally. But, when he starts to fall apart... 

When he starts to fall apart, he just can't keep it together long enough to put into practice one of the many interventions we've introduced and explored.

Today the OT told me Sky had mastered two of his goals since the last evaluation. What goals? I asked. He can articulate what he needs to do when he gets too over- or under-stimulated, the OT explained. Yes, I said, but he could already do that. The problem is with the implementation. 

And, implementation is everything. 

It’s one thing to know what you should do when class party meets unexpected snack meets anticipation about playing video games later, but it's a whole other thing to be able to separate yourself from the moment and do what needs to be done to get through it. And we're just not there yet.

Worse, I think we all fear that we may never be.

Original image from: http://kiboomukidssongs.com/preschool-craft-100th-day-of-school/

Snack Time

Ahhh, snack time. The idyllic moment  of childhood when kids pause from their energetic play to fill their tummies with their favorite treats and reflect on their day.....That is, until you go gluten** and casein-free. Then those harmless little snack times can threaten to get the best of you.

Until now, I've been able to convince Sky and Pink that their dietary limitations weren't a big deal. I compensated for a lack of dairy in snacks by making homemade ice cream or giving them crunchy granola bars (Sky's all-time favorite), and they were thrilled. Now, though, I'm having a hard time convincing Sky and Pink that rice crackers and corn chips are adequate replacements for their favorites: cookies and cupcakes. When we were just casein-free it was actually possible to find some baked good they could eat. Now, not so much. And the troops are rebelling, people. They miss bagels, the occasional donut, and good bread. 

But most of all they miss spontaneity and variety. 

The good news? I seem to have aced the lunch box challenge (see photo series below). They're more than happy with their rice balls, hummus and veggies, and sun butter and jelly on gluten-free frozen waffles. The bad news? I have not mastered the art of the unexpected snack.

It's not until you embark on a special diet that you realize just how ubiquitous the mid-morning/mid-afternoon snack is. This week alone, I was unprepared for snacks at a play date, Sunday school, and a birthday party. I also didn't anticipate the chocolate candy rewards handed out at dance class and Cub Scouts or the chocolate that accompanied the favors from the pool party. Each time, the parent in charge expressed appropriate remorse for not having viable alternatives for us, and two even offered to buy something different next time, writing down a list of things my kids could eat. (I can't even begin to tell you how heartwarming that gesture is, by the way). Still, that doesn't solve the problem of the unanticipated snack. Sky takes responsibility for and ownership of his dietary restrictions. He sees the value in what we're trying to accomplish. But so many instances where he can eat nothing being offered is demoralizing, even for him.

I know I need to get better at always having a back-up snack on hand. I've already supplied both of their teachers with a bag full of gluten-, casein-, nut-, and dye-free snacks, and I always take some whenever we go out of town. But clearly I need to do more. That, or I need to convince everyone to quit handing out food all the time.



**I know, I know, I know. I just can't resist the fine print: We haven't managed to get totally gluten-free, yet. There's gluten in our Costco-size container of soy sauce, and Sky has a few more oatmeal granola bars to get through. Still, we've seen improved behavior overall--though, he will be the first to point out, gluten doesn't seem to help increase patience for little sisters nor does it help him remember to stop singing at the end of songs when everyone else does. 

#1 This is the part where I try to distract you from the sore lack of compelling content in this post by showing you pictures of the lunches we've made recently. Some of these have appeared on my FB page, so sorry if you are seeing them for a second time.

#2 I forgot to mention that this is a quiz. Try to guess which lunches I made and which ones Ren made. I'll give you a hint--his always look better than mine. Leave your guesses in the comment section if you want.

#3 Like the green beans rolled up in ham? A nice touch, don't you think?

#4 Van's Gluten-free Waffles. When someone suggested these as a bread alternative, I thought she was crazy, but  the kids love them. 

#5 This one may not look like much, but there's cooked fish inside those rice balls.

#6 Reverse-rolled brown-rice sushi with ham, lettuce, and carrots.

#7 "Niku-jaga," broccoli, tomatoes, and rice balls. This is a tricky one since I made part of it and Ren made part of it.

#8 Hummus, veggies, and sesame seaweed rice chips.

You Know This is Just Enough to Jinx Us, Right?

Do you know what this is? It's one of Sky's daily behavior logs. And, do you you know why it's ah-may-zing?

Yes, that's right. Nothing is circled.

Sky didn't have to write his name in the book. This in and of itself is not such a big deal. What's big is the fact that it's the fifth straight day that Sky has had nothing to write home about. That's unprecedented.

Typically, Sky can put together one or two good days before his disruptive and slightly dangerous impulsive, proprioceptive-seeking behaviors (i.e. crashing into his friends)take over. It's not that every day is bad; it's just that he usually needs to be reminded, redirected, and asked to write his name in the book.

But ever since winter break ended, Sky has managed to keep it together. In fact, the only trouble he's had centered on a certain recess cursing incident (link).

Like I said, amazing.

It could be an incredible coincidence, or it could the fact that we went gluten-free just before Christmas. It's too early to tell. Maybe there's something going on with the moon, maybe it's the vibrating pencil (link), or maybe his new Kindle Fire is just the motivating factor he needed. I'm happy enough not to know what exactly has led to this positive streak,** but I would like it to continue, oh you know, like, forever.



** Good for you! You should always read the fine print. It's not entirely true that I don't care what caused the sudden change in school-time behavior. I mean, gluten-free stuff is expensive, hard to find, and labor intensive, so if it happens not to be the gluten, I'd kinda like to know because it sure would save me some time and money.

Back to School Again

Sky went back to school this week, so we've been talking and thinking about ways to improve upon last semester. Here's what he took to school with him on the first day back from break:

(Yes, I know the snacks aren't organic, but do you know how hard it is to find casein-free, gluten-free, organic snacks in the rural Midwest?).

Click here to see some of what Sky took with him on the first day last fall.

*******

And, here is an excerpt from a series of e-mails I sent to his teacher in preparation for the start of the second semester. I wonder if those of you out there with ASD kids have to explain things like this throughout the school year, too? I feel like I am telling them the same story over and over and over again. I can't decide if I am being an overbearing jerk or persistently helpful, but I want to do whatever I can to make sure Sky feels like he is being heard. And the good thing about his school is that the teachers are willing to implement various interventions as long as I keep educating them about what works.


Dear Mrs. N,

Before the break, I noticed that many of the incidents recorded on his daily behavior log had to do with blurting, speaking inappropriately or out of turn, and crashing into others. These are certainly behaviors we want to help him better control, but they are also the very things his PDD-NOS makes difficult for him. It makes sense to have him to write his name in the book to remind him about/alert him to the inappropriate behaviors, but taking away his recess time is counterproductive for several reasons.*

First, like many other ASD kids, Sky doesn't respond well to negative reinforcement in the form of punishment. It merely stresses him out without actually changing the undesirable behavior (and sometimes even worsens the behavior due to his frustration and anxiety), particularly in cases where the behavior is related to his issues like blurting, crashing, and poor use of pragmatic language. Second, punishments that make him stick out from his peers can serve to further alienate him from them because he feels even more different than usual. Finally, having Sky miss recess deprives him of much needed stress/energy release as well as important opportunities to continue to work on his social skills. If he must miss recess, is it possible to give him something constructive to do such as reading or maybe even practicing social stories that would help him better manage his behavior in class?

Sky is motivated by positive reinforcement. So, perhaps you could come up with a system in which he gets one point on days when he only gets his name in the book once and two points when he doesn't have to write it at all. Then after he accumulates a certain number of points, maybe he could be rewarded with computer lab time or something else that he enjoys. Something like this which focuses on rewarding the acquisition of desired behavior instead of punishing failures he can't always control should be more effective and is also more in line with current thinking regarding autism education.

*****

Blah, blah, blah. I'm beginning to feel like a broken record, but fortunately, Sky's teachers always seem willing to talk with me and work with me to help Sky regroup and carry on. And, lately, I have been thinking that maybe things with school aren't so bad. I mean, in many ways, Sky's an imperfect egg, so he will always struggle a bit. But much of what he is doing is going quite well. He participates in extracurricular activities with his peers. He does fine academically and seems to have supportive friends at school. And, his teachers seem patient and willing to work with him despite the time and energy he can require of them.

I constantly wonder whether we should keep him in his private school, where classes are small, the teachers are accessible and helpful, and he knows and is familiar with all of the kids in his grade. Or, whether we should move him to public school, which would save us money and give him access to free special education support. He gets some where he is now, but not much. The problem, though, is that there is no guarantee things would be much better in public school. Because he does well academically, I don't know that he would fit the profile of kids who could access more services than he already gets in his current setting. I have a feeling I would have to fight long and hard to get him any support at all, and even then it would probably wind up being more time for tests, placing his desk at the front of the room, and allowing him to bring fidget toys to class (all of which he already gets at his current school). Plus, the public school classes are larger, and he would be exposed to more kids about whom I know nothing. When you have a kid who learns to interact solely by modeling his peers, this is big. It's vital for me to know who his peers are and to have some say over the type of influences he encounters. A private, religious school enables me to do that.

Home schooling is not an option for us, but if you have any suggestions regarding the public versus private question, I am all ears! Please help me figure this out, so I don't have to worry about it so much!


* At Sky's school, kids who have to write their "names in the book" more than once per day lose part or all of their recess. This is something I have to "negotiate" with teachers every year.

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.

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).

Homemade Ice Cream Fail #1

Okay, I'll admit it. I thought I would have soy ice cream success on the first try. And, if you count the fact that Ren liked it and Stow was willing to eat it, I was partially successful. Of course, Ren will eat just about anything.　If it's stale, slightly moldy, or just a tad too alive for my taste, he's okay with it. Given that he eats more than the rest of us combined, it helps that he eats what no one else will (it also doesn't hurt that he's got a stomach of steel). And since Stow has been on a pretty steady diet of all-natural and completely unseasoned veggies, fruits, tofu, and meat, my ever-so-slightly sweetened soy ice cream was a huge hit with him.

I started my ice-cream-making venture (like I start many of my ventures) with an Internet search.  We didn't have any eggs or powdered sugar, so I went with the recipe that called for soy milk, tofu, vanilla, and syrup. Ren and I had misgivings about the syrup but decided to stick (hee, hee, hee, "stick") with the recipe. (For the record, Ren and I were right).

On the bright side, the new ice cream maker worked like a charm. Twenty minutes after I put the blended mess of tofu-like products into the chilled bowl of the maker, voila! Ice cream. But Sky and Pink P weren't having it. In Sky's estimation, "Yuck! It tastes like tofu." Apparently, they like tofu, but not when it's supposed to taste like ice cream. Both gave their half-eaten leftovers to Ren--a first in the history of, well, ever.

So, my initial attempt was essentially a fail, but it totally reminded of my favorite post-hike, pre-hot spring restaurant, Okamoto Tofu. And Okamoto Tofu reminded me of Kurokawa Onsen (onsen=hot spring). And that kind of depressed me, really. I mean, look at these pictures. 

Oh. My. Gosh. The food. Yum.



And then, there's the ice cream...


Now that's good tofu ice cream.

Next time I use the ice cream maker: more sugar, less syrup, and maybe a nice hot spring.


And, if you're ever in Okuni in Kumamoto prefecture, you have to check out Okamoto Tofu (and they're not even paying me to say this, though they totally should).





Images from Okamoto Tofu-ten

Got Milk?

Well, it's taken some time, but we've finally embarked on the path toward biomedical/dietary interventions in hopes of lessening Sky's behavioral issues and Pink P's allergy attacks. Many parents (and some researchers) have found that casein and gluten for kids on the spectrum can cause something akin to euphoria. If you know my kids, you know they really don't need any more of that. So off we go...

Step one toward being gluten and casein free (GFCF): eliminate all dairy. As soon as I committed to doing this, I suffered one of my week-long grilled-cheese-on-rye cravings (perfect timing). We started with dairy because it should be easier to remove from our daily menu and because the results of the diet change are usually more apparent quicker than with gluten-related changes.

To begin, I explained to Sky and Pink P how and why our diet was going to change. I listed foods they could no longer consume--milk, chocolate, cheese, yogurt and ice cream--and then pointed out that we could find some fairly tasty alternatives. I didn't mention all the foods with milk as a secondary ingredient--pancakes come to mind--because I didn't want to trigger a panic meltdown. I still haven't pointed out that pancakes are off-limits for fear of incurring their displeasure during the first weeks of this process. At some point, I totally expect Sky and Pink P to be displeased, but not quite yet.

Then I took them with me to the store and let them choose milk-alternative drinks and yogurt-alternative snacks. We even bought "Italian ice" (a.k.a ice with flavor) because there was no way I was gong to spend $8 on a quart of coconut milk ice cream (incidentally, Ren's impulse buy of an ice cream/sorbet maker at Costco a couple of months ago--it was on sale--looks a bit like premeditated genius right about now). Since milk and cheese have always given Pink P eczema, the kids are already familiar with milk alternatives. They even like some of it.



So far, good. I just need to remember we are now dairy-free and be vigilant when we are out. I also need to speak up the next time Big Sissy visits and wakes up early and makes pancakes because she forgot to read the label on the mix and had only learned about the dairy-free thing 12 hours before.





Image: bitewallpapers.com