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.