Friday, January 28, 2011

Our No-Power Day Turned Out Kind of Great After All

So honestly, even I am tired of hearing me complain here and on Twitter about my power going out every time there is a storm, but what am I supposed to do when EVERY time there is a storm, my power goes out?

I am also tired of hearing myself complain about school being canceled EVERY time there is a storm, but between a teacher work day on Monday and THREE weather cancellations, my kids have been in school for ONE day this week and they're not going tomorrow either.

C'mon. It's not like kids need lights or heat to learn, do they?

I was so saddened last night when my power went out. I got surlier and surlier as the house got colder and colder, with the exception of the refrigerator and all our food, which got warmer and warmer.

When I woke up this morning and our power was still off, I knew that I would have to leave the house or I would FREAK THE FUCK OUT and be unable to claw my way back to sanity. So we packed up a laptop and some DVDs, wrapped a blanket around the mouse cage, and bid the pets good luck and godspeed.

Our plan was to go to a museum and then spend the afternoon watching movies at Alex's office while he worked around us. At some point I remembered about the Lego exhibit at the National Building Museum. Last summer when we went, we spent forever building Lego structures. I was hopeful the same would happen today.

We walked up to the museum just as they were taping up a sign informing us that because of the weather, they would not open until noon—a full hour away. I tried to call bullshit, because they were obviously inside, but the only people who heard me cursing were my kids.

When that didn't work, we killed some time by playing on the giant Allen wrench sculpture outside.

Then my children ran in circles for a little while.

Then I took them to lunch at the Burger King across the street. At this point it was 11:32, so we played Team Stimey's version of 20 questions, which involves hints and, when Quinn is the one taking questions, requires that you ask, "Is this thing something imaginary from the video game you're creating in your mind?"*

The answer to that question is inevitably, "Yes."

Surprisingly, Sam and Jack are remarkably good at figuring out what he's talking about.

* Quinn will be creating Monkey Kong Country when he is 20 years of age. Nintendo, you're on notice.

We were finally granted access to the museum and went to buy our tickets to the exhibit. One of the things I love more than anything in the world is being in buildings that have miniature renditions of themselves inside. The Building Museum is currently one of those places.

They were setting up for an event, which is
why it looks like moving day behind my kids.

If you haven't been to the Building Museum, this is what it looks like. I circled the mini representation of the building, which was inside the mini representation of the building. You can't beat that.

Even Lego Stimey loses kids.

We headed upstairs to our destination, where we spent about four seconds looking at the actual exhibit, which are Lego renditions of famous buildings. Whatevs. We'd seen it. Bins of loose Legos waited for us in the next room! Actually Sam thought it was cool and went back to look after building his own structures for two hours. There is a Lego Fallingwater and now Sam wants to go see the real thing.

Meanwhile Jack built Legos and didn't speak of anything but Legos for two and a half hours. He was in his happy place. I was too. It was the best place we could have ended up today.

This was before the other power-outage/school cancellation refugees arrived.

Quinn insisted on building a car, which was a little bit of a problem, because out of literally thousands and thousands of Legos, I could only locate two wheels. Fortunately, Sam eventually located two more wheels and after the Quinn/Sam fist fight over who got to use all four of them, we had a car.

The car is one of those video game ideas from Quinn's imagination.

Sam, who is the least Lego inclined of all my children, had a blast. He built a house and a lake and helped his brothers build things and spent probably an hour building a tall tower with me and also built a baseball stadium.

I REALLY need one of these rooms in my house.

The tower that Sam and I made was the tallest structure in the room for a really long time. That is, right up until this little girl brought her tower over, put it next to ours, noticed that it was slightly shorter, built it up a little, then put it back right next to our tower and smirked away as her mom took photo after photo of her self-righteous little grin.

This must be how the Sears Tower feels.

Sam was going to make his taller and crush the little girl, but I talked him into letting the small child take the win. Her hubris took her down though, because she kept playing with her building (rookie mistake; you don't play with Legos) and eventually she broke it into many pieces.

That's our stadium on the left and Stimey Town on the right.

There comes a time in every visit to the Lego exhibit when you have to pack up your shit and leave. We meandered around downtown DC, headed toward Alex's office and made both friends and enemies on the way.

Friend: The cute girl that Jack made a catcall noise at who laughed and told him he was cute. (In my defense, I have NO idea where he learned that. I'm going to guess Tom & Jerry.)

Frenemies: The guards at the Department of Justice building who are hella serious about defending their turf from idling cars, security threats, and seven-year-olds (Jack again) who step up on the curb where they stand. On the way out with Alex two hours later, the guards laughed and said, "We remember those boys!!" Good to make an impression on the people with guns.

Enemies: The hapless business people who were unfortunate enough to walk in front of my children when they were kicking snow. Fortunately, most of them don't carry guns. Most of them.

They look so innocent, don't they?

Between leaving the museum and arriving at Alex's office, I got a text from my friend telling me that the power in my neighborhood was on. There is not a lot that is better than getting that information. I imagined my pets at home emerging from under their blankets (cats) and barking at the suddenly whirring and beeping electronics (dog). We decided to continue on to Alex's office so that we could all go home together when he got off work.

The kiddos played DSi while we waited for Alex to do his lawyer stuff. Quinn is a big fan of the Nintendogs game he got for Christmas.*

It's even more fun to watch him play fetch with
his fake dog when his real live dog stares
wistfully at him from the couch.

Even though my friend had promised that my power was on, we all got tenser and tenser as we approached our house, sure that somehow it would have gone back out or all the houses in the neighborhood but ours would be lit up. Happily, we arrived home to a house ABLAZE with lights.

For a day that started out as a complete bummer, it actually turned great pretty quickly. My kids and I had such a fun time together. Sometimes setting out on an adventure hoping for nothing more than not being miserable turns into a day to remember.

* Disclosure: I bought Nintendogs, but I do have a relationship with Nintendo as a brand enthusiast

Monday, January 24, 2011

Based On His Reaction, I Don't Think That Was Laughing Gas At All

The last time Jack went in to get his teeth cleaned, the dentist expressed grave concern over his teeth. See, at the visit before, she'd already noted that some of his back teeth were soft and not properly formed and that they were prone to decay, no matter what we did. When she saw what had happened in the six eight months since his last appointment, she was extra worried.

As if Jack didn't have enough problems.

She is a great dentist, but doesn't specialize in either children or special needs individuals, so she referred us to a pediatric dentist with that exact specialty and told us to go there as soon as possible.

Of course it took us three months to get an appointment.

That appointment rolled around today. After an exam and x-rays, the dentist told me about Jack's three cavities in his soft teeth. She also used phrases such as, "seal this fourth one," "may have to crown this one," and "we need to get to this one quickly to prevent a total root canal."

Naturally, her next opening was in April.

But then she told me about an opening in the afternoon this very day and we decided that we would come back to take care of the worst tooth; the other two could be fixed later. Because it was a same-day appointment, we would have to forgo the pre-visit Valium and rely just on laughing gas. Based on Jack's temperament and his history of mellow, even enthusiastic, behavior at dentists in the past, we figured this would be all right.

In fact, this might have been a mistake.

Pre-tooth repair.
Poor trusting bastard doesn't know what's coming.

Once we got in the room, I put Sam and Quinn in the corner with their video games, Jack selected "marshmallow" as his preferred scent for his laughing gas, and the dentist pulled out the biggest motherfucking needle I have ever seen in my life.

Somehow they managed to disguise what they were doing. Jack never even knew that they gave him a shot.

At this point I was optimistic, but things went downhill from there. First his hands started to clench and he kept trying to point to his mouth. Then his legs started to twitch. Then he started to moan. Then, as much as possible with the entire dentist's office in his mouth, he started to tell us—AS LOUDLY AS POSSIBLE—how unhappy he was with the situation. Then his body started to contort.

I'm pretty sure most of it was sensory discomfort. I really do. I don't think he perceives that kind of thing as pain, but I do believe that it was not an easily tolerable situation for him. Of course, at some point, we passed the point of no return, but until then, the dentist was making sure that he was able to handle it.

As the screaming got louder, however, she worked faster and faster.

And, oh dear lord, the screaming. Because that's where we ended up. Screaming. The dentist asked an assistant to close the door, I assume to muffle the sounds of the torture chamber.

After it was all over, Jack kept asking me to "take it out!" because he didn't quite understand that his numbness wasn't a foreign object in his mouth.

Being the empathetic souls that they are, Sam and Quinn didn't look up once.

Oh, it was terrible. Honestly, I don't think there's anything we could have/should have done differently. That tooth needed to be fixed ASAP and everyone did the best they could, but I gotta tell you, I'm not sorry that we weren't able to make an appointment for the other two teeth until April.

We'll be giving him Valium before those appointments, that's for sure.

I have a photograph of Jack wearing his little oxygen mask because he wanted to look in a mirror, but I didn't have one so took a photo instead. I was going to post it, but you know what? It is too sad. I just can't do it. He looks so distressed in the photo, I just don't have the heart to put it up here. Instead you can see this one, which I took shortly before bedtime, after he had forgiven me.

Thank God for Jack hugs. Seriously. They're like crack.

I recognize that this doesn't make me sound like the best tooth parent, but I swear that Jack brushes his teeth twice a day and he uses a dentist-recommended rinse every day, and I swear to God we are going to start helping him floss his teeth every single day from now on. I would also like to say that I would gladly undergo a root canal with no sedation if Jack never had to go to the dentist again.

Also, I'm looking into some Valium for me at those next appointments as well.

Friday, January 21, 2011

Dipshit Friday: The Alex Almost Ate Dog Food Edition

All of this happened in December, but it is still quality dipshittiness.*

My friend Heather got an unsolicited bag of Pup-Peroni (don't click that link unless your speakers are turned off, for realsies) in the mail, which was awesome, except for the fact that she doesn't have a dog.

Score for Cassidy! (Our dog.)

She dropped the bag at my house and I left it on my counter until such a time as I felt that Cassidy would deserve such a scrumptious treat. Just so as you know, this is what the bag looks like:

Scene: Alex comes home from work, sees the bag on the counter, becomes excited that I purchased beef jerky, wonders briefly why I bought chicken flavor (because that is the wording that caught his eye on the package), and is seconds away from eating it before the doubts start to surface.

At this point, he proceeded to berate me and the Pup-Peroni people for not making it clear on the package that the jerky is intended for dogs. I managed to find the tiny writing that said "DOG SNACKS," but that didn't assuage him either.

I assume that the thinking behind making that text so small is because the good folks at Pup-Peroni assume that the GIANT "Pup" on the front would be a pretty good indication to most individuals that THIS IS NOT HUMAN FOOD.

Awesomely, Pup-Peroni's slogan seems to be "Dogs Just Know." Evidently Alex doesn't.

* Judges? Yes! "Dipshittiness" IS a cromulent word.

Thursday, January 20, 2011


One of the best things about having had three kids in just over three and a half years is how much fun they are together. I love seeing them form bonds and friendship and seeing all the permutations of that friendship, what with the shifting alliances and whatnot.

Regardless of who is in favor and who is besties with whom, Sam is virtually always the leader. He tends to be a benevolent ruler most of the time and has apparently earned the love and respect of his loyal brothers.

One day last week, I found the following two notes randomly around the house, the first one from Jack and the second from Quinn. I don't know what Sam did, but it must have been awesome.

Dear Sam, Well Done! I love you! You are my Bro! From, Jack*

* I have no idea what the goo smeared all over the note is. Welcome to my life.

I do have a sneaking suspicion that the accomplishment may have been video game related. Also, while the last sentence looks like a statement of fact, I have a feeling that it carries some emotion with it as well.

Being a grammar nerd (used to be a copy editor, remember?), I'm also very proud that other than a couple of capitalization errors, Jack punctuated the hell out of that note.

Now, when you look at Quinn's note, you should remember that he is just learning to read and write—and a cuter thing than watching a five-year-old learn to read and write, there cannot be.

Sam I love you. I will have a party. We'll be friends forever.*

* Official translation, supplied by Quinn

I have very little idea what the pictures represent, although it looks a little bit like Quinn plans to shut Sam in a large container.

It is such a cool thing to see my kiddos grow together. I have long said that I would love to have a gajillion kids, but I don't want to give birth to them or pay for them. And I'd need a live-in nanny.

I specifically remember the moment (I was in my car at a traffic light coming home from a pediatrician appointment) when I realized that in no way was I equipped to parent more than three children.

Much as I would like for them to be part of a huge family of kids, they are destined to be part of a triad, which is not such a bad thing. Especially when that triad is made up of the Elements of Awesome: Sam, Jack & Quinn.

Wednesday, January 19, 2011

A Card Game of His Own Invention

Remember how last week Quinn stayed home on Thursday and Friday? Well, he spent about an hour on Thursday making playing cards. Every one was different and beautiful in its own way. As he created them, he kept telling me about the actions associated with each one.

I couldn't tell you what these are for.

On Friday, Quinn was practically twitching to get his brothers out of the house so we could play his card game. I was all, "Oh. We get to play? Greeeeaaaatttt."

The game was about as coherent as you might expect.

You put that card on the pile!

I don't even know who won. Mostly I just had to put cards on top of other cards. Occasionally Quinn re-dealt them.

"What's this one for again?"

He even made a card that pretty adequately described what I was feeling.


If you haven't guessed by now, this is mostly a post to tell you how cute Quinn is. Also, I don't have anything else to write about. I now present to you...The Many Moods of Quinn.

The Ice Storm

Monday night as I was going to sleep, I could hear the click clack of ice hitting my roof. Even with the knowledge that the prophesied ice storm had, in fact, occurred, I was completely unprepared for Alex waking me up yesterday morning with the words, "The schools are closed."

I had been sooo prepared for a two-hour delay, but not for an entire day off. I forced Alex to repeat himself three times. Then I sobbed gently into my pillow.

See, it's been a long couple of weeks. Alex was out of town last week, so it was me and the munchkins all by ourselves. Sam had two half-days home last week, and Quinn? Well, Quinn hasn't been to school since last Wednesday.

He was lethargic for about an hour on Thursday morning, so I kept him home, because after you email the teacher telling him that your kid has a fever, you can't send him in at noon. Then, on Friday, he was all phlegmy and gross and even though he was perky as hell, it seemed like bad form to send a very obviously sick child into class.

My email to the teacher included the line, "Much as I would like to send Quinn to school so he could talk to YOU all day..."

Then there was the weekend and then Martin Luther King, Jr. Day (which we celebrated with cake, per usual), and then the devastating news that no one but Alex was going to be able to escape the house on Tuesday.

But much as I wanted to complain about school being canceled, it was probably the right decision, what with the inch-deep coating of ice on the ground.

All local plant life was encased in ice as well.

Honestly, I think my kids were ready to go back to school as well. After I refused to let them turn on the television and told them that they would have to wait until at least 5 o'clock to do so, they upended all the couch cushions and pretended that one of them was a television.

Sam is using a foam banana as a remote.
Also note the timer in the foreground, counting down until 5 p.m.

When that got boring—and it did fairly quickly—they constructed little houses out of the couch cushions. This was my favorite part of the day, both because it was very cute and creative, but also because they spent a good amount of time quietly inside their homes.

Quite a feat of engineering, actually.

Naturally, however, with Team Stimey, eventually everything just gets piled in the middle of the room and jumped on.

Fortunately, Quinn survived.

Clearly it was time to force my children out into the icy outdoors. Unfortunately, once they were outside, it became clear that I had to shovel. And while I use the word "shovel," what I really mean is "bash angrily at the ground with an inadequate tool," because clearing an inch of ice off of the sidewalk is not at all like snow shoveling.

My snow shovel (scooper-style) was ill-equipped for ice shoveling (ice pick needed). Fortunately Sam stepped up with his own little bent, blue shovel and helped me out. We abandoned our driveway because that ice would only kill us, but the city says we have to clear our sidewalk in case the public ice kills others.

Stupid sidewalks. The people on the other side of the street don't have a sidewalk. Lucky bastards.

I also cleared my porch steps because last time there was a big snow and the mail didn't come and I complained about it, someone was all, "Well, did you clear your steps? Tons of postal workers get injured after storms because people don't clear their steps." At first I was all, "Neither snow nor sleet nor..." and then I was all, "Huh. That's a good point."

So I shoveled my porch and the mail carrier came and all was well with the world. You're welcome.

Sam was really helpful with the sidewalk. I started at one end and he started at the other. He got a little irate when I stopped shoveling to take photographs. Something about his back hurting. Wuss.

 Quinn was a hindrance, literally doing a little dance directly in front of my active shoveling.

 And Jack spent some time shoveling the lawn.

Then we had the ice ball fight, which was also even less awesome than it sounds. I mean, it was all fun and games until someone got hurt. And, yeah, they had a lot of fun. But then, yeah, someone got hurt.

I wasn't actually involved in the fight, but I did let it happen, which I suppose means I bear some responsibility for the wounds Quinn sustained when he got hit with an ice ball right in the face.

This upsets me no end, because there is nothing I like more than avoiding responsibility.

Not sure you can see the numerous tiny abrasions
in the photo, but it was kind of dramatic.

The thing that made it all worthwhile though was when Jack walked straight up to our neighbor, who was also chipping away at his driveway, and said, "Ice to see you!"

It was adorable and funny, but mostly I was astounded because MY AUTISTIC CHILD JUST MADE A PUN!

Later I learned that this is actually a line from The Incredibles, which Jack hasn't seen for at least a year, so now my pride is twofold:

(1) Jack has an incredible memory and is awesome.

(2) Jack has the ability to see more than one meaning in a word (something he is working on in speech therapy right now—and having trouble with, by the way) and use this dual meaning (scripted or not) to make an appropriate and apt joke to a neighbor. And he's awesome.

Even more awesome is that, as I write this, the ice is melting and all my children are at school. (Okay, it's not actually more awesome, but it is still pretty awesome.)

Thursday, January 13, 2011

Eventually, I'll Be Putting Him in Charge of Alex As Well

Sam is in this crazy responsible phase. He sets his alarm for 6 a.m. every morning, gets up, eats his breakfast, and packs his lunch. Then he reads or plays a game until everybody else catches up. Tonight, I caught him creating breakfast menus for his brothers. I think that means I get to sleep in tomorrow.

I'm a little bit concerned that this is the beginning of an overthrow of the current household administration.

Regardless of imminent revolution, this is quite a delightful development. He has been stepping up in other ways as well. He has created a star chart for his brothers, complete with incentives for good behavior.

This star chart has been in action for a couple of weeks now and it finally occurred to me to ask what his brothers earn stars for. It turns out to be fairly innocuous (not, in fact, sowing the seeds of revolution for stars), with stars earned for doing chores and for reports of good behavior in school. I'm not sure how he is doing his data collection, but it seems to be keeping everyone happy, so I'm not going to question it.

The rewards include things such as "piggy back from Sam" or "you get to choose the TV show or movie," but by far the most coveted incentive is "sleepover in Sam's room."

See, Jack and Quinn share a room, and about three feet away, Sam has a room. Being given the go-ahead to travel that three feet after 8 p.m.? Well, that is apparently quite an honor.

Quinn was the first to score a sleepover. I could hear them through the door playing a card game for a little while, but then they settled down and went to sleep. Bonus: No perpendicular Quinn body in our bed at 5 a.m.!

That was all well and good until Jack earned a sleepover, leaving Quinn alone in his room sobbing. "I am so looooooonely in my room! I miiiiiiiiiissssss Jack!"

I told him he could sleep on the couch, which, ironically, is even farther away from Sam's room, but sometimes a change in venue helps. I wandered by about 20 minutes later to find the scene in the picture I featured yesterday but was too lazy to write the back story for.

If there were ever a child who needed constant, loving contact, it's this one.

Tonight, due to some hard work and cooperation on their parts, both Jack and Quinn earned a sleepover with Sam. I mean, I guess there was hard work involved. I don't know who verifies these things.

This sleepover was a little more noisy than prior sleepovers with just two of them, but they're all asleep now, so hooray. Jack and Quinn (and the giant monkey) are asleep on Sam's bed, and Sam is asleep on the floor.

It's hard being the leader. Also? The revolution will be blogged.

Wednesday, January 12, 2011

Wordless (It's Still) Wednesday (For Five More Minutes)

I fear that the monkey is trying to suffocate Quinn.

(It is Wednesday, right?)

Sunday, January 9, 2011

In Which I Wage War Against Strangers

I like crossword puzzles.

I never even thought about crossword puzzles until my late 20s, but since then, I've always had little crossword puzzle books scattered all over my house. Until, that is, I got my iPhone and found the Crosswords app.

At $9.99, it is the most expensive app I have ever purchased, but I have probably logged more hours on it than on any other app on my phone—and that includes the actual phone call capability. Every day, about five to eight new puzzles are downloaded to my phone, giving me ample choices of puzzles to work on. The best ones arrive on Fridays and Sundays. Also Monday, because those are the easiest and I am lazy.

I am terrible at crossword puzzles. I'm getting better, but in the list of Top Solvers that my app shows me after I solve a puzzle, I am almost always near (at) the bottom.

You'll note that I had to get hints to score that awesome time.

That's me there, finishing a mere 6 minutes and 39 seconds after BarkingSlug. Awesome. My worth is nothing.

For the past several months, I have been chasing the times of a player known as momof5gr8kids. She almost always does the puzzles before I do and she always does them faster than me.

I hate momof5gr8kids with the white-hot passion of a thousand suns.

I spent some time wondering if her 5gr8kids were sad and neglected until I realized that not only was I spending MORE time doing crosswords than her (see: she always does them faster than me), but I was whiling away a substantial amount of time hating her.

She disappeared for a couple of months at some point and I started to worry about her. I wondered if one of her gr8 kids did something terrible. I wondered if she would come back as momof4gr8kidsandaloser or maybe even momof6gr8kids. She probably just started doing her crosswords later in the day than I did, so her times weren't up when I showed up.

I have spent FAR too much time thinking about her.

In her absence, I started chasing Dr. Beer, because, well, his name is Dr. Beer. If I could beat anyone, it should be Dr. Beer, right? (Said the lady who is dumber than BarkingSlug.) Well, that Ph.D. in beerology evidently included a minor in trivia, because that guy kicks my ass daily.

Once momof5gr8kids came back, I started competing with both of them. I like Dr. Beer a little bit better because occasionally I can beat him (or her). I never beat that bitch momof5gr8kids though.

This next screenshot shows that I was at least in range of Dr. Beer on this one.

But almost a minute behind Steimy the Imposter.

But then, shortly before Christmas, this happened:

Aw, yeah, baby.

I didn't just beat momof5gr8kids, I fucking slaughtered her. AND I beat Dr. Beer too—by less than a six-pack. AND I came in first place of all the crossword puzzle nerds that played the puzzle before I did.

It's like winning the Nerd Medal in the Nerd Olympics played on the NerdPhone.

Now, before any of you start suggesting that I play against you in Words with Friends or one of those other brainy/nerdy games, just know that I can't, for two reasons:

1. I would lose (and how!) and that would make me sad and embarrassed, and

2. I'd have to be all, "Congratulations! You won again, you ol' so-and-so!" when really what I would mean is, "I haaaaaaaaaaaaaaate you."

So, is it just me, or do any of you maniacally compete against strangers who don't know you exist?

(Oh, Christ, it's just me, isn't it?)

Friday, January 7, 2011

My Friend Susan and How She is Fighting the Good Fight AND Helping Women Who Can't Afford Lymphedema Sleeves

I have a really good friend named Susan. She might be your good friend too, even if you just know her through her online life. She is @whymommy and she blogs at Toddler Planet.

Susan is a scientist—like, a real-life rocket scientist—and a mother to two fun, incredibly sweet, and adorable children. She is also a wife to a wonderful man who is almost as cool as her. Susan has been a champion of my family for years now, and has so genuinely cared about learning about autism and Jack, that even if I didn't love her as a friend (which I do), I would love her just for that. Susan is funny and graceful and delightful to be around. Her capacity for caring is beyond words. Basically, she's a really cool woman, and I'm so happy to have her as my friend.

Susan also has cancer. She has been fighting cancer on and off for a long time now and yesterday she got news of more. I'm tempted to throw a lot of curse words at the universe for that, but because Susan is a proper Southern woman, I will not. Visit her site, send her good thoughts, help her in her fight with your words, but she specifically doesn't want your pity. Let's work on sending her strength instead.

Susan has spent these past years not just loving her family and doing some of the most conscious parenting I have ever seen, but working to do good. She founded the Mothers with Cancer site, which gives a voice to many mothers also fighting cancer. She runs the Women in Planetary Science site to advocate for women in science and to encourage them to pursue careers in the field. She has been a tireless source of information and support for women with cancer and people who need to know how to support someone with cancer. She has worked so very hard to publicize the dangers of inflammatory breast cancer, the breast cancer that presents without a lump.

The woman is a force for good, people.

Over the past few weeks, while recovering from her most recent chemo treatments and in the midst of worrying about upcoming scans, she has been working to help breast cancer survivors who struggle with lymphedema, something I had never even heard of before I saw Susan experience it.

The medical equipment used to treat this condition is often not covered by insurance, causing many cancer survivors to have to go without.  Naturally this isn't okay with Susan. Check out what she's doing about it. And if you know someone who needs help paying for lymphedema sleeves, pass this on to her.

Can't Afford Lymphedema Sleeves?

Cross-posted from Toddler Planet

Are you or do you know a breast cancer survivor? Please read today's post and pass it on. If you can't afford to purchase a lymphedema sleeve, gauntlet, and/or glove, and you can't manage your post-mastectomy swelling, Crickett's Answer and LympheDIVAs want to help.

Today, I am pleased to announce a NEW opportunity for breast cancer survivors who have had a mastectomy and/or axillary dissection of the lymph nodes due to breast cancer and have swelling of one or both arms but cannot afford the $200-$500+ cost for two sets of the compression sleeves and gauntlets that survivors with lymphedema must wear every day to keep the swelling in check.

Although lymphedema sleeves are medically necessary, they are not covered by Medicare OR most insurance plans under current law, and thousands of survivors go without the sleeves, needlessly suffering congestion, swelling, and pain that interferes with their normal activities.

Crickett's Answer, a 501(c)3 nonprofit organization founded in memory of Crickett Julius, has just joined forces with LympheDIVAs to help other breast cancer survivors who fight not just the beast that is breast cancer but also the fallout of side effects that includes lymphedema, which may limit survivors' activities. By working together, they are now able to provide needed lymphedema sleeves and gauntlets to women who need them but cannot afford them out-of-pocket or convince their insurance companies to pay for them. They do this in honor and memory of their loved ones.

PhotobucketCrickett Julius survived breast cancer only four months, but her mother and cousin are dedicated to helping other women enjoy their life post-diagnosis through Crickett's Answer, a 501(c)3 organization that provides wigs, mastectomy products, oncology/mastectomy/ lymphedema massage, facials, and other pampering services as a way to help women feel feminine and beautiful after losing their hair and/or breasts.

PhotobucketLympheDIVAs was founded by Rachel Troxell and Robin Miller, friends and breast cancer survivors, who wanted to create a more elegant and comfortable compression sleeve. Rachel continued to build the company during her later recurrence. Even though she died two years ago, at the age of 37, her father, mother, and brother continue to grow the company in her honor and in the hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong, and confident as Rachel was.

To ask for help, please download and complete the forms at Crickett's Answer, writing in "lymphedema sleeve and gauntlet" on page 2 of the application.

To help someone else, please copy and paste this post on your blog or email it to a friend (or your local cancer center!).

To donate, go here.

To help change the law so that this medical garment is covered by cancer survivors' insurance, stay tuned for more about the Lymphedema Treatment Act when it is reintroduced in the 2011 Congress.

Because of these women, these three thirty-something women who didn't ask to get breast cancer, and the men and women who love them, there is now help for women who can't afford lymphedema sleeves, a medically necessary garment not typically covered by insurance. Their legacy lives on.

Note: Cancer patients who are members of the National Lymphedema Network and who are treated by an NLN therapist can also apply to the NLN garment fund, set up in honor of Marilyn Westerbrook.

Thursday, January 6, 2011

Now That It's Over, I Feel Much Less Twitchy

A loooong time ago—like, in December or something—I got an invitation to attend the book launch of Paul Offit's new book, Deadly Choices: How the Anti-Vaccine Movement Threatens Us All, at the National Press Club in DC on January 5th. I was delighted to have received the invitation and immediately RSVPed yes.

I wrote the date on my calendar and watched it get closer and closer. Every day that it got closer, I started to think of another reason why it was completely unreasonable that I should go. Alex would have to come home early to watch the kids. I work from home at night; should I really take a night off? It's Wednesday and Modern Family is on.

Really, the reason was that I was fucking terrified.

Here's the thing: I have terrible social anxiety. Like, interfered-with-my-career-choices-and-success social anxiety. Like, spent-a-lot-of-time-avoiding-even-friends social anxiety. I am on medication now (which helps) and have built up a fair amount of success interacting with The People (which helps even more), plus I have learned to laugh at myself (which is invaluable), but I tend to do and say a lot of dipshitty things (this is less helpful). Nonetheless, there are some situations that are completely outside my comfort zone.

Walking into the National Press Club all by myself for a type of event that I have never experienced and don't know what to expect while wearing business casual clothes and having to worry about standing there by myself or making intelligent conversation if someone deigned to speak to me? Well, THAT is three time zones away from my comfort zone.

I tried really hard to back out. Alex was really cool though. He never flat-out kicked me out of the house, but he told me I'd be fine and he told me that I had committed to being there, even though we both knew that my presence wasn't going to make or break the event. He told me to go. He was nice about it, but he didn't give me the easy out I was looking for.

He also told me that as the event was a book launch for Paul Offit, that people wouldn't be focused on me, which was bruising to my (huge) ego, but probably accurate.

I drove into DC and did a very poor job of finding a place to park. Usually I'm pretty good about triangulating in on a DC location, but not last night. In fact, I ended up on the wrong side of the National Mall, which is a pretty significant driving mistake to make.

I finally ended up panic-driving into a valet parking garage, which I didn't realize until the guy told me two times, "Leave the ignition key in your car." I had my epiphany before he actually had to say, "LADY, GET OUT OF THE CAR ALREADY," but I wasn't all that smooth about it.

I walked a couple of blocks to the building, where I saw a line of people standing outside the doors for no discernible reason. I was about five minutes late and I couldn't imagine that people were being held outside before going up, but I've never been to a book launch, maybe that's what they do at the Press Club. And, honestly, what if I went up and tried the door and they all started pointing and laughing? But I couldn't just stand in the end of the line because what if it was a line for taxis or something and then I had to find a graceful way to step out of the line and, again, they all started pointing or laughing?

I walked directly past them and around the corner, where I stopped to breathe for a moment. After a sufficient amount of time had passed, I turned around and went back. They were all gone. I think they were waiting for a bus.

Maybe my social anxiety is a sign that I am Too Dumb to Mingle With the Normals.

I walked inside and made my way up the Press Club with little to no trauma. I even made small talk with the other lady who walked in at the same time as me. I was really happy to see that the event was not a meet and greet, but rather had chairs arranged in front of a podium, which gave me a good way to sit quietly by myself and pretend to be busy on my phone.

I felt a little bit like my body was going to shatter. I looked around and tried to make eye contact with some people, but it looked like either people had come together or knew each other already and everybody was engaged in deep conversation. I started to compose a tweet about how I was trying to look busy.

But right then someone sat down near me and made that eye contact, so I took a deep, internal breath, stuck out my hand and introduced myself. It turns out that I knew the guy. We'd emailed a lot last summer for a piece I'd written about his organization for my Autism Unexpected column. I still mumbled a lot and was vaguely incoherent, but at least we had a conversation starter.

He was very nice too, which helped. I do remember that he told me where his son went to school and I told him about how one time Jack got into a sand fight in the playground behind that particular school, which is probably not the appropriate response to such a thing. Honestly, I need note cards with sample sentences for possible topics of conversation.

Oh, and hey, you know how no one ever sits in the front row at these things? Maybe it's because if you do, you might inadvertently choose a seat in an empty row next to a chair with a briefcase on it. That briefcase might end up belonging to the guest of honor and you might find yourself sandwiched between Paul Offit and his wife during the introduction.

There was, again, some mumbling and incoherence, as we chatted about autism moms and how we don't all feel represented by Jenny McCarthy. I am being kind (to myself) by referring to it as "chatting," but he was very nice. I did refer to Ms. McCarthy as a nut, which is one step up from calling her "a fucking loonybin," which I refrained from doing, but perhaps I should have because then I would have been "the delightfully colorful autism mom in the front row," instead of the "stammering sycophant who took my wife's chair."

Once Offit started speaking, I was really glad that I had pulled my shit together and attended. He was charming and rational and it was lovely to hear him speak.

I have a lot of thoughts about what he said, especially in light of yesterday's (not entirely new) news that Andrew Wakefield's original study about the vaccine-autism link was not just bad science, but fraud. I hope to write about this later today, so feel free to obsessively check my column at Autism Unexpected to see if I managed to do so or if I got sidetracked by Twitter.

Speaking of twitter, thanks to all of you who talked me off of the ledge about my event. My victory speech (140 characters or less!) went something like this:

Although it might feel like it is.

It's a little embarrassing to write all this down, but I do so for two reasons:

(1) My philosophy that when you have to choose between laughing and crying, you should always try to laugh means that I have to laugh at myself here. I encourage you to do the same. Laugh at me all you want.

(2) I want to let people know that social anxiety is very real. If you suffer from it, you know what I'm talking about, and you're not alone. If you don't, next time someone tells you they have anxiety about a social situation, realize that it's not a buck-up-and-get-over-it situation. No, it's not rational. Yes, it is real. It's serious, it's all-consuming at times, and although it can be dealt with, it's not easy.


A couple other things. Yesterday, I spent my day vacillating between abject terror about my evening event and high on some really wonderful things going on in my social media life. First, thank you to everyone who is donating to Jack's hockey team. You guys blow me away with your generosity and support. Thank you so much. I wish I had better words, but instead you'll have to accept these psychic hugs I'm sending.

Also, the amazing WhyMommy and Sue from Laundry for Six are working with a couple of fantastic organizations to help get lymphedema sleeves to breast cancer survivors who can't afford them. Until I saw Susan/WhyMommy experience them, I had no idea about the difficult and long-lasting effects of cancer treatment. Please go read Susan's post and consider tweeting or facebooking* it. All she wants to do is get these sleeves to people who need them. Awesome.

* I'm calling it. "Facebooking" is now a word.

Tuesday, January 4, 2011

Hockey, Autism, and a Shameless Plea

Hi, friends and family and assorted stoppers by! I'm stepping out of my comfort zone a little bit here and asking for help for a really great organization. You all may know that Jack joined a hockey team this year. He skates every week with the Montgomery Cheetahs, an ice hockey team for young people with developmental disabilities.

I'm, like, 93% sure that's him on the left.

If, on some crazy off-chance, you haven't heard me blather on and on (and on) about them, here are some links to some stuff I've written about them:

I wrote about Jack's first hockey practice (and Sam at soccer) here.

I wrote about Jack's first hockey game here.

I wrote about how much hockey means to Jack in this post I wrote for Hopeful Parents.

Honestly, it is a really great organization, and one that means so much to the athletes who play on the team.

Furthermore, young volunteers—teens, pre-teens, and young adults—come out each week to act as mentors to the players. These mentors team up one-to-one with the players and teach them to skate, encourage them, and help them learn hockey skills. It can't always be easy for these young people to help athletes with developmental disabilities, but they do it. They come out at 7 and 8 a.m. on a Saturday to volunteer. Frankly, I don't even want to be there that early, and Jack is my kid, so...

I am hopeful that these wonderful volunteers will carry the stories of our athletes to the larger world. This partnership between young people with disabilities and typical teens has the potential to make a real change in the world.

The Cheetahs have been a team for several years now, although Jack and I have only been with them since September. If you want to see what this team has meant to some of the kids who've been with them from the start, check out this video:

Here's where I ask for help. This is the easiest way I know to get in touch with everyone I know, so I'm posting here instead of harassing you all with emails.

This hockey team needs money. Ice time can cost up to $300 an hour. The team needs on-ice equipment and subsidizes players to go to tournaments. (Our big tournament this year is in Boston.) Any and all donations to the Cheetahs go directly to programming. With an all-volunteer staff of coaches and administration, you know that any money you donate will go directly to the team and its goal of using hockey to help special needs kids better integrate into the community.

This year, the team's original founder is matching all donations up to a total of $5000. If you have it in you to give $5 or $20 (or $5000), your donation would be doubled, and you would be making a difference to a lot of special needs kids. Kids like this one:

Not our mascot. Funds will not go to buy a stuffed cheetah suit.

I have an address (not mine) to which you can send checks, but for privacy I don't really want to publish it here. To find it, go to the Cheetahs website (here) and scroll down to just above the first video. I don't think you can donate online.

(I actually am tempted to post the address here because I think it is the address of the guy who accidentally cut and pasted my phone number onto a document that resulted in my cell phone number being put on an answering machine message as the emergency contact for a national convention, but, you know...bygones.)

Edited to add: The Cheetahs' (volunteer and awesome) director has given me permission to post his address here (see comments). Mail any checks (made out to "Special Hockey Montgomery") to Special Hockey Montgomery, 8232 Inverness Hollow Terrace, Potomac, MD 20854. Please. No stalking.

I know how hard it is to give your hard-earned money away, even if it is to a good cause. I wouldn't even ask were it not for the fact that this organization is so incredible and makes such a tangible difference in the lives of so many kids. (Also, if you know an organization looking for a team to sponsor, please let me know!)

I will never know if you did or didn't donate, so don't worry, I won't be giving you the stink eye next time I see you. Even if you were all flat-out, "I'm not donating," I wouldn't give you the stink-eye.

If, however, you decide to donate and then tell me about it and email me with your snail mail address, I will mail you your very own Stimeyland Thank You Gift in the Form of Old Stimeyland Swag:

Hockey puck not included.

Supplies are limited in that I am almost out of these, but as long as I have them and y'all are demanding them, I'll send them. I won't even ask for proof of donation because I'm trusting that way.

Plus, I figure if you don't donate but ask for the mouse, everytime you measure something, your guilty conscience will make your little mouse say "You stole plastic mice out of autistic hockey players' little, needy hands. Jerk." And then your pen will run out of ink.

Jack says, "Thank you for your time!"
Actually, he said no such thing. But I thank you.

There are lots of special hockey teams around the country. The Cheetahs are affiliated with the American Special Hockey Association. Check them out if you're interested in finding a team for your own child.