Keller vs. Sullivan, Part II: Is there an Annie Sullivan in the house?

The appointment starts with great promise.

The neurologist, young and eccentric, says he knows exactly how to help my daughter. Follow his recommendations, he says, and she’ll be talking, using the toilet and behaving like a typical five-year-old in no time.

I am giddy with relief.

It’s a feeling all special needs parents know well. In a world where no one “gets” our kids — and some just get them flat-out wrong — when you encounter someone who not only gets them but knows how to help them, it’s like Christmas, your birthday and the season premiere of The Walking Dead all in one.

I call it the Annie Sullivan Effect, for the woman who taught a blind and deaf Helen Keller how to communicate. Like Sullivan, these women and men come into your child’s life and flip a switch you didn’t even know where to look for.

We have been lucky enough to know several Annie Sullivans. They hold a special place in our hearts and prime real estate in our prayers.

But as much as I adore these people, there is a massive drawback to meeting a real life Annie Sullivan. It makes the disappointment that much greater when someone who appears to have Sullivan potential turns out to be a JAGBA, (Just Another Giver of Bad Advice).

If there is one thing special needs parents have in abundance it’s JAGBAs. They leap out at us whenever we venture forth in public with our children or post about them on social media.

“Do you speak with him?” one woman asked when I explained that my then-3-year-old son couldn’t talk. “I mean, maybe if you modeled speech it would help.”

I was beyond tempted to reply, “No, we communicate entirely in mime. Look! He’s doing the ‘I’m-trapped-in-a-giant-invisible-box’ routine! Haha. Good one, buddy!”

While JAGBAs exist for all moms and dads, they can be particularly vexing for special needs parents because, unless the person speaking has a degree in neurologically atypical development, he or she has about as much chance of giving appropriate advice as I do of being crowned Miss Argentina. (It could happen but the circumstances would be very suspicious.)

Even once you do explain your child’s condition, some JAGBAs refuse to accept that this negates their words of wisdom. That some kids are wired differently challenges, well, apparently everything they believe about the universe.

Having seen up close and personal how differently some children develop, I can very comfortably say it is more bizarre to believe the “one-size-fits-all” line of thinking than it is to reject it.

Take my son and speech. Everything that helped typical kids learn how to speak, such as modeling speech, didn’t work for him. And trust me, we modeled out the wazoo. At his pediatrician’s request I narrated everything we did, much to the concern of people who found themselves near us in public. “Here we go up the stairs,” I’d say, as people inched away from the crazy lady. “Up, up, up the stairs.”

Even things that helped the majority of atypical kids learn how to speak, such as speech therapy and sign language, didn’t work. (And no, despite what some JAGBAs argue, learning sign language does not discourage kids from speaking. It’s not like they have the keys to the kingdom being able to sign “milk” and “potty.”)

So what did the trick? A new neurologist and an occupational therapist who determined the problem was with my son’s vestibular system. (Essentially, his sense of balance.) Instead of trying to get him speak, this therapist focused on movement. She pushed him on platform swings and swung him in circles. Within a week, he said his first words. Probably to get her to stop.

When you witness something like this, you don’t just drink the neurologically atypical Kool-Aid, you chug it.

That’s why I am ready to follow every recommendation this young neurologist gives. He has already built a reputation within the local special needs community for “thinking outside the box” and getting results.

His first suggestion is to take a stool sample so he can prescribe a course of probiotics and supplements for my daughter. Sounds good.

He then sends us across the hall so his nutritionist can devise a special diet for her. I am THRILLED. Eating has been a major issue for my daughter ever since she started chemotherapy and the constant nausea and vomiting turned her off food.

Toward the end of her cancer treatment she was fed entirely through a tube. When she began her recovery, her doctors recommended a liquid meal replacement drink to help her gain weight and grow as we gradually reintroduced solid foods. It has helped us tremendously but we would love nothing more than for her to enjoy eating again.

Unfortunately, the nutritionist is no Annie Sullivan.

The trouble starts when this woman — let’s call her Twiggy — enters the room, turns sideways and disappears. Okay, I’m exaggerating but she was worryingly skinny. I know it’s not nice to be prejudiced against anyone for their weight but I have a really hard time trusting anyone who doesn’t seem to enjoy food. Especially a nutritionist. I mean, what was she going to teach my daughter to eat? Altoids and laxatives?

She asks for a list of foods that my daughter consumes on a regular basis. It’s a short list and when I mention the name of the supplement beverage, her head snaps up and her eyes grow wide over protruding cheek bones.

“That stuff is poison,” she says. “It’s full of sugar and sugar feeds cancer.”

“Her oncologist recommended it,” I reply. “Her tumors have been steadily shrinking the entire time she has consumed it.”

She looks surprised.

“Ok, well, let’s get her off that,” she says and then lists on her bony fingers several nutrient-dense foods I would be thrilled for my daughter to eat but I’d be lucky to get my husband to try.

“Great!” I chirp. “How do I get her to eat all this?”

She looks at me blankly.

“We have a lot of trouble getting her to try new foods,” I explain. “Do you have any suggestions?”

“Just put it in front of her,” she replies, pulling out her phone because apparently we’re boring. “She’ll eat if she’s hungry enough.”

That’s when I knew it was all over. Because yes, most children will eat foods they don’t particularly like if the alternative is going hungry. But kids with sensory issues or oral aversions won’t, especially if they are too young or developmentally delayed to make the connection between hunger and food.

Her advice was the equivalent of Annie Sullivan telling the Kellers, “Just force Helen to develop a concept of language and a method of communicating.” Great in theory, but how do you get there?

In that instant it became apparent that, although this woman was well-versed in nutrition (she could correctly pronounce “quinoa”), she was pure JAGBA when it came to eating and the neurologically atypical.

I wasn’t alone in this assessment. A few months later, the neurologist added a feeding therapist to his staff so children could learn to eat these incredible diets being created for them.

And once again I was reminded that they can’t all be Sullivans.

In the grand scheme of things, it’s not that big a deal. Two years on and my daughter has almost caught up developmentally, even without the help of kale. Some people have asked why I even bothered with all the therapists and doctors if she would eventually get there on her own. The truth is, we had no idea if she would.

Also, as a parent you see your kid struggling with the basics and you want to help. You want your child to enjoy everything other children her age do: giggling with friends; the sweet, sunshiny taste of an orange; the pride of not crapping her pants.

Although there is far less call for Annie Sullivans around our house these days, I will probably always be on the look out for them. This is largely because I feel so out of my depth as a parent to the two unique, fabulous people that are my children.

So to any and all the Annies out there, thank you for what you do.

And call me if you have any suggestions.

This entry is dedicated to the miracle-working Ms. Lee. Thanks for being our first Annie Sullivan.

 

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In this corner, we have Annie Sullivan.

The other “c” word

Sometimes, it can be really helpful to talk about your problems.

My husband recently discussed our daughter’s cancer with the gas company and wouldn’t you know it, the next day a crew came out and fixed the gaping hole they had left in our yard a year ago. Never mind that they should have fixed it anyway or that they had been promising to for months. Tragedy got the ball rolling when nothing else worked.

Although effective, his strategy did cause some confusion when I asked how he had changed the company rep’s mind.

“I used the ‘c’ word,” he said.

I stared at him.

“You called her a c—-t?” I asked.

His eyes went wide.

“I told her our daughter has cancer.”

Oh, yeah. That “c” word.

Three years ago, our daughter was diagnosed with neuroblastoma at the age of 18 months. A type of pediatric cancer, neuroblastoma either grows aggressively or just lingers, sometimes taking years before it dies off on its own. The doctors are hopeful our Charlie has the latter. Already she has endured 12 rounds of intensive chemotherapy, six rounds of less intensive chemo and six surgeries. She is now off treatment and the tumors aren’t growing. As a family we’ll be holding our breath for a few years but as far as having your child get cancer goes, we are the lucky ones. (Don’t tell the gas company, though. They owe us.)

Please understand, I am not trying to make light of this disease or anyone’s struggle with it. It’s just that I’ve had a long time to deal with this, and crying inconsolably on the floor curled in a fetal position gets old after a few weeks. I’m also aware that any time I talk about Charlie’s cancer, I’m really only telling part of the story. She is the one who has been fighting this and one day she’ll be able to tell the story herself, no doubt much better than I can. But for right now, I’m the one who can type and the only perspective I can share is my own.

In the beginning, I didn’t want to talk about it. Talking about it made it real and I didn’t want it to be real. It was easier to tell a few friends and family members and have them relay the news to those who needed to know.

Once she started treatment, her condition was obvious to all but the criminally stupid. She lost her hair and was painfully skinny. Of course, logic is no impediment to some, such as the old man smoking a cigarette in front of her doctor’s office who reprimanded me for her appearance.

“Why would you shave that poor child’s head?” he demanded.

I looked pointedly at the sign behind his head that read “Pediatric Oncology and Hematology.” Nothing. Tempted to say, “She lost a bet,” I instead explained in small words what should have been obvious. (Why, you might ask, would anyone smoke in front of a children’s cancer clinic? Sadly, her doctors share a building with cardiothoracic surgeons, so it’s not unusual for the pediatric patients to run a gauntlet of carcinogenic smoke to get to treatment. Whoever came up with that brilliant office sharing arrangement should be shot.)

But if I was out without her and saw people who didn’t already know, I wouldn’t tell them. It just seemed like an awkward thing to bring up in, say, the aisles of the Food Lion. (“Jack just started transitional kindergarten and Charlie is battling cancer. OMG, is that the new Hamburger Helper?”) The few times I did share the news were — bad. People got upset, understandably, and I felt lousy for ruining their day. Also, once people know they feel inconsiderate talking to you about anything else. Trust me, sometimes you really want to talk about something else. Anything else.

But once she was through the worst of her treatment and the tumors had stopped growing, it became easier to talk about her condition. Perhaps it was because I didn’t feel the need to escape it as much myself, and it’s easier to share good news than it is to punch people in the gut with tragedy.

Also, I am proud of her.

I shy away from the term “cancer survivor.” For one thing, she’s not in remission, but also it seems like an insult to those who have passed away from the disease. There were many amazing children she met during her treatment — Gabby, Carter, Pieter, Miranda — who were just as fierce in their struggle and endured more in their tender years than any human being should in a lifetime. They didn’t lose their fight against cancer. The treatment stopped working. The cancer found a new way to grow. Unfortunately, cancer is a powerful, indiscriminate dick — it wouldn’t pick on children otherwise — and has an enormous capacity to change the rules and overcome whatever is thrown at it. These children didn’t lose their struggle any more than Charlie won hers. She simply got lucky.

And yet…

…and yet that child put up the fight of a lifetime. Before she could even take her first steps she had been pumped full of poison and poked with needles and sliced open in three different places. She endured weeks of confinement to a hospital bed when she should have been learning to walk, vomited for hours when she should have been figuring out her favorite foods.There were times when I looked at her and felt like saying, “It’s okay if you want to give up. I don’t want you to, but I would understand.” But this baby, this child in diapers who slept with her fingers entwined in my hair every night and cried when the end credits rolled on “Mickey Mouse Clubhouse,” found some way to keep going.

You better be damn straight I am proud of her.

Sharing her condition also helps explain her developmental delays. Although she has recovered physically from the chemo and is the size of a strapping 5-year-old, developmentally she is somewhere between the ages of 2 and 3. Or, in the words of a little turd at her ballet school, “She talks funny. She’s wearing a diaper!” (“You talk funny!” I wanted to shout. “And your mother is an alcoholic whore!” Instead I chirped, “She’s just catching up!”)

There are times when I would like to talk about it even more. For example, those instances when she’s throwing a tantrum on the floor at Target — she is mentally a 2-year-old, after all, and 2-year-olds excel at tantrums — and I get the stink eye from some old bat who forgets what it’s like to be a parent. In those moments I would love nothing more than to shout: “She has cancer! What’s your excuse for being socially awkward?” And then maybe spit on the floor. I don’t know, that feels inappropriate. I could probably get over it, though.

But it was only recently that I discovered the best use for sharing her story.

Even though I can be private about some things — say, my child getting treated for cancer — for some reason complete strangers feel free to tell me things they really, really shouldn’t.

“I always wanted kids,” said the cashier at the Container Store to me one day, for no apparent reason. “But my first husband didn’t want them and then my second husband, well we tried and tried and then it turned out he was sterile.”

Um, I’ll just take my receipt. Please?

I am convinced it has to do with my red hair. When you are a redhead, you always remind people of someone they know. (Ugh, and it’s always the ex-wives. Ginger ladies, please, stop getting divorced so much, I’m begging you.) As a result, they are always taking small talk to places it just doesn’t belong when you are around.

But now I have a wonderfully powerful weapon against that, which I only realized on a recent outing to TCBY with Charlie.

We had barely taken our seats when the bearded youngster behind the counter started talking.

“I almost didn’t make it to work today,” he said.

“That’s too bad,” I said.

“Yeah, it was really bad,” he continued. “It was, like, emergency bad.”

I cringed.

“My girlfriend was bleeding everywhere?”

Stop.

“And we thought she might be having a miscarriage?”

It.

“We had to go to the hospital and everything.”

Right.

“We really want this baby, which surprises everyone because we are so young.”

Now.

“I’m really sorry,” I said and don’t get me wrong, I was sorry. It just seemed like there might have been someone more appropriate for him to talk to about this. Someone who knew his first name, for example.

He nodded.

“We won’t find out until Monday whether she lost the baby.”

And then it hit me: fire with fire.

I turned to him and pointed at Charlie.

“She has cancer.”

He stared. Silence ensued. A cricket rode past on a tumbleweed  and I went back to eating frozen yogurt with my daughter.

Yes, talking about your problems can be pretty helpful indeed.

 

This post originally ran a year ago. I am rerunning it now to mark the one-year anniversary of my attempts at blogging. Many thanks for everyone’s kindness and support.

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We’re no angels

The second people find out you have a child (or children) with special needs, many of them want to assign you saint status. There seems to be this idea that parents of special needs kids are mild, patient, long-suffering angels put on this planet to make other parents feel like crap if they lose their temper because the kids drew on the dog with a Sharpie. Again.

Well, you can all relax: with few exceptions, I’ve never met a special needs parent who is meek, perfect or mild. If anything, being in this situation brings out the badass in you.

Take, for example, my friend Bonnie (not her real name). The youngest of her three sons has cerebral palsy. Pity her. No, seriously, I dare you. She’ll brush it off with a, “I put on my big girl panties a long time ago.”

Every week Bonnie brings her youngest to the local YMCA for aquatic therapy. He can walk but not long distances and he’ll use a wheelchair that looks like a stroller to get to and from the pool.

Last week she pulled into the last available handicapped parking spot — she has a tag and it’s prominently displayed — and began unloading his wheelchair.

An older woman pulled up behind her and asked, “Are you coming or going?”

“Coming,” Bonnie replied as the nursing assistant who helps her during these appointments unbuckled her son from his seat.

“Well, are you handicapped?” the woman asked.

“No,” Bonnie replied, “but my son is.”

This woman, who is apparently beyond any social redemption, then said, “He’s handicapped but rides in a stroller?”

“Ma’am,” Bonnie said, and as anyone knows, when a southern lady uses the word “ma’am,” she is either being polite or fixing to kick your ass, “that’s a wheelchair, not a stroller and you are being a bitch.”

With that, the lady drove off in a huff. (Oh, don’t cry too much for her. She found a parking spot and made it to water aerobics just fine.)

In my opinion, this incident illustrates perfectly why special needs moms are not, in general, shrinking violets. We wouldn’t last very long on the job if we were.

Because, despite the overwhelming majority of kind and caring strangers out there, there will always be Buick-driving a-holes such as Betty — which is her real name, I would give her license plate number if I knew it — who think it’s acceptable to do things such as question whether we deserve the special parking spot.

Or suggest that autism doesn’t really exist. (That one was said to me.) Or “inform” us that children with neurological conditions would just get better if we spanked them. (Said to a friend.) Or tell us that we are poisoning our child with chemotherapy and we could easily cure her cancer with an all-juice diet. (Said to me.)

It would take the patience of a saint not to get ticked off by such behavior and I have yet to meet a special needs mom who qualifies for saint status. (Unless you’re talking about one of the ass-kicking saints, like Joan of Arc. She was cool.)

Also, it’s not just us on the receiving end of people’s rudeness. When we take our children out in public they are often subject to ridicule or contempt. We stand up for them to teach them they are worth standing up for. The few times I’ve lost it with strangers the message was really for my children. I want them to understand that they shouldn’t feel ashamed or embarrassed by the comments of strangers, it’s the strangers who should be mortified. (Yes, it’s not lost on me that on occasion, I’M the one embarrassing them with my behavior. I’m working on it.)

Hell, I’ve been criticized for not being hard-nosed enough. “You need to be an advocate,” has been said to me more times than I can count. And I have assumed some really ugly masks in the name of advocacy.

I have stood in the school district main office screaming like a lunatic because no one could tell me where to get help for my children. I have yelled at doctors who ordered another blood draw on my daughter, when both her arms were already black and blue, because they wanted to run a test that wasn’t absolutely necessary.

There’s probably some happy medium between pushy and abrasive and meek and mild but I haven’t found it. Like all parents out there, I’m figuring this out as I go along.

And that’s my point: being a parent is hard, period. All moms and dads give of themselves selflessly every day (and a lot of nights) and no one suggests they are saints.

One of the problems I have with this automatic saint status is that it comes with a hint of pity. And while this pity comes from a good place, it’s hard not to take it in a bad way. Because even though it isn’t the intention, the pity implies that my children are burdens I am patiently suffering through.

Oh. Hell. No.

My kids are my heart. They’re my joy. I love them beyond all reason and even when they’re a challenge I’m grateful for them. They aren’t my burden, they’re my privilege.

None of this makes me worthy of pity or assigns me saint status. It just makes me a parent.

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A trip to the farm

My daughter’s special needs preschool class just had its second and final field trip of the year. Like a big fat sucker, I offered to chaperone.

It’s not easy taking special needs kids out in a group, probably because each of them has — special needs. Loud noises, strong smells, even a change in routine can unhinge some of these kids, so I always get the feeling that the teachers shut their eyes and hope for the best.

In the fall, we went to a farm to pick pumpkins and learn about livestock, which didn’t go so well. On our hayride, the noise of the tractor made most of the kids cry and the hay itself caused the ones with sensory aversions to become hysterical.

During the lecture on dairy production, the kids were lined up facing the rear end of a Jersey cow, which made the parents nervous. The guide dragged on interminably and the children became so bored a few began self-soothing by banging their heads against the wall. I wanted to join them but was too busy watching Flossie’s rectum for signs she was about to blow.

We had a great time feeding the goats but then the pigs gave an enthusiastic demonstration of the circle of life — so to speak — and the kids became frantic, thinking they were witnessing some sort of assault. (They kind of were.)

Even more disturbing than the performance was the dad who filmed it on his phone. For what, I can’t imagine. His private collection? A few chuckles on his social media outlets? With whom is he friends that would find such a clip noteworthy or amusing? Mrs. Russo’s all-boy, sixth grade class?

This was followed by a lecture, “From Farm to Table,” in which a guide explained how the food we buy comes from the farm. To demonstrate, she held up a carton of eggs, a quart of milk and — I kid you not — a bag of Doritos, which presumably came from some sort of processed food s**ting species of chicken. Or something.*

By the time we had all recovered from the trauma of our first field trip (roughly six months), it was time for another one.

This time, there were only two parent chaperones, as all the smart moms and dads found excuses to be elsewhere.

The kids enjoyed picking strawberries, although we all could have done with a shorter speech from our guide, who took his work seriously and thought 4-year-olds would be interested in the varieties of strawberry grown in North Carolina.

“There’s the Chandler and the Camarosa. We don’t do the Fern or the Ogallala in this region but we do grow the Sweet Charlie and the Camino Real and the Seascape,” he drawled.

(It was like listening to Bubba Blue in Forrest Gump: “Shrimp is the fruit of the sea. You can barbecue it, boil it, broil it, bake it, sauté it. They’s shrimp-kabobs, shrimp creole, shrimp gumbo.”)

If possible, the children became even less interested when he waxed lyrical about how healthy strawberries were, and he didn’t win any fans among the moms and teachers when he grinned and said:

“Ladies, I bet you didn’t know that one cup of strawberries has only 55 calories! So you can eat a delicious snack without feeling guilty!”

It took all my restraint not to reply, “You know what else has only has 55 calories? My foot up your — never mind.”

After picking strawberries — Chandlers, in case you were wondering — the kids were treated to a hay-less wagon ride.

The owners of this farm had really upped the agritourism ante. Instead of the typical ambling drive around the grounds to gaze at housing developments on the farm’s perimeter, this ride included a guessing game.

The tractor driver played music and told the kids to look for clues as to which movie each song was from. She started with the theme from Indiana Jones, and sure enough, as we pulled out of the farmyard there was a fedora hanging from a fence post.

The kids got into the spirit of it immediately, especially one boy with autism who sat completely still and guessed the name of each movie within nanoseconds of the song playing. It was uncanny.

At first it was fun scanning the landscape for clues. As we passed a crate with MADAGASCAR stamped on it, the song “I Like to Move It, Move it” played. When “A Spoonful of Sugar” came on, we spied a lone black umbrella hanging from a tree.

Then it just got wrong.

“I’ll Make a Man Out of You” from Mulan blared and we passed a Captain Li Shang doll impaled on a stick. When “Touch the Sky” from Brave played we spied a stuffed Merida stapled to a tree trunk.

When I saw a desperate-looking Elsa twirling from a branch while Idina Menzel screeched in my ears, the lovely jaunt around the farm no longer felt so lovely. The dolls seemed like an eerie warning to turn back, and the whole experience called to mind what DisneyWorld would look like if it had been built by an emotionally disturbed 5-year-old.

Twenty-five minutes of music and bumping along in a wagon proved too much for many of the children. By the time we chugged up to our strategic spot next to the farm store — which sold strawberry bread, strawberry muffins and strawberry jam (“…pineapple shrimp, lemon shrimp, coconut shrimp…”) — some of them were starting to lose it.

While the kids were eating their picnic lunch, a woman from another school group approached and asked me in hushed tones, “Is this an EC class?” (“EC” is short for “Exceptional Children,” the term favored by our school district.)

I misheard her, though, and thought she’d asked if they were easy.

“Not really,” I answered. “They all have special needs.”

Once we had cleared up the confusion, she said:

“My sister has an exceptional child. I don’t know how you do it.”

Her kindness was appreciated but a bit misplaced. All day I had only been dealing with one kid and apart from a minor tussle when I wouldn’t let her wash her hands in the Porta John urinal, she had been easy to manage.

The teachers, on the other hand, had been handling two dozen children, all with their own issues and needs. That they make the effort to give these children “normal” school experiences, even knowing how difficult it will be, is very touching.

I’m just hoping next time we can go somewhere a little less sensory stirring. Like a closet.

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*FYI, I know that Doritos come from corn. I was merely suggesting there might have been a better example.

The interview

It’s been years since I’ve sat outside the principal’s office, but the dread and unease are instantly familiar. For the 100th time that day I smooth the hair from Charlie’s face and paw at her bottom, checking that her diaper is still dry.

My daughter and I are waiting to meet the principal of the most popular magnet school in town, a public Montessori with an excellent reputation.

Four-year-old Charlie is supposed to start kindergarten in the fall, but our local elementary school has a serious bullying problem. Convinced her developmental delays will make her a target, I want her to come here, where class sizes are small and students possess a commendable level of emotional maturity. Because it is a public school, she would also receive help from occupational and speech therapists, as well as special education teachers.

Unfortunately, I’m not the only parent to have picked up on how great this place is. Every year hundreds apply for the small number of kindergarten spaces available.

So far, I have done everything short of performing immoral acts to bypass the lottery that will surely lead to a spot way down on the wait list. (Not for lack of trying, let me assure you. The decision makers in this district are real prudes.)

The fact that she has cancer has swayed no one, we are still subject to the whims of the lottery. On one hand, I get it, they can’t give us special treatment. On the other hand, I wonder why the hell not.

I have scored a meeting with the principal, hoping she will find some magic back door to let us through. Little Charlie, however, has no idea how important the next 20 minutes are. I want nothing more than to grab her and bark:

“Listen, girlie, you better sparkle in there. Unless you want to be picking your teeth up off the playground for the next seven years, turn on the charm and shine. Shine, I tell you!”

Fortunately, I still have a little restraint.

Nothing has been left to chance. I chose her most fetching dress — red with Scottie dogs — and have tied a comically large bow in her hair, just in case the principal likes that sort of thing. None of this was easy. Little Miss insists on picking her own clothes each morning, and I’m supposed to encourage this ridiculousness. She invariably walks out the front door looking like she’s on drugs.

But last night I tiptoed into her room while she slept and removed every article of clothing from her dresser except for said dress and its matching bow. When she emerged clutching them this morning, somewhat confused, I pretended to be surprised.

She has been off chemotherapy for a while and looks radiantly healthy. This worries me.

“Kids with cancer are supposed to look — sick,” I lamented to my mother a few days earlier. “Maybe I should get an oxygen tank she can pull behind her.”

“No,” my mother said, equally as nervous. “You don’t want them to think she’ll be too much trouble.”

Right, I think, no trouble. That means no squatting in the corner and filling your diaper while laughing maniacally, darling girl, which seems to be your favorite pastime these days.

Sources in the special needs community have told me the principal has a soft spot for children like ours, and the year before admitted a little boy with Down syndrome named Paul. Charlie’s middle name is Pauline. I’m hoping to work this into the conversation somehow.

The door opens and Ms. Principal emerges, beckoning us in.

She directs me to a chair and Charlie to a box of blocks on the floor. Build, I urge her in my mind, build like you’ve never built before.

The principal and I discuss Charlie’s history: how she was diagnosed with neuroblastoma at 18 months and underwent multiple surgeries and rounds of chemotherapy. How the tumors are in a holding pattern right now, neither growing nor shrinking. How the doctors are confident that the cancer will slowly die off over the next few years, as can sometimes happen with this type of cancer.

I don’t tell her about my unhealthy need to push every potential obstacle from this child’s path. How I still feel guilt because I couldn’t stop the agony of chemotherapy. How I want nothing more than to come with Charlie to kindergarten every day and hold her hand when she gets scared and hug her when she laughs and mightily pound the tar out of any half-pint who even looks at her funny.

Because I’m guessing the principal would, you know, frown on that.

Charlie wanders over and hugs my knees.

“Mama,” she says, eyeing the principal, “why talk to doctor?”

“She thinks I’m a doctor,” the principal says.

YES!!! I scream inside.

“Of course,” I say, putting on my sad voice. “She has seen so many in her short life, she just assumes this is a consultation.”

The principal shakes her head in regret.

Charlie laughs at something and I’m praying it’s not a full diaper.

“Isn’t she precious,” the principal says, and leans over to look in Charlie’s eyes. “You are a sweet girl, aren’t you?”

Charlie smiles. If I could toss her a fish I would.

“Charlie,” she says. “Charlie — what’s her middle name?”

She asked! She asked! She asked!

“Pauline,” I reply evenly.

Her eyes light up.

“We have the sweetest boy here by the name of Paul,” she says. “He also has special needs.”

I feign surprise. The delight is genuine.

“Unfortunately,” she says, turning back to me, “it’s not up to me whether she gets in.”

Damn. Damn. Damn.

“You’ll need to apply through the lottery like everyone else.”

I hold back barf.

“However,” she leans forward and lowers her voice, “if she doesn’t make it that way, apply for a medical transfer. I will approve it.”

I stare at her. She nods and smiles.

Looking down at my little girl, I feel like collapsing.

In a gesture no more sincere, but infinitely less calculated than any other I have made that day, I start to cry.

Patience is an effing virtue

They say God/Mother Nature/fate never gives us anything we can’t handle. I just wish He/She/it would put it to a committee first.

It’s my personal belief that we are given the exact opposite of what we can handle, that we are tested most in the areas where we are weakest. It’s probably the universe’s way of making us grow as human beings. Or something.

Take me: I am terrible under pressure and have a temper like a light switch. So what did the universe do? It gave me two kids who require a tremendous amount of patience.

To make it worse, before I had children, impatient parents were the kind I hated the most. I witnessed their outbursts and assumed they were miserable people who shouldn’t have reproduced. That may be true in some cases but some of us are really nice.

We’ve just been pushed too far.

Take, for example, a recent day out with my kids.

To start off, I was a wee bit stressed. The kids were off from school and an ice storm was coming so I knew we were facing days cooped up in the house. I was also sleep deprived, because my 4-year-old had woken me up at 2 a.m., just to ask how I was. The plan was to get them out of the house and moving around, and then deal with the dishes, laundry, etc., later.

Going out with my kids can be — interesting. Jack’s autism means he can be single-minded to a maddening degree. His current obsession is hand dryers and he must check every public restroom to see which kind they have. He also needs to know exactly where everyone is, all the time.

Charlie is 4 but has yet to master toilet training. Also, her speech can be difficult to understand and her receptive language is delayed. As such, we have frequent and frustrating exchanges in which one of us is telling the other something really, really important that just can’t be understood. Often tears are involved on both sides.

We headed to Monkey Joe’s, one of those bounce house valhallas that kids love and parents loathe. I particularly hate it because I always get static electric shocks out the wazoo when we’re there.

Since school was out, the place was packed with squealing kids. Every 20 minutes, Charlie would ask to use the bathroom and we would push through the crowds to get there, but every single time she had already filled her diaper. She has this bizarre ritual of greeting her waste, asking after its health and saying how happy she is to see it. She bids it farewell and sometimes even cries when we throw the diaper out. (Yeah, we use disposables and therefore suck.) Perhaps it’s her Celtic blood that makes her take a few minutes to reminisce on all the great times she had with that Pull-Up. Whatever it is, it tacks an extra five to 10 minutes on every trip to the bathroom. Jack happily accompanies us each time to study the hand dryer.

“It’s an Xlerator, Mama!” he shouts happily.

By lunch time I have been zapped by static electricity roughly 5,000 times and I’m ready to leave.

On the way home, Jack asks if we can eat at McDonald’s. Why not? I think.

Yes, I sometimes let my children eat McDonald’s but before you go all Jamie Oliver on me, let me stress the sometimes part. Also, that part about it causing cancer?  I’m not buying it. Besides, my kid already has cancer and I figure, what are the chances of the universe kicking us in the nuts twice, am I right or am I right?

Anyhoodles…

…we have never been to this McDonald’s before and the kids are thrilled by the play area, which is teeming with children climbing what looks like a primary-colored intestine.

My son inspects the insides of the tubes and finds the ones that lead to the “baby” slides. My daughter starts climbing and doesn’t stop until she is waving at me from a window about 20 feet off the ground. She has joined a pack of 10-year-old boys, who don’t see her as a 4-year-old child but as an inanimate object they can push past and climb on top of to get where they are going.

After a few minutes, Jack comes over and asks for Charlie.

“She’s up there,” I say, pointing to the highest tube.

He looks horrified.

“That’s so high up. She’s going to get scared.”

“She’s not scared, buddy.”

Suddenly, I hear her voice right behind me.

“Mama! Hi, Mama!”

I turn around but she’s not there.

“Mama!” I hear again. “Mama! Where are you?”

It takes me a minute to realize she is at the top of the tallest slide and that her voice is carrying through the tube.

Jack starts to cry.

“She’s stuck! She’s stuck up there!”

“She’s not stuck, buddy. She’ll come down when she’s ready.”

But she doesn’t. Several boys slide down and one of them tells me, “She’s in the way. She won’t come down.”

Oh, great.

“Charlie!” I call. “Charlie, come on down.”

And then I hear the words that make my stomach sink.

“Help you?”

Crap.

“You can do it on your own, sweetie,” I call up cheerfully but I’m not convinced. “Just come down the slide. Or turn around and climb back down.”

There is a pause and then again:

“Help you?”

Jack cries harder.

“She’s up there all by herself!” he sobs. “She’s so scared.”

I kneel down in front of him and put my hands on his shoulders. Damn it, another electric shock.

“She’s going to be fine,” I say.

“But she’s all alone!”

“Jack, I need you to be a big boy and stay right here.”

I turn to the opening of the tube.

“I’m going in.”

Even though I am short, climbing up those pipes is nearly impossible. The angles are so steep I have to belly crawl, pulling my body weight with my arms. Kids scramble past me, claw over me, to get where they are going. Seriously?

It occurs to me as I inch up that no one has cleaned this thing in a while, if ever. It smells like feet. The plastic is grey with dirt and stray hairs cling tenuously to the bolts holding it together.

I hear Jack sobbing on the ground and Charlie calling to me from above. Another group of kids comes up behind me and tries to get past but I turn and block the tube with my feet.

“Guys! Seriously. Stop. Wait your turn.”

One tries to push past me again and I grab him by the arm.

“I said stop! Get behind me and WAIT YOUR TURN.”

This time they listen and we inch up the swerving tubes as a pack. We finally round a corner and there’s my Charlie, smiling sweetly, her feet dangling down a — HOLY HELL, they call that a slide??? It’s practically a vertical drop.

An unmistakable smell hits me and I realize that the sight of the laundry chute McDonald’s is calling a McSlide must have really scared the crap out of her because she has filled her diaper. The last diaper we had. Damn.

“Mama!” she cries, grinning, and crawls to me. I reach out for her and as my hand touches her shoulder all the energy I’ve built up sliding along plastic tubes is discharged in a massive, painful electric shock so strong I can hear the pop.

“HOLY F*CKING SH*T! F*CK! F*CK! F*CK!!!”

I grab her wrist and pull her back down the tubes feet first. We emerge into the relatively fresh air and Jack smiles through his tears.

“Mama! Charlie!” he cries, and throws his arms around his sister like he hasn’t seen her for weeks. I smooth my hair from my face and stand up. Suddenly I notice the once loud room has gone quiet and that the parents are glaring at me.

“What?” I want to shout.

And then it hits me: the tubes. The tubes carry sound. They carry sound really, really well. Every profanity-laced sentence I uttered on the way up and down, every time I yelled at their kids and my own, has been carried and broadcast to the room with alarming clarity.

Slowly, I lean over to Jack and say, “Get your shoes.”

“But — but — but I’m having so much fun!” he cries.

Turning to him, I growl in a there-is-no-Dana-there-is-only-Zuul voice: “We are leaving. NOW.”

We pack up and go quickly and quietly, our tails between our legs except for my daughter, who doesn’t have room because there is an enormous pile of crap in her pants.

The point of all this is that yes, I am still working on my temper. But I have dropped a habit equally as bad, if not worse: I no longer judge parents who are losing it for no apparent reason.

What I now know is that there’s ALWAYS a good reason to be yelling at your kids, and that when I come across a mom — or dad — turning purple with rage, I’m witnessing only a part of what could well be a trying day. I get that I wasn’t there when she patiently answered her children’s questions and calmly responded to their needs. I don’t know how many times she has been zapped by static electricity, or listened to her daughter eulogize her own feces, or heard her son wax lyrical about the Xlerator’s newest model.

All I can say is that if the universe is indeed testing us, it really better have an excellent reason, such as strengthening us or improving us in some way.

Because otherwise, it’s just being a prick.

llll