Monday, February 28, 2011

Fidgets, Speed, and Other ADHD Treatments

One of the most amazing things since the Pork Lo Maniac’s ADHD diagnosis is her own self-awareness of her behaviors. She feels the difference when she’s on her meds. On Sundays I usually give her the choice of taking it or not; she almost always chooses to take it. The new medication that she’s on doesn’t disrupt her appetite quite as much, and she isn’t getting headaches.

The only weird thing about her new medication is that the generic form of Adderall is amphetamine. So in my kitchen cabinet, on a top shelf, I have a bottle that says “Amphetamine, extended release.” Because who doesn’t want their speed to be extended release?

Yeah. I give my kid speed every morning. We sprinkle it onto a spoonful of yogurt. I’m *exactly* like Mary Poppins.

We called her Focalin yogurt “Fogurt.” I’d like to call this one “Speed, Yo” but probably I shouldn’t encourage my daughter to call it speed. Normally I teach my kids the actual name of what they take, but having her say that she’s taking amphetamines seems a little … off. In this case I’m just telling her it’s Adderall.

The Pork Lo Maniac has also become much more aware that she is better able to focus when she has something to fidget with. When there are no fidget toys available, she chews on her hair (which is slightly more socially acceptable than chewing on her shirt cuffs, which is what she used to do). We now have a supply of pencil grips, bendy erasers, Silly Putty, and small stretchy lizards for her to fiddle with when she’s doing homework. The pencil grips are ideal in school because they’re small and (hopefully) not a distraction to other students the way Silly Putty or a stretchy lizard can be.

We have also realized that having a fidget toy helps her to relax enough to fall asleep. The problem here is that you don’t want to fall asleep playing with Silly Putty, because that can necessitate an early-morning hair cut. Erasers and tiny lizards get lost amongst the sheets. (Not surprisingly, she’s an “active” sleeper, and the sheets and blankets end up twisted and jammed.)

The solution turned out to be a ribbon- and button-trimmed taggie or lovey. She normally likes “squishy” fidgets but was surprised and delighted to find out that she likes ribbon fidgets, too.

Etsy artist Pitter Patter Stitches was kind enough to make a custom taggie for the Pork Lo Maniac, and it is amazing. First of all, it’s totally not a “baby” thing. It was custom-made for the Pork Lo Maniac, so it is exactly perfect for an almost-ten-year-old girl who adores all things Asian. It is super-soft red fleece with (insert chorus of angels) the Chinese symbol for “go to sleep” on it in black.

It’s big enough that it’s not going to get lost in her sheets, but small enough that it’s totally portable. It’s also way cool enough to be out when her friends are over. In fact, The Pork Lo Maniac asked me to tell you about her taggie because of the awesomeness. And because it really helped her fall asleep.

And believe me, when the speed wears off? You do need that sleep.

Friday, February 25, 2011

Family Fun and Panic Attack Night

Last night was Fourth Grade Family Fun Night at our school.  Bonus: It had a Western theme and involved square dancing.  So obviously the stark. raving. mad. family. rocked the Western wear look.  I mean, you know what they say: you can take the girl out of Texas, but you can't take the Texas out of the girl.

The thing about evening activities at school is that they are both awesome and horrifying.  Awesome in that generally they're fun, educational, free, and build a sense of community.  Horrifying in that it will inevitably trigger a panic attack and/or meltdown in at least one of my kids.

The thing is, you just never know which kid it's going to be.  Sure, you can guess that it will be Little Dude.  There's a good chance that a deafening, scratchy version of "Cotton-Eyed Joe" is going to trigger a freak-out.  It's loud, there's lots of people, and they're all moving.

You might guess that it will be Cookie, who has serious trouble with anxiety.  Maybe she'll panic that she won't be able to square dance as well as the other kids.

You might even guess that it will be the Pork Lo Maniac, crashing off her ADHD medication while simultaneously overloading on fruit punch.

No one ever suspects the Peanut Butter Kid.  She's like the quiet ninja of panic attacks.  While her older sisters joined in the square dancing (thank you, Texas education), and I held Little Dude above the fray, the Peanut Butter Kid went from clapping along to sobbing in the space of 60 seconds.

When I asked her what was wrong, she responded, "I just don't want to be here with all these people any more."

Ah.  Turns out a swirling mass of people do-si-do-ing through the gym triggers panic attacks in the Peanut Butter Kid.

We stood outside in the rain for a while, and then finally went back in, me still holding Little Dude, and the Peanut Butter Kid clinging to my side.  We sat down in the far corner.

And then.

The Peanut Butter Kid's best friend in the whole world, the one she couldn't wait to return to, came over to us.  She assessed the PBK's watery eyes and trembling mouth, and broke out into the goofiest, most awesome dance moves ever, until the PBK laughed.  Before I knew it, the PBK and Little Dude were both dancing with her.

Not in with the mass of people, and not doing the square dance moves being called.  Just having fun, dancing.

A six-year-old made everything better, in the space of 60 seconds.  This little girl, genuinely one of the kindest people I know, took my breath away with her ability to make things not just better, but awesome.

Amazing.

Thursday, February 24, 2011

Darth Vader - Justin Bieber Mash-Up

You know what the world needs now? James Earl Jones doing a poetic reading of Justin Bieber's song "Baby, Baby, Baby."

Finally, a cover song worth listening to.




You know what would make that significantly better? Dubbing it into Star Wars footage.




But you know what would make THAT even better? Adding in movie titles and Luke Skywalker's horrified screams.



Now if someone could just make a Lego version of this, we'd be all set. Sigh ... no one has made a good one yet. Maybe someone will. Hopefully, the people who made this:

Wednesday, February 23, 2011

Dear Random Concerned Stranger


Dear Random Concerned Stranger,

Yes.  My son is getting a little big for me to carry around.  I know this.

I know this because he weighs 50 pounds now and carrying him is hard work.  See the sweat on my forehead? 

I'm not choosing to carry my son around because I'm to poor to join a gym (although I am).  This is not some new Mommy-and-Me workout program (although I think I just got a brilliant business idea).

I'm not choosing to carry my son around because I'm babying him or being permissive or because I subscribe to extended-format Attachment Parenting Theory.

I'm not choosing to carry my son because I adore how it shows off the top of his size 6 Pull-Up.

I'm not choosing to carry my son around because These New Moms Don't Know What They're Doing and in My Day Our Kids Walked to the Bathroom and Went Potty When They Were Thirteen Months Old.

I'm choosing to carry my son around sometimes because he becomes overwhelmed by certain sounds, certain people, certain smells, and certain random stuff we encounter in our everyday lives.  Sometimes I can predict what's going to freak him out, but often I can't.  It just happens.

When my child is overwhelmed by the world, I hug him.  I pick him up because it makes him feel safe.  And if we happen to be in motion at the time, then yes, I am going to carry him.

I have no idea why it bothers you, Random Concerned Stranger, if I carry my kid around.  It's not like I'm asking you to carry him for me.  In fact, it's not like this affects you at all.

And yet, you are compelled to comment, to advise, to correct.

He's five. He's heavy, but I can still do it. Eventually, I won't be able to do it. Obviously I won't be carrying him into high school.

But for now, I'll do it because I can, and it helps him.

Thanks for your concern.  Now please mind your own business.

xoxo,

stark. raving. mad. mommy.

Tuesday, February 22, 2011

Stimmeriffic

Things are getting set up nicely here now that our stuff has arrived and the girls are back in school.  I have a meeting this morning to start setting up Little Dude's services.  There's still a refrigerator on my porch, but whatevs.

Oh, also, I turned up the heat and the kitchen suddenly reeked of gas near the basement door.  So, you know, that didn't seem good.  I called the maintenance guy, who called in the heater guy, who announced that our boiler was unsafe to use.  It had to be turned off.  As in no heat.  Yeah, it's 25 degrees out.

(Note: Being told you need a new boiler is significantly less painful when you're a renter.  It's like, oh, that sucks for the owner.)

However, a new boiler is supposed to be installed today, and props to the facility manager for sending over four space heaters toot sweet.

Except that plugging in two space heaters upstairs overloaded the ancient wiring in the house, and tripped the breakers.  After resetting the breaker switch twice, we gave up and unplugged the space heaters.  Good thing we have plenty of blankets!

It's kind of in keeping with our whole no-dishwasher, no-cable, Amish Paradise theme here.  Awesomesauce.

Other than that, and our continued status as flat broke, we're doing fabulous.  Little Dude is enjoying his break from school, so I've actually seen less of his "Aspergerish" behaviors.  Although then we unpacked all the Legos, plus the Lego guys that weren't already in our pockets, and he basically stimmed for a whole day.

Speaking of stimming, does anyone else's Aspie or autistic child hold their breath while stimming?  Like, just stop breathing because whatever they're focused on is so flap-inducingly fabulous?  Little Dude has broken blood vessels around his eyes from holding his breath for so long.

I asked our pediatrician about it a while back, and she said that it's pretty common with autistic kids, and that sometimes they'll actually pass out, which then causes their bodies to "reboot" and start breathing again.

Wait, what?  It's okay for kids to just pass out?  Apparently so.  Holy crap.

Monday, February 21, 2011

Scams and Annoyances

This entire adventure has reached the point of being surreal.  After living in our house for a week with almost no furniture, our stuff finally showed up on Thursday.  The stuff arrived courtesy of the long-distance driver and two local guys to unload the truck.  And, of course, a bank-breaking transaction.

The two local guys? Were amazing.  They hustled boxes, shoved a King-size mattress up a narrow staircase, and moved a double dresser, fully loaded, up the stairs like it was nothing.  They did this fueled only with a steady stream of Mountain Dew soda.

The driver, on the other hand, swept out the truck, which apparently had been sullied by some of my escaped packing peanuts.  He broke a sweat doing this.  He also made the time to come into my house and comment that it wasn't as nice as the house we'd moved out of, and that we had too much furniture now for this little house.

And then I punched him in the throat.  With my mind.

Actually, after a while I said, "I need you to stop making comments like that.  I am fully aware of how much furniture I paid you to move across the country."

The situation got worse when my beloved, one-year-old French door refrigerator wouldn't fit into the house.  I mean, even taking the doors off the fridge and the door of the house, it won't go in.  This rental came with a fridge; all I wanted to do was store my fridge on the enclosed back porch until we finally buy a new home.

Alas, it does not fit.  So now I have a shrink-wrapped refrigerator on my front porch.  My friends have all suggested that I should accentuate it with lots of Christmas lights and a flower pot made from a toilet bowl.  I am sorely tempted to fill it with beer and enjoy the Eagles games out there.  I bet we'll be the hit of the neighborhood.

Anyway, as I say, the damn thing does not fit, and the driver would not stop pointing it out. (Mind punch.)

I'm sure you can figure out who got tips and who didn't that day.  And, yes, I made my thoughts known to the moving company -- about how suckish the driver was and how amazing the two unloaders were.  In fact, I even got their direct supervisor's name and number so I could call and compliment them.
After much soul-searching, and realizing how freaking broke we are anyway, we decided to sell the fridge, so I listed it on Craigslist.  So far the only responses I've gotten have been scamtastic.

If you've never sold anything on Craigslist, let me tell you this: all email you get through Craigslist comes with a giant banner on it warning you about scams.  It specifically tells you to avoid checks, money orders, escrow, shipping, etc.  It goes on to explain that fake money orders will be cashed initially, but then when it gets returned to the bank, you'll be responsible.

Got that?

Here's a sample email I received:


Aaaaand here's another one.


Yeah.  So, there is still a fridge on my porch.  Awesome.

Thursday, February 17, 2011

Cheaping Out

So, I'm totally ecstatic to be back home in Pennsylvania.  It feels like we were just exchange students for a year, and now we're back.  Except that we're in a different (smaller) house, and our furniture isn't here yet, and we haven't sold our house in Texas yet.  So, you know, there's that.

We're in the process of setting up services for Little Dude, and planning for Kindergarten next year.  The girls all start back at their original elementary school today, and we'll be looking into setting up 504 Plans for the Pork Lo Maniac (ADHD) and Cookie (anxiety).  We even stopped by to see our friends at the public library today, and it was big fun.

So you know what isn't going swimmingly?  Finances.  We're carrying a mortgage and a rental.  We've finally had some showings on our house in Texas, so we're optimistic, but in the mean time?  We're cheaping out.

No cable.  No eating out.  No land line.  No brand-name anything.  Keeping the heat low.  It's kind of amazing how much we don't need, actually.

Our rental home doesn't have a dishwasher or a microwave, so between that, the cheaping out, and the no furniture, it's like we're squatters or something.  Cookie said it's like we're Amish.  I agreed and suggested the kids should have more chores.

I do have to spend some money.  This house had no blinds or anything downstairs, so I picked those up for cheap at Target.  My husband had been living here for a month without that stuff, but he's a guy, and apparently guys are pretty much oblivious to that kind of thing. 

For example, he was living here with no shower curtain.  I suggested he could have bought a shower curtain liner and rings for like three dollars, but he was like, meh. Why spend the money when we'll eventually move our old shower curtain out here?

Although it did disturb him that one our our cats kept watching him shower.

Obviously I brought the shower curtain with me in the van when I drove out here.  I can't have the cats watching me shower.  It's enough that the kids are constantly banging on the door.

What else can we do to cheap out?  I changed my prescription antidepressant from a brand name ($60 copay) to generic ($4).  I make my own laundry detergent.  We go to the library and the playground for fun.

What else?  What do you do to cheap out?  I have a lot of readers with special needs kids, and you know insurance doesn't cover the half of it.  Where do you cut costs so you can still afford the necessities?

Wednesday, February 16, 2011

Travelling with Kids and Autism: 10 Tips to Help Your Trip Not Suck

In the last two years, I've taken the kids on four domestic flights, two international flights, and four cross-country road trips.  One of the flights and three of the road trips were on my own with the kids. 

Yes, I'm insane.  But also, life goes on, even with four kids, and one on the spectrum.  My sister got married in Mexico and we had an amazing time there.  We visited family in Florida and Texas, we moved, we visited friends.  We went all over the place and had fun.

During these many adventures, I've learned quite a bit about travelling with a special needs child -- but most of what I've learned applies to all kids, not just those on the autism spectrum.  Most kids do well with routine and some semblance of structure, even especially when on the road.

Most of these tips are geared toward keeping things seemingly "normal" even when nothing is normal.  This helps keep their behavior on more of an even keel, which in turn, helps keep you relatively sane and possibly even able to enjoy the travelling.

1. Lower your expectations.  Trips and vacations are supposed to be about making memories.  Those memories don't have to look like something out of a magazine.  It will be the stupid things that happen during your trip that make the memories, anyway. 

Like, remember the time Little Dude threw up in the hotel lobby in Louisiana?  Remember the horrified look on that old lady's face?  Good times.

2. Plan ahead. You already know that you need to pack juice boxes and Goldfish.  In fact, there's probably already a stash of these in your car already.  So you need to think about what will keep your sanity in the inevitable moments of travel stress.  In our case, this meant keeping five Lego minifigure guys in the pocket of my jeans at all times.  It also meant have extra "fidget toys" for my daughter with ADHD, and new chapter books for each of the kids to read at bedtime in the hotel.  My friend Sandra packed sticker sheets for her daughters to do in the car, and we both had new books on CD to listen to in our vans. 
3. Pack food. Sure, if your child has massive food allergies or feeding issues, go ahead and pack all of it.  You can even ship some ahead to the hotel to make your suitcase lighter.  But for most kids, they just need to have some familiar foods.  There is nothing wrong with bringing your own little cups of strawberry-flavored apple sauce down to the hotel restaurant at breakfast time.

Seriously, this really does apply to neurotypical kids, too.  My friend Sandra's little girls Minnie and Daisy were distraught over the lack of "normal" bagels at my house when they visited us in Texas.  Texas bagels made them cry.  (I sympathized.)

This is one of those times where other people are going to think you're obnoxious and catering to your child's whims instead of forcing them to experience new things and try new foods.  Those people can suck it.  They're not the ones who are going to have to put your stressed / rashy / hungry / constipated child to bed that night.


4. Pack effectively.  People who tell you to "pack light" clearly have no idea what they're talking about.  There is just no. such. thing. when packing for a family.  The thing to do is try to pack smart so that you don't end up with your spine fused in new, uncomfortable ways from carrying five duffel bags into the hotel.

I have a slightly insane system for packing.  It involves putting together one outfit for each day, for each kid, and lining them up in columns on the floor.  I add to the columns the outfits for me and my husband.  And yes, when we travel together, I pack for him.  Because he will just pack five pairs of shorts and three shirts and all of the shirts will be striped and all of the shorts will be plaid and seriously, it's just better for everyone this way.

This system is important because for multi-day car trips, I pack one duffel bag for each night. One time I packed one bag for each person in the family, and then I had to schlep five duffel bags into the hotel every night.  I never made that mistake again.

If I pack one duffel bag with a day's worth of clothes for everyone, then each day I'm just carrying in a fresh bag, and carrying out a load of laundry.  This is critical when I'm travelling without my husband to act as the bellhop for our family.

On this last trip I totally ran out of duffel bags because the Professor already had one of ours in Pennsylvania, so I had to pack one day's clothes in a garbage bag.  I know it's super-tacky but I'm pretty sure the desk clerk has seen worse things.

Really the only down side to packing things in garbage bags is the overwhelming temptation to just throw the dirty clothes in the hotel dumpster so you don't have to do so much laundry when you get home.

Besides the bags for each day, there is also a second "every night" bag that has the meds, the nebulizer, and the swimsuits (for hotel pools).  There would also be a sweatshirt for each kid if they're not already wearing one. 

The "every night" bag also has our toiletries.  Between the fine motor skill delays and the skin sensitivities, there is just no way we can mess around with tiny bottles of coconut-lime-scented hotel shampoo.  On this last trip I brought our Shower Assistant set from Bloom and Grow.  The kids know what to do, and I'm not in the steamy hotel bathroom fumbling with itty-bitty bottles for them.

5. Your schedule will be all messed up. But your routine doesn't have to be. Even if your child ends up going to bed at 10 p.m., try to make his or her bedtime routine pretty much what it is at home. Shortcuts do not pay; you'll just be banging your head against the wall at 11 p.m. because little Susie didn't have a drink and then a book and then brush teeth and now she cannot possibly go to sleep because everything is all wrong.

The only hope of getting my kids to sleep in a strange bed is to make sure they get plenty of exercise.  We try to stay in hotels with pools so they can swim after dinner, and we stop at the welcome centers that are inside each state line.  The welcome centers are more likely to have some outdoor space for running around.  Some of them even have a kids' play area inside.

We also try to stop for lunch at places with play areas.  I've become quite the connoisseur of McDonald's play areas, and shamelessly plan my stops around them.

6. Accept the sleep situation. Speaking of sleep, it's best if you go in to the whole thing with the understanding that that your child will be completely out of whack sleep-wise (and therefor behavior-wise) for the entire trip, plus some extra time after the trip.  The recovery time will be approximately half the time of your travel.  Just accept this fact and move on. 

7. Routine is king. This means that even if you find, by some miracle, a "Back to the '80s" radio station in South Carolina, your child is still going to want to listen only to the songs he has already heard a hundred times before.  He wants to hear them in the same order (alphabetical) and at a consistent volume.  He does not care that you are rocking out to "99 Luftballons" for the first time since 1986.

8. Check your bags.  If you're flying, you're going to have to check some bags.  Your days of flouncing off the plane and past the baggage conveyor are over.  First of all, there's that suitcase full of soynut butter you're bringing.  God knows what kind of security alarms are going to go off if you try bring that stuff on board. You'll be on some watch list for sure after that.

Secondly, even if you manage to jam your family's stuff into a carry-on, it's going to be the heaviest damn carry-on evah.  Just check your bags and enjoy the toddler-chasing and people-watching at the airport.

Also?  When they ask for people who need to board early?  They are talking to you.  The airline wants you to be happy and/or not delay the flight because your kid freaks out in that slow, slow line of people shuffling onto the plane.  I had no idea until someone explained this to me.  I thought pre-boarding was for the uber-rich, people with infants, and people in wheelchairs.  But it also means people with kids who need to touch every. single. seat. on the plane before they can sit down.  Or kids who need to have ear plugs in place before the plane is full.  So go ahead and board early and get comfy.

9. Above all, bring documentation.  Besides bringing the original bottles of all prescription meds, bring a letter from your doctor stating that your child has autism, and listing any allergies or other special needs your child has.  Supposedly at Disney this is some kind of "get of out of jail free" card that lets you circumvent lines.  More importantly, it will shut the yap of anyone who gives you a hard time about boarding the plane first and bringing your own food into restaurants.

10. It'll be okay.  Unless you're travelling to a third-world country, really, everything is going to be okay.  If someone gets sick, there will be doctors.  If you run out of something, there will be a place to buy more.  (Although it might be wicked expensive.)  If you need help, there will be people to ask.  Ideally, if you need help, you should be in Tennessee, where people are so nice you think at first they're being sarcastic.  But really, strangers are generally pretty helpful wherever you go.

Happy travels.

Friday, February 11, 2011

Thelma and Louise / Smokey and the Bandit

Two vans, two moms, and six kids.  That is how we are driving across the country this time.  It is awesome and hilarious and exhausting.

Obviously, it's too many kids to be Thelma and Louise.  Plus, seducing Brad Pitt would clearly involve shaving my legs, so that's just out.

Anyway, the best part of this trip is that my friend Sandra bought walkie-talkies so that we can communicate between the two vans safely, instead of fumbling with our cell phones while driving.  So we're a little more Smokey and the Bandit than Thelma and Louise.

The first day of driving was pretty much nonstop rain, so we were too busy white-knuckling the steering wheels to really enjoy the walkie-talkies.  The next day the rain had finally stopped, and ohmygahd the walkie-talkies are so. much. fun.  They're super-handy for saying things like "that's a big 10-4, good buddy" and "where the hell is the nearest playland so these kids can get their fruit snack energy out?"

Even more hilarious?  When other people respond.  I really don't have a good enough grasp of 1970s technology to understand how these walkie-talkies work, but it involves being set to a certain channel.  If other people are on that channel, they can hear you talk and you can hear them.  This is similar to how you can have your privacy invaded and possibly your identify stolen if you don't buy the really expensive baby monitors that somehow block Uncle Creepy from listening in.

At least that's what they told me at the store when I was registering for baby stuff a million years ago, anyway.

While driving through Houston, we heard a taxi dispatcher checking car locations, for example. 

But then in Pensacola when we were trying to find a playland, some guy chimed in with "nah, there's no playland at that McDonald's."  Which was totally creepy because these things have a radius of eight freaking miles so how did he know where we were looking for playlands?

So obviously, Sandra was all happy that a local might have important information for us, like, where the hell is the nearest playland.  So, very politely, she asked, "Do you happen to know where there are any playlands around here, sir?"  Sadly, the guy did not know.  Because he was either eight miles away, or Uncle Creepy, or both.

Or maybe he was the cop that I drove past right after that.  Do police officers use walkie-talkies?  Is it possible that we have accidentally chosen the "cop channel" for our walkie-talkies? 

Or I guess that would be the "Smokey" channel.

Thursday, February 10, 2011

Another Reason Astroglide Should Be on Every New Mom's Shopping List

I'm on the road from Texas to Pennsylvania, and I got the most awesome email about feeding tube awareness week.  It's one of those stories that makes me feel like I'm normal because other people are just as awkward.

I asked the writer of the email if I could share it, and she agreed, on condition of anonymity.

* * * * * * *

Dear SRMM,

Thanks for your post about feeding tube awareness! So many people have no idea about kids with feeding tubes. My son is now six and thankfully has had his G-tube removed, but for a long time it kept him alive. I'm forever thankful for his second belly-button.

Thanks for giving such a public shout out to all the tubies. And I thought I'd share my best tube story with you, just because I feel you may be warped enough to appreciate it. :)


The boy was still a tiny baby, four months old and maybe 6 pounds - we'd only been home from the NICU for a few weeks. Late one Sunday night, hubby and I were changing the water in the balloon of the tube, as instructed by the surgeon.

This involved inserting a syringe in the tube button to drain the water from the balloon that was inside his stomach, keeping the tube in place. We successfully drained the water out... and then the boy sneezed. And the now-drained and empty tube shot out of his abdomen. Oh. My. God.

So now we've got a squirmy, sneezey baby with a hole in his stomach where the tube's supposed to be, and hubby and I are looking at each other, wondering what the hell just happened. There's a clock on these things, you see, and if you can't reinsert the tube within an hour or so, then they have to go back in surgically to do it.

So at this point I am freaking out, hopping around and kind of flapping my hands, "whatdowedo, whatdowedo, ohmigod, whatdowedo?" Hubby thankfully is made of sterner stuff and called the doctor.

Did I mention this was late on a Sunday night? Oh, yeah, and that it was Mother's Day? My very first one. Welcome to motherhood. So we start calling the surgeon - and of course he's not on call, because it's late on a Sunday night and it's MOTHER'S DAY.

Finally the doc who is on call gets back to us, with these instructions: you need to reinsert the tube yourself. As in, shove that sucker back through the hole in his stomach, and make sure you do it right.

Seriously? Seriously?! This is not covered in those stupid What to Expect books. The doctor tells us we will need Vaseline to put on the tube to help reinsert it - she will wait on the phone and talk us through it.

And here is where I make a giant ass of myself.

I start running around, frantically searching the house for Vaseline, and finally return to phone, to shout, "We don't have any Vaseline, but we've got Astroglide! Will Astroglide work?! It's lube! We've got lube!"

There is silence on the other end of the phone. Hubby is staring at me with that look that means, "I can't decide whether to laugh or divorce you."

After (more than) a few moments, the doctor finally says, in a remarkably calm voice, that, yes, Astroglide would probably work fine. It is only later, once the tube is back in and the boy is fed and sleeping peacefully, that I realize what I'd done. Crap. Crappity crap crap crap. After that night, I tried to slink invisibly in and out of the doctor's office for all the boy's follow-up appointments.

Life with a tubie - always interesting. And yes, now we keep Vaseline on hand at all times.

Thanks again for your recognition of our tubed kids!

Sincerely,
Anonymous

* * * * * * *

Dear Anonymous,

You are awesome.  And an amazing mom.  In a moment of crisis, you didn't hesitate to humiliate yourself in order to save your child from needing surgical intervention.  You didn't even hesitate.  Rock on with your bad self.

Also?  This is yet another reason to include Astroglide in baby shower gift baskets.

xoxo,
SRMM

Tuesday, February 8, 2011

Focus Group Failure

Watching TV with my friend Sandra's daughters Minnie and Daisy the other day I caught a show called dirtgirlworld.  It's a great premise -- all about the earth and recycling and gardening and whatnot.

Except.

The characters are cartoons with actual human eyes and actual human mouths.  It's like Stabbity Nana Doll decided to make an environmentally-correct kids' show.  It's freaking horrific.

I want to like it, I really do.  I love that it's about a girl who isn't afraid of getting dirty.  But why, oh why, do the characters have to look like this:



I don't know.

Another show I wanted to like is LazyTown. Sure, the name is annoying right off the bat. But the show is really about getting kids to eat healthy and exercise. Awesome, no?

Uh, no.

LazyTown featured a bunch of creepy puppets and a bunch of creepy people.  It starred Stephanie, who was either a nine-year-old girl or a 35-year-old Ukranian gymnast, I'm not sure which. 

The other lead character was Uncle Creepy Sportacus, an active proponent of healthy eating and snug-fitting pants.  There was also a guy named Robbie Rotten, who also loved the Lycra.  I haven't seen junk on display like that since the old Batman show.

LazyTown seems to have gone out of production, because as much as we'd all like to encourage our kids to exercise, eventually everyone noticed that the show sucked monkey balls.

Seriously, what kind of focus group approves this stuff in the first place?  Did they put a bunch of moms and kids in the room, and deny coffee to the moms until they said they loved the shows?  I'm sure kids like it, but guess what?  It's not going to be on in my house if it makes me feel like I've had a stroke.

Monday, February 7, 2011

Blog Business and The Awesome Winner

Bloggy Business ...

Hey dudes.  If my posting is sporadic over the next couple of weeks, don't be alarmed.  On Wednesday of this week, I'm starting on our trip back to Pennsylvania!  No, we haven't sold the house, but whatevs. 

While this is awesome and exciting, it also means I'm up to my eyeballs in packing peanuts. 

Even when I'm not posting, I'll still be spouting my nonsense on Facebook and Twitter, so please follow me there if you aren't already.


And the winner is ...

Cave Momma, Neil Pasrischa is hiding under your chair!  Or maybe not.  But you totally won last week's giveaway of The Book of Awesome.  Cave Momma, please email me at Mommy@starkravingmadmommy.com with your snail mail address!

I Heart a Tubie

This week (February 6 - February 12) is Feeding Tube Awareness Week.  I have a handful of friends whose children have or had feeding tubes, and my family has had its share of feeding issues.  Feeding tubes are the kind of thing that seem really weird at first, but then the more you're around them, the more normal they start to seem.

This is why my family is entirely comfortable around people with feeding tubes.  We're used to weirdness already.

Little Dude was on a prescription elemental formula for three years.  Ironically, our insurance company gave us extra hassle because Little Dude wasn't tube-fed.  The formula he used, Neocate, is so often associated with tube feeding, that we had to obtain it through a durable medical equipment provider.  Our insurer ended up covering 70 percent of the cost.  The remaining 30 percent, which still ran into the hundreds of dollars a month, put us into credit card debt. 

Regardless of the damage to our bank account, I am forever grateful to the makers of Neocate.  At one point, the only thing Little Dude could ingest was Neocate.  He was allergic to everything else. 

That is not an exaggeration.

I started out breastfeeding Little Dude, and gradually eliminated foods from my diet that seemed to be causing him gastrointestinal pain.  As his allergy tests came back, I would drop more foods.  Eventually, I was pretty much eating pork, potatoes, and lettuce, and he was still not healthy. 

Our pediatric allergist gently broke it to me that I had to stop breastfeeding.  Non-prescription "hypoallergenic" formula, like Alimentum, still had too many whole proteins in it.  We had to go down to the elements that form the proteins, which meant Neocate.

Little Dude thrived on Neocate.  You would never have known, to look at him, that he couldn't eat any foods.  What can I say?  We are grateful for the credit card debt.  Best money we ever spent.

It was hard, though.  I would try eat while he was sleeping, because I felt like it was cruel to eat in front of him.  For a while he would cry and try to grab food from us, but then he kind of gave up.  I don't know which was worse. 

In almost every culture, meals are the most important social activities.  Families revolve around mealtimes; a party isn't a party without food.  We skipped a lot of social events because they were food-focused, which meant they were both unsafe and depressing.  And holidays broke my heart.

None of my children has ever needed a feeding tube, so I can't speak for those parents.  What I'd like to say to my friends with "tubie" kids, though, is this:

  • Your child is beautiful.  The NG tube or the "extra belly button" does not change that one bit.
  •  Feeding your child is the most basic of maternal instincts.  You are feeding your child, even if it's not the most traditional route.
  •  Dude.  This is hard, and you're doing an awesome job.


Video courtesy of www.feedingtubeawareness.com.

Wednesday, February 2, 2011

The Book of Awesome

{{Note: Comments and contest are now closed.}}

To enter to win a copy of The Book of Awesome, leave me a comment and tell me something awesome.  It can be anything: that someone else unloaded the dishwasher, that you got a piece of good news, that you made it through the day without throwing a brick at the television.  Whatever.

Thank you so much to everyone who responded with advice (or just sympathy) to my rant yesterday.

The Book of AwesomeOne of my readers recently put me in touch with a writer named Neil Pasricha, who writes a blog called 1000 Awesome Things.  He writes about the awesomeness of the everyday: illegal naps, terrible businesses run by children, and wearing underwear just out of the dryer.

Seriously, I defy you to look at this list and not feel better.  His blog is so full of the awesome, that now it's a book: The Book of Awesome.   Neil was kind enough to send me his book to read, and it's simply wonderful.   The Book of Awesome is rich with reminders of how amazing everyday life is.

Your comments yesterday also reminded me that in moments like this -- when I'm overwhelmed by raising four kids, trying to sell a house, and missing my husband -- it's important to breathe and enjoy each moment for what it is.  And also to give the kids baths before dinner because it's not like I'm going to have more energy later.

I wish I could give each and every awesome one of you a copy of this book.  You should have it as a badge of your awesomeness.  The awesome people in your life should have it for Valentine's Day.  If I was Oprah, I'd scream, "look under your chair, because Neil Pasricha is hiding under there with a copy of his book and we're all going to Australia!"

Alas, I can only give away one.  And we're not going to Australia.  And Neil Pasricha is not hiding under your chair.  As far as I know.

In the spirit of 1000 Awesome Things, here are ten awesome things about my day yesterday:

1. It's warm enough here that I wore flip-flops and capris.
2. E-mails that made me laugh.
3. This news story: Law enforcement, community, and a little dog collaborate to find autistic 6-year-old who wandered
4. My laundry? It's done.
5. Designing a stabbity Valentine card.
6. No one needed help with math homework.
7. Pizza delivery.
8. Paper plates (sorry, environment).
9. We played outside after dinner and I taught the girls how to do cartwheels on the lawn.
10. Little Dude saying, "I just want to snuggle."

Your turn!  Leave a comment, tell me something awesome and you'll be automatically entered to win your very own copy of The Book of Awesome



What This House Needs Is Extra Kids

My incredibly good friend Sandra has driven out from Pennsylvania to hang out with me, help me pack, and attempt to keep me relatively sane.  She brought her adorable twin five-year-old girls, because:
  • They are escaping the Great Snowpocolypse of 2011.
  • Obviously what my house needs right now is more children.  Preferably ones with jars of glitter.  In fact, I bet if I give each of the six children an open jar of glitter, I'll get a call for a showing right now.
  • She's the kind of person who thinks, "You know what sounds fun?  Throwing a couple of preschoolers in the van and taking a drive to IKEA.  Or maybe Houston." 
I have friends that are awesome.

Actually, the addition of two kids totally does make this situation better.  I always find that having more kids over ends up being less work for me.  My kids are distracted and for a change they don't want my attention. 

What's really interesting for me is watching Little Dude interact with these two little girls.  Minnie and Daisy are "typically developing," in the sense that they're not on the spectrum.  They are, however, brilliant. 

I don't often get the chance to see how Little Dude interacts with kids his own age.  He's had a few playdates with boys his age, and had fun but was worn out and overwhelmed pretty quickly. At playgrounds, or in waiting rooms, he doesn't initiate conversation with other kids. He's either really content playing on his own, or the thought of engaging with someone is just too stressful to consider; I'm not sure which.

Although he doesn't suggest activities to play with Minnie and Daisy, he's happy to go along with whatever the rest of the group is playing.  Periodically he'll become frustrated or overwhelmed, and retreat for a break. 

Minnie and Daisy don't seem to notice that Little Dude is a little different.  Maybe they just expect lots of quirkiness at our house, or maybe their parents have taught them to be accepting, or maybe they think all boys are weird.  Or maybe they just don't think he's any nuttier than any other kid their age.  I mean, this is an age group that really enjoys putting underwear on their heads.  So perhaps Little Dude's social difficulties pass unnoticed.

In any case, having our friends here has blown life and energy back into our family.  While we're still here, we're going to try to soak up as much as possible of the stuff that we do love about Texas.  We're going to take our friends to shop for cowgirl hats, we're going to eat tons of that awesome coconut ice cream, and we're going to play outside in the sunshine.  The grown-ups are going to try Shiner Bock and we're all going to try Crawtators.

I'll report back on the Crawtators.
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