How to go on a roadtrip, by AJ and Zack

We recently made our 7000th trip to Chicago, for a follow up appointment for the STX209 drug trial the boys are participating in.  We have a good routine in place now to assure success for these road trips, but Zack and AJ would like to throw in a few suggestions of their own.

1.   Immediately after your seat belt is buckled, start asking "Hotel?" before your dad even backs the car out of the driveway.  Say it at least a dozen times an hour.  (Saying "Hotel?" is the Fragile X way of saying "Are we there yet?")

2.   Eat enough Doritos and drink enough cran-apple juice to vomit a bright, staining red across the car.

3.   (Zack's contribution) if you poop in your pants, pull it out and rub it all around the back of the car, your clothes and hair, and the iPad.  Work fast to get as much done as possible before someone looks back at you and screams bloody murder.

4.   If possible, hold off on numbers 2 and 3 until you've reached a stretch of highway where there are very few gas stations.

5.   When you get to the hotel, don't wait in the lobby for your dad to complete the check in process; you've been here before, you know your way around.  Let mom chase you to the elevators (she needs to get her blood flowing from that long drive, she'll thank you for it) and push buttons.  Any buttons you can find.  All buttons will take you someplace fun.

6.   The moment you enter your hotel room, begin running around, bouncing on the beds, and stripping off all your clothes to get ready to go swimming.  Even if dad hasn't brought the suitcase up from the car yet, you can be prepared by getting naked right away.

7.   Less than 10 minutes after getting in the pool, get out, grab a towel to drag behind you, and start for the exit.  Don't worry, someone is bound to follow you.  Shout out "Bye swimming!"

8.   Before bedtime, grind up as many chips and cereal on the beds as you can.  Spread the food around and then roll on it. 

9.   If you can't fall asleep and you get frustrated and overtired, throw all the pillows and blankets on the floor and kick them around, while screaming.  Nobody else wants to rest, either, they won't mind.

10. If you wake up in the hotel room and it's dark and no one else is up, a good way to entertain yourself is to sing.  Preferrably something by Yo Gabba Gabba, with a bunch of repetitive yelling.  If you get bored with that, recite all the lines to the Dora episode where Benny turns into a big potato.  That's mom's favorite one, so she will love waking up to it.

That's all they have for now, I'm sure they will add to the list in the future.

Madness on Monday, or This Is My Life

(Pretend it's still Monday night. Trying to write this, I was interrupted about a dozen times last night until I finally passed out, iPad in hand.)

Today I was driven nearly mad - mad, I tell you.

Aliza came home from school sick and tired.   Too sick and tired for dance lessons and basketball practice. I fed her and comforted her but she was certain she could not make it.  Well, I told her, she could skip dance, as long as she started homework immediately and then tolerated me tucking her tightly into bed by 7.  Somehow she summoned the strength to put on her leotard and leg warmers, and I assured her she'd feel better once she stretched out and warmed up in ballet.

The boys and I dropped her off and came home and I opted for the easiest dinner - popcorn chicken.   I popped it into the oven and we hung out for a bit.

While the chicken baked, I brought the boys upstairs for potty time and jammies, and was too late with Zack.   He had a desperately bad poop situation, which required considerable bath time.   What I thought was going to be a 5 minute changing into jammies became a half hour depooping and freshening in the bathtub.

I had Zack out of the tub, dried, lotioned and dressed before I remembered the chicken.   Burned it.  Blackened popcorn chicken.

So I whipped up a couple peanut butter sandwiches - the second easiest dinner, and much quicker than making more chicken.   I cut the finished PBJs into bite sized squares, slid them onto a plate, and then straight onto the floor.

Now you might be a believer in the 5 second rule, but I've been schooled on that.   If a piece of food falls onto an influenza germ on the floor, it's not going to take 5 seconds for that germ to become best friends with your food.

Now I picture that little flu germ, wrapping itself around my sandwich.   In my mind, it's tiny but neon green, and pulsing.

Anyway so yeah, I threw that right out.   And I mean, I threw them.   Because I was now on the edge of sanity.

Managed to knock out a couple more sandwiches without dropping them.  Mark got home from work and I left to pick Aliza up at dance.

"You were wrong. I didn't feel better after I warmed up. I felt sick the whole time."  Aliza claimed. "I threw up in my mouth like 3 times."

I was chastised.   So I told her how much fun my night had been.   She sympathized.

We walked into the house and she said, "Oh yeah, I can smell it."

"The poop?"  I asked incredulously, because what she should be smelling is Lysol and Clorox wipes.

"No, the burnt chicken," she declared.

Later on, as I kissed Aliza goodnight, she asked, "Do I have to go to school tomorrow?   Because I threw up in my mouth like 4 or 5 times."

Lord, give me strength!

Poop: The Hard Truth

As moms and dads of special needs kids, we talk about almost every aspect of our lives.  We share our hopes and fears, our trials and triumphs.  We express great joy at milestones finally reached, and desperate despair that some milestones will never be realized.  We talk good days, bad days and everything in between. 

There is one piece of reality, though, that I rarely see discussed.

This is about poop.  The poop of a 45-pound, five-year-old kid (two of 'em, actually) with sensory issues and anxiety but no sense of what is gross, who isn't potty trained.  At all.

Most of your five-year-olds have reached a point where mom doesn't have to be involved in their potty activities as much.  You might have your occasional constipation issue or God forbid, diarrhea, but by and large they are taking care of their bathroom needs themselves, like the rest of civilization.  You are probably only dealing with a little mess, while they perfect the art of cleaning their own butts.

Not so at our house.  I am as involved in the boys' personal bathroom experiences now as I was the day they were born.  The two of them poop an average of twice a day (not much constipation here, folks) and they are 5 years and 11 months old, which makes them (getting out my calculator out now) around 2,155 days old, which means there have been 4,310 poops per child, times two for twins -- 8,620 poops since February, 2005.  Roughly.  Now they were in daycare for about two years, and Mark changes his share, and we do get help from family, so it's not like I've changed all 8,620 of them.  But I've definitely changed the majority.

By the way, if the title wasn't warning enough, this post is not for the squeamish.

Gosh, there are just so many awesome things I have to say about the poop in our lives.  I hardly know where to begin.

First off there's the marvelous fact that I'm still shopping in the baby section for diapers at Target, for the 8th year in a row.  (Aliza was two and in diapers when the boys were born, and they are almost six now...I didn't even have to use the calculator for that one).

Secondly, there's the fact that I'm still dealing with things like diaper rash at age five.

But that's all nothing.

I have to worry about whether they have pooped and will smell in public, especially at school, when they are trying to find a way to fit in and get the other kindergarteners to accept them.  And when I say "they are trying" I mean, their teachers and therapists and I are trying.

While they aren't in control and aware enough of their functions to actually go in the potty, they are aware enough to know that they are uncomfortable after pooping and sometimes will stick their hands down their pants to itch or otherwise seek out what is making them feel uncomfortable.  That's certainly not going to lead to social acceptance.

(eeuuww, I know.  I"m sorry.  Hang in there.)

A faint aura of poo hangs in the air like a mist throughout the entire house, nearly all the time.  It's like we have a poo-scented air freshener.  We take diapers out to the garbage immediately to get them out of the house which helps eliminate some of the pungence.  But by garbage day, the stench around the garbage can is sometimes horrifying.

They aren't always cooperative with a diaper change.  There can be a lot of squirming.  Kind of like an infant might squirm, only they are 45ish pounds, and strong as oxes. 

You can scrub the top several layers of skin off your hands with antibacterial soap after changing a poopy diaper, but sometimes that smell just endures for hours.  Many days, I spend a great deal of time looking at my hands, sleeves, shirt, and pants trying to figure out if I got a little on me somewhere.  The scent of poo follows me everywhere I go.  (Oh my, no one is ever going to sit next to me again without sniffing suspiciously, are they?)

I've seen every form of poop that has ever existed.  I've seen hard and soft.  Rolly and sticky.  Runny and thick.  Stay-in-one-place, and go-all-over.  Brown, tan, beige, cream, green, black, orange, and yellow.  But basically, all the forms of poop can all be slotted in one of two descriptions; the rolly kind, or the sticky kind.

While I'm changing the boys, I'll discuss with myself the pros and cons of each type.  I can't decide which kind of poop is my favorite. 

The rolly kind is easy to pick up and dispose of, but is all too likely to roll right out of the diaper and onto the floor.  I may see it immediately and pick it up, or I may not see it.  In that case, either I see it within a few minutes and pick it up, or someone steps on it.  Preferrably me, or someone who will notice it right away and won't track it all over the house.

Or, do I prefer the sticky kind, which is nice because it doesn't fall out of the diaper and onto the floor.  It stays put on the diaper and the skin pretty well.  But if it does get onto something, its stickiness is less of an asset (nope.  pun absolutely ignored).  It sticks to hands, socks, knees, rugs, jeans, toys, books, couches, and pillows.

It's just such a tough choice.  Both kinds have their good points.

Can't wait to come over, can you?  I clean the floors and rugs regularly.  Lysol is my friend.  Come on by for visit.  Sit on the couch, hang out with me for awhile.  Just don't walk by the garbage can on your way in.

A Pooptastic Morning

I'm not exactly exploding with energy this morning.  This past weekend was the Mothers of Multiples Used Clothing & Equipment sale - which roughly translates into 20 or so hours on my feet over the course of 2 days, and 4 or less hours of sleep in between.  It's a ton of work but it's at least that much fun too.  Here's what it looked like when we were all set up and just waiting for the chaos to begin!

*I "borrowed" these pictures from my fellow twin-mom Alissa's blog.....thanks Alissa!

So anyway, being two days post sale you'd think I might be rested up and prepared to deal with anything my 3 little monkeys might throw at me.  And truthfully I do deal with whatever they throw at me, because I have to, no matter how tired or sore or sick or icky I might feel, it's in the Mom Rules.  Every mom knows it.  But Zack really tested me this morning.

My sons are 5 years old but not potty trained; I should preface by explaining that.  The darling husband and I have developed, among many other amazing skills, the ability to change a diaper on a 5 year old while he stands up and spins around, leans over, wiggles, and tries to run away.  We are quite good at it.  Actually Mark was doing it first, and I watched, scoffing and jeering until I realized there's a lot less bending over and fighting to keep the boy laying on the floor.  I started trying it, and lo and behold, it is actually a little easier to change a diaper on a child that stands up.  You might not believe it but don't knock it until you've tried it.  Come walk a mile in my Crocs.

This morning I started our morning routine diaper change/dressing for the day, and whipped off Zack's diaper without sniffing or checking at all to make sure it was not "full".  Poop fell to the floor.  (I fully admit my own responsibility here, I should have checked before so brazenly removing that diaper.)  And it is astounding and impressive how quickly poop can be spread throughout a room when it's on a 5-year-old's hands and feet.  Within about 12 seconds it was on the hardwood floor, the couch, the rug, and a throw pillow.  The throw pillow was thrown in the trash.  The rest of it I wiped up as well as I was able, and Zack got a fast impromptu bath because his hands, feet and legs were way beyond what a wipe could have cleaned.

Oh and this was all moments before we all needed to get in the car and drive Aliza to school.

So most of the deep cleaning had to wait until we'd returned.  On the bright side, we have a super clean carpet and couch now.

I'm thinking of applying for the word "pooptastic" to be entered officially into Webster's Dictionary for the purpose of describing mornings like this one.