Pretend play tied to toilet training readiness?

Well, it's been a heck of a week! Here's, how it all went down, briefly:

~ Drove to Chicago Tuesday. Seemed like a longer drive than usual. I wonder if Chicago moved and is now even further away somehow.

~ Went to Rush University Medical Center for our drug trial check up. This was the yearly "long" visit - meaning blood and urine tests, an hour each with a psychologist (the boys, not Mark and I, although I'm fairly sure he and I need psychological help too), the physical exam, and 4 questionnaires. It took hours to get a urine sample from Zack. It took numerous pokes in two arms to get a blood sample from AJ. All in all, a 6-hour appointment. We left dazed and confused, just in time for Chicago rush hour. Good times.

~ Zack acted so strange the next morning. I wasn't positive he was okay, and therefore was so looking forward to the next 8 hours in the car with a kid who gags when I offer him chocolate milk.

~ Zack turned out to be okay. He was just super exhausted to the point of tears. The doctor appointment was really hard on him.

He eats some chicken, enjoys the free wifi at McDonalds, and begins to act more like the kid we know and love.

While I'm not convinced they got accurate testing results out of the boys (IQ tests right after stressing them both to the shrieking point with giving blood and urine samples? Come on!), the psychologist did have some interesting things to say. After he was through, he came out to the waiting room to chat with us. He was pointing out on a spreadsheet the different developmental stages, and where he thinks the boys are at. He commented that Zack appeared to be in the midst of the "terrible twos." Zack was wandering around the waiting room, whining and screaming at the time.

I don't know. I think most kids, almost regardless of age, would have complained about the fact that we'd been working to get him to pee in a cup for hours, by then.
He also talked about one part of the tests he'd performed, where he holds up an empty toilet paper roll to one eye and peers through it. He showed us how it's done there in the waiting room.

"Look, AJ. I see you!"

Then he handed the toilet paper roll to AJ. "You look through it, AJ."

First AJ handed it to me. I handed it back to him. "No, you look through it."

AJ obligingly put the toilet paper roll up to his face, directly between his eyes, and then handed it back to the doctor.

The doctor then explained that this is a good test of the developmental skill of imaginative play. If a kid holds a toilet paper roll up and looks through it, he is showing that he understands how to pretend. If, even after seeing someone else do it, he doesn't put the roll up to one eye and look through it, he doesn't understand really how to pretend. And the psychologist said that this developmental skill is tied to potty training. If a child isn't capable of pretend play, he probably isn't ready to toilet train.

He demonstrated it further by showing the boys a telephone handle - just the ear/mouth piece of one of those old style phones. Not a cordless, and certainly not a cell phone. He pretended to talk on the phone and handed it to Zack. Zack of course was having nothing to do with it. He had had it with all of us. AJ wouldn't do it, either.

I didn't mention that AJ has pretend conversations on our cordless phone all the time. He can talk to real people on the phone, too. He was born in 2005. He probably had no idea what that big, clunky old fashioned phone handle was.

So this past weekend, I happened to use the last paper towel on the roll. I took it in to the living room where AJ was watching You Tube on the iPad. I held it up to my eye. "Look AJ! I see you!"

I handed it over to him. AJ promptly held it up to his ear. "Hello? Um, ok. Goodbye!"

Survival Mode

The lovely and witty Laurie Lupinetti of Facebook and Fragile X mom fame recently talked about her potty training trials and struggles and brought up a good point.  A point that has resonated with me for days now.

When your kid has special needs and challenges, we can get so caught up in just surviving each day, hour, minute - each meltdown, each fit, each therapy session and doctor visit, each expectation letdown - that we tend to establish a routine that allows us to just survive.  To get through the motions and activities required to provide for our families every day.

Each part of the day contains individual struggles, and we do what we have to do to create a world in which we can survive - and then we live in it.   Little by little, that world we created becomes less and less like the real world.   We've made so many provisions and adjustments that what we have to do no longer really fits in with what the rest of the world is doing.  We're even more "different" and even more "special."

That's where we are at, as far as potty training goes.  We have created a world that works for us as a family, but it's not a world that shifts easily to the outside.  To the public.

Survival mode has morphed into a world where we are fine at home, but nonfunctional when it comes to the real world.  Where we keep the boys in pull ups so we can run through Target and focus on schoolwork and go to speech therapy and get enough down time and sleep each day, with minimal discomfort and screaming and mess and embarrassment.   Survival mode says we should do what we must, to survive.  Survival mode says it's okay to do what you have to do, to survive.

I'm beside myself with regret that I didn't check the camera settings and this is blurry, because it would have been a fantastic shot.  It's great of the trees behind him.

For me, survival mode includes pull-ups.

Sitting in a bathroom with a boy for 40 completely pee-free minutes and then having him pee on the recliner in the living room does not constitute surviving, because it makes me want to throw things. Surviving is putting that pull up right back on when he gets off the potty, so I don't have to figure out how to get the pee smell out of my chair yet again.  (I've tried covering the furniture, the boys don't like it, and they rip off any blankets or towels I put out.  While one's in the bathroom, the other is throwing everything right on the floor.  And my version of survival mode doesn't allow for constantly fighting with them about keeping the furniture covered, in between visits to the bathroom.)

The relief I feel when I put that pull-up back on?  It's HUGE.  I don't even know how tense I am, until I put the pull-up back on, and then exhale.  I'm tense the whole time the kids are pull-up free.  And I'm sure they feel it, and it doesn't help them to relax and learn to go in the potty.

What would have been a fantastic shot of Zack.  I'm so mad at myself.

Stacy, a blog reader and friend, recently emailed to tell me how she was getting it done with her FX son - she just, one day, told him they were finished with diapers.  Didn't plan it very much, just spur-of-the-moment, announced it.  And the first day or so was tough, but he is doing pretty well with it now.

And I thought, maybe I could do that - maybe if I eliminate the planning, I'll reduce the stress.  Maybe spontaneity is what we need.

And then I thought about the fact that I have two FX boys.  Should I do them both at the same time?  Should I do one at a time?  How is the one who is not getting trained going to deal with things?  For that matter, how is the one who is without pull-ups going to feel if he sees his brother getting to put them on?

This is why I think I need the school, and professional help.  Or else I need valium or something to make me not care that my whole house is a pee and poo infested nightmare, while the training is going on.

DON'T take me out to the ballgame, please.

We have the last Miracle League baseball game tonight.  It hasn't gone as I'd hoped.

I hoped the boys would adjust to the routine and if not enjoy it, at least go through the motions of the baseball game willingly.  That hasn't happened.  Maybe because they just weren't ready for it, or maybe because we lacked consistency (we missed a couple of weeks due to schedule conflicts, and got rained out twice).  But the fact is, they cry and struggle and appear to hate every second they spend on the baseball diamond.

They took a team photo last Monday night, and AJ managed to stand still for it, but Zack fought us and buckled and fell to the ground, screaming.  I'm sure it'll be a terrific photo with him looking like he's being poked in the back with a hot coal, and AJ standing next to him, crying.  Good grief.  Everyone else stood there for the picture.  A few of their teammates looked at them in amazement.  It wasn't their finest moment.

I pulled them out of occupational therapy on Thursday evenings to play baseball, and now that it's over, I think they should have just stayed in OT.  They didn't get much out of baseball, from what I can see.

I guess there's a fine line between encouraging and forcing.  Maybe we encouraged too much and it crossed that line.  There's a lot we try to do "for their own good," but it's also for us, a little bit.  Because sometimes we just want to have little boys who do normal things, like play baseball.  And this seemed like a great opportunity - a league especially for kids with special needs, where expectations and pressure will be low and they can just learn to hit the ball and run around the bases, and have a good time.

If we could do it over again, I don't think we would.

Potty training is disappointing so far, too.  No progress whatsoever.  I am filling out the intake forms and getting us on the waiting list to receive autism day treatment from Frasier, a program in the Twin Cities.  The waiting list is probably 6 months long, but we need help, and I am pretty sure we'll still need help in 6 months.  Frasier does a lot of life skills training, and that's something we need.

Nine Things Nobody Told Me About Potty Training a Child with FX

I knew this was going to be a long, painful process.  Children with Fragile X Syndrome and autism don't train quickly.  It can take years for them to both understand what to do, and have the physical ability to do it.

I feel like I'd heard all the tips and tricks.  Read all the books.  Talked to all the experts and nonexperts.  I thought I knew it all.

And yet, there are few things that I have learned in the last few weeks:

1. You won't need one exciting gift or reward or prize, to give your child after he is successful.  You will need a huge box of gifts, prizes and rewards, because the first success might be a random fluke.  You might have to reward more than one success.

2.  In fact, the first ten successes might be random flukes.  Success doesn't mean he's got it.  It might mean you've just spent so much time in the bathroom, that inevitably it was going to happen in there, eventually.

3. Some days you'll use every single prize, reward, and trick you've got just to keep him going into the bathroom to try, and then you'll find yourself wondering what on earth you can offer him in the event of another seemingly random success.

4. Your child will go through phases of being angry and then sad. Actually it won't be phases so much as just a revolving door of first angry and then sad, and angry and sad, over and over.  It's hard to be happy about spending lots of time in the bathroom.

5. Your child has a bladder the size of the Hindenburg, apparently, because you will pee nineteen times for every time he pees.

6. Invest in a carpet and upholstery steam cleaner, and be prepared for your house to smell like pee.

7. Be grateful if pee is all it smells like.

8. There is nothing wrong with food in the bathroom. Or drinks. Or toys, books, TVs, or computers.  That's why there are outlets in there.

9. Every bathroom should be spacious enough for a big, comfortable chair or two.

Good One!

....unfortunately.

Vacay: Starting Summer with a Bang

Sometimes it seems like the work involved in getting ready to go on vacation makes it almost not worth the trip.  Not only do I have to get Mark, Aliza and I ready to go, I have to get the boys ready to stay home with their Grandpa.  And an hour after our plane lands back in town next week, Aliza's due at her dance dress rehearsal. One hour.  So I have to have all her costumes and tights and shoes and makeup and accessories assembled and ready to go now too.  Then she has recitals all weekend.  Then, six days later, AJ and I take off on a jet plane to the MIND Institute in Davis, CA to complete the second half of the word learning study.

So I'm a little bug-eyed and frazzled right now, making lists and crossing things off and worrying that I'll forget something.  It's almost not worth it.

I'm sure I'll be singing another tune on Saturday, though, when I'm lounging in a beach chair, watching the waves roll into Galveston.  In the back of my mind is the prize.  I will miss my boys, but I can't wait to go spend a few days without them.  To be able to actually pay attention to everything around me and take endless pictures, and not constantly have an eye and two hands tied up with the boys.

Potty training sucks.  There's probably not a parent alive who wouldn't agree with me.  No progress so far.  I've gotten some great ideas though from a reader.  We've been emailing back and forth and I am so grateful for the support and encouragement and advice, because yesterday, just for awhile, I really lost hope it'll ever happen.  I'm posting her suggestions as comments on the post right before this one.  Check it out.  I'll post more about that later, when we find time to put the program in action.

Back to my list I go, but first, this cute (although grainy) picture of AJ:

AJ's one glove obsession continues.  I'm going to find him a shiny, sparkly one and teach him to do the moonwalk.

My Manny's Take on the Potty Wars

Potty training has been slow and without progress, mainly because we aren't consistent. We sit on the potty and try when we have time, but then when we have to go somewhere, which seems like it's all the time, we put on a pullup and off we go.

So this week Zack decided he's not liking the feel of a pullup with, shall we say, stuff in it. He takes it out.  With his hands.  He's done it every day for almost a week now.  (Sorry for the TMI, but this is my life.)  I will be horrified if he ever does that at school.  Luckily, he usually doesn't do that at school at all.  He holds it all day and saves it for home.

At our appointment with Dr. Berry-Kravis this week, she said that's his way of telling us - I need to be doing this on a potty!

Which, duh - we know.

So we decided to make some changes to our schedule, and we've quit Courage Center.   For at least two weeks, we aren't going to have outside therapies, so that we can come home from school and sit on the potty until we see some action.  I am just working on Zack right now.  Because the last time I worked on them together, they ganged up on me.   AJ sat on the potty and tried, and nothing happened, so he put on some Go Diego Go undies and went to the computer to wait for Zack to take a turn.  While Zack was sitting, AJ peed.  A gallon or so.  While I cleaned up AJ's mess, Zack took it upon himself to get up off the potty and pee on the floor, too.  I swear they plan these things.

So I'm letting AJ off the hook for awhile and focusing my efforts on Zack.  When Zack finally does poop on the potty, I told him I'd get him a new episode of Super Why for the iPad.   They are only $1.99.   Then later it dawned on me that I'm setting an expensive precedent, if every poop is going to cost me $1.99.

I'm a little disappointed that my manny Ryan Gosling isn't really here to help me with this training, but alas, he is imaginary, and our training needs are very much not.  When the poop is on the wall, it's time to crack down.  I guess it's time to stop waiting for my Fairy Godmanny to show up and do the work.

Check out the other Special Needs Ryan Gosling entries here, at Adventures in Extreme Parenthood!

Bottle Battles and the Potty War

Come on, tell me that's not the best titled post I've ever had?!  A totally typical mommy blogger title (from this very nontypical mommy blogger).

We have completely, undeniably, utterly won the bottle battle.  Zack drinks from a Nuby sippy cup (and no other kinds) regularly, and bottles are history.  This is a HUGE step forward.  I didn't have a lot of faith it was going to happen, and thanks to the unwavering support of the teachers at school, therapists at Courage Center, and Mark, we made it.  I don't give myself credit at all, because I alone could never have done it.  I'd have someday in the future had a 6'5" 20 something-year-old drinking from a baby bottle.  And you, you bunch of wonderful, supportive, loving friends and family, you wouldn't have even blamed me, I bet.  But I'm telling you here and now officially -- the only credit I deserve for the bottle banishment is setting a date to begin the battle, and organizing and educating the troops.  After that I sort of just sat back and watched it happen, because I worried that if it were just up to me, the screaming and crying would have broken me down very quickly.  I knew where the weak link was.

Oh, he still asks for applesauce.  But I make him drink a whole bunch from a sippy cup first, and he does it.  And he doesn't even mind.





Yay, I did it!

I hope the potty war goes just as smoothly.

We have begun that in earnest, although this past weekend we didn't have a lot of time to work on it.

They are so very pull-up trained.  They know just how to wait until they have a pull up on, to go.  At school, they wanted to know what we could offer them, if and when (don't you love my faith in success here?  "If") they went in the potty.  What would they just LOVE, what would make them want to go in the potty again, to get that prize again?

Well, there just aren't that many things we can work with here.  I'm using the iPad just to get them on the potty in the first place.  So here's the plan:  we are going to take away their two favorite foods, right now.  Zack gets no more Honeycomb.  AJ gets no more Doritos.  Until they have a success on the potty.  Hopefully then they will think, "Oh, that's what I have to do to get more of these!"

The biggest hurdle is going to be consistency.  We are busy after school and most evenings, so it will be hard to push them day to day, and not give them time off to just wear the pull ups. 

There's next week, for example.  We have another trip to Chicago.  And I'm not putting them on gas station potties.  Yucko.  Yes, I know they will have to be able to use them eventually, but we aren't going to train on them.

We will just have to work it hard, whenever we can.

Potty Training Confessional

People are forever telling me what a great mom I am. I always feel guilty when I hear it, because the truth is, I'm a huge slacker.

My boys aren't potty trained, and you might think that's because they have Fragile X Syndrome, but that's not the whole of it. They aren't potty trained because I haven't really worked at it.

You might recall (or, more likely, this post will have the same labels as the previous potty training posts, therefore linking them at the bottom here) that awhile back we tried a hardcore potty training program with our ABA therapists.

It did not go well. Zack and I both decided that we weren't ready for that.

Fast forward almost two years though, and the boys are getting so ... big. We better get ready, because time is flying. And our ABA therapists are gone. Nobody is around to do this now, but me.

Aliza was so easy to train, you see, because her daycare provider did it. And if you are reading this, thank you, Jessica, I'm forever in your debt. Now will you come over and train the boys?

It's not that I don't know what to do. When someone in the Fragile X group on Facebook recently asked a question about potty training, I had a great suggestion for her. I'm very helpful and knowledgeable when it comes to what other people should do. Not so good at following my own advice, I guess.

So. Tomorrow morning (the first day of spring break) we are putting on underwear, and then sitting on the potty as much as possible. I know they like the comfort of the pull up. I also know they do have the self control to hold it and not go in their underwear. And I'm going to bet a lot of iPad time that I can get them to use the potty the way it was meant to be used. At least I'm going to try.

Wish us luck.

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.