Fragile X Life Meets... Potty Training!

Reblogged from November 2013

I have a line of cards in my head (Hallmark? You out there? Wanna make a deal?) Called Mom to Mom or some such thing. One of the cards would have a picture of a kid’s potty on the front and then when you opened it would read, “I’ve been there. AFTER you’ve cleaned the poop off your rug, I’ll come over with wine.”  

Or maybe it would have a: Top Tips from Someone Who’s Been There list with things like:

Think of potty training like housebreaking a dog. The cleaning products you’ll need are at the PET store. 

Don’t ever stop to consider that the stain is chocolate. It’s poop. It’s always poop.

Kids won’t leave the room to go to the toilet when they’re engrossed in watching a show. Ever. No matter what. Put the potty in the living room. Trust me. 

Pee on car seats is disgusting. Taking off car seat covers to wash them is a complicated, tortuous task. Pick one and get used to it.

Etc. Etc.

In this same theme of pretend printed materials, I have a non-fiction collection of essays titled “Poop, Urine, Vomit, and Blood: An Abstinence Manuel” Every essay would detail some of my “favorite” (most disgusting) situations involving things that come out of my childrens’ bodies. Target audience--those unencumbered of kiddos to help them make informed choice.

When I potty trained Toby, I never wrote about that process, but it seems as though someone is always posting in the facebook Fragile X group asking about how to potty train their special needs kid and when they do I always think it would just be easier if I had a post so I could give ‘em that link of WAY MORE THAN THEY EVER NEEDED TO KNOW.  

A kindly service, right?

In this spirit of over-sharing. Here’s that post.

Gaining Experience

To prepare me to potty train a special needs kiddo, I underwent my own “training” through experiences with my non-fx kiddos.

My oldest potty trained pretty easily right at 2 1/2. He was a people pleaser and once he figured out that using the potty is what pleased Mommy and Daddy he was all over it.  He couldn’t talk very well, so instead of potty, he said “Pi-ee.” But he didn’t have to be able to say it to use it. Thank goodness. Then I went out of town for a week and the person who was watching him wasn’t as adamant about his using the potty as I had been and when he realized that person didn’t care, he didn’t care. When I got back we had another week of re-training, but then he was all set.

My middle son was more stubborn. (Shocker. I know!) At 2 1/2, he wasn’t having it. Then Toby was born and Blue was all, I’ll show I’m in control of my own bodily waste products. I’ll show you by smearing it all over my bed and wall. Good times. We let things chill out for a few months (Toby was born in May.) then in the fall I put up a chart in the bathroom with a big picture of Chuck E Cheese and told Blue that he got a star for every time he used the toilet and when he filled up the chart we’d put him in underwear and celebrate by going to Chuck E Cheese’s. In other words, he was still in pull ups and I was letting him control when he used the potty (Because Blue is ALL about control) but he obviously started going more and more to earn his prize and by the time I put him in underwear he was pretty much only going on the potty anyway. I remember considering him potty trained 2 months shy of his 3rd birthday, but then at his 3rd birthday party, caught up in the hoopla of all things Birthday! and Party! he had his first accident in over a month. But accidents were rare for Blue.  

The take-away here is--every kid is different. Adapt as needed. 

Then Came Toby

Toby got a super cute Elmo potty seat (the puffy plastic kind that goes on the regular toilet) sometime when we was two, but he wanted NOTHING to do with it. Siting on this THING, feet dangling in the air, he was TERRIFIED.

Never mind. Adios Elmo potty seat.

Then when he turned three (May) I got him the Bjorn potty chair and we switched from diapers to pull-ups. Luckily Toby never had any anxiety about using the little potty (he continued to hate the big potty for a few more months) and was happy to use it if we sat him there and he happened to need to go. 

He was also happy to go in his pull up or on the floor if he happened to be naked. 

Months of this.

I knew we could never get it through his head that he was ONLY supposed to use the potty unless I took away the pull ups, but I needed a time when we wouldn’t be leaving the house.  So I chose Thanksgiving week. Toby and I even skipped the annual MFI Thanksgiving (held Wednesday) because we just weren’t leaving the house. 

Elmo got involved again but only through his video. We had a Bear in the Big Blue House potty video as well. And one book.(The theme of the week was clear.) And obviously plenty of food. We were set. No need to leave the house.

For the first three days there was a lot of poop and pee on the floor. 

Three whole days.  

But Toby didn’t like having poop on himself, so by the fourth day he was high-tailing over to his little Bjorn seat on his own when he needed to poop. 

The following Monday I sent him to pre-school in underwear. 

He still didn’t quite “have it” but we weren’t turning back. It took a few days but soon enough he came home in the same clothes he left the house in. Back then he wouldn’t ask to use the potty, nor would he (anywhere but home) just get up and go. But soon enough, they had him on a good routine and school-time accidents became rare.

About four months into potty training Toby, I wondered when I was would start saying he was potty trained. It took me awhile longer before I added the past tense, and even a year later I explain, “He’s been potty trained since 3 1/2 with Fragile X caveats.”

What are the Caveats?

Toby will go to the bathroom 75% of the time on his own without a problem. The caveat is that, at home, he never redresses himself other than underwear. At school he seems to get that he’s supposed to, but I’ve been told he’s pulled a post-bathroom streaking stunt at least once.

Another caveat with this is that he’ll start undressing BEFORE he gets to the bathroom and usually he likes to get completely naked. This is especially fun when we have guests.

And then there’s the rest of the time.

Another 20% of the time he will go to the bathroom on his own but get uh, “something” somewhere it shouldn’t be.  For example, he doesn’t always pay attention to which way he’s pointing and sometimes he’s pointing straight up, so.... time to change shirts.

Or, these days, he likes to pee standing up (we discouraged that for a long time) but he never lifts the seat and tends to get a lot of pee on the seat, dribbling down the front of the toilet, on the floor... 

And then the other 5% of the time he just pees on himself because for whatever reason, in that moment, he couldn’t be bothered to use the bathroom or ask to use the bathroom. Usually this happens in the car. I guess he figures what’s the point since he's nowhere near a bathroom.

Oh and if he’s outside and needs to pee, he just goes. We made the mistake of allowing this in our backyard but he doesn’t distinguish between the backyard being okay but the grass at the school or church playground NOT being okay. (Yup, he’s dropped his drawers in both of those locations.) Something we’re still working on.

Also, he’s still in pull ups at night. My big two were occasional bed wetters way beyond the age when they’re “supposed” to be night time trained, so I don’t care about that at all. Toby only wakes up dry a max of two nights a week, so he definitely needs pull ups for bed time.

Always Account for Some Fragile X Crazy

Toby went through a phase where he would start pooping in one toilet and then decide he needed to finish in another. Sometimes there would be a “trail” between bathrooms.

Not kidding.

Try NOT to picture this one. Toby, like oh, ALL children doesn’t believe Mom deserves privacy EVER and tracks me down when I'm using the restroom. On two separate occasions the sight of me using the toilet caused him to decide he needed to go too and RIGHT AWAY. Once he feels this urge there is no reasoning with him to go use one of the other bathrooms. It’s either I get up or he pees on the floor. I’ve gotten up.

Advice Vs Reality

On the National Fragile X Foundation's site it says, “Toilet training a child with fragile X syndrome requires that a number of behaviors and abilities first be in place. The child needs to be able to physically perceive that he is wet and communicate this. He needs to have significant periods of dryness, (about two hours) and have a fairly regular time for voiding or bowel movements. He also needs the motor skills and muscle tone to get to the bathroom and to sit on the toilet unassisted. Eventually he needs to be able to coordinate the entire process of feeling the need to go, getting to the bathroom, sitting down (or standing up for some boys) and actually going. All of this requires appropriate timing as well.

If your child is lacking in one or more of these areas, toilet training will be even more challenging.”

By these standards, Toby was NOT ready. Two hours! Ha! Toby went every 30 minutes. Only once he started getting the hang of being potty trained (end of the first week) did he begin to stretch his periods of dryness.  

And he was not “regular.”

And, when we started, he rarely verbalized wants/needs beyond “juice” and “nana.” (Banana)

HE wasn’t ready, but MOM was still ready to try. If I believed in going easier on myself I’d have waited longer, but if you know me, “going easy on myself” is never high up on my list of considerations.

These Days

We have extra sets of clothes stashed all over this town. At church. At school. In the car. In a plastic bag tucked into a tree crevice at our favorite playground. (Ok maybe not there.) But they aren’t needed often.  In fact, I’d guess the church set might be too small by now.  

We can go a whole week without an accident or bathroom mess, but just when I think he’s totally got it, he comes home from school in his second set. 

We’re actively working on no more “pee in the grass” as an option.

And continue to try to convince him that even in the car, he either has to wait, or tell me, so I can get him to a bathroom.

Potty trained...

with Fragile X caveats.

Just like he uses utensils...

with Fragile X caveats. (can and will are two different things)

And dresses himself...

with Fragile X caveats. (only when he wants to and then usually backwards, sometimes inside out too)

Between the caveats and the crazy, it’s all about the sense of humor, so if yours is strong, by all means, start potty training.