Special Needs Potty Training . . . Take Two . . . 16 Months In

We've made it 16 months in our second go-round of potty training!

The day we took away Clara's pull-ups feels like an eternity ago. The last 16 months have felt long and hard, but like a lot of things, worth the work.

Click here to read the one year in update. 

When we left off at the one year mark, we had just finding collecting data on her bowel movement habits (lovely, right?), and had experimented with isolating ourselves to the restroom for three hours in the evenings in hopes to catch a a BM success, which proved ineffective.

Finally, on January 21, 2019, we pulled out the big guns.

I posted about it on Instagram here. Recap below in italics.

Well, today is the day. I’ve been avoiding this like the plague but after 14 months of cleaning up poopy pants I figure maybe I should take the advice of Clara’s BCBA and just do it.

See all these toys? Yeah. All of Clara’s favs. And they will disappear by the time she returns from school. 

Once she successfully poops in the potty she will have access to all of them for the remainder of the day. Then they disappear again until the next success. Repeat daily. Omgosh.

She is a cute but she is stubborn (14 months and she’s only had one poop success and ONE POOP ACCIDENT AT SCHOOL. Meaning, she doesn't poop in the toilet at school nor does she poop in her pants at school). She just loves saving it all for mommy and daddy. We feel so special. :-)

It’s not everyday someone asks you to pray for their child’s pooping habits, but if you feel so inclined ... 🙏🙏🙏. Day one! Here we go! #specialneeds #cohensyndrome#operationpoopgoesinthepotty

We are now a little over a month into this method of positive reinforcement, and while it isn't moving as fast as I would like, we are seeing slow signs of progress. The hard part is having eyes on her 24/7 to catch her signs of needing to have a BM. Additionally, if I miss the signs and she goes in her pants (which she likes to do the minute I leave her room/presence), it might be several days until the next BM, which lessens the opportunities to pair the behavior (poop in potty) with the reinforcers (light-up, musical toys). 

Camille is the BEST cheerleader around. 

So while it feels S-L-O-W and some days I want to poke my eyes out, I can't deny the success she has had over the last six weeks. She's pooped in the potty at school three times and three-four times at home. The excitement on her face when the toys come out (the second any poop hits the toilet water) is beyond precious! 

Not pictured, ALL THE TOYS ON HER BED. 

Slow and steady wins the race, right? Easier said than done, but that is what we are clinging to during this season on life. Put in the work now and eventually it will pay off. So we press on.

Praying that in four more months, at the next blog update, we have much continued success to report! 

This girl. Just can't get enough of her!

ALSO, here's a little laugh for you in case you need one on this Tuesday. Last week I was in that crazy hour of day called witching hour (yes, it is still a thing when your kids are 5 and 6), so I left Clara in her room to finish dinner prep. Brandon walks in the door five minutes later (mistake numero uno, left Clara in her room unattended for five minutes) so I ask him, "Hey, once you get changed can you go check on Clara?"

Several minutes later he's all, "Ummmmmm Britt. What is going on? Did you forget to come back and clean up all this poop on the floor?" And I'm all, "I know I am losing my mind and forget a lot of things, BUT DO YOU REALLY THINK I WOULD JUST WALK AWAY AND LEAVE POOP IN HER ROOM?" I turn the corner and he is standing there, dumbfounded, with Clara's pants, poop-streaked-underwear, and poop in his hands. 

Guys. 

She pooped her pants once I left her room and THEN SHE TOOK HER PANTS AND UNDERWEAR OFF ON HER OWN. 

There she stood, leaning over her bed, naked from waist down, playing happily with her favorite fidget toys. 

I can't even, you guys. 

So while this whole situation was gross (#understatement) and obviously not ideal, can we all just stop and cheer that this kid 1. is starting to recognize poop is gross and shouldn't stay in her pants and 2. knows how to pull off her pants!

That is all. 

Happy Tuesday! 

Clara's latest EEG Results and Update

Cutest girl in the world! 

Clara had her second EEG done in early April of this year. Her first was done at just over one year old.  The reason's for ordering this test is too much to get into here, but basically we have been working toward securing state services for Clara and have been going through the beast of a process of getting denied because she is not deemed "severe enough" - requesting an appeal for a fair hearing - completing two fair hearings - gathering letters of support from all of Clara's medical professionals to speak to our need for services - etc. It's been a blast!

Or the exact opposite of a blast. 

Anyways, I asked our neurologist (who we had not seen in several years) for a letter of support for our case and in order to get said letter we had to make an appointment (since he had not seen Clara in such a long time). After updating him on Clara's latest milestones and ongoing goals, I mentioned Clara spaces out from time to time, he wanted to rule out any seizure activity, so he ordered an EEG. 

He also ordered a sleep study as she wakes nightly for one to two hours. 

We received the results last week. Her EEG came back "sufficiently abnormal." This type of seizure activity is suspected and she will have a 24 hour EEG sometime in the near future to get a better idea of what is going on. If needed, she will be treated with medication to help control the episodes. 

Her sleep study results came back normal. Apparently she just likes to party at night! Disrupted sleep is common in kids with neurological differences/special needs, which we knew, so thankfully there is not more going on there. 

The neurologist explained that sleep deprivation lowers your threshold for seizures plus effects developmental abilities, so a non-habit forming sleep medicine for bedtime was prescribed.  

Clara on her 6th birthday! Took her to the mall to ride the carousel, her favorite! 

I had a hard few days after learning of these results. For some reason the word seizure just made me feel sad. I was honestly probably more in shock that anything, since I was not expecting these results, but I am doing much better now!

The good news: The neurologist, along with Clara's pediatrician and eye doctor, all agreed that they have seen many kids who were having these a-typical absent seizures get on medicine and then experience a boost in development. All three professionals said this is good news. Now that we know what is (most likely) happening we can take steps necessary to help Clara progress in all areas of development. This is a huge blessing!

God works in mysterious ways, friends. If we had been approved for the state services initially we would have never pursued letters of support from Clara's doctors. Thus, we would have never made an appointment with her neurologist and he never would have ordered the EEG.

Please pray for Clara (and us) as we get ready for this test. 24 hours is no joke. She put up a fight for the 1.5 hour test, so ya know (smile). Thankfully we have a prescription medicine that should help calm her (for a time) but 24 hours is a whole new ballgame.

Thank you for the prayers and support!