Saturday, November 24, 2018

5th Annual Cohen Syndrome Association Fundraiser


Y’all! We can’t thank you enough! Together we raised a little over $2,900 for the Cohen Syndrome Association. Incredible! Thank you to everyone who not only supported us in our efforts but who prayed over this event. This is by far our most successful fundraiser to date. 



A huge thanks to my awesome husband, Brandon, and sister, Ashley, for their help, creativity, and last minute ideas the day of that made it all come together. A big thanks to our Noonday Collection Ambassador, Janell Mickelson, as well!





















Also, see that cute little girl with her giving jar? Sweet Audrey came to the event and gave all the money she had saved, $8, to her friend Clara’s cause. Sweetest thing ever. 



















Thanks again from the bottom of our hearts for supporting Clara and Katherine, the CSA,  and Noonday Collection! This money will help create an amazing conference in 2020 for families who have a child with Cohen Syndrome. It takes a village and we are grateful you are in ours!!!

Tuesday, November 13, 2018

Special Needs Potty Training . . . Take Two . . . One Year In

Y'all. We have officially made it to the one year mark of potty training Clara (our second attempt) and We. Have. Come. So. Far. I read back over the beginning days and almost broke out in hives.

Below is how we started a year ago . . . 
  • Every two minutes prompt to drink.
  • Every five minutes conduct a dry check. If dry give verbal praise.
  • Every thirty minutes - 10 minutes on the potty, 20 minutes off.

Needless to say, this year has simultaneously flown by and creeped by and we have spent a lot of time in the restroom, a lot of time cleaning up messes, and a lot of time cheering our girl on because she is stinking amazing!


For a refresher on the nitty gritty protocol details, click to read our 4 month update and our 8 month update.

The protocol we've been following, with the guidance of Clara's BCBA, is no joke. Talk about intense. But it is working, friends, and I can say it has been worth the work (as is most hard things).

Clara is so much farther along at this one year mark than I ever expected. She is urinating consistently on the potty and initiating at that! She initiates by walking to the restroom and waiting for us (so we still have to continually check her location in the house) or by taking our hands and pulling us in the way of the restroom. She rarely uses her AAC device to request potty (working on it!), but she is good about holding it until we give her the opportunity to go. When we are out in the community we offer her the opportunity to go every so often since she doesn't necessarily know where a restroom is located (and thus harder to initiate).


Now we just need sweet girl to poop on the potty. Mama is ready for this milestone. Ahem. She still prefers her underwear and all my pep talks about why it's super fun to poop in the potty and not our pants aren't sticking yet. :)

But she knows how to do it.

We traveled to CT for an entire week in October and I only scrubbed poop out of her underwear one time. ONE TIME! She initiated and successfully pooped on the potty 4-5 times, ohmygosh. We were amazed! And so thankful! What a gift, especially while on vacation!

Joke was on us, though, because the day we got back home she pooped her pants. And continues to do so . . . So basically she is playing us hard. You're not tricking us, Clara. :)

So where are we now, one year in?  . . . 

  • Continue to prompt her to use her AAC device to request potty when she initiates. When she drags us to the restroom, remind her to tell us by pushing her potty button. This has taken some trail and error over the last few months. We've experimented with her wearing her AAC 24/7 (but then she continuously chews the shoulder strap) and also leaving it out on the kitchen table (but then I'm always running to get it) or even leaving in the restroom (but then she forgets to use it for other things like requesting food/ toys etc). 

  • After a period of time of collecting data on her bowel movements and making adjustments accordingly, and after a recent two-week period of isolating ourselves to the restroom from 4:00-7:00p.m.* (after we discovered she could do it in CT and in an attempt to remind her that THE RESTROOM IS THE ONLY PLACE WE POOP), we are at a bit of a loss in how to encourage her in this area. Her BCBA is consulting the behavioral committee to see what other suggestions they have.** Any behavior specialists out there with any input or recommendations? I'm all ears!
  • Keep encouraging our girl and raising the bar and working hard expecting that in time, she WILL be fully potty trained. 
Thank you for your support and encouragement over the last year. We are so thankful for our family, friends, and overall community that stands with us as we tackle these extra hard milestones that come with raising a child with special needs. Prayerfully, Clara will be consistently pooping on the potty at my next update four months from now. 

Love this beautiful child! 
*No, not a typo. That's three hours in the restroom. Okay, so how did that work? Clara didn't have to sit on the toilet that entire time. But we did have to stay in the restroom that entire time. Since our data showed Clara typically only poops once a day, if she soiled her pants or had a success we could leave the restroom and go on with our evening, or if she soiled her pants or had a success earlier in the day we did not have to complete the three hour bathroom stay. Not having to stay in the restroom + unlimited IPad time was the reinfocer used for increasing the desired behavior. 

**Updated 11/20/18 per Clara's BCBA - Starting the Monday after Thanksgiving, 11/26/18, we will restrict her access to ALL light up/musical toys (HER FAVS!). As in, she gets zero minutes with any toy that lights up or plays music until she has a bowel movement on the potty. Once successful, she can have access to those favorite toys for the reminder of the day. AHHH. In the words of another behavior specialist, "This will be effective but the process will be hell." HERE WE GO! (Also, we no longer are to reinforce her at all for peeing on the potty as that is now a mastered skill.)

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