Sunday, October 4, 2015

Potty Training

Dear Jules, In the spirit of DS Awareness month, I'm going to post something boring but perhaps useful to parents of kids with Down Syndrome. I've actually written and deleted this three times now because I SWORE I would never be that mother who talked about her kid's poop in public, much less in a blog that you can read, and squirm at, when you're older. Having said that, I feel like parents should at least get a sense of what they are in for, and so these are my gems of advice. Keep in mind that my child is still not potty trained, or really even close to it, so take these "gems" with a grain of salt.  So here are some things that parents do that don't seem to work so well on kids with Down Syndrome:


  • Give them candy and/or reward them when they sit on the potty.  Now again, you are not all kids with Down Syndrome, and we never gave you candy on the potty--I'm too much of a germaphobe--, but we did decide to let you do something you loved on the potty:  to read.  And so you read...a lot.  You didn't do anything else, but you read.  Finally, my good friend Cindy told me that this might be confusing to kids with DS.  Think about it.  You sit down somewhere and you always read, so the potty must be for reading, right?  So we finally stopped doing that.
  • Only have them potty train when they are "ready."  We tried training you when you were three, and you didn't seem to care one way or the other--you were perfectly happy to go in your diaper as long as you still got to play.  Well, now you're 4 1/2, and you still are.  People with DS might be hyposensitive, which means they need high levels of sensory stimulation.  It's why you always hug your friends too tight and love amusement parks and have ridiculous pain tolerance, but it's also why you don't really feel it when you have to go (not always a strong sensation).     So, at least for now, I'm not sure sensation is the way to go. 
  • One of the more extreme suggestions we received is this sensory diaper that literally senses when it's wet and sings a song.  The "girl" sensory diapers sing "twinkle twinkle little star" (as an aside, there is NO difference between the girl and boy versions except that the girl is pink and the boy is blue.  And cheaper.  You might not get potty trained, but welcome to consumerism 101).  "Twinkle twinkle" is one of your favorite songs, so you all can guess what happened here.  Every time the diaper sang, you would clap and say "more."  And you'd be all done by the time we went potty.
  • What is working now is the tried and true "give up your adult life and go to the potty every 30 minutes" technique.  We tried 45, but you must have a tiny bladder, like me!  Anyway, we got you a potty watch that beeps every 1/2 an hour, and you know now that means we sit on the potty and try to go.  In fact, you've even started signing "potty."  

So I'm holding my breath that this will work out because, even though this sounds like a stupid little thing, they won't let you attend summer camps if you're not potty trained, they won't move you up to the next class at school, and even the current teacher changes your diaper begrudgingly.  It's a small thing for most people but, for you, a huge step toward independence.  And for that, I have risked your collective "eeeew"s and your later "oh, MOM."  And I will also put up a sweet picture as penance:

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