Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

My twins are about to turn five and neither is potty trained.

With Wilma, I see light at the end of the tunnel.  WHEN she’s in the mood to sit on the potty, I can usually encourage her to try, and she makes (#1, not #2).  She gets a treat and lots of praise and she’s thrilled.  And then 20 minutes later she pees in her pull up.  But she GETS it.  There are two things keeping her in pullups now….. #1, she dribbles every 20-30 minutes rather than holding it in and making once an hour or less.  She certainly can’t be bothered to go to the potty that often.  It’s a muscle thing having to do with her hypotonia, apparently.  But I’m thrilled that she can control herself enough to on purpose put something in the potty when she’s in the mood (a few times a week or so).  #2, she’s not often in the mood.  We JUST started adhd meds.  When she wants to be compliant and do what she’s supposed to do, it’s fine.  But more often than not, I suggest sitting on the potty and she takes the towels off the racks, reads the shampoo bottle, turns on the sink, says nonsense sentences (her latest one is “why does the traffic change cars when there is a jaguar with a tail on it?  Because they have sippy cups!”) and can’t focus enough to be willing to sit for 60 seconds.  If I have her sit on the potty in the living room or in our bedroom (take away the distraction of the bathroom), she’ll often lie down on the floor and scream like I’m torturing her.  So I just tell her “someday you’ll be ready to put everything in the potty instead of in your pullup”.  On the outside, emote patience.  On the inside, tear my hair out.  She might be trained within the next six months if these meds work.  If she wants to be.  If the stars line up.  If there’s a full moon.  Pray for us.

Porta-potty with rattlesnake warning sign at L...

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And then there’s Fred, dear Fred.  On the advice of the board of developmental disabilities, I sit him on the potty once an hour every hour for a few minutes and give him an M&M.  This is to get him to associate the potty with treats and happy times—– months ago, he used to bite himself and scream bloody murder every time I asked him to sit on the potty.  So now he’s happy to sit and he’ll even sit for five or ten minutes.  But heaven forbid he PUT anything in there.  He holds it in on purpose.  The books about training kids with developmental disabilities recommend timing the potty trips around the drink schedule—-  I DO put him on the potty at the time I know he needs to make #1— I can predict very nicely when he’ll need to make.  Evidence of that is after I finally allow him to get OFF the potty, it’s less than five minutes later and he has a wet pull up (or underwear, or floor—- underpants doesn’t help the process, it just creates a mess— so we’re still in pull ups).  He won’t stand at the potty or toilet at all, so we’re teaching him to sit.  But apparently I’m teaching him to SIT but not to MAKE.  I cannot tell you how incredibly frustrating it is to sit him down once an hour every hour and give him an M&M and say multiple times per day “soon you’ll be putting everything IN the potty instead of in your pullup!”.    We are having the TINIEST bit of progress with #2 in that I ALWAYS know when he’s about to do it— he has a special dance he does and he says “ouch ouch ouch my poopy hurts” for ten minutes up to 4 hours before he finally does it— in the pull up.  So during his dancing, I encourage him to sit on the potty— one time he said “can I go?  can I poop?” and I said “absolutely— right there in the potty, go ahead” and again he started screaming and biting himself.  Put the pullup back on, it was dirty less than 2 minutes later.  So everytime  he does his dance I tell him he’ll be so proud of himself if he does it in the potty instead of in his pullup……  is the poopy dance progress?  It WOULD be for a two year old, for certain.  But I’ve given up hope of potty training him by I don’t know, six or seven years old… numerous times over the past two years.  I’ve been reading books of kids with such classic autism still working on training at seven, nine, ten years old and I just sigh in frustration.  He’ll do it when he’s ready, yeah yeah yeah.  But if I saw an inkling of progress like I see with Wilma’s 2-3 times a week of success, I’d be so much happier.

Potty training, for me, is that hard, dark line in between “my kids have special needs but perhaps someday can be mainstreamed with an aide or even outgrow some of their most difficult behaviors” and “will public school special ed even be enough or are they both going to be going to special schools for kids with autism a few years from now?”  I have a rough time sitting on that line because often times I don’t know in which direction to focus.  Are their special needs extremely profound, or should I adopt the incredible optimism of my mother in law, who like every good grandmother just worships the ground they walk on and they could do no wrong, so WHAT if they’re not toilet trained when they’re teenagers?

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