When Rain Hurts by Mary Evelyn Greene

February 22, 2010

After wetting his pants at the creek, in front of Grandma (Aug. 2008)

February 22, 2010.  The school nurse and Peter’s special education teacher greet me as I pick Sophie and Peter up from school.  Having navigated the special education system for four battled-scarred years, I know the dual nature of their presence is not a good omen.  Today’s topic revolves around the apparent district-wide angst caused by the fact that Peter wets his pants at school.  Never mind that Peter has been wetting his pants at school, as well as at home, in the car, while sleeping, at the movies, or while eating ice cream, with unpredictable regularity for close to four years.   In the school’s minds, the issue at last has reached a fulminating level of crisis that must be addressed.  For the last few years, Pat and I have taken a hands-off approach to this problem, deciding mostly to ignore it.  None of the experts seem to be able to tell us why he comes in and out of incontinence, though over-stimulation and stress do seem to play a role, or what we should do about.  It doesn’t help that Peter repeatedly reveals that he likes the feel of hot urine washing across his skin.  Is the problem developmental, medication-related, sensory, mitochondrial, psychological, structural, emotional, social, or my bet, a medley of them all?  Since it’s anyone’s guess, Pat and I eventually settled on a low-key approach.  However, Peter doesn’t usually alert anyone to the fact that he’s wet his pants, preferring instead to continue with his day as though nothing occurred.  Complicating the problem is the fact that he often doesn’t empty a full bladder, he just piddles here and there, which makes it hard to detect – by us as well as his teachers, because he’s not so soaked that he’s dripping.  What happens is we find wet spots all over our home and cars, and our lives constantly are permeated with the smell of stale urine.  And so we devised a containment plan about eighteen months ago, and this is what it is: when he’s in a wetting cycle, like the one he’s been in for the last 4 months, he wears a Pull-up during the day; when and if he can stay dry for three days, he goes back to underwear.  For the record, he’s not had a three-day streak of daytime dryness since before Halloween and though we presently don’t address this issue at all, he hasn’t been dry at night, even once, since he was six years old.  For whatever reason, however, Peter more or less has begun alerting his teacher when he pees at school.  Personally, I think he liked the attention received at the urologist and that triggered the change in his reporting behavior.  Before then, he would pee in his Pull-up but not say anything.  Because he usually wears jeans and most of his shirts reach below mid-hip, his accidents went largely unnoticed at school.  Pat and I constantly tried talking to his teachers and the rest of the IEP team about this problem (just as we had last year and the year before that and the year before that), but no one seemed too concerned or interested.  Almost like they didn’t believe us.  But things have changed now that Peter has decided to tell his teachers about his daily wetness.  After school today, the nurse asks that I obtain a letter from the urologist stating that Peter is required to wear Pull-ups to third grade.  She could suffer official reprimand, she suggests, if our Pull-ups-until-three-dry-days parenting approach is not officially endorsed by the medical community and filed in her records.  The very idea is ridiculous!   I also have the nauseating feeling the nurse is being used as a puppet, that this newest directive comes from the school psychologist, who is obsessed with Peter and determined to prove me wrong at every possible turn.  This school won’t, the previous school wouldn’t . . . perhaps no school will ever accept the fluidity and complexity of Peter’s medical, social, emotional, psychological and psychiatric status.  The fact that they have him on a toileting schedule exonerates them, in their minds, from any contributory liability for the problem.  And that, of course, leaves Pat and me as the sole culprits.  The obvious implication is that but for the Pull-ups, Peter would be dry.  Therefore, the school’s logic goes, it’s appropriate for Peter’s “team” to impose their will upon what is and should remain a parenting issue.  It’s just one of countless implications we’ve faced over and over when it comes to Peter’s more perplexing behaviors.  With the school, it seems, Peter’s successes are theirs, but his failures?  They belong to us.

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  1. Your story of your struggles reminds me so much of the story of my friend Donna Shilts. She wrote the book “Love is a Start” about 15 years ago, before the era of blogs. She documented raising two boys she had adopted as toddlers who had severe emotional issues and FAS. If it might comfort you to find a kindred soul, I encourage you to read her book.

    Comment by Debbie — February 25, 2010 @ 10:53 pm | Reply

    • I will – thanks for reading and thanks also for the suggestion. I wasn’t aware of this author/book. I’m almost afraid to ask, but how are the boys doing now?

      Comment by whenrainhurts — February 25, 2010 @ 10:55 pm | Reply

      • I’ve lost touch with her over the last few years, when they moved from the city to a more rural area. Her oldest was working on his Life rank in Scouts and doing very well, considering his earlier childhood. By now they are young adults. She became a physical therapist and works with children with sensorimotor issues.

        Comment by Debbie — February 28, 2010 @ 1:33 am

    • Debbie, I just found your friend’s book on Amazon – its out of print but there are used copies – and ordered it. Thanks again for sharing this information with me. Mary

      Comment by whenrainhurts — March 7, 2010 @ 9:09 pm | Reply

  2. What an experience! My heart goes out to you. It’s important, it’s really well written, but obviously that’s the least of your concerns.

    Jesse Skipper

    Comment by Jesse Skipper — February 26, 2010 @ 5:19 pm | Reply

  3. Our FAS son wore pull-ups daily until 4th grade. I don’t think we ever had 3 dry days in a row during that time! His school insisted they’d never worked with another child his age who was still incontinent. But I’ve since learned it is a common problem among fetal-alcohol exposed children. We ruled out physical abnormalities with a urologist, tried sensory integration therapy with an OT, tried a variety of reward systems, tried a special wrist watch that could be set to vibrate at specific times during the day to remind him to use the bathroom (he ignored the watch when it vibrated, couldn’t tolerate the feel of it on his wrist and broke it within a week or two). Like you, we eventually treated it as a non-issue — just matter-of-factly bought pull-ups for him to wear. The situation resolved itself approximately six months ago and we still don’t know what changed. Over several weeks he gradually began to feel and respond to the urge to urinate. Now our biggest problem is getting him to wear underwear. He doesn’t like the feel. He often hides the clean underwear we set out for him and sneaks out of the house “commando.” Thankfully, the school hasn’t figured out that he is not wearing anything under his pants!

    Comment by Heidi — March 3, 2010 @ 11:29 am | Reply

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