When Rain Hurts by Mary Evelyn Greene

December 7, 2010

December 7, 2010

Filed under: Uncategorized — whenrainhurts @ 9:53 am

Imagination Station Holiday Art Show (Red Hook, NY, Dec. 3, 2010)

December 7, 2010.  Funny how on the heels of my semi-nervous breakdown my attention has returned, without ceremony, to addressing some of the more mundane issues that can monopolize our parenting experience.  Throughout our lives together, Peter periodically has removed his Pullup and pajamas in the night and crawled back into bed.  In the morning, he redresses, including the wet Pullup, makes his smelly, soiled bed, and comes downstairs for breakfast.  The crime scene usually is discovered later in the day, through some combination of sight, smell, and touch.  Although there must be others, our son is the only child I know who has managed successfully to weaponize urine.  He can go a year without resorting to this, but then the conduct reappears, without warning, and can last months, which is where we are presently.  We have no idea why he does this, and no response on our part ever has had a smidgeon of deterrent effect.  Rewards, charts, punishments, bribes, indifference, outrage, encouragement, discussion, shame, praise, bedwetting alarms, and medical intervention – we have used all these approaches and more, and none have modified, corrected or even impacted the behavior.  Our fifteen-week old Golden Retriever puppy will not soil her own bed, but our son will do it on purpose, and he doesn’t limit himself to just his bed, either.  He has performed this particular trick in Georgia, Florida and North Carolina, three of my favorite states, at various family members’ homes, and usually in one of his cousin’s beds, though floors aren’t off limits either.  Lately, which is typical, he’s done his best to lie about his rather obvious role in my tenfold increase in weekly laundry as well as the increasingly toxic state of his bedroom.  But dry pajamas, a moderately wet diaper, and a completely soaked, ammonia-wafting bed (including quilt, blanket, top sheet, fitted sheet, and waterproof mattress pad) don’t leave much latitude for possible alternative explanations.  A few days ago, when I asked him in a quiet moment why he was doing this, he said “I don’t like diapers,” and then, as an almost after thought, he giggled, “it makes fun for me.”  Given that I have at least a rudimentary understanding of Peter’s particular brand of thinking, I can almost understand his initial response.  He is a child driven by impulse, and if he truly doesn’t like wearing diapers, either because they don’t feel good or because he’s embarrassed, then I can accept that he would take it off to satisfy that desire without a second’s thought of the immediate consequences.  It’s the blurted out second response that takes my breath away.  He thinks its funny.  He enjoys, I suppose, watching all the laundry, all the frustration, all the attention his behavior causes.  So this is what we did: a few nights ago we duct taped his diaper around the waist (not to his skin, only to the Pullup) so he couldn’t take it off.  Then we put the vinyl toddler training pants over the diaper to catch any potentially bona fide leaks.  We’ve done this in the past, with mixed results, but this time we added a twist.  I had him tuck in his pajama top and then I duct taped that too, so he couldn’t get his clothes off if he became inclined to wrench free of the diaper.  I made sure the end pieces of the duct tape were somewhere on his backside, so that he couldn’t just peel them off.  I fully realize these are acts of desperation but that’s where we are.  Believe me.  When we were finished, we gave no fanfare to this operation saying goodnight and tucking him into bed as usual.  He told me, in his best facetious voice, that he loved the new system and thought it was a great idea.  I ignored the sarcasm and went about the rest of my evening, confident that both he and the bed would be dry in the morning.  But this only worked one night.  The second night, he figured out that he could reach up through his pant leg and pull the side of the diaper/training pant out so that when he peed it would run down his leg and onto the bed.  What in the world is going on with this boy?  Why is this Peter’s current goal in life?  If we hadn’t been dealing with this situation literally for months, I would ignore the behavior and let it run its course but I’ve tried that, several times in fact, and it hasn’t worked.  Yesterday, I ran out to Target with my mother-in-law and we bought two footy pajamas, the onesies they now make for big kids that zip up the front.  The idea was that we could cut off the feet and put them on backwards so he couldn’t take them off, eliminating the need for the duct tape, which of course was only a temporary fix, and one that didn’t work anyway.  We resorted to this tactic years ago and it worked.  So that’s what we did last night.  Pat and I suited him up in a clean Pullup, vinyl training pants, and footless footie pajamas zipped up the back.  I then fastened the PJs at the top, around the back of his neck, with a sturdy safety pin for good measure.  I went to bed confident, at last, that both he and the bed would remain urine-free.  But he outwitted us again.  I can hardly believe it!  Peter can’t think to ask for something to drink when his cup is empty but he can transform himself into Houdini in the quiet hours of the night in order to “have fun” with waste products.  I suppose he managed to pull up one of the pajama legs again sufficiently to reach up and open the floodgates.  I could try putting duct tape around the ankles tonight but he could easily just pull it off.  The only thing I can think to do at this point is put some heavy-duty stitches in the bottom of the legs so that they’re too narrow to yank up.  If that doesn’t work, I’m out of options and he wins.  I only wish I knew – God how I wish I knew, just what it was he thinks he’s winning.


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24 Comments »

  1. From another adoptive Mom who’s been there (and is still there, 13 years later!), there’s only so much you can do with the urine/feces situation. I realize that may sound harsh or glib to some, but believe me when I say I’ve also tried it all when Chef was younger – and some plans “worked” for a time then stopped working, some plans just made Chef’s preoccupation with urine/feces go more “underground” and hidden, and some plans didn’t show any signs of benefit, etc., etc. The biggest growth curve in this area was when I started consistently having Chef clean up his own urine/feces when he’d placed it inappropriately (down the vents, in his closet, on shelves, behind his bed, coming into a room where I was on the phone and playing with feces in front of me til I realized what it was, etc., etc.), regardless of his reason for doing so. When Chef was younger, specialists considered possible anxiety-triggers, physical possibilities, communication challenges, etc. At one point, Chef said he was too scared to get up and use the bathroom at night. That didn’t make sense, since Chef had no problem wandering through the entire house at night (including a dark basement) to sneak various items back to his room. When Chef eventually stated, “I just don’t feel like walking all the way to the washroom” all the pondering stopped. It all boiled down to the attachment/mental health issues. Now 15 years old, Chef can now go for long periods of time (weeks) without urine/feces issues, and when they resurface, it’s primarily just urine. My latest blog post actually has reference to the latest urine “issue” happening in Chef’s room. It is not for the weak at heart, but you certainly don’t fit into the “weak” category.

    Christine
    P.S. Oh! And vinegar helps a lot with odour 😉

    Comment by Christine — December 7, 2010 @ 10:45 am | Reply

    • Wow Christine – this makes our problem seem trivial in comparison. I will definitely check out your blog. Kudos to you for managing to live with this somehow, for 13 years. We also make Peter clean up his own mess, to the extent he can, though his age and skills are a limiting factor. Also like you, the various health and educational professionals involved in this problem have finally agreed with us that Peter just doesn’t want to be dry, and that he soils things purposely at times (he will tell anyone this who asks). Go figure. Thank you so much for writing and I wish you all the best. Mary

      Comment by whenrainhurts — December 7, 2010 @ 11:22 am | Reply

  2. Have you tried DDAVP? It’s a med that really helped our son stay dry when he was about that age.

    Comment by Cathy — December 7, 2010 @ 11:06 am | Reply

    • Yes, but thanks so much for the suggestion. I’m fairly sure we’ve tried everything. Peter just isn’t invested in his own continence (that’s the first thing – he likes the feel, he doesn’t want to be bothered, etc.) and he also does use soiling in purposeful ways. We spent years trying to convince various health and educational professionals of these two facts and now they finally agree with us. At this point, all I can do is minimize the impact and give him as little attention about it as possible.

      I’m glad it helped for your son, though!

      Comment by whenrainhurts — December 7, 2010 @ 11:18 am | Reply

  3. Is Peter physically unable to stay dry through the night and does he have sensory issues regarding the diaper? I’m sure you and your GP have looked at those issues already, and even in working with both children and adults with disabilities, I don’t know of any diaper alternatives for someone who can’t tolerate wearing them. the concern though, from what I’m reading in your post, is the giggling and accompanying comment. I wonder how Peter would respond to being supported in doing the work involved in cleaning up his room in the mornings after his overnight adventures. Some might view that as punitive (including Chef, who sat and cried “I can’t believe you’re making your baby boy do this!” the first time I had him clean up his urine/feces), but I believe it’s supporting him in understanding the natural consequence of what happened during the night, and providing him with dignity in learning how to live with some of his own life challenges. Not that I want to give advice, I just know that made a very big difference for Chef.

    Comment by Christine — December 7, 2010 @ 11:17 am | Reply

    • He does have lots of sensory issues but he has no problem with the diaper during the day (he is completely incontinent, despite the fact that he was 100% continent for the first year he was home with us (age 3-4). I do wonder what they did to him in the orphanage to keep him continent, though. I don’t think it was pleasant. I sometimes wonder whether he is doing this to test whether we will in fact beat the living *&^* out of him, which is what I’m guessing happened in Russia, though we’ll never know for sure. And believe me, we have tried everything – he will help clean up without complaint, other times he’ll scream bloody murder, and still other times he’ll be a complete smart alec about it. We have tried to be supportive, and we have tried everything else too. One of the biggest obstacles in his life (and ours) is that he is 100% unable to connect action to consequences. I don’t know whether all kids with FAS have his degree of cause/effect impairment, but Peter certainly does, and it makes learning, and behavior modification, terribly tricky, and often just unproductive.

      Comment by whenrainhurts — December 7, 2010 @ 11:28 am | Reply

  4. I totally hear you.

    Behaviour mod meant nothing to Chef either when he was younger, though it is now playing a role in conjunction with the rest of how I’ve set up his home program. He still doesn’t care about a reward though, or at least not to the degree of doing what he needs to do to receive the reward whether it’s something tangible or an outing or just the natural reward of free time after a chore is finished. When he was younger, he would just use the not receiving of a reward for tantrum fodder. He now knows that doesn’t work.

    Rote learning (consistent natural consequences all the time in response to each and every situation plus repetitive practise of appropriately responding to situations) is the only thing that has been consistently effective and most beneficial in our home, but it takes weeks, months, years. It’s definitely an around-the-clock job, but it’s the only thing that has brought any sense of “normality” to our day-to-day and the only thing that has helped Chef learn/change his behaviour, which is facilitating growth, dignity, and respect for both Chef and me as well as others with whom he comes in contact. There have definitely been changes/successes over the years. Some are pretty huge. I attribute them mostly to the rote training.

    Our kids need to learn to retrain their brain in order to have a better chance at successes in life.

    Hey, as an aside, did Peter’s birthmom openly state that she’d used alcohol during pregnancy? They won’t officially assess/diagnose kids up here without clear confirmation from birthmom.

    You’re doing an amazing job. Balance is huge, and it sounds like you and your partner definitely have that together.

    Comment by Christine — December 7, 2010 @ 12:37 pm | Reply

  5. Many years ago I used a “pants-alert” system with parents who were toilet-training their adolescent and younger children. I have no idea if the product is still around and if it can be easily dismantled by your talented child, but this is what it is: two grommets are inserted into the crouch of the underpants, a belt with an alarm is placed around the waist, two leads from the alarm to the grommets attach the alarm to the pants. The alarm goes off when the circuit between the grommets is completed when urinating begins. At the least, it will notify you when urinating begins, allowing you to act. It was a very successful aid for many parents.

    Comment by mary — December 7, 2010 @ 2:07 pm | Reply

  6. I agree with you every step of the way, Christine. Rote learning is the only thing that works, that improves his functioning as well as his self-esteem, and we spend a good deal of time working on these methods. But every so often, the apple cart tilts no matter what you do and when you take a step back, it seems like you’ve backtracked tremendously. I guess that’s just the crooked path all of us are on with kids like Chef and Peter. Re FAS diagnosis: Peter has been diagnosed by Ron Federici, a neuropsychologist, and separately diagnosed by his geneticist and neurologist. He has all the primary physical attributes as well as the neurobehavioral, cognitive and psychological features. In the US, the diagnosis is a tiered approach – its easiest to obtain with documentation of maternal alcohol use but it can also be given in the presence of ALL the characteristics, which unfortunately, Peter has. And to answer your question, I don’t know whether the Russians were aware of Peter’s birth mother’s alcohol status or not, but they certainly didn’t share it with us.

    BTW, sounds like you’re doing an amazing job too? Can I ask you how puberty is going? I have to tell you, I dread that.

    Comment by whenrainhurts — December 7, 2010 @ 2:07 pm | Reply

    • Actually, I’m finding puberty to be much much less chaotic than when Chef was younger. There was so very much to learn about him and the types of supports he required. Schools and specialists were scrambling as well. There were specialists referring to him as a conundrum, and other specialists and school staff telling me they had never met or worked with a child like Chef. That wasn’t easy to hear as a parent trying to figure out the best way to raise this child who carried so many challenges with him.

      By the time puberty started, I already knew Chef’s baseline behaviours. There’s nothing new (hopefully it stays that way!), just different degrees of the same ones. And some of those have greatly improved. The one that increased is the tantrumming. It increased in intensity and Chef is still in the process of learning that that doesn’t work.

      By puberty, Chef had experienced a lot of growth and development. There are some really nice pieces that have come along with that. There are a lot more restful nights for both of us, Chef has developed some good skills over the years, his communication has drastically improved, etc., etc.

      By the time puberty started, a solid team had been formed; school division, OT, mental health, psych, etc. We’re all on the same page with ultimate goals and support needs.

      So, as puberty eventually arrives for Peter, you’ll already know most, if not all, of Peter’s baseline behaviours and coping mechanisms and how they present in different situations. You’ve already been through monumental hurdles to facilitate the educational supports Peter needs. Peter will continue to develop and grow through the years, and there will be continued successes.

      So far, I’m finding Chef’s puberty to be much more “relaxing” (can we ever use that word???) than his younger years. That said, the big pieces to that are the understanding that Chef needs an adult pretty much velcroed to him 24/7 (it’s when he doesn’t have that support that things fall apart big time), that Chef’s supports all understand the importance of showing him respect and dignity through providing/facilitating the boundaries he requires to gain a healthy understanding of life, the understanding that I need a strong network to keep up my strength to be able to continue parenting him, and last but definitely not least – balance for everyone.

      And all that said, Chef hasn’t started showing an interest in dating and hasn’t shown an interest in drugs or smoking or drinking, etc.

      So there ya go – puberty rambling at its best 😉

      Comment by Christine — December 7, 2010 @ 8:07 pm | Reply

  7. Another possibility, one individual with whom I worked had a feces eating & digging problem. The digging problem turned out to be severe constipation caused by medication, and the digging enabled the feces to be passed. The smearing, eating, playing with the product followed naturally. We eliminated the opportunity by asking the physician to reduce the medication which was excessive, and keeping the bowel track clean so that digging was not fruitful. Once normal bowel movements began to occur, the rest of the behaviors resolved.

    Comment by mary — December 7, 2010 @ 2:13 pm | Reply

  8. let him sleep in his mess, urine soaked bed, make him do the laundry, wear soaked pullups, …suggestions only

    Comment by Judy — December 7, 2010 @ 7:43 pm | Reply

  9. what if you took out the mattress and sheets, and put in a vinyl mat instead (like they use in gym classes)? it would still have cushion to it, but the clean up would be simpler: a wipe down with a spray bottle.

    Comment by laura — December 7, 2010 @ 9:38 pm | Reply

  10. I have only one thing to say DUCT TAPE!!!

    Karen

    Comment by Karen — December 7, 2010 @ 9:59 pm | Reply

  11. is there a possibility that his “fun” isn’t so much about others needing to clean up the mess, but about some excitement he enjoys in the activity?

    Comment by adopted — December 7, 2010 @ 10:02 pm | Reply

    • Quite possibly. In fact, I think anything is possible . . .

      Comment by whenrainhurts — December 8, 2010 @ 8:36 am | Reply

  12. Perhaps you could add mittens or small boxing gloves to the nighttime duct tape, etc. I know it sounds a little rash, but then he won’t be able to manipulate his pants in order to urinate on the bed.

    Comment by Miri — December 8, 2010 @ 12:00 am | Reply

    • Excellent suggestion, and timely! He was wet again this morning. Unbelievable. He has to be tugging at the sides somehow.

      Comment by whenrainhurts — December 8, 2010 @ 8:36 am | Reply

  13. Time to watch this again:

    Comment by MM — December 8, 2010 @ 12:34 am | Reply

  14. While not as extreme and without the complicating factors of Peter’s life – we dealt with bedwetting also. After trying praise, consequences, rewards, etc. (as have you), we eventually went to a medical solution. I don’t know if this would work for you or not, but we went to a nasal spray that essentially “dried up” our child during the night. I believe it’s something they also use for patients during long surgeries. We also limited caffine and milk products after 5pm as that seemed to stimulate more urine during the night. I hope this will offer you some glimmer of hope.

    Comment by SheilaScribbles — December 9, 2010 @ 9:33 am | Reply

  15. I have to chuckle at some of the very well meant suggestions. No one can truly understand this need/compulsion/fascination whatever you want to call it, of our children with their urine/feces if they don’t live with it

    Noah wets the bed nightly. We don’t even try to work through it. We have so many other things to worry about first. He wears a pullup, but about a 1/3 of the time it leaks through. I don’t “think” he is doing it on purpose, but I also know that he is now waking up dry and just refusing to get up and go to the bathroom by himself, so he relieves himself in the pullup. He was six before he would stop using the pullup to poop in as well.

    He still poops in the pullup at times though. He has encopresis and its a constant balance trying to prevent constipation but not get him so loose he leaks. More often than not he leaves me gifts in his underpants. He has no problem pooping on the potty, although he tries to get someone else to wipe him, so that is why I am amazed when he lets loose in the pullup. And then we hear “poop emergency” coming from his room. And we see the trail of poop from his room to the bathroom. He then becomes hysterical if you tell him he has to help clean it up.

    I know I need to do more to teach him how to change his soiled sheets and put the power of that on him, but if I do and I am not there to supervise him he is likely to put half a gallon of detergent in the load, just to see what happens.

    I am tired of the pee and the poop. Beyond tired. I don’t know how you are getting through it because yours is so in your face.

    I did like the mitten suggestion, it just might work.

    Comment by Kristine — December 12, 2010 @ 10:11 pm | Reply

  16. Wow! What a story. Although I trust this is in the past now and maybe you don’t want this reminder, I wanted to thank you for sharing this situation to help others in many ways. You never know when someone will stumble upon this and be relieved they are not alone.

    Comment by sarahbutland — May 23, 2012 @ 6:33 pm | Reply

    • Thanks Sarah. This blog is actually being published as a book – look for it in bookstores in Sept. 2013. The journal entries on the blog (at least some of them) precede each narrative chapter. And I certainly do hope it helps – the writing has certainly helped me . . . 🙂

      Comment by whenrainhurts — May 27, 2012 @ 5:15 pm | Reply


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