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

Archive for the ‘Diapers’ Category

Poop. Part 3.

my faith in Wilma’s new GI doc is restored. After a horrific weekend, the bad news is that she has to have another xray and an enema before she gets a monometry. The xray is to see where everything is— top?  Bottom?  Are these 8 zillion poops coming AROUND a blockage?  The exam Friday didn’t indicate a blockage but before a monometry we have to make sure.  the monometry is to measure the pressure in the anus.  Hopefully that will give us some answers.  My guess is that there’s a nerve ending problem or a pressure problem, but not Hirschsprungs.

But the GREAT news is that she’s not (yet) getting a biopsy and she’s now OFF two of the three new meds— one of the meds caused SUCH horrificness this weekend.

She’ll probably still get sent home from school tomorrow (though I plan to try to send her, with a nice email to her teachers about what’s going on)—I mean how many times do kindergarten teachers want to change a 6 year old?  They usually do it once or twice a day— but four to five to ten times?  nah, they’ll call me.   But we’re on the road to normalcy and some sort of diagnosis. Hooooooray!

Meanwhile it’s such a pain to write down every time she poops and try to find the piece of paper.  I’m now using a nifty little program where I can enter in poops for both kids.  And meds.  And therapy appointments.  And doctor calls.  And med changes.  All the stuff that’s on a million pieces of paper all over my office.  This free program is online– check it out!  http://birdhousehq.com/

POOP Part two.

Once upon a time, Wilma had never pooped in a toilet.  She had one poop a day in her pullup— usually at nighttime after I put her to bed in her nighttime pullup.  Life was calm.  As calm as life could be with two autistic five year olds.

Wilma turned six and her school nurse suggested I take her to a GI doc to rule out physical problems.  Was her encopresis PHYSICAL?  EMOTIONAL?  IMMATURITY?  Who knew?  So I figured the GI doc would find nothing wrong and life would go back to the usual.  She just wasn’t ready to toilet train.  okidokee.

GI doc did an xray.  Despite Wilma pooping at least once a day (nice normal sized ones), she was backed up to her eyeballs.  I agreed to a cleanout.  She pooped like CRAZYYYYYYYYYYYY for a weekend but then on the maintenance meds she was at three to four poops a day.  ok, that was do-able.  Until it was five to six poops a day.  Then up to ten poops a day.  On the maintenance dosages.

So we went back to the GI doc Friday.  He wanted us to do cleanouts EVERY weekend for the next three months.  He wants to re-train the neurofibers in her anus or some ridiculous sounding bunk like that.  He did not suggest a rectal biopsy to rule out Hirschsprungs or a scope.  He simply wants to INCREASE the meds.  I was in shock, but agreed.  Oh Lordy Lordy.  Friday night I gave her his recommended dosages.  Saturday she pooped 14 times.  That’s 14 pullups, people, at 70 cents per pullup.  Today, Sunday, she pooped another 14 times.  Might have been 15.  I lost count.  Her body cannot be enjoying this.  I am going CRAZY.  He’s got to give me money for all these pullups, some respite care, and dammit, I want HIM to change her for a day and see if he still thinks this is the route to take!

He increased the maintenance meds too.  hah.  After 30 poops in 48 hours, my husband and I agreed– NO MEDS TONIGHT.  As it is, even with no meds tonight we have no chance in heck of her being able to leave the house tomorrow– trust us– there will be another 8-12 tomorrow!  It’s president’s day so no school, but we’ll just sit at home playing games, coloring, reading, and changing pullups.

I’ll call the doc— NO WAY am I putting her through this anymore.  He needs to jump straight to a rectal biopsy or a scope, OR I need to stop going down this road and forget about toilet training her for another year or two.

It’s heartbreaking to have a fully verbal, cognitively aware, “HIGH FUNCTIONING” six year old NEVER defecate in a toilet, but I think it’s even more heartbreaking to allow poop to rule our lives in the name of “maybe this will teach her anal neurofibers”.

Hirschsprungs?  EE?  If this is a physical problem, what’s your diagnosis, fellow moms?  At this point it’s pretty obviously a physical problem.  Despite her severe adhd and her autism, she can speak paragraphs about where poop is supposed to go and she IS able to put her urine there.  She cheers her brother on through his poops and flushes for him.  She watches me poop.  She totally gets it.  I don’t think she’s cognitively perfect, but THIS—- SHE GETS IT.  But her body doesn’t.  I can’t believe it’s just her hypotonia either.  I don’t know anyone with hypotonia like THIS.

SO SICK of wiping her butt.

And for all of you wondering—- if she’s so high functioning, why not just put her in a Jewish day school with a one on one aide—— here’s your answer.  How many day schools are obligated to change a six year old?  Public school HAS to take her.

Potty training progress?!?!?!

Unbelievable— I have both twins in underpants 100% of the daytime.  Even out and about.  Even at school.  I’m finally at the “less trash, more laundry” part of potty training!

Wilma’s progress is completely stalled— still no #2 in the potty, and #1 in the potty ONLY when nagged. If I don’t say a word, she happily pees the couch, floor, wherever. So I nag a lot– no self initiation. Throwing away lots of underpants due to poop. REFUSES to use the potty at preschool but is fine with all regular size toilets.

On the other hand— Fred has gone from being the one who wasn’t ready to put ANYTHING in the potty to being the one who not only puts pees n the potty but poops too!   Yeah, that’s right— last Friday out of nowhere he finally started PEEING everytime I sat him on the potty— he was finally sick to death of me sitting him on the potty multiple times a day and calmly cleaning up his pee and poop and telling him I’ll wait patiently for when he and his body are ready to get his business in the potty.   Light bulb child—- 4 days into underpants (THIS time– not like I haven’t put him in underpants multiple times before and given up a week later when it wasn’t working!)— and the light bulb finally turned on.

 

Captain Underpants and the Attack of the Talki...

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AND he’s starting to self initiate! I nag plenty, but when I don’t nag, and he needs to go, he walks over to the potty, pulls down his underpants, and does his business! What every mom wants their 2-3 year old to start learning to do. ok, the twins are 5, but STILL! But he still refuses to use any toilets— only the tiny froggy potty at home or the preschool size toilet at school. I sat him on a toilet at a friends’ house today and he completely refused.

So that’s the news from the house of “yes, we threw away some underpants today, but no more daytime pullups!”

Every poop he puts in the potty, I get some scars– he kicks, he screams, he cries, but he puts his poop in the potty.  Progress.

 

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Describe a Typical Day In The Life of This Child, Morning Through Night

 

Entrance to the Occupational therapy Department

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One constant in my life is PAPERWORK.  The SRS, the Vineland, the CFQL, the stuff for the neurologist, the stuff for the genetics guy, the stuff for the psych consult, the stuff for the county board of developmental disabilities, the stuff for school, the stuff for daycamp #1, the stuff for daycamp #2 (they’re in two camps this summer— one just ended and one just began).  I’m always working on some stack of paperwork or another.  Whenever I think I’m done for a few weeks, something else pops up.  The stack I’m working on now is specifically for Fred and I’m not yet ready to say what it’s for.  But I did want to share how I answered one of the questions:  Describe a typical day in the life of this child, morning through night.  I learned about myself and my child while coming up with the answer to this question.  My husband helped me.  THIS is how we spend our Saturday night at 11:00 pm.

As you’re reading this, remember that he’s about to be five years old.

Fred sleeps with a child lock on his door so that before he wakes up he cannot access his sister.  He sleeps in a Goodnites brand overnight diaper with stretch pants and a onesie on top to prevent diaper digging.  He wakes up in a good mood, chewing on his favorite Curious George stuffed animal.

I change and dress him and his twin sister and give them breakfast.  On days he has daycamp or school he rides the bus (in a harness) to school or I drive him and his sister to daycamp (in carseats).  On non school/ camp days, he likes to draw on his magnadoodle, play with blocks, spell with magnet letters, do math workbooks, read books, jump on his trampoline, and be tickled.  He is not as prone to enjoy playdates with children his age or typical games for four year olds as he has trouble taking turns.  He doesn’t enjoy taking walks if the destination is unknown and therefore requires that an adult push a stroller so that when he melts down, he can sit in the stroller.  He requires constant redirection so as not to stim on particular toys or activities.  He needs frequent reminders before activity transitions will take place.

We tend to avoid group activities:  picnics, barbeques, parties.  His behavior in public is completely unpredictable and though at times he is successful, he most often needs lots of support as he tantrums, screams and bites.  He does well in a SMALL group with mostly adults.  In a larger community event or a room with more than two or three children, he is extremely overwhelmed.  We try libraries and playgrounds from time to time but those visits need to be short and well supervised.  As his twin sister also has special needs I can no longer take them both to the library or playground by myself due to his unpredictable behavior.  If she refuses to leave the library, he bites me and then runs off to bite another child while I’m picking her up.

Going to the dentist is a horror show.  Thus far, we’ve been using a dentist who does not put children to sleep.  From now on, we’ll be going elsewhere.  I’m physically incapable of holding him down without getting extremely bruised in the process.  Going to the doctor has been getting steadily better and his behavior is unpredictable—at times he’ll tantrum as we’re walking in and at other times he’ll play happily until he sees that he’s about to be examined.

As he is not yet toilet trained we are sitting him on the potty every hour on the hour.  He does not yet use the potty but he is now comfortable sitting there as long as we don’t ask him to perform.

After plenty of occupational therapy he is now extremely successful with bathtime and enjoys it.  Nail cutting, however, is still a massive challenge and a two adult effort.

At this time he has no problems with eating what is served to him although if he’d rather play than eat, he tantrums and requires a four minute time out in his room before he will buckle down to eat.

He is a good sleeper and sleeps through the night but usually takes a while to settle and runs around his room.  This is typically when he chooses to defecate so I go in and ask him if he needs a change and I change him.  THEN he goes to sleep.

Mothering this child is my greatest joy and my greatest challenge in life.  It’s very difficult to hire a babysitter or  leave him in a room unattended for a few minutes.  However, I need to make an income so I work at home.

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How Fred is Potty Training Me

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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