we haven’t had a double meltdown that’s lasted this long in quite some time. Hubby got bitten and a shoe thrown at his head. I got hardcover books thrown at me and hit repeatedly. Chairs got thrown. Usually all of this happens within 10 minutes and after the 10 minutes things are calm again. Last night it was an hour. A VERY long hour. After the kids went to bed, I looked around at the mess all over the place, my increasingly un-do-able to-do list, and decided to turn off all lights, curl into a ball, and turn on the tv. I feel better today.
Yet again, another of my autism mom friends writes exactly what I’m thinking and what I’d love to find the time to write.
Rest in peace, Drew Howell. Owen Black. Mikaela Lynch.
The manometry was fun! As much fun as sticking wires and balloons up your child’s butt COULD be…..
For most kids, it’s painful or irritating or annoying. For Wilma? She didn’t feel a darn thing. The computer showed that her rectum and shpincter work just fine— but they filled the balloon to the extent that most kids desperately have to go to the bathroom and she didn’t feel any difference.
So we know that it’s not her hypotonia—- it could be a nerve ending issue. It’s not just the autism or just the adhd. It’s not Hirschsprung’s disease.
So now we do further testing— is it a very mild spina bifida? Is it a very mild cerebral palsy? WHY can’t a six year old, whose muscles WORK, toilet train for #2? The mystery continues.
Wilma’s manometry procedure will be Monday. Not surgery perse, but it might be kind of awful since it will be painful and they’re not putting her under. Just got a call asking us to participate in a study about how young children react to this procedure– that’s not a good sign that Monday will be a piece of cake for her. I wish I didn’t have to torture her with all this craziness.
The GI doc ordered a third cleanout and a third xray—- the third xray STILL had plenty of stool in it. But before the nurse could tell me to do another clean out (each clean out requires 40 + pullups, 4 days stuck at home going nowhere (so sick of her missing school), and an autistic child who is very mad at the whole situation) — I said—- we’re NOT DOING ANOTHER CLEANOUT! Multiple cleanouts which make her poop up to 17 times a day don’t clean her out—- they don’t make normal poop— they just make the frequency even greater.
Please let the manometry tell us SOMETHING about what she can or can’t feel!
Sunday night, Fred ran wildly into the bathroom yelling “I need to makeeeeeeeeeee”. This is nothing new. He tripped on the entrance way to the bathroom, went FLYING, and fell head first onto the toilet. He ended up with a HUGE goose egg, a bad scratch between his eyes, and a double shiner. I stayed home with a terrified Wilma, and hubby took him to the ER. No broken bones.
The boy was a trooper. his behavior at the ER was great, and by now, a few days later, the goose egg is GONE and the shape of his face is back to normal (he looked SCARY!). The black and blue marks under both eyes are pretty intense, but he’s on the path to healing. No missed school. Even after a late night at the ER, he went to school Monday and made it through the whole day! Go Fred!
Quick IEP amendment this morning!
Yes, they ARE starting a class for a handful of kids with behavior issues at Wilma’s current school. I met the teacher today and she’s young and spunky and has already met and fallen in love with Wilma. Most of the kids are in the room for the full day.
But Wilma doesn’t need to be placed there all day every day. Her newest med combo is working well enough, for now, that she can stay in gen ed and treat the new class as a resource room.
We swtiched her from Vyvanse to Adderall. Vyvanse was GREAT in the morning but she metabolized it super quickly and by 11:30 she was a mess again. On adderall, she’s a lot less aggressive and more cooperative ALL DAY! So she’s now doing abilify and adderall.
So, she’ll be in her old resource room for morning and afternoon routines, her new resource room for math (yay for small group math—- she’s been mostly doing math individually) and lunch (she needs a small group for lunch!)…. but she’ll be with the large regular class for everything else. Including (at this point) specials: art, music, gym, library— she’ll have an aide with her there, but if this new routine is going to fall apart, specials is where it will happen, so I’m hoping plan B will be to have Wilma visit specials with the new class.
With fingers crossed, we’ll see how the new setup works out for her! I’m super impressed that the school is able to personalize this for her so well— instead of JUST saying it’s gen ed with an aide OR it’s a special ed class, they’re creating and re-creating (this is not our first change this year!) a schedule based on her needs.
Today’s meeting was quick and optimistic, as opposed to the FBA meetings we’ve had recently which were a lot more involved and pessimistic. I’m putting high hopes in adderall that Wilma can stay even keeled for the rest of the school year and we don’t need to make more changes!
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/
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.
Yesterday was the FBA follow up meeting at Wilma’s school. Long story short, I have a child who really cannot handle large group lessons and does well one on one with an adult or in very structured quick change settings (6 minute stations). She just can’t be “mainstreamed” even with an aide. But then again she doesn’t fit into the mold of a kid who does well in a small group special ed class either if the other kids aren’t verbal or social. Behaviors we discussed included flipping lights on and off during lessons, slamming doors, yelling, flopping on the floor and tantrumming…….so yesterday I was now going to discuss with the district the possibility of putting a one on one aide on her NOT to be assigned to her to the mainstream classroom, but to be assigned to HER so if some days she can be in the mainstream classroom for 50% of the day, great, and if other days it’s 80%, great, but she always has the exact same adult super glued to her. As it stands, they have to change her schedule around in terms of adult coverage on her constantly because one aide got put in a diff school and one aide is in charge of K, 1, and 2 kids and the OT has been spending extra time with her, etc.
So. Today as I was composing the email to the district special ed director, school called.
They asked me to pick her up! “She’s having a problem”. mmmmm hmmmmmmm. The irony? I was in the middle of beginning to compose an email to the district’s head of special ed requesting a meeting concerning the results of the FBA—- I wanted a one on one aide on her at all times. Well jeepers, this helps my case, don’t it? Along with being asked to attend field trips with her. So without SO much fanfare, I wheeled in the mega stroller (we have a special needs Maclaren Major for Wilma’s meltdowns), used my superhuman strength to pop her in, had someone else carrying her coat and backpack while I had one hand rolling the stroller and the other hand holding the straps together so she couldn’t adjust them and wiggle out (she tried twice). It’s just FUN to be the mom rolling the special needs kindergartener down the hallway screaming as all the fourth graders pass by raising their eyebrows, but I digress.
I got her in the car– my biceps are getting bigger. I got her in the house— go me, I’m supermommy! I threw away her second dirty pair of underpants of the day (when she’s mid-meltdown they let her sit in her own poop— it’s hard to blame them), wiped her, threw a pull up and jammies on her, engaged the child lock on her door and hoped she’d scream herself into a nap— she was exhausted from the mega tantrum. No such luck. So she was upstairs in her room screaming…..
When I got the call.
Her Intervention Specialist. I had JUST seen her during Wilma’s meltdown, AND I had seen her yesterday at the FBA meeting. After I took her home, AFTER the FBA meeting and AFTER the mega meltdown which was going to help my case for a one on one aide, she had a discussion with the director of special ed.
Sit down y’all. REGARDLESS of what’s going on with my daughter, they were planning anyway over the last couple of weeks to begin a small special ed group specifically for behaviorally challenging K-1′s AT her current school. She’s eligible. They plan, next month, in March to have four kids from other schools in the district come to this class. Wilma would be the only kiddo from her current school in this class— the only kid for this class who wouldn’t need to switch schools. The other kids are all verbal and social, so my worries about having her in a typical MH unit are moot. She’ll have peers who are like her. It’s a BEHAVIOR specific class for kids who are too disruptive to be mainstreamed. One teacher and one aide on five children. HOOOOOOORAY! Academically, they’ll work with each kid where they are. Plenty of specialized attention. Specials (art, music, gym, etc) that have been so incredibly difficult for Wilma because of the large group activities—— she’ll do with this small group. Lunch—- small group. YES!
And that’s not all folks!
The FBA results showed that Wilma is consistently FINE until about 11:00 am. She falls apart from 11:00 to 3:15. From 8:45 until 11:00 am her meds are working, she’s fresh and calm, and cooperative. Because Wilma already HAS a mainstream class at this school, she’ll be the kid in her new class who WILL be mainstreamed—- for PART of the day. She’ll stay in her current mainstream classroom until 11:00 and then join the new group for the rest of the day. Both teachers will coordinate what she learns with whom and how. Her new teacher is well versed in working with behaviorally challenging kiddos. Additionally, I’m in discussions with the new developmental pediatrician about giving her a second dose of vyvanse around 11:00 am. It’s working WELL now– until about 11:00. The first few weeks of Vyvanse we thought it was working well overall, but not anymore— we now see the pattern. MORNINGS are good.
Well, she’s not going to need a one on one aide!
We’ll muddle through the next few weeks until this class begins and then things should get a lot better with much more consistent coverage for Wilma in the afternoons and a group of kids like her who all need the same type of attention.
Don’t tell Wilma, those of you who know us in real life—- I’ll only tell her when it’s official.
From year to year, month to month and frankly, moment to moment, it’s hard to know whether Wilma is a mainstreamable kid, or a special needs classroom kid. And that’s okay as long as the school keeps bending over backwards to meet her where she is.