encopresis

[vhoffman]

This thread is not related to Disney travel, however, perhaps there's other parents out there with a child with a similar problem who can offer some advice.

My 7 year old son suffers from encopresis. He's had this condition since he was about 4, treated successfully, then recurrs. His problem now is school. Basically, encopresis is chronic constipation. Eventually, if the urge to defecate is ignored enough the body will "give up" sending signals. Hence, the constipation worsens. Oftentimes, soiling accidents occur because the rectum loses its elasticity, the "urge" to go is no longer signaling correctly,hence, accidents. My ds says "the poo just comes out'". Also, wetting accidents occur with this condition because the full rectum presses on the bladder, causing a feeling of fullness and decreasing bladder capacity. Well, ds's teacher is aware of these problems (at least I've told her, whether she listens I don't know). She complains that he asks to go to the bathroom "too much" and takes too long in there. Last week, she decided he was making a game out of going to the bathroom. He asked repeatedly to go, but she wouldn't let him (she admits this). He then wet himself. He raised his hand and said he'd wet himself and needed to go to the nurses office. It was the teacher's opinion that he wet himself on purpose to get attention and control the class. She allows other children to use the bathroom on request, but has stopped letting my ds because he "takes too long". I've explained to her his medical conditions and how it could require more time for him than other kids. The class as a whole does have 5 bathroom breaks a day and she feels this is sufficient time for him to go. However, she allows other children times other than the scheduled breaks. I've explained to her his bladder is compressed so he doesn't have much capacity. Also, he's reluctant to use the bathroom during the regular scheduled breaks because the other boys know of his problems and make it difficult for him--he prefers to use the stall and they occupy it until the last possible moment then he has not enough time to have a difficult bowel movement. Since his "wetting" accident last week he all but refuses to drink during the day. He hardly drinks anything for breakfast, and the water bottles I send in his lunch come home unopened. This will only make the constipation worse. Also, he asked me to wear pull ups to school for fear of another wetting accident. I hardly think he would dehydrate himself and wear pullups if he wanted to wet himself in class for attention. Seems he's trying everything possible not to.

I'm not having much luck with the school. We have a meeting next week to discuss this issue. Basically, they need to understand that he has a medical condition which makes elimination difficult. What I need to know is, does this qualify as a disability? Could he get an IEP spelling out how the school will handle his problem, rather than just say its all his fault?

I realize I'm rambling here, but if there's a parent out there with a child with a similar problem I'd appreciate knowing how you dealt with it through the school. I'm just sick with anxiety thinking what my poor little boy must be going through!

 

[SueM in MN]

I don't know what state you are in, but I have 3 suggestions.
The first is the PACER Center website. The PACER Center is based in Minnesota, but it is a national resource for Parent Advocacy for education rights. They have some links that should be helpful. Look around at their site and you should find a link to an advocacy group in your state/region.

The second is to look on the internet for an encopresis support group/website. They should have some easy to understand written material you can print out about the condition so you can provide the school with information from an outside source.

Third is that your school should have a school nurse assigned to it and she needs to be involved. She might not be directly at that school, there may be an aide at the school that is supervised by a school nurse. But, there should be a school nurse at least as a reasource. For children with health problems (even if they don't have an IEP), the school nurse should have a written nursing care plan. That sounds like more what your DS needs than an IEP.

Also, I thought of a 4th suggestion. This website has very nice (and discrete) cloth protective underwear along with disposable pads. That would probably be easier and less embarrasing to your DS than pull-ups (I agree with you that any 7 year old who is wanting to wear pull ups and avoiding drinking during the day is certainly not doing it for attention).

 

[eternaldisneyfan]

vhoffman

That is horrible! Your son is definately NOT faking! Your son qualifies for an individualized health plan which gives him legal rights to properly accomodate his encropesis. I would definately bring a doctor's note outlining and explaining the situation. Perhaps give the teacher analogies like feeling like you always have diarrhea or pressure on the bladder like pregnant women feel. I suffer from chronic constipation and diarrhea. Benefiber might help. Also perhaps on bathroom breaks he could always use the nurses bathroom. Or if there is no nurses bathroom, let him out 5 minutes before everyone else for the scheduled bathroom breaks. I wouldn't be surprised (based on the actions of the other students) if sometimes on the scheduled bathroom breaks he doesn't get a chance to go to the bathroom and maybe that is another reason he asks more. I have a slew of health problems and use an electric wheelchair so I always had problems going to the bathroom at school. I got 1 daily scheduled time and anything more than that I was made to feel guilty because it was so complicated. So I didn't drink either and had some 'accidents.' Things got better when my dad came to help me. So I can relate. Personally, I think the teacher should be chastised/disciplined for publicly humiliating your son! How dare she make him have an accident and then announce it to the whole class. There is no reason that he should be forced to where a diaper when the teacher could let him go to the bathroom. It's embarrassing, uncomfortable, and they leak. I hope things work out. Feel free to PM as I am very familiar with school advocacy. Take care

Christamae

 

[noahsark322]

Any child who suffers from a medical condition that could affect his performance in school is entiltle to an IEP. It would be for "other health related". While the IEP is being implimented you as a parent are an equal in developing the needs of your son. Include bathroom use unlimited without restrictions. And make your sons needs very well defined. A teacher and school district by law has to follow the IEP to the letter. I am not sure who you will be having this meeting with, however you need to be having a meeting with the special education dept. Special education is not limited to children with learning disapbilities, but children with "other health related" issues also. Good luck. PS...As a parent with a child with disabilities you will need to stand on that soap box and just have confidence that you are doing what is right for YOUR child not worrying about what others may think.

 

[vhoffman]

Thanks for the replies--I will start the peocess for an IEP right away. DS also has ADHD (which might cause his constipation) and I've tried with no luck to get an IEP because he's not two grade levels behind. However, I am going to press on with this one. Also, there's more to the story of his "wetting" accident. When he asked to use the bathroom and wasn't allowed to do so, then wet himself, he was sent to the nurses' office to change. There was a substitute nurse that day, so perhaps she wasn't fmailiar with school procedures. However, what she did was also unexcusable. She gave DS his soiled clothes in a bag to take back to class with him (usually they keep them at the nurses office until a parent can pick them up). To make matters worse, his class was currently at recess. He had to walk on to the playground with a bag of soiled underwear! Then he got into a fight with another student (wonder why?) I was called over to school and found DS in the office (in school suspension). They went on and on about his hitting another student. It wasn't until he stood up and I realized he was wearing different pants and asked why that I knew about the wetting accident. They told me (right in front of him) that he wet himself to annoy and control the class (unfortunately, he also does other things, like talking out of turn, goofing around, etc., to get attention, so they figured this was more of the same). He never told them or me that other children were taunting him (His sister saw the playground incident an told me about it). What a bunch of b*****s!!!!!He was wearing pullups to school after the accident, however, he now doesn't want to do so because other kids realized this and taunt him for it. He has had other hitting incidents. I have told the school what I feel the root cause is, however, if they believe me that's admitting they're wrong. I now go to school every day and take ds to the teacher's bathroom (one toilet) so he can go. However, we need more resolution than this. Any more comments appreciated.

 

[SueM in MN]

It sounds like you need a parent advocate - look for the information for your state at the PACER Center site. Parent Advocates are a service you paid for with your taxes. They can be helpful on the phone or even come to school with you to help advocate.
Here's a bulletin board that might be useful. The particular post I found on an internet search is a little over a year old, but if you do a search or post on that board, you might find something newer that is helpful. In case the link doesn't work, the board is conductdisorders.com

Here's another website that might be helpful. About 2/3 of the way down the page, it talks about other health impaired students and the statement that
"An increasing number of students diagnosed as having attention deficit hyperactivity disorder are being categorized as other health impaired for educational purposes."
Further down on the page, there is a good summary of ADHD. The website does mention that those kids often do not qualify for Special Education because they are doing well academically, but do fit into the Other Health Impaired category as the other posters said.

Another thing, if

they told me (right in front of him) that he wet himself to annoy and control the class (unfortunately, he also does other things, like talking out of turn, goofing around, etc., to get attention so they figured this was more of the same).

any second grader who is doing that is in NEED of some sort of plan. Kids without special needs do not go to that length to annoy the teacher. There are just too many downsides to the child for any child to choose that route. Them saying that is an admission that they do not have control of the situation. The other things he is doing are related to his ADHD, not to get attention, so they need to be in the plan too.
I suspect that they are confused, upset and don't have a clue what to do in the situation, so it's easier to just put it all back on the parent.
Are you working with a Psychologist outside of school? If so, it might be helpful to have the Psychologist attend or give some input into the situation.

And including the district special Ed coordinator as noahsark suggested is a good idea. We had a situation when DD was much younger where the school staff did not want to make accomidation. She told them they would do it because it was the law and they were obligated to do it. The principal still was dragging his feet and she took him out to talk to him privatly. The school people may not be that familiar with what is required, but the District person should be.

 

[JinniLynn33]

I am sooooooooooo mad as I read this. I don't really have any advice beyond what everyone else has already said. Just don't give up, and don't let them talk you into a bunch of bs behavioral problems either. I mean that may be part of the adhd BUT in this case there are other circumstances. Definately go to the Pacer site. I am soooo sorry you have to deal with this.


Virginia

 

[pampam]

I am wishing you as well as your son the best. I can't add any extra advice- it all sounds like good advice to me.

When i was a little girl, my bladder had not caught up to the rest of me in terms of growth, and I was always needing to use the washroom. Finally my mother had had enough, because the teacher would not let me use the washroom when I asked. One day after school, she marched into the room and told the teacher if she didn't allow me to go the the washroom when I needed, then my mother would give her the p***y underwear to wash. I felt so embarassed! But I also felt very humiliated whenever I had an accident. After that, all I had to do was quietly leave the room whenever I needed to. Mind you, this was 45 years ago,and things were handled differently then. I outgrew the problem. My heart goes out to your son. I know how embarassing and humiliating these problems can be. And it must also be very stressful for you. My advice is, take a deep breath, hug your son, and tell him how empty your life would be with out him. With you giving him all the love and support he needs, that will help to take away some of the frustration for both you and him.

 

[vhoffman]

Firts of all, my heartfelt thanks for all the replies. I must admit I'm quite surprised as to the replies I got here on DisBoards. You wouldn't think a travel related board would have such information, but it just shows me that this is a not uncommon problem.

Thanks to the poster who gave me the website for special underwear. Its ordered and on the way--hopefully it will work. sounds good. In the meantime, ds continues to wear pull ups to school. I looked everywhere to find some that didn't have a design on them. I finally found overnights. They say they "look and feel like real underwear", but they're just a pullup without a design. Several days ago another boy noticed ds was wearing pullups when he leaned over and his shirt rode up. So now he gets teased for that! DS now wants to wear long tee shirts and a belt to hide the pull ups. My heart goes out to him and the creative ways he so bravely tries to cope with his problem.

We have an appointment to meet with the school Friday and I'm going to start the procedure for an IEP under "other health imapired". However, I think I've already solved a bit of this problem. Monday I went in to talk with his teacher. I wanted the "element of surprise", when she didn't have a chance to get her ducks in a row. In the past, whenever I've attempted speak with my son's school about any problem, no matter how small, they always schedule an appointment and "gang up" on me--that is, there's usually three or four people in the room and they do all the talking and don't even let me state my case. Well, I guess I came across a little like Pampam's mother--I just told that teacher that ds had to be allowed to go to the bathroom and he couldn't be expected to wait over 3 hours for his first bathroom break. Her problem with letting him go was that he takes too long, fools around, and wanders the halls and doesn't come directly back to class. Unfortunately, I know this is true as I have received that complaint from other teachers over the past three years. It seems the bathroom is a "power kick" for him, its his time to do as he pleases. I can certainly understand the teacher's frustration with this, but the solution is not to deny him the restroom until almost lunchtime. Well, my "sneak attack" worked. She didn't have a bunch of other school officials in there to intimidate me and back her up and she finally conceeded that she would schedule a restroom break for the class as a whole mid-morning. She felt that would be easier to coordinate rather than having students asking at various times to go. Duh! She's been a teacher for 20 years and hasn't figured that out????

However, that just gives ds one morning bathroom break in three hours while he needs more. At least I'm getting somewhere. I'm fully prepared for the discussion of Friday to go against me, however, I have my ammunition now, thanks to the replies I've recceive here. Like I said, I will use Friday's discussion to bring up the IEP. I've also found talking goes nowhere (I've asked for an IEP before due to his ADHD). This time I will put it in writing and send it certified mail. By law they must respond within 30 days. Even if they refuse, I then have something to appeal. I've also looked into a parent advocate (still playing telephone tag). I'm getting somewhere, but why should it take all this to get a kid to be allowed to go to the bathroom? There again, thanks everyone!

 

[noahsark322]

Keep up the great work!! Your continued efforts will be rewarded. Do keep in mind YOU are allowed to bring anyone you want to an IEP meeting. In the begining my husband & I used to bring my father. Not for his insite, but just for his presence. Sometimes the idea of you not being alone to them is intimidating. Its so rediculous that you have to think ahead like this, but most of us have been down those difficult roads before.

 

[Earstou]

Requests for IEPs need to be in writing, not verbal, for legal reasons. I also requested an IEP verbally and it was "forgotten". I finally did research and found out these things need to be presented in writing. It also might be a good idea to have medical info and instructions for his health care written by his doctor and presented to the school.
Other tips I learned was to present yourself in a business manner, wearing a suit or other business attire. As a stay-at-home mom, I used to go in jeans and a nice shirt or sweater, but not anymore. I have to compete with all those power suits!!
Make a list of the problems you want addressed and the possible accommodations for them. Make sure every item is discussed AND make sure every thing that you want is actually written into the IEP. We just recently went through this process, and it's possible not everything discussed will go into the IEP , because you will decide it won't work. But make sure that every thing you think will work is in the IEP.

 

[Anne MN]

That is correct- request for evaluations have to be in writing. IEP it is like 60 school days from the time you sign their form that they outline what they are testing for. If he does not qualify for IEP- make sure that you know about 504. that is federal. it is for students that need "help" but do not qualify for IEP. It can get VERY FRUSTRATING. I am going thru re-eval process, plus issues with other DD at school (bus issue, getting picked on, threatened) school is not as responsive as they should be.
A good thing to do would be to go into the school, talk to the nurse,(bring your dr notes, documentation of things) and a copy for the nurse. one thing that would probably solve the wonder the halls issue is if they have a bathroom in the nurses office. my DD had a pass to the nurse to use the bathroom- she abused it a little, but after a week, it got to where she used it when she needed to.

Call your state education dept. talk to someone in compliance- explain what has been happening- make sure that you write everything down! date, time who was there, incidents- what happened- lay it out for them- dept of ed should be able to give you a little insight into what to do to "help the district" correct the problem.
I would also call the superentendents office- either talk to them or leave a message and make sure that someone get's back to you. or e-mail to the principal with a copy to the super- that usualy get's someone off the dime to resolve the issue.
I have been "not having fun" with my district all year- if you need any advice or ways to "move them along" send me a PM and i will let you know what i have done

anne

 

[davidtudor88]

As a special educator I would also like to respond....

According to the law, in order for a student to qualify for special education services, the student must have a disability AND this disability must have an educational impact which can only be remediated with specially designed instruction.... Most states used a discrepancy model to qualify children for services. However the law chagend as of July 1, 2005. States and districts still have some discretion in chosing a model, but many are moving to a RTI (response to intervention).

It is extremely unfortunate that you do not feel supported by your school. And I was really upset by the comment you made in reference to "feeling ganged up on" by the school. Unfortunately, I feel parents/guardians often view their interactions with schools as "us" against "them." Bottom line, you need to foster a partnership to help your child.

From the brief information I have read, I think the encopresis could best be accommodated using a 504 plan. I have not read anything which would support specially designed instruction for your child. 504s are used to make sure every child has access to the curriculum. What type of specially designed instruction would you request for encopresis? I received an IEP that wanted me to judge a kid on an encopresis rubric. They also wanted the school to provide counseling for the student. We are an institute for learning and providing an education. Counseling should be done with certificated mental health professionals. Most schools are more than willing to work with the mental health team. However, it should not be the obligation of the school to provide these services.

In reality, as a teacher I am part parent/guardian, advocate, counselor, etc....

I could go on.... Please work to foster your partnership.

D

 

[Debs Disney]

Oh do I feel your pain. My 9 year old son has encoprisis. We have been dealing with this for years. I would love to talk to you about this and share ideas. My son has been to a voiding clinic at Johns Hopkins and is on Medication. He also has Sensory Processing Disorder. He now has a 504 plan at school that allows him unlimited bathroom privileges. I could go on and on. Please PM me and we can talk further.
This is a great website with a wonderful forum.
http://www.aboutencopresis.com Deb

 

[Schmeck]

IEPs do not have to be followed to the letter in every state in the USA - Massachusetts has changed it's wording to state 'to the best of the district's ability' or somesuch.

Our school nurse has an enormous book of the 504 guidelines - wonder if you could get access to one in your district, before any meeting? That way, you'd have an idea of what to ask for.

 

[tw1nsmom]

IEPs do not have to be followed to the letter in every state in the USA - Massachusetts has changed it's wording to state 'to the best of the district's ability' or somesuch.

Federal law supercedes state law. If something is written into the IEP it is a legally binding document that must be followed.

Having said that, many schools get around this by using vague, open to interpretation wording. It's a parents responsibility to reject any IEP that is ambiguous or incorrect.

If Massachusetts has put this in their law I'm sure they have lawsuits in their near future. Especially since IDEA 2005 has changed the focus of IEP's to prepare special needs students for further education/meaningful employment/full participation in their community.

 

[SueM in MN]

Federal law supercedes state law. If something is written into the IEP it is a legally binding document that must be followed.

For anything that is governed by federal regulations, the state can do more, but they can't do less.

 

[Schmeck]

Well, with Romney gearing up for a presidential run, I don't know what he's got up his sleeve, but he specifially designed the wording so that it stated 'to the best of the district's ability'. He also cut all education grants that same year. It was a disaster in our district, as we scrambled for coverage for students. Services were definitely lost. I'd hate to see what he would do if he becomes president!

To the OP - definitely try to get as much info from your district's health program as possible before the meeting. Know what nurse coverage is there, etc.

 

[Wish I lived in Fl]

Nephew and niece went to a bowel retraining course in Boston. Kids were in one room, parents in another for teaching. Kids also prescribed Miralax. Miralax softens the BM so it won't hurt coming out. It also seems to bulk it up . Anyway the kids can't be constipated on it. Everthing else was tried first but it took Miralax to end the problem for them.

 

[Sandcass]

MY FIRST POST!

I know you posted this months ago, but I'd love to talk to you about your son. My son is also 7, and in 2nd grade. We just went to the doctor yesterday to discus this same problem. My DS had never really had total control of his bowels, even tho he's been potty trained since he was 2. The most important thing you need to do is to make sure your DS "empties" before going to school each day. My doc recommended mineral oil in a drink before bedtime each night. This should cause him to empty his stool in the morning when he wakes up. Of course this is our first day tying this, so I can't say what the results will be! Also, he MUST eat a good diet with lots of fiber to keep himself regular. The recommended amount of fiber for children is their age +5. So a child that is 7 needs to eat 12 grams/day. (not easy if your child is picky like mine!)

If you're still reading these, please get in touch w/ me. Maybe we can help each other!