Gifted Issues Discussion homepage Forums Twice Exceptional Need school advice for encopresis

Bear has been diagnosed with encopresis. He has no sensation at all of needing to poop and is on a heavy dose of miralax to prevent blockages. He has never been potty trained, is now 5 and has started to be able to feel when he needs to pee.

The program we want to put him in (2 days a week, 4 hours a day K-5 class) is saying that he needs to be fully potty trained. They are under the same public school charter as the program he is in now (two hour and a half long classes a week that change every 6 weeks or so). This is a confirmed medical condition based on either physical delay or possibly a disability (we're trying to get in to a specialist right now).

Can they do that? Isn't it illegal? I'm not even asking for an aide or other support, I'm going to act as his aide. There have been no problems at all with it in the program he is in now (once again, same charter).

I think I asked about this before, but it was before we had a diagnosis.

I need all the mama bear help I can get here. The set up of the program is literally exactly what Bear needs.

Hmm. This is a tough one.

First, you should check state laws. There may be state health laws or regulations that prohibit attendance by children who aren't toilet trained. I know that private schools require that children be fully toilet trained as a typical condition of enrollment. So it's at least legal for them in the absence of regulations. Plus, kindergarten isn't mandatory in 35 states, so if your state is one of them, they may be able to set a similar requirement, regardless of any kinds of laws.

Second, AFAIK, teachers aren't allowed to change a soiled child. This makes sense. Also, what's going to happen if you can't get to school and you can't leave your son at home (say you have the flu or have an emergency and can't go to school)?

Third, I realize that you've said he has a confirmed medical condition, but children with other confirmed medical conditions aren't allowed to go to school either (e.g. infection with a stomach virus or other highly infectious diseases).

Finally, and I know this is hard, try to see the situation from the school's point of view. Your son has a condition that can easily affect the health of other people in the school. Not to mention other considerations. Personally, I don't think that this situation calls for a "Mama Bear" approach. I think that a gentle approach and a healthy appreciation of the other guy's point of view is more of what's needed.

This is all just my opinion!

While this is true, those diseases do not qualify as disabilities, because they are temporary. Encopresis is a disability, so he should at least have the protections of the ADA. (I've thought about this a lot, because my DS4 is not potty trained either, and may have the same condition.)

I still don't think this necessarily qualifies for a full-scale attack mode, certainly not yet. After all, if you do get him in, you want to be able to work with the school. I would probably start by writing them a letter explaining that while you understand that being potty trained is normally a condition for being allowed to enroll, your son has a disability that interferes with his potty training. Perhaps point out that if the problem was that he couldn't walk, they would put in ramps for his wheelchair where needed, not refuse to allow him in the door. Explain the plan that you have to mitigate any dangers to other students and to protect him, including contingencies for the things that Val mentioned.

I suspect that a pleasant letter that explicitly uses the word "disability" will cause them to think twice.

ADA protects a student who cannot handle toileting. There is no way a state law could be written to prohibit attendance at a public school by a child (or a teenager) who is not toilet trained. The teacher might not (in a mainstream environment) be allowed to do it, so school would have to provide an aide.

It gets more complicated with private schools and/or preschools, but if the law mandates a child be in school the school has to handle toileting, and LRE means herding the child into a specialized program is not appropriate solution. Since Bear is 5 I am not sure any of this will help, but charters are bound by the same rules as public schools.

I wouldn't see this as a potty trained or not potty trained issue. Your kid has a medical issue. One that is not contagious. To me that is different. Plus it sounds like you are there to handle any issues that might arise because of his condition.

Is there a Children's hospital nearby? Maybe a social worker type person could give you some pointers. I am wondering how this would be handled if he had an ostomy. Of course it isn't exactly the same but it seems close enough that what might apply to one situation could apply to the other.

ADA should cover it and require that they provide accommodations unless it is. Private school or a school that can prove it is impossible to meet the ADA requirements and get a waiver.

Sorry for the diagnosis, but glad you have answers that can now be addressed.

I agree this is not a question of "not toilet trained" it's a question of a medical condition. Certainly in Australia I know multiple children off the top of my head who have encoparesis and are at school. What happens if it's still an issue when he's in yr2 (which it may well still be), are they going to say he can't go to school because he's "not toilet trained"?

To Val:

It is a public charter school and he is already enrolled in one of the programs in that charter school.

No one is asking the teacher to change him. I would act as his aide. If I could not go for some reason my husband would or I would find a replacement or keep him home. In the regular school K program kids in diapers are allowed to enroll, but the parent must come to school to change them.

It is not the flu. It is more akin to asthma, severe allergies, or aids and I'm pretty sure all kids with those conditions are allowed to attend school. And he's already attending school in the same charter, just a different program (that's what REALLY gets me...)

There is no public health threat since he is in pull ups, not underpants, and would be getting changed as soon as they were soiled. This cannot affect other children's health unless they decide to go digging around in his pull ups and I'd be there to stop them even if they did get that idea.

To everyone else: Thank you so much. I have already talked with the administrator and written a letter to the teacher asking for her specific concerns about the issue. Originally it was just the administrator who had issues. I am planning to contact a school advocate if my meeting with the teacher on Monday does not change anything. In the meantime I will research the ADA guidelines and see if I can find anything to print out that will help. For some reason I was blanking on ADA... I'm going to make sure to stress it is a medical issue not a potty training one and someone else suggested that I throw in "I don't believe my child should be discriminated against due to his medical condition."

Wyldkat, one of my dds had a classmate in K who was incontinent due to a medical condition, and the school's TA and nurse were both trained to change him. I believe that the ADA would guarantee he has a legal right to be in the program since it is a public school program, and personally I would argue that he should be provided with an aide by the school rather than you having to be responsible.

If you haven't looked yet, it might be worth looking at the yellow pages on the wrightslaw website (www.wrightslaw.org) and seeing if there are any advocacy agencies in your area that could help with advice. Our area has both a legal advice services group and a parents' advocate group who will advise parents at no cost in situations like this.

Best wishes,

polarbear

Everything changes with a actual diagnosis.

I wouldn't assume the school would want you to be his aide. No harm in offering but I would just be open minded. There may be district/state rules about training requirements for that type of assistance, it may legally have to be a school employee rather than a volunteer. They may prefer to use an aide or nurse that can be responsible for assisting other children at the same time.

No need for mama bear yet, more need for a friendly and busy squirrel personality. Offer to your principal to assist in looking into it, offer to call the district nurse or whomever else they think might know how to proceed. Offer your time as they have so little.

Understand also the teacher/principal etc may have very normal personal gross out feelings to dirty diapers in a classroom. No need to apologize for that as it's not Bear's fault -- but it's a real gut reaction that may color their initial responses in a way they feel embarassed for later. Your school almost certainly wants to do whatever they are required to, but may need a bit of time to get used to the idea.

I would think if it is a medical condition then they can not refuse enrollment. I know there are many severe needs children who need toileting care in school and they are not refused enrollment because of it.

My middle son is in special ed and incontinent due to Hirschsprung's disease. The teacher and the classroom assistants change soiled diapers at least 4 times a day. I have never had an issue.

The Pull-Thru Network has a bunch of information on advocating with the school for kids who are incontinent. http://www.pullthrunetwork.org/

Update: So after talking to a school advocate I went to see the special ed dept for the district on her advice. The head of the dept was there and I asked her what the rights were for kids with medical conditions, she recognized us from the special ed preschool and asked what was up. I explained and she said she'd give the administrator of the school a call and try to sort things out. Yay!

Good news Wyldkat! I hope the school sees the light. Actually, I expect they'll see the light quickly once the district rep reminds then of the ADA

Good luck!

polarbear

Another update: I got a call from the head of special ed who explained that she had talked to the administrator and would see if she could attend the meeting I am going to with the teacher on Monday. It turns out the reasoning behind not wanting him in that program because of the pull ups makes no sense, at least not to me. They are afraid the other kids will shame Bear (Um, he's already in the charter going to classes in another program, has met most of the kids in the program and no one has noticed or cared that he is in pull ups, not that he would care in the slightest if they ever did!) and.... (drum roll please) that since it is a k-5 program and most of the other children are older it would be too hard for him!!! (*recovering from laughing* A. What does that have to do with toileting? B. There is a K student in the program already and C. Bear is currently in 2nd grade math and 1st for every other subject. That one just screams smoke and mirrors to me.)