Random quote: "Argue for your limitations, and sure enough, they're yours." - Richard Bach (Illusions)
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New user
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| This is my first time on a website like this so I hope I do this right. My son Justin was born with high imporforate anus. I told the school of this when he entered first grade. Two weeks ago he went on antibiotics for scarlet fever and as a result of the antibiotics he had a lot of diarhea. The school could not handle this at all. The called me 5 times at work and his teacher insisted that I get him seen by his specialist immediately. I am a special education teacher so I have some idea what accomodations he should have. I asked why the occupational therapist isn't helping to teach him about changing his clothes, cleaning up his hands. (He has a lot of OT issues)Why isn't he allowed to go the the bathroom on a regular basis. (They make him raise his hand and wait for the teacher to call on him so he can go) Why isn't there any kind of a behavour plan in place...
The teacher tried to get me to state over the phone that his is a purely medical issue to the extent that there are no modifications she could make in class that would help him at all. I refused to say this and I said there is a lot she could be doing. We had an emergency meeting the day before February break. The teacher is pushing for a medical solution like surgery. The school even went so far as to get there own pediatrician to review the case. I just wrote a letter to them stating I do not give their pediatrician permission to treat my son. Last year, when my son was in kindergarten at a different school, with a bathroom adjoining the classroom, he had only 5 accidents throughout the entire school year, and these were handled very discreetly. I do not think he needs surgery at this point, just a lot of modifications and maybe a more carefully controlled diet. We are meeting again March fourth and I hope we can work together better. As of Thursday he was not allowed to go to the bathroom without permission from the teacher, (but now they will take him every hour.) He often has noone to help him clean up, and with poor hand function he is not to good at doing this himself. The school wants him to get counseling to deal with the stigma he may feel, but they want their own pediatrician to do it(who is also a psychologist.)The principal says that having him in her school is terrible for the staff and students because he did not clean his hands well and left poopy fingerprints on the desks in class, and even on the teacher. I say then she should have someone help him go to the bathroom and wash his hands properly. I wrote a letter insisting that the school come up with a Plan of Action for dealing with my son's condition and have it to me by March 4. Any thoughts? Also, does anyone else follow a particular diet for controlling diarhea? Thanks | |
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Extreme Veteran
Posts: 432
 
Location: Perry Hall, Maryland | My son had similar problems. Unfortunately, the best course of action is to "stay the course". Pauley's elementary school wanted him 'out of there' or wanted me to come over each and every time he had an accident. By not making myself available, (and YES, LET THE SCHOOL SHRINK get a load of your son), believe me, after several weeks, changes were made and fast.
If a parent is "unavailable" suddenly and the law says the school must "deal with it", you will be stunned at how quickly an institution can come around once they realize you will no longer be pushed. Pauley went around soiled for approximately 4-6 weeks. It was a rough time. I will not lie to you. I had daily chats with him as to why this was happening.
By the end of the 6 weeks, a miracle happened. The school made adaptations. Major adaptations. Believe me when I tell you that a school's voice screaming to the BOARD OF EDUCATION for help will go much farther than a parent's voice screaming to the school. | |
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Member
Posts: 25
Location: Philadelphia PA | MY DAUGHTER MIRIAM IS 6 YEARS OLD. SHE IS IN KINDERGARTEN IN PHILADELPHIA. WHEN WE ENROLLED HER IN THE LOCAL ELEMENTARY SCHOOL WE HAD AN (IEP)INDEPENDENT EDUCATION PLAN MEETING AND IN WRITING. THE MEETING INCLUDED THE SCHOOL NURSE, A SOCIAL WORKER, THE PHYS ED TEACHER, THE READING TEACHER, A KINDERGARTEN TEACHER AND THE PRINCIPAL. WE HAD SENT IN A LOT OF MEDICAL INFORMATION FROM HER DOCTORS, PRIOR EVALUATIONS AND I THINK THEY THOUGHT HER CARE WOULD BE A LOT MORE INVOLVED. THE FINAL OUTCOME WAS THAT THE REGULAR CLASS ROOM AIDE WOULD TAKE MIRIAM TO THE BATHROOM TWICE A DAY. THIS IS ALL IN WRITING. THEY TAKE HER IN FIRST TO GIVE HER PRIVACY, MY DAUGHTER TAKES CARE OF HERSELF, WITH THE AIDE TELLING HER ALL THE PLACES TO CLEAN HERSELF. SHE IS LAXATIVE DEPENDENT SO OCCASIONALLY THERE ARE MAJOR PROBLEMS. THEY SENT HER HOME EARLY TWICE BUT WE THINK SHE REALLY HAD THE FLU. THE AIDE HELPS US KEEP A CHART OF WHETHER SHE PEES OR POOPS AND WHEN AND IF SHE STAYS CLEAN. I SEND IN A BACKPACK WITH FLUSHABLE WIPES, TWO PAIR OF REAL UNDERWEAR WITH A STAYFREE OVERNIGHT MAXIPAD WITH WINGS (WE LEARNED THAT AT LAST CONFERENCE) GLAD PLASTIC BAGS SO IF SHE SOILS HERSELF SHE PUTS THE UNDERWEAR IN THE PLASTIC BAG AND I WASH IT WHEN SHE GETS HOME AND A CHANGE OF CLOTHES (SCHOOL UNIFORM SHIRT,PANTS AND SOCKS). WE ONLY HAVE ONE TRICK WE GIVE HER LAXATIVE AT DINNER TIME, WHICH TIMES MOST OF HER POOPING BETWEEN 7 & 8 AT NIGHT. SHE IS ALSO GOING TO A CLINIC AT CHILDREN'S HOSPITAL OF PHILA, THEY HOOK HER UP TO BIOFEEDBACK COMPUTER AND ARE TEACHING HER HOW TO USE HER MUSCLES TO EMPTY HER BLADDER OR PUSH THE POOP OUT SHE HAS BEEN DRY EXCEPT SOMETIMES IN THE MORNING SINCE SEPTEMBER, SHE SLEEPS IN A PULL UP. POOPING IS VERY HARD TO STOP ONCE IT STARTS, I THINK AS SHE GETS OLDER HER MUSCLES HAVE GAINED SOME CONTROL BUT I THINK WE HAVE TO WAIT AND KEEP TRYING FOR THAT. THE PADS HELP. I KNOW SOME OF THE COOPERATION WE GET IS BECAUSE THE NEIGHBORHOOD SCHOOL PERSONNEL WE DEAL WITH ARE WONDERFUL BUT SOME OF IT IS WE TRY TO MAKE IT AS EASY FOR THEM AS POSSIBLE. IT'S A BIG CITY SCHOOL AND THEY'RE USED TO FAR WORSE PROBLEMS THAN HERS. BEFORE THE IEP WE WERE TOLD WE MIGHT HAVE TO HAVE A LAWYER, SO WE DID CONSULT ONE AND WE WERE PREPARED AT THE IEP MEETING. WE ARE VERY LUCKY. I KNOW I HAVE IRRITATED THE TEACHER WITH TOO MANY EXPLANATIONS SOMETIMES, BUT UNTIL YOU'VE HEARD TRACHEAL MALAYSIA COMBINED WITH THE END OF A COLD IT'S TOO HARD TO DESCRIBE AND NOT HALF AS BAD AS IT SOUNDS. OUR BIGGEST PROBLEM IS OUR DAUGHTER'S PICKY LUNCH HABITS, WHEN SHE DOESN'T EAT WE JUST GIVE HER LUNCH WHEN SHE GETS HOME AND FEED HER DINNER A LITTLE LATER. IT'S EASIER THAN FIGHTING WITH A 6 YEAR OLD AND SHE IS NO WORSE FOR WEAR. MIRIAM HAD IMPERFORATED ANUS, TEF AND CLOACA. SHE HAD ALL HER SURGERIES (COLOSTOMY, TEF REPAIR, CLOACA REPAIR AND PULL THROUGH) BY 13 MONTHS AND WE'VE BEEN VERY LUCKY. | |
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Veteran
Posts: 166
Location: Wisconsin | Yes, I'm sure surgery is not yet the way to go yet. Unless it becomes a problem way to often and they should not have to tell you what to do. I was in first grade to third and my mom told the teacher I had problems with the bathroom. They had me go whenever and a chair near the door to make me feel better. It made a load of a differance. I hope your son feels better soon.  Hugs | |
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Member
Posts: 25
Location: Glendale, CA | They need to provide whatever he needs. It is the law. I would contact an Attorney and have them present at meetings. We have done that.
Presently we are fighting over Sean being back in school. He is currently home bound since they only have a school nurse there one day a week and I want on there every day. Our Pediatrician has written the District letters stating they need to have a school nurse there every day for the just in case or provide a nurse as his aide each day. The District has said their Drs have said Sean is fine and will be fine and since we live very close to the school, I could just be there in a few minutes. I told them a few minutes are things Sean will not have. It has to be immediate help. They also do not like him being hooked up to a feeding pump during school hrs. They feel another student will pull on the tubing. We have it secured to prevent that. It is a war. They don't like anyone who is different.
Good luck!
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Extreme Veteran
Posts: 432
Location: Perry Hall, Maryland | Shelly -
Ask whoever suggested that your son not use his feeding tube during the day to go without food and water during the school day to do the same thing themseves and get back to you. Ask them to do this repeatedly each and every day during the school week. If they are unwilling to do this, ask them why, since they are suggesting your son do the same. You'll be amazed at how quickly that idea will change.
Pauley once had a teacher who suggested the same thing. I suggested that that teacher practice what HE preached - try fasting from food and water each and every day......all day long. The teacher decided that having a feeding tube in the classroom was not such a bad idea after all. | |
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Member
Posts: 25
Location: Glendale, CA | Anne Marie~
I love it! I hadn't thought of that, so I will try it at our meetting next week. Totally neat way to handle it.
Thanks!
Shelly | |
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Extreme Veteran
Posts: 432
Location: Perry Hall, Maryland | Unfortunately, I have a rather bad reputation at my son's school. I'm not proud of being labeled in such a manner, however, being an advocate for a child can do that to any parent. Pauley tells me,"Mom, they will do ANYTHING to avoid having a meeting with you. You make them very uncomfortable."
Do I? I'm sorry I make them uncomfortable. I'm sorry they've made my son uncomfortable in the past. I'm sorry I've had to point out to them how dysfunctinal their system is. How archaic it is. I'm sorry they thought I was a stupid, uncaring parent who would not be bothered or could not be bothered to call for a meeting and face them dead on. And, I'm sorry my directness has forced them to conform to adaptations they thought they were going to get away with.
*El Zorro.* | |
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Member
Posts: 25
Location: Glendale, CA | Our District feels the same way with me. Oh and so do our Drs. I don't let ANYONE off the hook when it comes to my children, especially Sean. As one teacher/friend told me, 'An informed parent is a dangerous parent.' I am a bit more hard hearted when it comes to the district and drs~~ If they want to make my and Sean's life miserable, I will return the favor. I don't care HOW uncomfortable they are with me. They NEED to learn to be respectful to, not just us, but to ALL PARENTS! I make sure they know that. The Drs learn faster than the District. When my Paul had his IEP this last go around, I could not be there. Sean's teacher came at the same time, so I sent my husband to the meeting. They thought they could get away with everything....my husband is worse than I am. He has actually started a due process hearing. He informed the district, some of the same people sit on Sean's IEP/504 Team, the same thing would happen if they pulled the same stuff at Sean's meeting. All of a sudden, before the meeting has happened, the District is going to pay for a nurse to be with Sean the whole day at school. Scared?! I think so.
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Expert
Posts: 1709
 
| I don't know too much about it, but I remember Connie posting about a 504 plan - maybe something like that being put in place can help?
Good luck and keep fighting!!!!
Elaine | |
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Veteran
Posts: 104
| Here is some information about a Section 504 Plan from Wrightslaw, but it sounds like you may have one already in place.
http://www.wrightslaw.com/info/sec504.index.htm
Congratulations Shelly and Ann Marie on joining the "Parents from Hell Club" from one of its charter members. The staff at my daughter's school are afraid of us now too, and we show up there frequently. Nothing turns us into dangerous Mama and Papa Bears quicker than someone attacking our Cub. My daughter's school has certainly learned that. My husband and I attend all Catherine's IEP's together. If one of us cannot be there, we ask that the meeting date be changed so that we both can. My husband is even tougher on them than I am, too. He wanted to take them to due process even though our attorney said we would almost certainly lose, just so they would learn we are parents who are willing to fight for our daughter's rights.
Justin's mom how did it turn out with the school? Did they get someone to help Justin in the bathroom? I don't know who they think they are or where they think they got their medical degrees suggesting surgery for Justin rather than just letting him go to the bathroom when he needs to go and helping him clean up! I don't know much about controlling diarrhea. My daughter has the opposite problem. She has encopresis. I know when a child is recovering from diarrhea from a stomach virus, you feed them Bananas, Rice, Applesauce and Toast (BRAT diet). Whether this would be binding for your son depends on his digestion. Applesauce and apple juice used to give my daughter horrible diarrhea when she was younger, perhaps because she had difficulty digesting the sugar in it. White grape juice caused no problems for her.
I love Ann Marie's idea about asking the teacher to fast from food and water for the whole school day and week. If they want a child to do it, they should be willing to do it themselves too.
Catherine, who has an IEP because she has autism, does not have a feeding tube anymore, but she is currently having frequent toileting accidents. I do NOT want to put her back in Pull-ups. It took me too long to get her out of them and into panties. She has a male special education teacher and a male and a female paraprofessional, who rotate and share her time equally. The male special education teacher has been complaining that they have to call the female para in from whatever she is doing every time Catherine has an accident. I have said nothing, but I am tempted to say that I voiced those very same concerns when the school district wanted to move her to the care of two males and they said they had plenty of females who could share the responsibility of toileting help for her. | |
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Extreme Veteran
Posts: 432
Location: Perry Hall, Maryland | Any complaints regarding toileting should be directed to the school board then. Pauley used to have accidents every day. This was due to him not being allowed to use the bathroom frequently. I also had the school suggest sugery and this or that treatment. This was my response:
"Is the person making this recommendation an M.D.? No? Then, when you have graduated from medical school with emphasis and experience on the bowel, come see me. Otherwise, I will be taking my lead off the advice from somone who HAS graduated from medical school with emphasis and experience on the bowel."
If the answer was "Yes", the response would be,"This is the name and phone number of Pauley's doctor. I am not a surgeon. THIS doctor however, IS a surgeon. I suggest you phone HIM, and tell HIM of your revelations. If you can convince HIM that your ideas are worth following, I'm sure he will schedule and do what you advise. In the meantime, I will be basing my plan of care off of what Pauley's physician has recommended. However, we can enter it on the record today that YOU will be contacting Pauley's physician in an attempt to swing him to your point of view. That way, we can all wait to hear the end result of your efforts."
One school psychiatrist actually did speak to Pauley's doctor, and we quickly learned that his idea was shot down. I don't get between doctors - I let THEM sort it out. For those who THINK they are doctors, show me the lambskin that has the initials M.D. on it. | |
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Regular
Posts: 85
Location: Chicago, IL | We are in IEP "hell" with David and schoools too. Great tips and support here, thanks everyone for reminding us to stick to what is best!
Suzanne | |
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New user
Posts: 1
| Hi, I am grandma to a 7 yr old with high IA. His school is wonderful with him! He has an IEP and the school nurse pulls him out of class several times a day for his bowel program. So far the other students have not teased him. They assume he is a diabetic or something. He takes miralax during the week and enemas on the weekend. He still has a problem with "smearing". I sew pads into the back of his underwear and the nurse keeps several changes for him. They are sent home in zip lock bags in his back pack. Our main problem is teaching him to take responsibility for keeping himself clean. Good luck to you. It sounds like your principal needs a little education. | |
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Expert
Posts: 3132
Location: Albany, NY | what a great idea with the underwear! | |
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