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Hi!  I am Christopher's mom...mom of a newly dx UC patient who is 5 years old.  I am wondering what I should do or know to tell the school for Christopher as he starts K in one week.

I have read on here about a 504 and we plan to meet with principal and teacher to get one in place.  I never would have known or thought about this issue if not for this site. 

Christopher is still having flare up issues and issues from side effects of steroids.

If there is anything you think I should know or do before K starts, any input would be appreciated because not only is Christopher worried about starting K and the first ride on the bus, but now he is concerned about where the bathrooms are located and what to do if he has an accident.

Thanks in advance.

 Reply posted for MBowmanMurphy.

I can so relate to what you are going through with your son.  It is really important in any new school or building he is in to get a tour ahead of time, even just the two of you to find all the bathrooms.  This really puts our children at ease. This is such a big issue for my Elizabeth when she has started a new school.  She is now 10 and in 6th grade.

Everyone has to be aware, right down to the gym teacher. If your child comes home and expresses a problem with not being able to use a bathroom because of a teacher, it is important to get right on it because you don't want them to not feel 'safe' in school.  It only makes matters worse.

Every year you will go through this with a new team of teachers, but I have only had positive experiences. 

Hang in there.....that's a lot to handle when he is so newly diagnosed.  A couple years from now, things will be easier because each experience won't be so new.
Lori

 Reply posted for MBowmanMurphy.

Thanks to all of you for your input.  I wanted to update everyone.

We met this morning with Christopher's guidance counselor, nurse, teacher and principal to finalize a reasonable 504 plan for him for this school year.  I was really afraid that the parties involved would think we were troublesome parents or being extremely overprotective.  However, they were actually THRILLED to meet with us and were nothing but accomodating.

I  think we have good plans in place for  the year from things like bathroom accomodation, change of clothing, field trips, extra snack time, etc.  We will have it all in writing and all agree to the plan---being allowed to make any necessary changes as the year progresses.

In addition, we plan to meet at the beginning of every school year and see where we stand.  For our family,  this was the right decision.  Having a 5 year old, just a few weeks into the diagnosis, I needed some reassurance that he was being  treated fairly, but not differently.

I hope my questions and notes about the experience can help someone else.

Christopher's Mom

 Reply posted for Lizzies Mom.

Hi Lizzie's Mom!

Thank you for the kind reply.  I did take in extra clothing for the nurses office...a very good idea.  His bathroom is located in the classroom, but I like the suggestion for when he gets in to older classes.

I struggled with the 504 because I want Christopher to be an "ordinary" kid so badly.  One of the things we did was alter his medication schedule so that, for now, at this age, he can take all of his meds at home and not have to go the nurses office.  We meet with everyone next week to finalize the 504 however.

Our only concern was  that our  school district stressed it had to be done at the beginning of the school year if needed.  Christopher is doing great now on the steroids, but as he is weaned off, I have no idea how he will do.  He only started having symptoms late July.  I don't know what kind of course he will follow.  His symptoms in July were so severe that if were to have another attack like that he would need to stay home. 

 However, your email has prompted me to make sure that I stress during our meeting how I want Christopher to be treated just like all the other kids.

I haven't reached the feeling that things are fallen in place yet, but hearing that it will gives me hope.  Hope is a great feeling.  Believe it or not, even after 3 weeks, I find myself still in shock.  I feel crazy stating that...but I still can't believe it.

Thanks for your valued input.

Christopher's Mom

 Reply posted for MBowmanMurphy.

thinking of you all......i know he'll have a great day.  

 Reply posted for MBowmanMurphy.

We were able to make some progress today and we are going to set up some immediate items to make this first two weeks as easy as possible.  On the 14th they have a child care meeting with all of the necessary parties and then the 504 will be enacted.  The guidance counselor made copies of  the handout from this site and gave it to the principal, nurse and teachers.

I am feeling much better about Thurs.

Hope all is well with you and Claire.

Christopher's Mom

 Reply posted for AZMOM.

NO!  We got the run around last night so we are calling everyone today to get this settled.  We had our dr's appt on Monday and they are considering it def Crohn's Disease...based on numerous factors.  However, the great news is that Christopher gained 3 lbs and they feel he is in clinical remission. 

Hoping and praying that someone will get back to us today regarding the 504.  I would like to have a lot of these items settled.  We are going to just keep calling people until we get an appt.

Still reeling from one dx to the next...but happy about Christopher's progress and praying it continues.

As always, just trying to take it one day at a time.  There just seems to be no rhythm to our home  these days...trying to find that again.  Thanks so much for your post!

 Reply posted for MBowmanMurphy.

Were you able to have your meeting?  Hope all is well.

 Reply posted for MBowmanMurphy.

Hi Christopher's Mom,

My daughter was 4 when she was diagnosed and is now 10, so I've been there/done that.  I've alway tried to make her feel as "ordinary" as everyone else.  Sure, each year I send in a note to her new teacher explaining her situation and speak with the principal/nurses if they change that school year as well.  We do not have a 504 in place, thus far, knock wood, we haven't had a need.  I do know if a situation should arise our Board of Ed would be able to accommodate us.  

A few things you may want to do is keep an extra complete set of clothes in the nurse's office. Just knowing they are there just in case may take the edge off the worry.   Also, giving him a "free pass" to the bathroom.   I know our Kindergarten classes have facility inside the room, but if that isn't the case, the teacher can seat him closest to the door.  Our schools have a sign-out procedure for our upper grades, Lizzie doesn't need to waste time w/that, simply lets the teacher know where she's off to.   I make sure to send in enough of a "safe" snack when the class has a party.  This way there is plenty for everyone and she can be part of the celebration too. 

You will find as time goes on and your family gets a better understanding (diet, supplements, meds, tests, etc) that it does get easier.  Lizzie is at a point now she just simply says "no thank you" when something off is offered.  She has corrected her grandmother numerous times (the woman just doesn't get it)!  

I wish you and your family tons of luck....it will all fall into place.   My biggest part for Kindergarten was just the typical worry of my baby growing up.    Good luck.  Let me know if I can help.

Lizzies Mom

 Reply posted for AZMOM.

Thank you.  I already have the packet of information printed to give to his teacher and we have a 504 plan ready to be signed.  I think it is best to start this from the beginning to introduce the school and personnel to this disease.  It was your advise from another post that prompted me to look into this and I am glad I did.  I think as a parent it gives me a sense of security knowing that the school has to take this seriously.

I am not expecting any problems, but hopefully, this can help to prevent any from popping up.  Christopher has enough going on without having to worry about access to a bathroom.

However, we already have 2 calls in to set up a meeting and no response.  Orientation is on Monday and school starts on Thurs.  I know I will see someone on Monday so hoping to get this  resolved quickly. 

Thanks again!

Christopher's Mom

P.S. Christopher was well enough today to go to daycare and say goodbye to everyone!  Hoping he has a great day...

 Reply posted for MBowmanMurphy.

Hey - I just responded on your other post about the 504.  Ideally you should have your 504 meeting before school.  But if not, within the first week or so.  There is a download of stuff here to print for his teacher that should help.  I always give this to Claire's teachers every year in addition to the 504 just so they understand.