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Crohn's Disease Forum » Parents of Kids with IBD » Looking for ideas for school


08-11-2016, 12:48 PM   #1
Imerald
 
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Looking for ideas for school

So my little bean started Kindergarten and we have our 504 meeting next week. We had it initially scheduled for the week before school started but they didn't realize how in depth this would be and didn't schedule enough time

So my biggest concern is that all the people she will come in contact throughout the day won't understand her need for immediate bathroom access and she'll have an accident. She's not one to argue with an adult if they tell her no. So as a part of the 504, they can give her a "all access bathroom pass" but since she's only 5, I'm concerned she'll lose it etc. My thoughts were I could get her a custom jelly bracelet that has her name and something like access pass or something so as to not be entirely obvious to other kids but the staff would understand what it means.

Any thoughts or other suggestions. She's allergic to nickel so I thought the jelly bracelet would be comfortable and relatively easy to order custom.

-Susan


08-11-2016, 07:58 PM   #2
CrohnsFighter
 
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Imerald,

Here is how I look at it... You are taking the correct step by creating the 504, and I'm sure you will take care of the language to allow her to go to the bathroom as often and as many times as necessary.

The most important thing out of all of it is to have a talk with your little one that she is allowed to go to the bathroom whenever she needs to no questions asked. If a teacher tells her that she can not go, let her know she is allowed to go anyway. Drive home that she will not get in trouble, and you will not be upset at all if she needs to go.

If you do run into any issues at all with a teacher after the 504 is in place, threaten legal action for violation of the 504 to the director of special ed and cc the teacher on the email. The teacher will quickly "learn" to understand.
08-11-2016, 08:20 PM   #3
my little penguin
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Things you can do
Get a medic alert bracelet ( silver plan) kids can't take it off only adults
If she has to "go" tell her to point to get bracelet as say she needs to use the bathroom
Most kindy classrooms have a bathroom in the classroom or nearby
I have never seen a kindy teacher tell a child "no" for any reason at that age most have accidents at school regardless

No one questions medic alert
It looks offical
We made two laminated ( clear packing tape ) cards
With Ds name on them out of bright colored paper
He keeps them in his desk and places them on his desk to leave to go to the bathroom or nurse - this way he isn't interrupting class and the teacher can see easily where he is
But in kindy they need a chaperone to the bathroom

Medic alert has a kidsmart program
My kiddo put his one bracelet on at 4 and 1/2 and didn't take it off or outgrow till age 10
Good luck
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08-11-2016, 09:21 PM   #4
CarolinAlaska
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I would also recommend that the teacher or nurse keep changes of clothes handy for her. You never know how some meal or snack might suddenly give her urgency issues on the playground or somewhere inconvenient. I've had issues like that myself and have wished I kept a change of clothes in my trunk!
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08-12-2016, 07:35 AM   #5
Pilgrim
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Our Crohn's kid had her first year last year. I think you are doing a great job of preparing. I second the advice to make sure your child knows that you won't be angry if she goes without permission.
My daughter kept a change of clothes in her backpack and took care of herself the one time she needed to - fortunately it was no big deal.
We did have a problem around her drinking "Ensure" - they told her she couldn't drink it until she ate all her lunch (like it was dessert). So, being unable to eat that day she came home hungry and in tears. I dealt with it thoroughly and in writing and there was not a problem afterwards.
I think it's best to handle problems in writing so there is a trail.
Another thing that helped for Kindergarten was to be there to pick her up with a vehicle (instead of bussing, or even walking with her). Sometimes she would seriously need to "go" but have held things so as not to inconvenience the teacher. And sometimes she was so exhausted.
We're in Canada so can't help with specific 504.
08-12-2016, 08:22 AM   #6
Imerald
 
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Thank you all for the advice. It's great to hear what others have done and what works.

I'll definitely look into the medical bracelet and see if there is an option that works for us.

Her teacher has been great and had a plan worked out for her the first day even without the 504 in place. She's allowed to have a snack at her desk and a drink. She can use the restroom in the classroom as needed and the teacher even bought her a little storage drawer to keep wipes and extra clothes in the bathroom. She even brought in a bean bag chair and a moon chair for her to sit in should she be uncomfortable. So we're very happy with how things have gone so far.

I'm more worried about the people she doesn't see on a day to day basis, like the substitute or dining room staff, or the people who help her get from her class to where I pick her up and drop her off.

So I will definitely talk to her about just going and not getting in trouble about it and also the laminated cards for her desk. She can keep them in her pencil box and use with a sub, etc.

Thank you again, your responses have helped ease my anxiety. ❤️


08-12-2016, 09:50 AM   #7
my little penguin
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We kept a fluroscent sheet with Ds 101 on
Bullet points important for subs and other staff to know

Good luck
08-13-2016, 07:18 AM   #8
polly13
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We live in a different country so I'm not familiar with the 504 but when Lucy was starting school she was at her sickest so I fully understand the stress and worry. In conjunction with the school we secured a special needs assistant who was available to help her in the bathroom. She was assigned her own bathroom where she was able to keep her 'toilet stuff'. She had two changes of clothes. I met her teacher with her before she started where it was agreed that she could get up and go to the loo anytime she wanted. Have to say that meeting was really important as it gave Lucy the confidence to get up and go when she needed to.
08-17-2016, 12:59 AM   #9
Imerald
 
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Well, we had our 504 meeting this morning and it ultimately ended well. I did end up crying at one point. I hate that part. The district nurse kept responding to some of our accommodation requests with,"Let's be positive and hope it doesn't come to that." If all it took was for us to be positive, we wouldn't be sitting here in the first place. I was ready to unleash on her. Especially after what happened yesterday, which is what the majority of our issue was with.

So DD was originally a car rider, but because it was taking 20-30 mins to get through the car line and I couldn't be away from work for much longer to arrive earlier, we switched her to a walker. We park next door to the school and walk over to the school and meet her. Several parents do it and the school has a teacher walk the kids from the school to the sidewalk near the road where the parents wait. This has been great as it takes about 5 mins to walk over, get DD and then walk back to the car. Well, yesterday was a bad day for her disease wise and she was having a lot of pain. Hubby could see as soon as she walked out of the building she was in pain and walked over to pick her up and carry her. They wouldn't let him! They insisted that he had to stay in the designated area and that she had to walk over there. I wasn't there, but I would have picked her up regardless.

So we expressed our concern with her sitting outside as a car rider for 30 mins where she doesn't have bathroom access and they wouldn't budge on letting us carry her should she be in pain. They kept insisting that if we knew she was having a bad day, we should arrive to school 30 mins prior to dismissal and sign her out early which would cause her to miss science. I told them that was unacceptable and that if we were unaware she was in pain before she went to school, we would have no way of knowing to pick her up early and that I would not subject my child to an activity that I know is causing her pain.

We went back and forth for about 30-45 mins until they finally agreed to have her walk to the front with the daycare van riders and she could sit in the office (with restroom access) and we would sign her out everyday at dismissal time so that she's not missing class.

It really is amazing to me at just how much the school staff and administration fail to understand when it comes to these things. They also tried telling us that we couldn't drive her to and from field trips and that we would have to chaperone in order for her to participate in field trips. *sigh*

All in all, I feel that we have everything covered and I feel better knowing we have something in writing and that we hashed out the issues we were worried about over the first week. But that meeting left me feeling drained the entire day.

Last edited by Imerald; 08-17-2016 at 01:14 AM.
08-19-2016, 04:53 AM   #10
CarolinAlaska
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Good for her that she has you as her advocate. I'm sorry that it's even necessary. So stupid that they couldn't see the need for dad's help that day without seeing it as a threat to the other children... ugh!
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