Community Forum

We have moved to Hawaii and it's been a long and stressful summer...Victor has been stressing over the new school since it is not on post and not a school w/many military students...he was not making friends and the security or lack of security was very concerning. He had a teacher who refused to let him use the restroom on several occassion even after she knew his condition (UC).

So I considered home schooling...would you believe the day I pulled him out...here comes the flare...same day! I just had a strong sense to take him out...crazy!

Now even with the flare...he seems sooo much happier...he loves his new homeschool program and we'll do this until we return to the mainland in couple years...

 Reply posted for victorsmom.

Hi:  I am Elizabeth mom, the one that Victor has been emailing.  I feel so sad that you would run into any problems like that in a school!  Shame on them!  I know exactly what you are going through with Victor and the new school.  Elizabeth started flares in both new schools she started and they were awesome there!  Even this year the team of teachers met with the counselor before we began and everyone was informed of no ask policy for bathroom use, she is able to use the faculty bathroom if it is more comfortable.  I cant imagine being in a school system that is so ignorant and insensitive.

Homeschooling is a good option at his age and I am sure he can find some playmates to be connected with in the neighborhood.  That is really important;  that he doesn't become isolated and only find home as safe.

As far as the 504 plan, I was told that that was more for students who fall behind and even though Elizabeth missed 62 days last year, that wasn't a problem with her.  They said if it is needed in the future down the road to do it then.
Hope everything works well and Victors flare is just a little incident that will resolve in your relaxed environment.  Goodluck!  Lori

 Reply posted for Lizzies Mom.

Thanks...Victor enjoys emailing Elizabeth...he feels so much better he is not the only one dealing w/colitis.

The school in Texas was extremely accomdating and when we return he will return to school w/a 504 plan in place.

As for educating the school...I did leave pamplets w/the teacher and the school office...I know now Victor was holding it  during school for a month and this could have lead to his flare...Grrrr! As for the school...not sure how much they will take into account special needs...I spoke to the Army EFMP (exceptional family member program) and they advised me not to give them the medical paperwork the school requested because they are now being investigated for having the state take an EFMP child from their home because of excessive absence...terrible...almost unbelievable in this day in age...

 Reply posted for victorsmom.

Sounds like a great VICTORY for Victor.....fantastic.    I'm glad you were able to make the best out of the situation.   

Hopefully once the dust settles you can begin to enjoy Hawaii and all it has to offer.   The best part of homeschooling is the flexibility it allows a family.   Good for you!

Best wishes,

Lizzies Mom

 Reply posted for victorsmom.

How very difficult this has been for you, Victor and your family.

Kudos for you for finding a solution that works for you and your family.  I have been blessed that Christopher starting K and a new dx of Crohn's...has an extremely accomodating school and a school which was very interested in helping us create the perfect 504 for him. 

I can't imagine  that in this day and age they would not allow a child to use the restroom after specifically knowing about UC. 

I hope Victor is improving each day!

Christopher's Mom

 Reply posted for victorsmom.

I'm with Joe.  Even if you continue the homeschooling, which sounds like a good fit for you, there is a learning opportunity for the school.  Also, this is another instance that supports the need for our kids to have 504s on file.  My heart goes out to your son for having such a tough time and good for you for finding a solution that works for your family!

 Reply posted for victorsmom.

Please make an effort to educate the teacher and school administration about IBD for the sake of those who will be coming after you. Talk to the school board if you have to. See if the CCFA has any brochures that you can give these uninformed people. Spread the word. Please.

                                                 Joe