Community Forum

HI!  Let me first give you a little background on my 18 year old son. My son was diagnosed with Chron's shortly after his 18th birthday in Sept 2010.  After 4weeks in the hospital and oral meds that were working, he got to come home.  Then three short days later he was back in the hospital- we decided to start Remicade.  He has had 5 doses since October and we are hoping with the last one on Decmber 2nd that he will be on a 4 week schedule going forward.

He hasn't been back to school (his senior year!) since the third week of school. We live in a great school district who has sent a tutor to our house twice a week. 

There is so much more to his story, but I have a question about the collge appectance letters that he is receiving.  We have received two colleges that have asked if there are disablities that they should know about. Do we send somthing to them to let them know about the Chron's, so that there can be some kind of facilities plan set up for him.

Any suggestions or comments would be welcomed!

 Reply posted for Mom2djl.

Part 2 ...and sorry I hit the button too many times on part 1

4.Connect with the Disability Services Office at the college...meet/phone/email... They have there own paperwork to fill out but it's a good idea to research ahead of time so you know what questions to ask etc.  bring them a copy of school plan (504),  The DS folks can also help when scheduling classes based on what may work best for your son.  Mornings were not good for ours.  They can help with dorm/meal plan stuff. My son had to defer a semester start and options had to change (staying local/commuting) but he is doing ok.
5. Other sites I found helpful: www.ibdu.org (IBD University) and http://ibdsupport.dragonpack.com/
Hope this helps.  Best wished for a healthy 2011!

Hello-  Lengthy- so Part 1
   I have been down this road..... at times the road was bumpy +/or detours needed....but here are something that helped us.
1. Have a good, no make that great, relationship with the school nurse and guidance counselor.  I cannot say thank you enough to my son's school nurse for advocating for him and educating the school staff.   The entire staff was sensitive to what he was going through.  The college adviser was instrumental as well.
2.  Have a good relationship with the GI.  GI was able to connect us with others undergoing the same.  We also went to CCFA IBD Family symposium which was helpful.  No one really understands unless they have been through all of this.
3. Accommodations:  I know your son has already been accepted into college but if needs AP exams etc. then apply for accommodations thru CollegeBoard...in case he has to leave room when testing etc.

Hello-  Lengthy- so Part 1
   I have been down this road..... at times the road was bumpy +/or detours needed....but here are something that helped us.
1. Have a good, no make that great, relationship with the school nurse and guidance counselor.  I cannot say thank you enough to my son's school nurse for advocating for him and educating the school staff.   The entire staff was sensitive to what he was going through.  The college adviser was instrumental as well.
2.  Have a good relationship with the GI.  GI was able to connect us with others undergoing the same.  We also went to CCFA IBD Family symposium which was helpful.  No one really understands unless they have been through all of this.
3. Accommodations:  I know your son has already been accepted into college but if needs AP exams etc. then apply for accommodations thru CollegeBoard...in case he has to leave room when testing etc.

Hello-  Lengthy- so Part 1
   I have been down this road..... at times the road was bumpy +/or detours needed....but here are something that helped us.
1. Have a good, no make that great, relationship with the school nurse and guidance counselor.  I cannot say thank you enough to my son's school nurse for advocating for him and educating the school staff.   The entire staff was sensitive to what he was going through.  The college adviser was instrumental as well.
2.  Have a good relationship with the GI.  GI was able to connect us with others undergoing the same.  We also went to CCFA IBD Family symposium which was helpful.  No one really understands unless they have been through all of this.
3. Accommodations:  I know your son has already been accepted into college but if needs AP exams etc. then apply for accommodations thru CollegeBoard...in case he has to leave room when testing etc.

 Reply posted for Mom2djl.

Hi,

With a 504 plan your college will work with you to put your child in a dorm that he can have his own bathroom or shared with another if it is available. 

 Reply posted for Mom2djl.

I would suggest contacting the disability office of the schools he is interested in and finding out about having a 504 plan.  You will have to tell them it is new since he is newly diagnosed.  Yes, you can have a 504 in college.  This website will tell you more about a 504 but it can protect his rights in school and help with every thing from a dorm room with its own bathroom (if he needs it) to missing class for MD visits, Remicade infusions, timed testing, etc and ensure they make accommodations that he needs. 

My daughter is just in elementary school and has a 504.  But our support group leader is a high school teacher and her daughter with UC is now a sophomore in college and she is adamant about the 504s following them to school through college.

I know you have probably had a ton thrown at you and need to do some reading about 504s but I would seriously consider it!  504s don't hurt the kids, they are designed to protect them.

Let me know if I can help further and hopefully I haven't made this even more confusing!

Claire's Mom