Supporting Adults with Down Syndrome and Ileostomy

Hi I'm new to this forum and I hope you can help.



My son is 21. He has Down syndrome and an ileostomy. In June he will be graduating from high school. His future is filled with opportunities for jobs and community activities. He needs to learn how to change and patch his wafer, so he can pursue these. I would like a professional or paraprofessional to teach him how to manage his ostomy. The training should be provided by a male, in a variety of environments so that he learns to deal with his ostomy in many environments.



Do you know of any organizations or other message boards I should contact to find some help? How do parents prepare their student with cognitive delays and ostomies for adulthood?



If you know of any training materials on how to manage the ostomy that is geared toward people with cognitive delays, would you please share them?



Have you had success receiving support for ostomy care through Medicaid Waiver Programs? If so, how did you make this happen?



Thank you for all your ideas.



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Their is a nurse that works at the lebanon pa veterans hospital look up the phone number and ask to speak to their ostomy nurse i believe her name is susan Brown if not just ask to speak to ostomy care nurse she was paramount in helping me out mabe she can point you in the right direction

please keep me posted on if this was helpfull 2 heads are better than one

Good Heavens, I can't believe you only had 2 replies!  Hit the internet, maybe even the phone book, for Ostomy Association.  I know the ostomy supply shops have flyers for them.  There are local chapters all over where folks meet for support and information.  Somewhere there must be some guy ostomy savvy nurse or guy WITH an ileostomy who is able to coach your son.  I could myself if I were near.  I'm not shy about my "plastic guts" anymore but I can still relate to one who might be.  I have even made up a photographic procedure of myself so others can do what I do now when I get too old or ill to do it myself.  Courage to you.