momburchx2
New member
While I am waiting for Sam to take his first sweat test I have been reading all of your post and they are inspiring. I am hoping that I can make a difference now. I am currently and educational consultant with Richmond Health education program. We have cunsultants in many clinics that work with terminially or chronically ill children. These consultants go to the school to help write 504 plans and health plans. I am currently at a clinic that just deals with school issues not health. I would like to present an inservice on what parents need and want from an educatational consultant and from the teachers at the hospital. Somethimes it helps when we hear it from a parents perspective. Please give me your good and bad stories of school and long term hospital stays. (We also have teachers that work with the patients to keep them up on school work). So here are my questions.
1. Does your clinic provide someone to help with your school issues such as how CF will affect their school day.
2. If not how would you like someone to assist you?
3. When your child is in the hospital for an extended stay how do you feel about schooling? Are you more concerned with health and want to forget the school work or do you want to keep them up with with the curriculum?
4. What has been your biggest hurdle when dealing with the school system?
5. Anything else that will assist me in creating this presentation. I want to share what you the parents are going through and need. Give me the good the bad and the ugly of school with a chronically ill child. I want to share your experiences so that maybe we can help someone else.
Post or private email. I will not use names or specific stories unless I have your permission. I just want to help others out there like you all have helped me.
9 more days untill our first sweat test, I am getting nervous all over again but know I can face anything with the support from friends. Thank you and no matter what the results I know now I need to step up and make a difference.
1. Does your clinic provide someone to help with your school issues such as how CF will affect their school day.
2. If not how would you like someone to assist you?
3. When your child is in the hospital for an extended stay how do you feel about schooling? Are you more concerned with health and want to forget the school work or do you want to keep them up with with the curriculum?
4. What has been your biggest hurdle when dealing with the school system?
5. Anything else that will assist me in creating this presentation. I want to share what you the parents are going through and need. Give me the good the bad and the ugly of school with a chronically ill child. I want to share your experiences so that maybe we can help someone else.
Post or private email. I will not use names or specific stories unless I have your permission. I just want to help others out there like you all have helped me.
9 more days untill our first sweat test, I am getting nervous all over again but know I can face anything with the support from friends. Thank you and no matter what the results I know now I need to step up and make a difference.