I have been asking for a iep plan since August. No Iep plan was given to my daughter. My daughters doctor also gave me the website on ADA for a 504 plan since December 07. I notified the sdchool and gave it to the district. They are refusing to give me either of these plans. I am dealing with the school councelor and principal and i am not getting any where with this school. They said that it is their decision if my daughter needs a 504 plan which is not true because Valley childrens hospital suggests the importance of it and it the law that these children receive one. So not only that the teacher does not want to be involved with this situation on the medical side. Last week the principal said that my daughter has to switch classes or she will be holding her back. Which i took threatning because i told them no that my daughter does not want to switch classes. There is just tio many issues going on so i reported it to AREA 8 board which assists in areas of discrimination and contacts the school. Also now there is going to be an advocate to attend my daughters appt in End of Jan to advocate the importance of an IEp and 504. So this is what it takes to cooperate with a plan for my daughter? Then i guess thats great that we now have the resources for this area and discrimination for our children. I live in a very small town and i know they are not up on their resources but what bothers me the most is the uncooperation and discrimination given to my daughter. The last thing is the teachers involvement with this is just awfull that she would rather transfer my daughter off to another teacher so she wont have to deal with the situation. SO im left at should i switch her teachers or go all the way with this complaint and hopefully the teachers and staff cooperate?  

Andrea- you have touched on a subject that is very near and dear to my heart!!  I am a former teacher, principal and superintendent with a son who was diagnosed as a juvenile diabetic when he was a 7th grader.  And my wife is a type 1 diabetic, as was my father.  So I have been a clear caregiver to family for over 40 years.

Even when I was superintendent of schools, I was shocked at how ignorant my son's faculty was about diabetes, and how often they unintentionally said and did things that embarrassed him and made him feel "different".  But it wasn't intentional and our public schools by and large do a lousy job with understanding this disease.

Here is what you need to do.  1)  Make an appointment with the principal, teacher, guidance counselor and school nurse- demand a meeting.  Don't be ugly about it but be persistent.  2)  Tell them you are here to create a written agreement about how your child's disease will be handled appropriately, and write down and give to them a list of your issues, examples, and concerns, and go through each one of them in detail.  3)  Collect the responses to each of your concerns, write them up the way you think you heard the resolution, and send each of the conference attendees a copy of the written document.  4)  When something happens in the future that violates the agreement, very cooly and calmly show them the written agreement, etc.  If the problems persist absolutely make an appointment to see the superintendent or assistant superintendent at the central level and show them all of your documentation.

Here is the point- you are in this "battle" for the long haul, and you are probably educating the staff as you go about this disease.  For your child to be treated appropriately it is not about one specific incident, it is about the number of years your child will be in school.  So go at this for the long haul and try and understand the staff doesn't likely know any better- and your going to educate them.

Hope this helps.  Just remember, your child is not alone.  We have been there and they do thrive even with the disease.  Your role is crucial so good luck.

Hello,

My son has been living with type 1 diabetes for 10 yrs.  He is now 13 and in 7th grade.

Because this is a "hidden or invisible" disease we have to fight harder for our children's rights.  I feel for you because I understand.

Please email me for support.

sherifaith@cox.net

Sincerely,
Sheri

I am sorry to hear how your child is already being discriminated against bec/ she has an "invisible disease".  I am 35+; diagnosed w/ Crohn's disease (after 3 yrs of not knowing what was wrong) at age 16-17.  I have been treated my entire life w/ the invisible disease discrimination.  The worse of it WAS in non-post-secondary education school systems. However, I did have a insightful doctor that wrote a very short note that basically stated, "Should the need arise, due to the nature of my illness, [I] may need to leave school without notice.  [Myself &/or parent's] would notify the office of the nature of my absence by the next school day."  He used his letterhead and his signature at the bottom.  I found myself in some very unfamiliar territory at times with my body during puberty and am so glad that letter was in place for me during my "bad days".  W/o that letter, in spite of a 94.456 school GPA, I could have missed my high school graduation & accolades that went with it.  For some reason, when it comes to something that is unfamiliar territory, Administratives love to pull out the rule book.  You will need to know how to advocate for your child's specific disease by having a letter from your child's specialist in place (however, if you do not want to make a big deal about, just have the school counselor file the letters, delivered via your child if possible), have a note written from yourself as to your child's specific academic weaknesses, things that cause her condition stress, when she will need to be sent to the school nurse for potential rest/called home, etc; then, as each school year starts, literally, have a "handbook" made up for each teacher of your child's - because bottom line, the teacher's are so busy these days, if it didn't get to them from you - they may not know it or remember it.  Therefore, describe her Meyer's-Brigg's personality (personalitypages.com, I believe, where you can do you own child's even), what their typical behavior is, what social struggles they face, things you will find the teacher should expect to see from her (such as, she is a great reader, but needs re-enforced math skills), things she knows to avoid, things for the teacher to watch out for (i.e., they will read - be responsible for), and how you would like to be available to them should any questions arise. Usually, most teacher's appreciate having a general handbook about their student's and what to expect from them and the best way to motivate their student's instead of figuring it out, when there are special exceptions to a child (gifted, illness, death of an immediate family member, etc); therefore they can begin to mediate with you from day ONE.  Then, try to work off of your child's most resent scores from the last state test (that you will have to get from the principal) and literally sit down and figure out an alternative learning plan to be put "in place" for the days your daughter misses school or will need to leave early for an appointment.  If you can give your teacher sufficient notice for when she will miss, then you are already functioning w/i 504 - you just aren't asking permission to do it!  It is your right as her parent!!!  I'd like to recommend a few sites to help you on your journey:  http://www.schoolhealth.org;  http://www.nationalguidelines.org;  http://kids.lovetoknow.com;  www.academic.org;  www.ed.gov/pubs/parents/Math/;  www.kidsource.com;  http://www.solution-tree.com;  I hope each of these sites can help you with information or links to information to help you build an alternative source for what your daughter may not have gotten in school this past year, help you to get caught up on what grades teach what topics to help you be informed when you need to supplement her education bec/ the teacher may not have gotten work together for you - you can go by the weekly syllabus and make something up yourself!  Also, these sights are also great for what you should expect/ or what the guidelines are in the U.S. schools regarding health, etc.  Therefore, try becoming the school nurse's friend!!!  Good Luck.  I hope something out of all of this helps.  One great thing about being diagnosed young with an illness, there is no other 'normal', so do not allow pity parties and help your girl to see how to cope with strength, faith, reality, love, examples you approve of, what you expect of her regardless of her 'physical' condition, and help her to find a way to take extra time to care for herself, wind down, and sleep a little extra than the norm and she will blossom just fine!  If it helps you to know, I went on to get my Master's in Biochemistry/Molecular Biology and have started a Molecular Lab for a branch of the CDC (several years ago) and now work as a consultant while I raise my own child!  I did everything I wanted to do in the time that I've had so far, have few regrets, and appreciate what I have because of my health.  For as many 'bad things' have happened from having health problems, equally good things have replaced the bad and have given me wisdom I would have never otherwise had.  Everything seems to have a reason behind it -  sometimes it takes years for that reason to materialize. Good Luck and Bless you.