My son diagnosed with T1D 5 weeks ago. Before diagnosis, he was disabling sick for three months and couldn’t go to school. So far he didn’t go to school for four months and back to school to learn is very hard for him while dealing with T1D. He has no 504 plan yet. I don’t know how to help him back to school now. My family live in San Diego area. I am looking for help and advice what I am supposed to do next to help him. Poor kid. Life is so hard for him, right now and future. The law says T1D should get their education, but for my son, he may lose it.
What learning options he may have, please share your opinion and advise with me.
If you have information about 504, please contact me.
@Glucosebee another member gave their email - did you contact them?
did you look at the 504 resource plan kit from the other thread? - no one clicked the link.
did you look at the ADA template? if “no” click here http://main.diabetes.org/dorg/PDFs/Advocacy/Discrimination/504-plan.pdf
Thank you, Joe. I am contacting everyone who offers emails to me and I researched all the links. I am waiting for the approval from Facebook T1D groups. Right now I want to get connected with T1D friends and their families. I talked with a friend, the district offers nothing to help the child even with 5o4 plan. Good thing is that MoM can stay home to take of the child.
My son has missed the school more than 4 months. At this point, I want to learn learning options for him and to write a 504 plan for him.
Trust me, I am doing everything I can to help him. I am the only one to handle everything. I know many Mom are doing this too. But please allow me to say it here, it isn’t easy. Time and energy, I wish I have 100 hours a day. I have to go.
Hello. My T1D 7th grader is having many problems with the school/school district as well. I would read up on the laws for your state, contact your Pediatrics diabetes resource center, get a DMMP (a plan for the school to follow for childs diabetic care), contact the schools administrated building, as they should have a administrator who deals with 504, IEP, and all other “disability” plans. Just make sure you def read up on the laws for diabetics and schools. Good Luck. I hope you get the answers you need.
Hi @joeyrichardson90 and welcome to the forum. Your reference to state laws brought something to mind: and @Glucosebee you might look into hiring a disability attorney to help you get plans in place for your children. The term “disability” is not one you want to hear or anyone wants to use, but your kids have special health needs that the school needs to know how to oversee and manage when they are there, and an attorney can help get those plans on board.
Sorry to hear about your difficulties, and hope your son is feeling better and learning more about his illness from the support offered through JDRF. Our son was diagnosed about 3 years ago at age 15, and we understand how difficult it is. Hang in there, as people may have told you, it does get better
As far as the 504 plan, for us it was more a question of talking to the school nurse, and making sure that she could store some insulin at school for our son - and maybe also the Glucagon pen or better, the baqsimi inhalable Glucagon spray https://www.baqsimi.com Use your computer to Google 504 plan California Then talking to the principal or counselor to request that during class, or a test, that they understand that a diabetic may need to check their phone or use the toilet, and that the state laws require that the T1D student be able to do that. I hope this helps. Reach out to the support group of other parents, who can help you alot.
Is your son under control as far as diabetes? How old is he? I became a diabetic at age 12 and back in 1971 we had no CGMs or anything so my elementary school years and Jr and Sr High School years were like any other kid, mainly because I only knew what my glucose was when I got home. I love knowledge but sometimes too much complicates life for kids. I did get college free because of diabetes. My only suggestion is that if he is old enough, that he learn to manage his condition better himself and not depend on anyone else or any plan. We all are different and need different things to manage our condition. That plan would do nothing for me even if I had it as a kid. It seems to key on things other people have to do. Of course all of this depends on his age.
You’re right about the additional knowledge complicating life! I was in school with diabetes the same time you were (dx in 1963). Did the urine testing in the morning, took a shot of U40 NPH or whichever long lasting was used back then, and went to school keeping the symptoms of hypos in the back of my mind just in case. The schools had instructions on what to do if I ever passed out, but I never did. The first home BG meters came out about the time I finished college so I finally had numbers to work with - and that’s when I first started MDI with shots for meals as well!
Kids have more understanding about their diabetes than their teachers and many school nurse do, but since schools are responsible for them while they are under their care, they have to have to have guidelines. Ironically the plan this school does not want to put in place is as much for their protection as the student’s - if not more - while giving him the freedom to do what he needs to do, when he needs to do it.
I agree he shouldn’t have to depend on anyone else or any plan, but as it is it’s a necessity. That said, hopefully he will learn to manage his diabetes independently and quietly so it’s not the forefront of what people use to describe him but one of many characteristics.
As an aside - what are your thoughts on 504 plans for college students? They weren’t in place when I was in college but I doubt I would have used one: if a need arose I raised my hand to step out of class (no reason given), and I could let them know my professors know aboit my diabetes if I thought it was necessary. I may have mentioned it to a few but it was rare.
When I was in college, and I never heard about 504 until this post, I didnt have glucose meters. I never had an issue likely because I was high instead of low, but I didnt have any data. I think kids are baby sat with everything way too much. It results in needy kids having to call mom and dad to know how to cook and wash their clothes as an adult. I was trained at 12 in the hospital how to give myself my insulin. A parent never did that for me. They were never even trained to do it. That would never happen today I am sure. College students should tell their room mate or class mate they sit by. Not even sure the proffesor needs to now. Maybe that is good for a small class but not an auditorium class. The people close to you should know if you act strange, get some sugar.
I graduated college in 1982. I think 504s are more recent history, a part of the ADA. When I was diagnosed at age 3 my parents had a nurse come in to give me my shot each morning until my mom was able to do it - they are no longer here to ask and I don’t remember how long that was.
I think I was in the “early double digits” before I started taking my own shots, although my mom sat close (close close close) by to make sure I measured my dosage correctly - with a syringe and bottle. I was pleasantly surprised to read about kids taking their own shots at an earlier age.
I went to a small college and my largest class may have had 20 people in it - no auditoriums for me. I did infirm my roommates. Choosing to tell professors was something I did if I thought the occasion warranted it, but if course it’s the individual’s choice how much if anything to share.
I’m enjoying reminiscing with you!
The principal of the school is usually the 504 administrator, or someone he or she delegates. You need to get documentation of the diagnosis from an MD, then meet with the 504 administrator. The school needs a full-time nurse. Our town allocated extra money for this when my T1D child entered kindergarten, but I was fortunate in being able to meet with the school before school started.
My kid was on a pump but school years were before CGM’s and cell phones became common during high school years. The school nurse checked my child every hour and called me for instructions. Later, they gave my child a cell phone to call me. School nurses can follow an algorithm supplied by a doctor but my child’s blood sugars were too variable and nurses could not make the decisions I could.
I had to go to gym, sports games, and field trips to keep my kid safe. A CGM and cell phone would have helped with these things. Glucose tabs are a must as is glucagon.
I would not expect a child to care for themselves until around age 14.
Accommodations should include excused absences or tardiness, extra time for diabetes tasks whenever a test is timed, and when a child is absent, work should be packaged and sent home. My kid was home for a few months with another health issue and the school packaged work from every teacher every day so she could keep up. Tutors are available.
Your son has already been ill-served if he has been at home with no tutoring.
At one point I did meet with an education lawyer. It cost $150 at the time. I went to a meeting with the school with a smile on my face and mentioned the “helpful suggestions from the lawyer” and things went smoothly after that. I never had to pay for the lawyer to come to a meeting.
Make sure there is adequate nursing staff to keep your son’s control tight and to handle emergencies. Tight control is necessary for learning. It is a legal right.
There is a group at Facebook 594-Diabetes with some recognized experts.
Thank you for your information. I read every post carefully with my heart being warmed by your caring. Sometimes I am struggling with my capability to express my thoughts and feelings in English, so I get quite delayed to reply. English isn’t my first language, sometimes it does get in my way to fast absorb the information. But I always come back to check the posts here and encouraged by the people taking time to share. Thank you!
Hi @Glucosebee . It’s nice to hear from you - it’s been a while. How is your son? I hope you’ll keep us posted on how he is doing.
By the way, your English is very good - you’re communicating extremely well.
@Glucosebee , your English usage is wonderful.
Several translation apps do a good job. Write you post in both your native language & English. Writing in both will give all of us opportunity to be accepting of a global community members like you.
My son just finished 7h grade and our endocrinologist helped begin the process of the 504. She gave us papers that specified insulin/carb ratios, and basic info regarding treatment of highs and lows. I took that info to the school and met with his teachers, the school nurse, and the person over the 504. During the meeting I used it as a way to teach all those folks, because with the exception of the school nurse, none of them knew much about t1d.
A couple of things to be sure gets added to your 504 plan: extra bathroom privileges, water and snacks in easy, quick access to your child. A glucose pen and a trained school bus driver (if your child rides the bus), as well as teachers just in case it’s needed. And probably the most important one for us was for my son to be allowed to keep his cell phone, even during State testing since he has a GCM (Dexcom 6). I also requested for the plan to state he was allowed to communicate with me in the event changes to carb ratios were needed prior to lunch or for high/low treatment. Even with all this in place, there were several times I had to call the school nurse and assist with treating lows, especially at the end of the year when the teachers let the kids go outside to play. I’m not sure how it is in other districts, but here they pretty much stop teaching after the end of year State tests are over. My son’s schedule was gym class, lunch, then outside to play which resulted in lows almost daily. We tried lowering basal rates, juice prior to going outside, increasing carbs at lunch and not counting them…and still he dropped low. Then on some days they wouldn’t go outside and he wound up high all afternoon. I’m hoping next school year will be better. I wish you the best!
Hi @WarriorMom13 . I just wanted to add, there’s more an inhaled form of glucose available now, called Baqsimi. It sounds line is easier to administer than the injections and might be an alternative. I don’t know if any age restrictions of any cautions so I just wanted to give you the name so you can look it up if you like.
It’s been mentioned on the forum a few times so you might find some first-hand experiences.
Thanks wadawabbit! I will definitely check that out! Anything to lesson the needles sticks would be great!