I had the opportunity to speak with the EC from our Endo's office today. After 30 minutes on the phone with her, we've come to the conclusion that we need to have another meeting to make some changes to her current 504 Plan. When this plan was set in place back in October, Kacey was still seeking care at the nurse's office and she was on injections. Since she is now doing most of her care on her own in the classroom and she is on a pump, we need to make some changes. Many of these changes include new items that were not included before.
For those parents that have children in school or have children about to start school, that do not have a 504 Plan, make one! Even if they are only in Kindergarten, there are still things this plan should include. Anytime during the year you have the option to make changes to it as your child changes. Also, when they get into higher grades and they start taking those state tests, you are going to wish you had it! You can have the most gifted student in the world, and they still have problems when their blood sugars go haywire. As I stated before, Kacey went from A's to A's & B's to now having 2 C's and it's not anything she could control. The 504's help you with those needs your child will have.
A great way to start is to view some sample 504 Plans. I found a wonderful example ... HERE. You can look over it and then ask yourself, what part of that 504 Plan will my child need?
There are certain things that are a must like:
~ Unlimited bathroom breaks
~ Unlimited water breaks
~ Snacks available for lows
~ No physical activity if BG is over 300 with ketones
~ Escort to nurse if BG is low
~ No punishment for absences due to illness & doctor appts.
~ Treatment of highs/lows
~ Emergency protocol- Administer glucagon, call 911, call emergency contact #1 if #1 can't be reached, call #2
Other things like the following are questions you should ask yourself:
~ At what numbers should my child NOT take a test?
Our Endo suggests if she is below 80 or above 250 she should not be taking the test.
~When your child takes state tests, how will they be given? On the computer? On paper? Will your child be given more time to complete them? Will they be given over several days and broke up into a certain number of questions?
When we had our meeting, the counselor suggested Kacey be allowed to take the tests on paper. This would eliminate the computer and having to scroll to read. She could also use a highlighter to mark portions of the question or paragraph that she needed to remember. She's also be able to X out any answers she knew were not right to use "process of elimination" for the answer. There is no time limit for the test either. Also, her test will be broken down into parts. She will test her blood sugar before the first part. If she is high then she doesn't take the test. If she is in range, then she starts the test. Once she finishes, she has the option to test again before moving on. If she is high then she will not move on and I will come and get her from school and she will continue the next day with the next section. If she feels fine, then she moves on to the next section. This continues until she's completed the test. Her teacher said this is a great way for her to test and she won't be so overwhelmed. Hopefully things work out and she will stay in range and feel well enough to get through the testing.
~ When your child's pump alarms, what is the protocol?
We didn't have this set and when Kacey's pump alarmed the other day, she didn't know what to do. From now on, when it alarms and she doesn't know what it is, then she goes directly to the nurse (not running around the building to find me) and the nurse has a copy of all 50 alarms right out of the pump manual. So she can take care of the problem and call me on my cell in the meantime.
~ If your child doesn't complete classwork, should they miss recess?
I didn't realize that Kacey was missing recess as much as she was until I asked her about it. Her recess time is right after lunch. So she was leaving lunch and going to sit back down to do work she didn't complete in the morning. I have a problem with this because she NEEDS that recess to bring down those highs. She would go do the work and then by the time she completed it and got out to the playground, she'd have 5 min to run around or the class was lining up to come in. So this will need to be addressed as well. Work she doesn't complete in class can be sent home for homework instead of making her miss recess.
~ Who will go on fieldtrips with your child? You? The school nurse? Someone else?
This was something we decided at the beginning of the year. I go on all the trips when they leave school no matter what they are. I ride the bus and I'm with Kacey's group the entire time.
~ What level of self-care does your child do?
- Can they do their own BG tests?
- Can they do their own shots or dose themselves on the insulin pump?
- Can they figure their own doses?
- Can they carb count?
- Can they treat mild hyperglycemia with the pump or a shot?
- Can they treat mild hypoglycemia with a snack or glucose tabs/juice box?
- Can they check their own ketones and read the results?
~ Who will adminster the glucagon? Who will be trained to use it? Where will it be stored?
Right now, the school nurse & Kacey's teacher are trained to use it. I have one stored in the nurse and one in the classroom. But this got me thinking because if she is out on the playground when she passes out, what will they do? Her classroom and the nurses office are on the furthest side of the school. They would have to run in, grab the kit, run back out and administer it. Thats TOO much wasted time! So, either Kacey needs to carry it on her at all times in her purse or the teacher needs to take it out to recess when they go.
~ Where will the BG testing and dosing be done?
Originally Kacey was doing everything at the nurse. As she got the hang of how to do it all, we moved everything to the classroom because Kacey was missing 10-15min of class each time she went to test. If she is high or low, then she calls me from the teachers cell phone in the classroom and gets instruction for how to treat. Eventually, I will get her a cell phone that you buy minutes for that she can carry with her at all times and she will have permission to use that phone ONLY for diabetes emergencies. This is something I will probably get her before the start of school this fall. She will be in 4th grade and she will be changing classes again like she does now and I can't expect the teacher to let her use their personal phone each time she needs me.
~Where will the diabetes supplies be kept?
Once again, when Kacey was testing in the nurse's office, we kept everything in there. We moved her supplies to the classroom a few weeks before she started pumping. When she started her pump, I got her a small purse to carry with her anywhere in the school. In the purse is her test strips, an extra meter, lancet, alcohol pads, bandaid, spare battery & a quarter to open the battery cap, cartridge, infusion set, glucose tabs, 3 packs of Splenda, 4 foiled ketostix (with the chart to read them) and $3.00 (just in case she needs more water or snacks)
~ Will your child receive shorter assignments that cover the material that was taught?
While talking to the EC, she brought up an interesting point. Many times people think because a child is classified as "gifted", they should be able to do triple the workload of a normal child. Most of the time, they can but the whole purpose of being classified as gifted, is not to do triple the workload of the grade level. It is sopposed to be work designed to challenge their ability. So give them the workload of a normal class but above grade level. She said that if Kacey is gifted in Math, then instead of giving her a sheet of 50 problems, give her a sheet of 10. If she can do those 10 and get 100% then she can do 50 because she obviously knows the material. So you lessen the workload, test her and see that she knows the material and move on. She's so right!
I know more things will come up as we get into higher grade levels but this covers the basics. Your child may need other services that are not covered here or in the sample 504 Plans. Every child is different and they require different services but it is your responsibility to be an advocate for your child and be sure they get the services they need :) I'm looking forward to meeting the EC and meeting with everyone again to make these changes to the 504.
I also didn't go into detail about this before, but Kacey's CDE suggested that she wear a CGMS for a week. This would help them better understand what is happening during the day with her numbers. Her CDE recommended Dexcom. I didn't know much about any of the CGMS so I went on and read about them. I really think this would be useful in helping us determine what changes need to be made to keep her in range during school. When I mentioned it to Kacey, she immediately said "No!" but then after talking to her about it and explaining that this would help us get her numbers in better control and it would also help us show the right people that she is staying high while she is at school. She then smiled and asked if we could take pictures of it? LOL! She's so much like me sometimes ;) So stay tuned for our experince with the CGMS if it is approved by her Endo for her to wear it for a week.
Once again, thanks to everyone that has been on this bumpy rollercoaster with us and for those of you just getting on the ride....hold on tight! ;)