Tuesday, April 28, 2009
Now... a really neat story to share....
Today I worked half a day in Kindergarten and then the second half of the day was spent volunteering at RIF. RIF stands for Reading Is Fundamental and it is a program our school has a few times a year. Every child in the school gets a free book of their choice. It's a great time for kids that don't have access to many books to get a chance to choose a book to keep and take home and read. This was my first time ever helping out with RIF because each year when it comes around, I've always had something going on and couldn't volunteer.
While I was in the library, I was sitting at a table with other Mom's that were also helping out. While the kids were choosing their books, one of the Mom's had to take a cell phone call from her son. I heard her say "Ok, well give yourself 5.5". Now to anyone else, that wouldn't mean anything but something about those words rang close to home for me. That language that only a parent of a diabetic child would understand. I wasn't about to ask because it would have been rude. I figured if her son had diabetes, then it would be mentioned during conversation while we all talked about our kids. So we're sitting there and I ended up getting a call to work a few more sub jobs and I was putting them into my calendar and color coding everything. One of the other Moms mentioned my days and I said "I have to keep them straight with colors because my daughter had doctor's appts too." Mrs. W's ears perked up and she said "Does she have a lot of appts?" I said "Well no, but she's got type 1 diabetes and we have a few coming up." It was like fireworks going off! She immediately bursted and said "My son has diabetes too! Thats who I was talking to!" I can't even begin to explain the joy I felt having someone sitting in front of me with a son going through the same thing. There was am immediate connection and it felt wonderful being able to speak the "diabetes language" that so many others don't understand. Her son, DW, is 12 now and was diagnosed at 8 (just like Kacey!) and he is still on shots. We exchanged information and we are definately going to get together and have lunch! I love the D-OC but it was something really cool about sitting face to face with another Mommy that KNOWS how difficult this disease is. They haven't gotten to the pump stage yet but you know how God puts you where you need to be at just the right times? Could Kacey be DW's encouragement to show him that pumps are not scary and they are much easier than shots? Could D be the "big brother" type to Kacey? I was so excited and I've been smiling all afternoon to finally be connected with another Mom that I can talk to. I know he is 3 years older than Kacey but I really do believe that when kids like this are put together they can learn so much from one another. I immediately thought about my other nurse friend with the son that is 13 and T1. He'd be a great role model for DW and they are about the same age. One more reason for me to really push this support group off the ground and I'm hoping that I found a partner to do that with! Anyway, I had to share this story because I was so happy about meeting her :)
Monday, April 27, 2009
As for the pool.... when we came home from school today, that's the first thing she wanted to do. It was 90F here again and she wanted to splash around. We agreed that she would only disconnect for an hour. Her blood sugar was 116 and we went out to splash. Within 30min she was a 75 so I think I should have made her eat one glucose tab before we went out. It was time for dinner anyway so we just came inside to eat. I had offered juice but she said she would get "sugar sick" if she drank that and it was hot outside. So we still have some work to do when it comes to the pool but we'll get there! :)
Sunday, April 26, 2009
We've also had a few more "firsts".
1. This is the first time we've had to deal with Herbie in the mix of a water day.
2. This is the first time we've used the "Disconnect" feature.
3. This is the first time we've dealt with swimming causing a low.
I had to refresh my brain from class about how to use the disconnect feature. When Kacey gets a bath, we just disconnect and she's only in the tub about 15min so we don't use that feature. Today, I knew we'd be outside for a little while so we set the pump to disconnect for 2 hours. After about an hour and a half of bouncing between swimming and running through the sprinkler, I told Kacey I thought she needed to test so we could be sure she wasn't going too high. Ummm..."Mommy Moronic Moment"...she won't go high because she is playing!! So she tests anyway ... 63 ....and she wasn't feeling a thing! So she stayed out of the water and we came inside to get something to eat. We decided to stay in and rest for a bit because once she was inside she started to feel the low. This is going to be a learning curve for us. It's going to take us some time to get used to dealing with Herbie & water days.
If any of you have any suggestions for water days, then I'd love them!
I thought Kacey would have a hard time dealing with being pulled away from the water but she did really well. She makes me so proud sometimes because during the times when she can't be "just a kid", she handles herself so mature. I did take a few minutes to smile because right after she disconnected, she took off running through the sprinkler and for once, diabetes didn't exist. Her BG was a 183, she had a smile on her face and she was being a kid! It's times like that that my heart feels so good :)
Saturday, April 25, 2009
Friday, April 24, 2009
I got an email today and I'm trying to figure out if it's a hoax or not? If it's not a hoax then I am extremely honored to have been selected to have my blog featured over there. I'm always so leary of things when I get them in email and this has come through as a legit email but I'm still keeping it in the red flag spot until I find out more about this website.
When I first began my blog last July, it was my way to vent. I had no intentions of anyone ever reading it. As I began to find more people going through what I was, I began to post to other blogs and before I knew it, I'd made friends to last a lifetime. I never in a million years thought I would be selected as a featured blogger and recognized as a Top Health Blogger. In my eyes, I'm not a Top Health Blogger, I'm just a Mom with a daughter living with diabetes, in search of other parents going through the same thing I am and seeking advice and support from other people living with diabetes. So you can imagine my shock when I received this long detailed email inviting me.
Does anyone have anything to say about the website, good or bad?
Has anyone done this and does anyone know a cheap way to do this?
Paw Pride (clap, clap, clap)
Paw Pride (clap, clap, clap)
We've got Paw Pride! (scream & clap)
(Kacey's school cheer)
School cheers and spirit assemblies bring back such wonderful memories for me. This afternoon, I had the chance to participate in the assembly as a teacher, not just a parent. I taught 1st grade today and we had so much fun. The kids were wonderful and they got all their work done (and then some!) We were already seated in the auditorium when Kacey's class came in. She waved and then sat down. I had no idea what her blood sugar was but I figured with all the excitement she was hovering high....WRONG! When everything was over, I went to get her and she sat down on the bench by the main office with this exhausted look on her face. "Kacey? Whats wrong?" She went on to tell me that she tested before they went in the assembly and she was an 80. She felt low during the assembly and she tested again and she was a 91. I took her hand and started walking to the car with her. She was dragging her feet and said she felt much lower than Herbie said she was. When we got to the car, I had her test again. She looks at me with a grumpy look and says "Herbie says I'm 85 but I feel lower Mom! I think Herbie is wrong this time." ***pause*** Ok, so could Herbie be wrong? Let's take Pink Flash out and see what she says? (Pink Flash is the extra Freestyle Flash meter she carries in her purse that has a pink skin) She tests with Pink Flash and she looks at me and says "I told you Herbie was wrong! Pink Flash says I am a 79!" So she has a snack to hold her over til we get home. Wow! I trusted Herbie to be dead on and he's off today. With this low came complete exhaustion and very tired. No sweats or shakies but she's got the urge to sleep. She's resting quietly in her bed with a movie for now.
I also have the date for my meeting set up. We will meet on May 7th at 2:30pm and the EC will be at the meeting :) I'll keep you all posted and help as much as I can with giving you info on what to include in your 504's.
Thursday, April 23, 2009
I've posted about her purse she carries and I've shared pics of this cute little polka dotted diabetes purse. Her teacher informed me that Kacey has started a trend in the classroom and a couple of the other girls in class have started bringing the same kind of across-the-shoulder purses. LOL! I asked Kacey about it this evening and she said the girls think it's cool that she carries a purse around school and so they brought theirs to school too.
So what exactly were in their purses?
Kacey's contains diabetes supplies.
Girl #1~ tissues and bandaids (just in case Kacey's finger bleeds too much)
Girl #2~ Lip gloss, tissues and a mirror
Both of these girls are Kacey's friends, one closer than the other. I thought it was really neat how they started doing this without anyone telling them to. Once again, it's proof that even if you feel like the "oddball", it only takes one person (in this case, two) to make you feel like you aren't so odd! And also proof that one "oddball" can start a trend and not even know they're doing it :)
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! ;)
Wednesday, April 22, 2009
Tuesday, April 21, 2009
Here is mine:
1. Poker Face- Lady GaGa
2. I Keep Coming Back- Josh Gracin
3. Why?- Jason Aldean
4. All American Girl- Carrie Underwood
5. Fearless- Taylor Swift
6. I Loved Her First- Heartland
7. This Is My Now- Jordin Sparks
8. My Life Would Suck Without You- Kelly Clarkson (My fav song right now!)
9. Angel- Shaggy
10. Goodbye My Lover- James Blunt
11. What About Now- Daughtry
12. In The Ayer- Flo Rida
13. Mad- Ne-Yo
14. Better In Time- Leona Lewis
15. Disturbia- Rhianna
16. Single Ladies- Beyonce
17. Right Now- Akon
18. Realize- Colbie Caillat
19. Forever My Friend- Ray LaMontagne
20. It Happens- Sugarland
21. Marry Me- Ed Cash
22. Better Together- Jack Johnson
23. Kiss A Girl- Keith Urban
24. Lips of an Angel- Hinder
25. Taste- Josh Abbott Band
I could go on but I'll stop at 25 LOL! This was fun Cara :) As you can see, my music taste ranges as well! (Btw, I do have NKOTB on my iPod but they never came up in the shuffle...hahaha!)
I was substitute teaching today and during one part of my day, I monitor the kids that do something called "Walk & Talk". After lunch, the kids go outside and walk around the parking lot in a designated area and talk with their friends. During Walk & Talk today, a little girl in 2nd grade that knows Kacey came up to me and this is how the conversation went:
Little Girl: "Hi Mrs. West! How is Kacey feeling today?"
Me: "Kacey is having a good day and she's feeling good, thanks for asking!"
Little Girl: "So that means she doesn't have to wear her box anymore?"
***pause*** (Jill, don't cry...don't get choked up either) ***breathe***
Me: "No, (**smile**) That means she is having a good day and she isn't sick.
Little Girl: "But doesn't she wear the box because she is sick?"
(crap! how do you explain to a 2nd grader without going into detail)
Me: "No she wears her insulin pump to keep her from getting so sick"
Little Girl: (with a shocked face) "So she can never take it off?"
Me: "Yes she can take it off for a little while but then she connects it back on so she doesn't get sick. It helps her feel good."
Little Girl: "I'm glad she has a box to make her feel good. I don't have a box when I feel bad....my Mommy just tells me to lay down."
Me: "Well, you don't have diabetes and thats why Kacey wears the box."
Little Girl: "I don't want to wear a box."
Me: "I don't want you to have to wear a box either!"
****teacher calls***** LINE UP!
Whew! Saved by the teacher :) (instead of the bell)
It really made me think though and it tugged at my heart strings. Kids are so curious and when you answer in terms they can understand then it takes all of the curiosity out of it. The little girl now knows that Kacey wears her "box" so she can feel good....she doesn't wear it because she is "sick".
Monday, April 20, 2009
Today's meeting was a success. I met with Kacey's teacher, nurse, both principals and the school guidance counselor. As a group, we looked over Kacey's blood sugars and talked about her performance in the classroom. We also discussed the upcoming SOL tests and how we planned to help her though them as best as we could. I also talked about her pump and some of the alarms that need to be watched. Everyone was so caring and compassionate. I held my composure until I had to talk about how frustrating it is to manage diabetes. I ended up in tears trying to explain how I hate the fact that I can't know what she is feeling. They all agreed that we really don't know what Kacey is feeling but we CAN make the accomodations for her. The principal did bring up the fact that Kacey is in a gifted class because last year she was doing gifted work but all of this seems to have caught up with her and so I agreed that maybe her placement for next year should be in a slower pace class. This will take off some of the pressure that she is feeling to complete more work in a shorter amount of time.
She got her report card today....
Not as bad as I thought it was but like her principal stated....those C's are in the gifted class.
So where do we go from here?
Our next step is calling the Educational Consulant for Kacey's Endo office. I gave them the card that was given to me at our last appointment. We will make an appointment for a meeting with the EC and she can give us suggestions on what we can do. This is a learning process for our school because Kacey is the first child with diabetes to come through there and need the help. There has only been one other boy with diabetes that was in our school and his parents managed his care, not the school. This is not something they are used to dealing with. So I have to be patient and I am confident they are going to look out for Kacey's best interest and help her get through this difficult time. They are going to make some special arrangements for her during the SOL testing. The first one being, she will NOT have to test on the computer. She will get her test on paper. This will allow her to highlight with a marker and write on the test instead of having to do everything in her head. She will be in with her teacher during the testing and her test will be broken up into parts. After each part, if she's not feeling well or her blood sugar is too high, then they will not move on to the next part. Her teacher also suggested that on testing days, once the test was over, I take her home. This way she can physically rest after the test and she won't have to do any other work the rest of the day.
She is going to be just fine and eventually we will get this whole diabetes thing under our belt and the teachers will be pro's at suspecting highs and lows. I really am lucky to have Kacey in a school that is willing to work with me, her doc office and anyone else that can shed light on how difficult diabetes can be for a child.
Sunday, April 19, 2009
Sat- 134, 144, 145, 125, 75, 73, 98, 109, 88
The 75 and 73 she had made her very sweaty and she had dizzy spells. The feeling dizzy is what caused her to check and see if she was low.
Sun- 105, 135, 140, 53 (287 after 15min and 3 glucose tabs), 91, 161, 116, 182
The 53 that she has made her dizzy and she got very tired. She was out riding her bike and she felt dizzy and asked Kayleigh to help her in the house. She got the scared feeling and ended up eating 3 glucose tabs instead of 2. She bumped up to the 287 but quickly fell back to a 91 within the hour. Shes been in a great mood all day and that really makes things easy on all of us.
It's back to school tomorrow and with that comes the highs again. I've already emailed her logbook to her CDE so hopefully she'll take a look at those numbers and we can make some basal adjustments for the time she is at school. This is the first time I've used the Cozmo software for her logbook and it's wayyyyyyy cool! I got a little slack the last 2 days with logging because I knew I was going to try the logbook. The only hard part is getting used to viewing it backwards from the way I've been logging it the last 9 months. I ended up transferring all the numbers to one of the logsheets I've been using so I could see her numbers better. This also helps me when I'm circling the high's in red and highlighting the lows. It is one page vs. six pages. It's a great program though :) The best part about all of this....no calculator!!
My meeting is tomorrow and I'm a bit nervous. Not sure why? I'll update once I get home :)
Friday, April 17, 2009
Let's hope this is a great start for the weekend!
Meeting on Monday :)
Thursday, April 16, 2009
(To read the full article)
When are children with diabetes covered by IDEA?
To receive services under IDEA, a child with diabetes must show that he or she needs special education and related services in order to benefit from an education. An evaluation of the child must show that, because of the child's diabetes (or other qualifying disability) the child has limited strength, vitality, or alertness that adversely affects the child's educational performance. Simply put, the diabetes must make it more difficult for the child to learn.
For example, it is often difficult to learn when blood sugar levels are either too high or too low. If a child with diabetes is having difficulty controlling his or her blood sugar level, this may hurt how well the child does in school. Classwork might also suffer if a child with diabetes misses a significant amount of classroom instruction each day in order to test his or her blood sugar level.
What is the process for deciding whether a child qualifies under IDEA?
In order to decide if a child qualifies for services under IDEA, a full initial evaluation of the child is conducted by qualified professionals. The child must be assessed in all areas related to the suspected disability, including areas such as social and emotional status, general intelligence, academic performance, communicative status, and motor abilities. To start this evaluation process, contact your principal or the school district's coordinator for special education and disability issues. In some school districts when you request that your child be evaluated under Section 504 of the Rehabilitation Act of 1973, the school may automatically seek to evaluate the child under IDEA. However, parents must consent to evaluation under IDEA.
Parents have the right to an independent educational evaluation at public expense if they disagree with an evaluation obtained by their school district.
What help does a child receive under IDEA?
To qualify under IDEA a child must be found to need "special education." Under IDEA, "special education" means a specially designed instruction program that meets the unique needs of a child with a disability. This means adapting what is taught and how it is taught in order to address the child's unique needs. The child must have access to the same general curriculum (or coursework) so that the child can meet the same educational standards (tests, and other measurements used to pass children from grade to grade) that apply to all children in that school district.
For example, a child with diabetes might need a tutor or a classroom aide to help the child catch up with missed schoolwork.
In addition to special education, a child who qualifies for special education under IDEA is also entitled to "related services" if needed to help the child benefit from special education. Related services include such things as school health services, transportation, psychological services, therapeutic recreation, rehabilitation counseling, medical services for diagnostic or evaluation purposes, occupational therapy and physical therapy, social work services in schools, and parent counseling and training.
For example, a child with diabetes requires that there be trained staff available at all times who are knowledgeable about diabetes and the child's specific plan for diabetes care. Such staff must know how to recognize and treat high and low blood sugar levels. Younger children may require assistance in blood glucose testing and administering insulin. All of the child's health care needs should be put together into a document called a Health Care Plan which should be developed with input from the child's physician, parents and teachers and made a part of the child's IEP (see discussion below about IEPs).
Least Restrictive Environment
IDEA requires that children with disabilities be educated in the least restrictive environment (LRE). This means that, to the maximum extent appropriate, children with disabilities are educated with children who are do not have disabilities. A question involving LRE could arise if a school district wanted to bus a child with diabetes to a specific school because that school had a full-time nurse.
What is an Individualized Education Program?
An Individualized Education Program or "IEP" is the document that sets out what the school is going to do to meet the child's individual educational needs. There are a lot of specific rules about developing an IEP, reviewing it (which must be done at least once a year), and what an IEP must contain.
Developing an IEP
The IEP must be developed with input from the child's parents; at least one regular education teacher; at least one of the child's special education teachers or providers; a representative of the school district who is qualified, knowledgeable, and authorized to commit the district to the delivery of resources to the child; a qualified professional who can interpret the evaluation of child; others at the discretion of the parent or the school district; and, where appropriate, the child with a disability. This is the child's IEP Team.
Contents of an IEP
An IEP must contain:
A statement of the child's present levels of performance, including how the child's disability affects involvement and progress in the general curriculum (for preschoolers, this would be how disability affects participation in appropriate activities);
A statement of measurable annual goals, including benchmarks or short-term objectives, geared toward enabling the child to be involved in and progress in the general curriculum and meeting each of the child's other educational needs that result from his or her disability;
A statement of the special education and related services and supplementary aids and services to be provided; and
A statement of program modifications or supports for school personnel that will be provided so that the child can:
Advance toward attaining his or her annual goals;
Be involved and progress in the general curriculum;
Participate in extracurricular and other nonacademic activities;
Be educated and participate with nondisabled children.
An explanation of the extent, if any, to which the child will not participate with nondisabled children;
A statement of any modifications needed for the child to participate in district-wide tests or other assessments;
A projected date for the beginning of services and the frequency, location and duration of services;
Beginning at age 14, a statement of the child's service needs for transition to adulthood; and
A statement of how the child's progress toward the annual goals will be measured and how parents will be regularly informed of progress toward goals.
See the American Diabetes Association's pamphlet "Your School and Your Rights" for examples of accommodations that might be needed by children with diabetes.
What are the parents' rights under IDEA?
One reason some parents like IDEA is that the law offers parents a lot of protections.
Parents must give informed consent before their child is evaluated or reevaluated and before special education and related services can be started. The school district cannot proceed if the parents won't grant consent. Rather, the school district must request a due process hearing from the state education agency.
Parents of a student with a disability must be given the opportunity to inspect and review all of their child's education records and to participate in meetings about their child.
Parents have the right to request an IEP meeting at any time. The school district should grant any reasonable request by parents for an IEP meeting.
The school district must schedule the IEP meeting at a mutually agreed upon time and place. If neither parent can attend, the school district must use other methods to ensure parent participation, including individual or conference calls.
School districts are required to provide written notice to parents in advance of IEP meetings, and that notice must give the purpose of IEP meeting, the time and location of the meeting, and who will be there.
School districts are required to notify the parents of decisions and plans before the district puts the proposed actions into effect.
Notice must be provided in the native language of the parents, unless it is clearly not feasible to do so.
This document was prepared for the American Diabetes Association by Larisa Cummings, Disability Rights Education and Defense Fund, Inc., and Shereen Arent, Managing Director of Legal Advocacy, American Diabetes Association (March 2000)
We had our first "alarm panic" today. Thankfully I was helping out at Kacey's school today. Her pump alarm went off and she'd never seen the alert before and she told her teacher because her pump continued to beep. Her teacher sent her on a wild goose chase after me. By the time she found me, she was frantic because she didn't know what was wrong with Herbie.
"Bolus programming not complete"
Yikes! I've never seen this either and I had no book to know what that meant. Using common sense, I gathered that it meant she didn't get the complete bolus. So how much did she get? Ugh! So since her snack only had 5 carbs, I just went on and did a correction and let it be to see what happened. I stuck around school the rest of the day, just in case she needed me. She did fine and Herbie didn't sound off the alarms.
As for her blood sugars at school today... 186 when she woke up....265 at snack....203 at lunch....and 197 at resource time. When she got home from school she was an 88! *sigh* They aren't as rough as yesterday but they still arent great.
I'll keep everyone updated as we go!
Monday, April 13, 2009
After I got everything filled, then she said she needed me to hold her hand while she pushed it in. Sure thing! So I held her hand....and this was the face she gave me.....
I asked her if she wanted me to do it? "NO! I wanna do this!", she shouted back at me. So I smiled and started chanting "Go Kacey! Go Kacey!" About 10 seconds later.....
SHE DID IT!!!!! And there were NO tears!!!! She was all smiles and we were all in near tears from the happiness. I am so proud of how well she's done with this. She set this goal with her CDE on March 20, 2008 when we went to pump training with Herbie and here we are not even one month later and she's done her first site...ALL BY HERSELF!
What have we learned with sites?
The first thing we learned is that Kacey does much better when she does the sites with a device. The manual insert sites are the ones I can do but she is much more relaxed with the automatic insert ones. We actually didn't have these recommended to us because when Kacey did her own injections, she used to put the needle in really slow. We were told that since she was a slow inserter then she wouldn't like the automatic insert sites. The Cleo is a combo of both. Kacey has control of the insert but it automatically retracts the needle for her. The only drawback we're having is the fact that they don't stay stuck to her for more than a day. We're using the clear IV stuff that goes overtop but when we do this, it means she can't disconnect so we're having to disconnect the CozMonitor so she can bathe or shower during those 3 days. The Comfort Shorts stay stuck (and then some! LOL!).
Another thing we were told was the straight in sets tend to kink more than the angled sets. Sure that may happen but it hasn't happened to us yet. I must say, the Cleo sets have given her nearly perfect blood sugars, whereas the Comfort Shorts she was bouncing around a bit. I wonder if it had anything to do with the angle it was in? I'll certainly ask when we go back to the Endo!
We go back to the Endo next month for a check up and I'm going to ask for some samples of some other sets. I think it's only fair to Kacey to let her explore the other sets out there and then decide on the one she really likes rather than limiting herself.
So....don't let anyone tell you that a 9 year old child CANNOT care for their diabetes because Kacey is now proof! She has the desire to be independant and the determination to do it and I must say....I couldn't be more proud of her than I am right at this moment!
Sunday, April 12, 2009
The girls had a great Easter this year. We woke up around 8am and the girls were excited to see what "Easter Bunny" had left. Kacey got another piece to her play-doh set...The Spaghetti Factory. She's really gotten into being breative with play-doh and making stuff. Kayleigh got an iTunes gift card and they both got some chocolate treats sprinkled by the Easter Bunny. We got dressed and went to visit Frankie's Granny. She is having surgery this week to remove a cancerous tumor from her kidney that is the size of an apple. The surgeon is taking her entire kidney out so you can imagine how worried we are since she's 86! She looked great and is still getting along well and the girls enjoyed their time down there with her. After that, we came back home and got things ready for the evening. My Mom & Brian came over and the girls had their Easter egg hunt. Yeah, I thought they were too old and we didn't do one last year but for some reason they asked for one this year but wanted us to make it hard to find the eggs. So thats what we did ! ;) The laughed and had a wonderful time. Then they got some Easter goodies from Mom & Brian. Kacey got 5 more pump packs :) We cooked out on the grill for dinner but we had to bring it inside because the wind was so cold. It really was a great day!
Kacey with her new pump packs
258 eggs later..... Kayleigh collected $27.17 and Kacey collected $23.00!
One more day of Spring Break :( I'm not looking forward to the girls going back. For the last 3 days, Kacey's blood sugars have been PERFECT! Nothing below 69 and nothing above 180!! The site we did held up well with the clear IV dressing overtop of it. Tomorrow is site change day ...ugh! :( She is insisting that she wants to do it herself so we'll see what kind of drama unfolds!
I hope everyone had a very blessed day!
Saturday, April 11, 2009
My tulips are up and several have bloomed already. I love the excitement of not knowing what color they are going to be until they finally bloom!
Awwwwww :) The exclamation point at the end has a smiley face in the circle...LOL!
We were having some nice weather this morning. I woke up around 6am and tested Kacey's BG...151 (perfect!) so I let her sleep, made myself a cup of coffee and went out to sit on the deck and enjoy the morning. It was a little chilly but the smell of the crisp air was invigorating! Once the girls woke up, we spent the morning potting some more flowers and then the rain came in and we've been inside for the afternoon. It gave them a chance to dye the Easter eggs that were waiting :) (More pics to come!)
Friday, April 10, 2009
The site that Kacey put in new territory three days ago has been so comfortable for her and when her alert went off earlier, she came to me with tears and said "Mommy I love this site and don't want to change it because it feels so good!" Ugh! I had to explain to her that we could push "snooze" on the alarm since it was at 4pm but the change HAD to be done this evening since it's the 3rd day. She insisted I give her an answer as to WHY it had to be changed in 3 days? Why couldn't it be changed in 4 days? LOL! She eventually agreed to the few more hours I've given her but I know more tears are headed our way. She said she liked how this site didn't hurt at all and she didn't even know it was there. The last 3 days have gone so fast!
I don't know where we're going to try this time, but I'm hoping it's more new territory :)
Wednesday, April 8, 2009
Too Busy for a Friend or Family?
One day a teacher asked her students to list the names of the other students in the room on two sheets of paper, leaving a space between each name.
Then she told them to think of the nicest thing they could say about each of their classmates and write it down.
It took the remainder of the class period to finish their assignment, and as the students left the room, each one handed in the papers.
That Saturday, the teacher wrote down the name of each student on a separate sheet of paper, and listed what everyone else had said about that individual.
On Monday she gave each student his or her list. Before long, the entire class was smiling. 'Really?' she heard whispered. 'I never knew that I meant anything to anyone!' and, 'I didn't know others liked me so much,' were most of the comments.
No one ever mentioned those papers in class again.. She never knew if they discussed them after class or with their parents, but it didn't matter. The exercise had accomplished its purpose. The students were happy with themselves and one another. That group of students moved on.
Several years later, one of the students was killed in Viet Nam and his teacher attended the funeral of that special student. She had never seen a serviceman in a military coffin before. He looked so handsome, so mature.
The church was packed with his friends. One by one those who loved him took a last walk by the coffin. The teacher was the last one to bless the coffin.
As she stood there, one of the soldiers who acted as pallbearer came up to her. 'Were you Mark's math teacher?' he asked. She nodded: 'yes.' Then he said: 'Mark talked about you a lot.'
After the funeral, most of Mark's former classmates went together to a luncheon. Mark's mother and father were there, obviously waiting to speak with his teacher.
'We want to show you something,' his father said, taking a wallet out of his pocket 'They found this on Mark when he was killed. We thought you might recognize it.'
Opening the billfold, he carefully removed two worn pieces of notebook paper that had obviously been taped, folded and refolded many times. The teacher knew without looking that the papers were the ones on which she had listed all the good things each of Mark's classmates had said about him.
'Thank you so much for doing that,' Mark's mother said. 'As you can see, Mark treasured it.' All of Mark's former classmates started to gather around. Charlie smiled rather sheepishly and said, 'I still have my list. It's in the top drawer of my desk at home.' Chuck's wife said, 'Chuck asked me to put his in our wedding album.' 'I have mine too,' Marilyn said. 'It's in my diary' Then Vicki, another classmate, reached into her pocketbook, took out her wallet and showed her worn and frazzled list to the group. 'I carry this with me at all times,' Vicki said and without batting an eyelash, she continued: 'I think we all saved our lists'
That's when the teacher finally sat down and cried. She cried for Mark and for all his friends who would never see him again.
The density of people in society is so thick that we forget that life will end one day. And we don't know when that one day will be.
So please, tell the people you love and care for, that they are special and important. Tell them, before it is too late.
If you're 'too busy' to take those few minutes right now to forward this message on, would this be the VERY first time you didn't do that little thing that would make a difference in your relationships? The more people that you send this to, the better you'll be at reaching out to those you care about.
Remember, you reap what you sow. What you put into the lives of others comes back into your own.
May Your Day Be Blessed As Special As You Are
Steph (the person I got this email from), I love you and miss you tons! Our March 2000 Babies brought us together and even though we may not talk as much as we used to, you'll always be someone near and dear to my heart!
To Everyone that read and supports me on here.... Thank you from the bottom of my heart for being such a wonderful group and saying the nicest things to me! I'm so blessed to call you...FRIENDS!
To all the D~Mommies....You all are my rock! You know exactly how I'm feeling most days and it's nice to be able to turn to you all for support!
To all my D~Blogger friends....You all ROCK! I have confidence that Kacey will grow up and admire you all just as much as I do. Every single one of you is a HERO and a wonderful role model for my daughter. I look forward to the day that she blogs right along side of all of you!
To all the Non-D Friends/Readers....Thanks for being here for me! Your kind words are the encouragement I need as a parent to keep striving to control the D-Monster.
YOU ALL ARE THE BEST!!!
As for my paper....
Do I still have my paper? I sure do! It's in an envelope in my box with my stuff from my senior year of high school.
Have I looked at it over the years? I sure have! And I've often wondered where all those people are that wrote such nice things about me?
We went shopping with my Mom today. The girls are on Spring Break and the weather is crappy. It's too cold and windy to do anything. The plans of going to Busch Gardens and Putt Putt Golf were tossed out the window and we replaced them with shopping :D Our main goal today was to get the girls new sneakers. Kacey has been complaining of her feet hurting and the sneakers she had were pretty worn out. She's so hard to take shopping for shoes because everything "makes her feet hurt". We went out to Williamsburg to the Reebok outlet store. (I love that place!) I had her fitted for shoes this time. Instead of walking around and trying on different ones to see what fit, we knew what size to choose from. My Mom found a cute pink & white pair and Kacey tried them on.....BINGO! Perfect fit! She walked around, twirled, jumped, hopped and then smiled and said "I love them!" Noway?!?! Could this be?!?! The first pair she tried on fit great. They fit so good that she didn't want to take them off and she walked out with them on her feet. Wow! That was easy! From now on, we're going right to Reebok and having her fitted before she gets new sneakers each time. As for Kayleigh, she also needed new running shoes. She's going to be working out and training with my brother while she is in Hawaii for 8 weeks. She's working on getting those 6pk abs (which she's not too far from having)! She's such a fitness buff and I'm glad she loves to stay in shape. So I had to get her a pair of sneakers that would hold up through the workouts. She tried on a few pair until she found the right one. She's in between sizes right now so we got her some running socks as well and hopefully she won't have to worry about her feet sliding. (Thanks Nae-Nae for getting them new sneakers!) Since we were at the outlet mall, the trip wouldn't be complete unless we ducked into Aeropostle. We always hit good sales in there for Kayleigh since she's still so skinny and usually what's left on the clearance racks are the small things. She got 5 new shirts for $3-$5 each! :) I'll take her back out there before she leaves to get her some new shorts for her trip. She's worn the same size for about 4 years now...LOL!
After all of that, we still had grocery shopping to do (ugh!) I hate grocery shopping but this time I was so thrilled with myself because I had $65 in coupons!! I used to do coupons when Frankie and I first got married and through the years it was easier to run in and get what I needed and run out (unless some pretty good coupons caught my eye in the paper) Because we are on a tighter budget now, I decided it was time to get back to clipping those coupons and actually putting them to use because it was like throwing money away! I'm so glad I did :) Plus I actually got a pretty good deal this time. I had 4 coupons-- 2 for (up to) $30 off glucose machines and 2 for (up to ) $20 off the strips. We don't need another glucose machine but these coupons were too hard to pass up considering it made everything FREE! I had a wonderful idea of how to put them to use. I'm in the process of setting up a T1 Diabetes support group in my area since there isn't one near us and we know of several children diagnosed recently. So I thought when we meet for the support group, we could have little give-away's each meeting. I'm gonna save these glucose machines for that :) Each child that attends will put their name on a ticket and at the end of the meeting then we will draw out for the prize! So I'm going to start a box full of goodies that they can choose from and every little card I get in the mail for free diabetes stuff I will fill out and add to the box.
LOL so after all of that, we worked up an appetite and so we stopped and had lunch at Subway with my Mom. Then it was time to go home and put away a month worth of groceries!!
It was a great day!
Tuesday, April 7, 2009
I've tried simple alcohol but after wiping til the skin was red, we gave up!
Next try.... GOO GONE! It might be something used for getting sticky stuff off of glass and other surfaces, but it worked magic on her skin. I followed the cleanup with a wipe down of alcohol and it was clean without any red marks.
Is there something else that is made to take off the sticky glue? Any home remedies that you use and would like to share with us?
Monday, April 6, 2009
When Kacey was on shots, she used a Freestyle Lite meter and tested between 7-10 times a day. Now that she is on the pump, she is using the Freestyle meter connected to her Cozmo but she is testing about 12-15 times a day. Most of those are because of lows and retests in 15 min or because she "feels weird". Plus we're doing middle of the night checks EVERY night.
When she was using the Freestyle Lite meter, her Endo wrote the prescription for 300 strips a month. We used every bit of those and by the time it was time for a refill, she was ready for more! When her Endo wrote the prescription for the Freestyle strips, he wrote it for 200 a month. HUH?!? I questioned it when we were there and her CDE said for us to let her know if we needed more than that. We do! I have to fax a note over to her and let her know that 200 isn't going to get us through the month if she's testing as much as she is.
Is it normal to test this much when you're on the pump?
HOPE... thats what we hold onto every single day! One day I hope to be able to say "Kacey used to have diabetes!"