Newly diagnosed and thinking about kindergarten


(christi p) #1

My son Evan was just diagnosed Feb 24th 2009. I used to work full time, but have recently left my job to stay home with him (and little brother) until fall. I am having overwhelming anxiety about his starting school.  There is a full time RN at his new school with 25 yrs experience. We've spoken over the phone and she seems wonderful and has alot of diabetes care experience. We are trying to decide on all or half day kindergarten. We are trying to get a pump before he starts school.  Any suggestions on all of half day? How to introduce this to his class?  I feel like if I am there with him to educate his class maybe they will understand his diabetes and not make him feel "weird". He worries about kids laughing at him or thinking he is "sick" or different. He is pretty mature for a 5 yr old.


(Baileysmom) #2

Dear Christi, Welcome to the group.  The first few months - and for me, the first year - with a child with diabetes is anxiety-ridden and overwhelming. 

You will receive plenty of support, sympathy, and encouragement from this site from others who have been where you are now.  Only you can know what is best for Evan, but perhaps you could begin by visiting the school nurse in person to develop a plan so that you and she are very clear on expectations for care and the communication you will receive.  You might also check with his teacher to see if you could spend time there to educate Evan's classmates on what diabetes is (there are plenty of good, age-appropriate books to assist you with that task).  Regarding a pump, it is unusual but not unheard of to get a pump within the first year of diagnosis; regardless, it is not "automatic" and Evan will still need to test and dose regularly.  My daughter was older at diagnosis - others on this site whose child was Evan's age can help you with the decision about full- or half-day.  During Year 1, I always erred on the side of caution. 

Let us know what you decide and how Evan is doing!

Martha (Bailey's mom, now age 15)


(christi p) #3

Dear Martha,

Thank you so much for your response.  We are set up to meet with our school nurse next month.  I anticipate that she will be very helpful.  I guess I am just trying to get some idea of what others have experienced.  Evan is very bright, but also very sensitive and I worry about how best to approach these issues for him.  I want to make sure the other children know about his diabetes, but I by no means want him to feel it defines him.  We talk about how this is a part of him, but it is not all of him.  We have discussed the pump alot with his caregivers at Children's Hospital Endo and they all agree that it would give him more flexibility.  We understand and have discussed with him that we will still need to do his finger sticks and will still need to "add his numbers" and give him insulin.  He gets this too I think.  He is worried about the other children's response to his diabetes care needs.  I am sure I am much more anxious than he is , but I just want to do the best thing for him.  How old was Bailey when she was diagnosed?  Has managing her care at school been difficult for you at all? You are right though, it has only been a month and I quite honestly can not imagine leaving him under anyone else's care but myself and my husband for longer than an hour or two! I am still overwhelmed and a little heart broken at the lack of ease and spontaneity his life will have, but I thank God that he will still be a healthy active little person who will grow to be a healthy active adult!

Thanks again!  Christi

 


(system) #4

Hi Cristi!

Your post hit home with me.  Luka, my son is 7 and in 1st grade. He should be in 2nd but having a late b-day I held him back a year.  He was diagnosed at 2 and 1/2 yrs.  Let me explain though. We lived in Wisconsin. There is only 1 RN per district. Luka also has a denial about his Type 1.  This means he will push the envelope with his lows or even highs until it becomes critical. Luka has always been well liked and I have never experienced children treating him any differently.  He has even been on the Pump when we lived in Texas where there was a RN in every school and did not faze the other children.  I have always explained to him when he questioned his Type 1 that it's o.k.  Everyone has something that makes them feel akward.  It might be a peanut allergy or asthma, ADHD, cystic fybosis and etc....  We have experienced all of these conditions in school.  He will be just fine.  Befriend and be encouraging to all those who care for him.  If you are kind to his caregivers they will in turn build a trust and friendship with Evan (and mom)! They will get to know him and know when he is symptomatic and will become routine, as we all know....right?  They will do well by him and eventually you will get you life back and return to work, friends and hobbies.  In October it will be 6yrs. for Luka and us. Diabetes at this point is no longer an issue,  I just want to always find a way to manage it better to insure a positive future for him.  Type 1 is manageable, I have seen way worse conditions in my boys schools.  Keep daily contact with Evan's school and treat yourself well Cristi! 

Marianne Movroydis

Milwaukee  WI.


(ReneeC) #5

Hi, Christi,

My son was diagnosed two years ago, Feb.  He was halfway through his kindergarten year.  I have information sheets I gave to all the teachers that would come in contact with him (including specials) and information they could leave in case of a substitute.  I went into his class that year and every year since and talk to the students.  Jarett helps by showing the students how he tests, what the tests do and I read a book to them, "Taking Diabetes to School", by Kim Gosselin.   Jarett and I write a letter to the kids in his class inside the book and we give it to the class.  We also take in "Diabetic friends".......Rufus the diabetic bear and pumpernickel the diabetic monkey.   To conclude, I give the students a snack that Jarett would be able to eat.  I hope this helps!  I believe education is the best way to make the children accept a difference........

ReneeC


(christi p) #6

ReneeC,! Thank you so much for your post! I am the type of person who likes to know everything first and Evan is very much like this too, so I agree with education being the best way.  I worry too much (about everything at this point) so I wanted to get any ideas and perspective I could from parents who had navigated this situation already.  I will definitely check out the book as soon I post this message! You have some great ideas.  Thank you again


(amy price) #7

Hi Christi.  My son (Adam) was diagnosed March 1st 2years ago the day after he turned 5.  I too worried about how it would work out when he went to school.  We met with the nurse and principal a few months before and again with his teacher and all other staff that would come in contact with Adam.  There had not been a diabetic at his school for a long time.  We made up handouts for everyone to explain highs and lows, what to do, etc.  We also set up a 504? plan.  There is a lot of info on the JDRF website about starting school.  I don't work so I actually spent the first few days at school helping everyone get used to his routine.  Adam was put on a loaner pump from Medtronic within 3 mos. of being diagnosed.  It definately made life easier for us. I wish we had chosen the Animas pump b/c it's waterproof.  Anyway, the main thing for us was to have a plan in place so that he was checked every couple hours, and before any physical activity.  I usually talk to the nurse daily and she calls me when his blood sugar is out of range.  He tests in the classroom and the teacher also knows how to work his pump.  The kids have been great.  His teacher talked to them at first, and Adam and I have answered any questions they have had since.  Our kindergarten  is full day.  I think if I had the choice I probably would have opted for the half day.  Everything has worked out fine though.  I am amazed at how well Adam has adapted.  He will be going into 2nd grade next year and getting a new teacher (our school loops).  I pray things will continue to go smoothly. 


(dancemommy) #8

Hi Christi,

My heart goes out to you and your family.  I remember those days like they were yesterday.  My daughter just celebrated her 10 yr diabetes Birthday.  She was 6 when she was diagnosed.  I would be surprised if your diabetes care team will let Evan have a pump being so new to diabetes, he is most likely still honeymooning!

Your anxiety is so real and so precious, it will make you stronger in the long run, even though it is so hard right now.  Personally I think I was on a mission to educate anyone and everyone who would listen at school, before I would let Shelby go back to 1st grade.  I put a low box in every classroom she would visit, and made sure the PE teacher took low supplies when they went outside.  (also the recess monitor).  By the low kit I mean, get a bunch of plastic art boxes (you can get at target for about $1.00 ea), make low kits consisting of a juice box, a 1 carb snack that will not go bad, prepackaged crackers and peanut butter work well, but make sure it's something Evan will eat without you there.  And put a fast acting sugar in also, we used small tubes of cake icing, so it could be squirted in his mouth in the event he won't drink juice.  I also typed the steps to treat the low and taped them in the inside of the plastic box. 

Another thing I have done every year since Shelby was diagnosed was put a 504 in place at school.  You may think it's overkill and not necessary, but I promise you at some point during some school year you will be thankful you have done this.  It may be the simple fact that a teacher is having a bad day and is crabby to the class, and your son has really high blood sugars, and a terrible headache, and he won't tell anyone at school because the teacher is already crabby.  He may get a "0" on his spelling test because of the high blood sugar, and he may know how to spell every word the test backwards and forwards, but he still gets that "0".  You need backing, you need support so he will be allowed to re-take the test, a 504will give you that support.  If you put it in place once your school will just renew to any new changes with the diabetes care, and every year afterwards will be a breeze.  I am only saying to do that to take that worry off your shoulders, you have enough to deal with taking care of your son.  I know you think your school and the teacher is wonderful, and they would never do this to your son right?  Why take the chance when you know these are other humans, who can make mistakes!  Just my opinion.

I'm telling you so much, I'm sorry this is so long.  I could right a book, we have experienced so much in 10 years.  I cannot remember my daughters life before diabetes, isn't that sad.  She is such a wonderful young lady now, I am so proud of her.  But let me tell you this, keep in mind, you can only do your best.  Diabetes is a game, some days good, some days bad, remember to cry, and after a few years remember to let others help you, (it will take you that long to give up a little control!).  I have a copy of this poem at home and at work, and since mothers day is coming up, I hope all Mothers of Diabetics will go online and find a copy, print it out and read it a lot:

How God Selects the Mother of a Child With Diabetes, by Erma Bombeck.

 

Enjoy, God Bless you,

Terry (dancemommy)


(jeremysmom) #9

Christi,

My heart goes out to you and your family.  Jeremy turned 5 in March and we just went thru the process of deciding what he'd do for kindergarten.   Like you I had periods of extreme anxiety.  It does get better every day!!!  We're in the waiting process for Jeremy's pump.  It's hard to be patient.  We thought he'd be pumping by now,  looks like maybe by summer.  We've decided to homeschool Jeremy for Kindergarten.   Our school district only offered a full day option, and that just wasn't a fit for Jeremy (or Mom!!) We are going to cherish this last year at home and feel like we just need one more year before we'll be ready.  Is Evan in preschool currently?  Maybe Jeremy and Evan could be pen pals. 

  I still feel like  we're rookies at this,  but people told me it would get easier and it really does.  Best of luck to you and Evan!!


(christi p) #10

It really helps to have so many wonderful responses! Thank you all!

 


(caras mom) #11

My 3 year old daughter Cara was diagnosed Feb 13th 2009.  On that same day we had an appointment to enroll her for Jr. Kindergarten which we had missed because she was in the hospital.  We live in Canada and when children are 4 or turning 4 that school year you can enroll them in Jr. Kindergarten.  The following week my husband re-booked with the school and went to enroll her, we did not want her diagnoses to change her life in any way.  My husband began to explain to them about Cara and what she needed to do on a daily basis in order to stay healthy.  He was told that the children are not allowed to check their blood sugar at the school because of the presents of blood and that if she is feeling sick they'll just give her a candy or something.  Also there are no nurses present in our school systems where we live.  My husband was shock by their disconcern for our daughter’s health.  The fact that there is another diabetic in that school we thought that they would understand Cara's needs and have options for her.  To add more stress to the situation our school board is changing J.K. and Kindergarten from half days all week to full days 3x's a week.  We liked the idea of half day’s so Cara was able to experience school but still able to come home to take care of her blood sugars and injections for lunch.  So if they have it their way Cara will not be able to check her blood sugar or get injections all day at school.  I have started to do some research and educate myself in order to advocate for Cara and her health needs.  Needless to say I have a lot of anxiety and work in front of me and we are not looking forward to next September.  Hopefully I am able to plead my case and have Cara in a safe environment when at school or we may be making other arrangements for her.

I also wanted to share with you that when Cara was diagnosed my 6 and 4 year old children were very interested and loved to talk about what was going on with Cara.  They wanted to know everything what, where, when and how Cara did things.  They have never made a negative statement towards Cara and only shown concern for her.  This has made Cara feel very special in our big family of 8.  You may be pleasantly surprised at the other children’s reactions to your son.  In the hospital we received a book called Leon's Story understanding diabetes, it is a great book for kids and may help you explain or give you some good ideas of how to explain diabetes to your son's class.

Hope this helped!


(christi p) #12

Nicole,
It certainly helps just knowing that I am by no means alone. Your situation with the school and their response all at once breaks my heart and fills it with indignation and just plain anger.  I simply do not understand why, in such a sophisticated and savvy world, that this is how our children's serious health issues are being (mis)handled!  My prayers are with your young Cara and your family. I love that she has such a close and big family to support her and share in this journey with her.  We have one other child, he is only 19mths old, but he is right there in the mix with his brother.  He has actually stood next to his brother and "waited his turn" when testing his blood. After Evan completed his finger stick his little brother stuck his finger out and said "mine" and would not be swayed until his finger was tested as well. He also waives his little hand over Evan's injection sites to help the alcohol dry and then he says "shot for Ev?".  Children can be so simple and straight forward and just plain awesome! I sincerely hope that many of his classmates will be the same (as well as Cara's).  I sincerely wish you and your family the best of luck and can only hope that her school situations works out. I don't know much about anything yet,but I do know that there is not much in this world as formidable as the strength, persistance and love of a mother. Thank you for the book suggestion as well. I wish you the best!


(annaclairesmom) #13

Hi, My daughter is in kindergarten now. She was diagnosed when she was three. 2 months before her 4th bday. She attended 4 year private preschool that fall. It was only half day. I went to the school for any insulin that had to be given.  That was really difficult, but we made it through. No one could have been more terrified than me to hand her over to teachers and a nurse who didn't even know her. I worried myself sick. Would they be too busy with the other children to notice when she goes low or know when she was high? I could just visualize her falling out in her chair before anyone noticed. Before school started, I sat down with Anna Claire's teachers, and  principle. (This included her PE, Art, and music teachers. Oh, of course the nurse was there too. I showed them all of her supplies(we use an insulin pen even now). I did a 504. Before the first day of school, I typed out her day. I found out when she would go to lunch, have PE, recess and so on. I literally laid it all out for them practically hour by hour, and what to do for lows or highs. They appreciated that so much, because they were just as scared of her as we were to leave her in their hands. Also,  I wanted to mention that my daughter is extremely shy. Not a word, nada. So they totally have to rely on watching her rather than her telling them she is low. There is another diabetic child in the school, but he is a pumper. My child is not. They had to learn. I also made sure that they knew I was available if they needed me(I work nights, I'm here now!) Anyway, I had to make sure that soomeone other than the nurse knew how to care for her if the nurse was out. That was kind of an issue, but the parapro in her class is wonderful. I don't know what were going to do next school year. We basically do everything for her even though she can test her BS if we ask her to. We are trying to move toward more independence for first grade. And trying to get her to communicate more. Sorry so long!!! But I truly, truly do understand.

Susan

 


(annaclairesmom) #14

Christi P,

 Sorry to post again, but I wanted to tell you that the children in you son's class will be so protective of him. They often notice when the kids go low before the teachers. One day right after Kindergarten stared, I came to the school to give insulin because the nurse was out, and the teachers were just learning. Some of the children didn't know I was Anna Claire's Mom. They were telling me, 'you gotta check and see how much she ate!" "She's  gotta go to the nurse" Anyway they look after her. You must explain to the class early on about his diabetes.  Kids are very curious creatures. But they accept it so easily that it's just what Anna Claire does. It becomes routine in no time!

Susan


(rh64226) #15

I joined this page to respond to you. I am a new teacher with a student who has diabetes. I have been researching everything as much as possible so that  I can be the teacher he needs, and came across this forum. I am by no means an expert but these are the things that I have seen being the teacher of a child with diabetes.

I knew nothing about diabetes before I started teaching this student. When I found out I had him in my class I was so scared I would mess something up. I went with him every day to the nurse several times and watched him and her test him. As I did this I asked a million questions to learn everything I could. I guess the reason I am telling you this is because I want you to know that most likly his teacher is going to want to do her best for him. I care about every one of my students but I have since day one kept a closer eye on him. I am now to a point where I can guess if he is high or low. The other thing that helps is that he feels when he is low or dropping so he can tell me. Also our school goes through a training every August to teach about diabetes and other medical conditions students in our school could have.

The children in my class love him. He is one of the most popular students and they all look up to him. No one has ever acted strange about it or got upset. They all understand when he comes back from the nurse with a snack or a drink that he needs that and they don't make fun of him for it. In  fact several parents have told me that their children are fascinated by him. They talk about how neat it is. Children can sense if someone needs help at this age and for the most part they will support him.

 

If his teacher has never worked with a diabetic student they will need to be educated about highs/lows and how they need to have a kit  for this student. (mine is in a basket that goes with us everywhere)

Sorry this was so long but I wanted to share with you the other side of going to school.

 

 


(christi p) #16

I have been overwhelmed with the outpouring of sincere and wonderful people with messages in response to this post! I had some good and several bad experiences over the years with teachers and have been holding my breath about how my son's future school career would proceed.  I am so happy to report that I have spoken to the teacher at my son's new school who is the "half day kindergarten" teacher and she is wonderful! She also has type I diabetes! She offered up that she would be just down the hall even if we choose to place my son in the full day class and will help out if he needs anything at all!  My cup runeth over! My belief that there is a God and that that God is watching over my child and our family is again re-affirmed. I actually started to cry over the phone with this poor woman. (She chuckled and said "my mom was the same way and I was 10 when I was diagnosed")  How very, very lucky/blessed I feel we are.  From the nurse to the office staff to, now, his teacher these people are shining stars in my sky!  I have read so many stories from mothers and fathers who have had such a hard time and my heart just aches for them.  It is amazing to me that in this day and age people can not understand how very valuable ALL of our children are. Thank you all so very much! I have never been so terrible at expressing myself with the written word-but again, I am overwhelmed!

Sincerely, Christi P


(jeremysmom) #17

Christi,

Thanks for sharing!!  God is good!!  Sounds like you'll have a wonderful kindergarten experience!!  Have a great day!!

 


(Fred) #18

You are truly a blessing to your students and thier parents. My daughter is going to be starting 1st grade next year and I hope her new teacher will be as good as you.. 

Thanks (on behalf of diabetic parents everwhere)

Fred


(pack5nky) #19

hi christi i went thru the same thing you did my daughter is finishing kindergarten in a few days i had even thought about homeschool but she did great her first year we went in before school started and talked with her teacher and nurse and had our diebetic educator from her doctor do this also and everything worked out fine for her. she went all day and at the begining was tired but as the year progressed she did fine. the school nurse has my phone number and i told her never to hesitate to call me when she neede to and it worked out good. hope everything goes well for your little boy

 

christina


(LPCmom) #20

I had to laugh.  My youngest son often asks to monitor when his brother does.  And, when my son first got a pump, the youngest kept asking for one and using toys to pretend that he had a pump too.