Student with diabetes, need help w/parent

[Pikus1]

I am a teacher with a student who has diabetes and autism.  I am very concerned about his numbers, because they are usually very high in the morning (over 350) and he has a very difficult time in school until his numbers come down.  I have tried talking to mom about this but she is very defensive and does not share information readily.  On the days he is very high, I ask her what his number was when she tested him and I get "it was good", "I don't remember so it must have been good."  Occassionally, I get a number.  When I ask about how much insulin he got, I get the same run around.  Without this information, I find it very hard to make sure his numbers don't go higher or bottom out.  I am open to any suggestions as to how I can get mom to open up so we can help this student achieve all he can.  He is a VERY smart little guy (6yrs old) and has a ton of potential but these high numbers are throwing him totally off.  I did talk to the nurse at his doctor who told me that kids have an enzyme that helps protect them until puberty.  If anyone knows about this, I would be interested as I can't find anyone else (drs., nurses) that have ever heard of this.  Any help would be appreciated.  I am very worried about long term problems for this child.  Thank you!

[JDRF-Team-ES]

It sounds like you are the type of teacher that goes above and beyond the call of duty for your students and I commend you for that.  First of all, I am not aware of an enzyme that protects children up to puberty, but I do know that the better the control, the better the long term outcome for those living with diabetes.  In the short term, high blood sugars are having an impact on this little boy's daily functioning at school.



Although your intentions are good, you are really powerless to a certain degree.  My suggestion is to try to form an alliance with the Mom. Being the parent of an autistic child is challenging enough and adding the very detailed management of diabetes can be more than any one person or family can handle.  This mother may feel overwhelmed, inadequate and guilty.  Even though she may get some support at home, it may not be enough.  She may view your questions as one more demand on her that she can't adequately fulfill.  



I would start by empathizing with her situation and asking if there is any way you might be of help while her son is at school.  As a diabetic myself, I know how frustraing it is to keep blood sugars in control all the time.  Sometimes, they go up fo no rhyme or reason and it has nothing to do with what you have or haven't done. When your blood sugars are high, you feel guilty even if you have done nothing that would casue it and you really don't want people asking you about it because you feel bad enough already.  It is probably a million times harder for this mother because her son may not be able to communicate his needs with her or share in the resposbility of food choices, etc. He may not always be cooperative or easy to control and she is probably doing the best she can.  I would spend your energy on letting her know how much you support and understand her situation and as she comes to trust that you are an ally of hers, she may be a little more forthcoming.  Good luck to you and thank you for your efforts.  Your students are lucky to have you for a teacher.

Es

[Pikus1]

I completely understand that this mom is overwhelmed.  I can't imagine living in her shoes at all.  Especially since she has another son who is in 4th grade with diabetes as well.  Over the past year and a half, our team has been trying to support her and take as much of the burden off her while he is in school as we can.  One of my aides is diabetic as well and has been for the past twenty some years, so she has alot more experience with this than I.  She has been a godsend when it comes to this student.  I would have thought knowing that there was someone working closely with her son who has diabetes and experience, it would make things easier on mom.  Instead it seems as if she thinks we are against her when we ask questions.  My aide says that if she knows what his morning numbers and what insulin he got, it would be alot easier trying to figure out what to feed him, etc.  I have tried talking to mom about this but she gets very defensive.  It's not that we are trying to tell her she is doing anything wrong, because I don't know how I would do in her situation, we just want the information so we can all be on the same page.  I am just very worried for this little boy.  The doctors have told mom that something is protecting him until he hits puberty so I don't think she sees the urgency in keeping his numbers in check.  From everything my team and I know, that's not the case and the high numbers he has (over 600 at times) is doing damage to him that can't be reversed.  Thank you for your input.  I'll keep trying to work with mom and I hope one day that she will see it's all about him, not her.

[JDRF-Team-LRS]

What a great teacher & human being you are...



I have also heard that children are blessedly protected from severe complications until puberty.  I learned this from my sister (we are both diabetics) who's daughter was diagnosed at age 4.  While it's surely a difficult row to hoe to have diabetes as a munchkin, at least there is a small comfort that the punishing complications that are associated with poorly controlled diabetes seem to be minimized during those years.



My best guess is that the mom feels threatened by you in addition to being wrought with guilt that her children have this disease (most parents would eagerly trade places with their diabetic children if they could).  Her whole life is likely consumed with diabetes issues -- or guilt about diabetes issues.  Doing things for her children or feeling guilty about not doing enough.  



It seems as tho' she cannot "hear" your sincere compassionate help for what it is.  You might ask your student directly and you can likely teach him to focus on the meter and learn to read the number.  He may not understand the meaning of the number, but it could be a start to his participating in his own care.  This is not trivial, even for a child without autism, however.



One approach that she might embrace is for you to make the first step toward providing helpful communication.  If you're not already doing this, perhaps you can send back & forth a small notebook in which you/the aide write relevant details of the student's day.  High or low BG, time of day, symptoms, insulin, activities/events that might be related.  YOu could ask her to jot down any notes she wants you to have and send the book back to school with the student.  This idea is a variation of my sister's technique.  They kept a notebook in the kitchen so that whether the babysitter, or my sister or her hubby or "auntie" was caring for the little girl, they'd all have access to the full information and they all were committed to putting relevant info in the book.  In time, my niece became more responsible for putting info into the book, too.  That book -- there were dozens of them filled thru the years -- was a priceless tool for both daily treatment mgt and also for spotting patterns ...



Good luck and thank  you so much for your involvement!

[JDRF - Team- SS]

Hello,



I applaud you, as well.



I am a mother of a 10 yr. old who was diagnosed with type 1 at age 3.



I cannot even imagine how difficult this situation is for everyone involved.  Everyone who posted gave you excellent advice.  I can completely relate to the "guilt" thing.  When my son has high blood sugar...sometimes without rhyme or reason like JDRF-Team-es mentioned, I feel guilty and responsible.  



I think the notebook idea was a great one.  I am trying to put myself in the mom's situation considering I am a mother of a child with type 1, but it is hard for me because even when my boy was 6, I was the one who made sure the teacher knew what to do, what to look for, etc.  



My son went on an insulin pump a little over a year ago and it has helped us to get a better handle on his blood sugars, but he still has highs and lows.....that is what this disease looks like.  There is only so much we can do.  I do see your need to be invloved so that you can care for this child to the best of your ability.  This is a tough one.  I can see that her defensiveness stems from guilt.  Not that she is doing anything wrong at all, but we feel guilty when our children have high blood sugar.  



Maybe you could approach the mom by telling her that you want to make sure that the care for him that you provide while he is at school is as thorough as the care she provides.  Tell her that because she knows him the best, you just want to make sure you do the right thing and handle things as she would.



You are definitely going above and beyond what I have experienced with teachers.  



Take care and post again if you have any news for us!



SS