Working Parents of child with T1D


(Luisa) #1

Hello Everyone!

My son (10 years old) was diagnosed at the end of May this year (the last week of school). Because he was diagnosed with only two days left of school left, he did not return to school. We moved over the summer and he started to attend a new school, we are going into our 5th month of being back in school with the new diagnosis and my husband and I are just curious as to how some of you parents handle working full time and having a young child with T1D in school?

We are asking because there have been times we’d had to leave work to go pick him up due to his Glucose levels and him not feeling well or many calls from the school nurse to go over numbers, dosage approval for corrections, etc. Luckily I am blessed to have a job that so far has been very flexible and understanding, my husband not so much. We wonder how most of you manage keeping a full time job and caring for a child with T1D, any tips or suggestions? We are just wondering if in the future one of us may have to consider going part time or staying home. Feedback is appreciated.

Thanks!


(DDrumminMan) #2

My son was diagnosed at 5.

It’s been a while, but when he was in public school, they had a nurse on site all day every day. he would go down to the nurses office and test his blood and get a dose if he needed one. If things got out of whack, the nurse would call me. His teacher’s where also aware of the situation and would send him down to the nurse’s office if they thought something might be off.

It worked great and I worked full time and was a single parent.


(Linda) #3

Both my husband and I work full time. My daughter was diagnosed 10 months ago (age 12), and at first it did take quite a bit of time on our part to learn and manage diabetes. But ‘we’ are on an even keel now- and it has become more routine and requires very little time. Two things helped us get there: use of a CGM and competive sports. My daughter is very aware and very vested in taking care of her BGs as she wants to compete at a high level- and knows that is only possible when her BGs are in a normal range. For us, sports has so very helpful in achieving normalcy (and we easily continue to work full time).


(Luisa) #4

Thank you for sharing! :slight_smile:


(Luisa) #5

Thank you for sharing, we are planning to ask at our next visit (in a few weeks) about a CGM. I agree that competitive sports are a big help, we noticed that as soon as football season ended BGs got a little higher and his “attentiveness” to his BGs was not as strict. We just started basketball and noticed the BGs getting a little better already. Hopefully this, along with time, will continue to make it more routine and manageable for all of us as a family.


(Linda) #6

As you are probably aware, exercise decreases insulin requirements- and of course helps with weight management - so many pluses. We have her in high intensity fitness program that she does 2x/week, as well as her sports practices which are 2x/week. We’ll continue that as long as she loves it!!


(Jenijeni) #7

Hello,
My daughter w’s diagnosed when she was 8, on her first day of 3rd grade. That first year I missed a lot of work. I have used FMLA for the time a where i have to leave work to help her. After the first 6months we have not had to leave work very often to go to school. As they get older, they learn how to treat themselves and it gets easier. The FMLA saved my job for that first year. Your job should offer it as well.


(jasontanner) #8

As already mentioned, CGM, specifically the G5 Dexcom. My wife and I both work, but we watch our 8-year-old’s readings all day, and it is shared with the school nurse and his teacher so everyone is aware and can help. We have a group chat with all of them, and our son, to ensure everyone is helping and we’re all on the same page. The pump also helps tremendously, although I would recommend the Omnipod Vs Medtronic - way easier to use, and no tube, so he’s not tethered all day.

We actually had two diagnosed at once, so we watch BOTH of their BG levels all day, but the other one is 14, so he basically takes care of it all himself.


(Karmella) #9

My daughter was diagnosed the end of February this year at 7 years old. I am a single mom, have a full time job and 3 other kids one of which still lives at home. I work for a small accounting firm which does not offer FMLA. I tell you this to tell you I know how you are feeling. When we were first diagnosed it was the middle of tax season. I missed 5 days right off the bat because we were hospitalized. Then we got home and she spent one day in school and then the flu set in. I missed another 2 days of work because no one else was trained to care for her. She was back in school 2 days and she came down with strep, I missed more work. Needless to say it was a very difficult time and I feared I would either lose my job or need to quit to be a full time parent. But with only one income neither of those things were really acceptable. In the last 10 months I have learned that relying on others is the only way to manage T1D and in order to do that I need to communicate. My daughter has gotten very good as helping with her care but without my huge network of people helping we couldn’t do it.

The best advice I can offer to you is to get to know the school staff. Become very close with them. They now understand that I can not leave work for needless things so they help me to manage my daughters diabetes so that we avoid needing me to present. I do take a lot of calls/emails and I give direction. But the number of calls and visits to the school have reduced dramatically since those first few weeks. We check sugar before daycare, and they check again when she gets to school and has breakfast even though its only about a hour and a half later. She does not have a CGM or a pump. I think when she does get them it will reduce the need for my physical presence and the phone calls even more.

I know it is very hard to trust others to care for your child the way that you do but the more you communicate with them the more able they are to follow your wishes. Have your doctor put things right in your child’s medical plan. My daughters school plan clearly states that whenever there is a question, even if it just my child disagreeing with the nurse, I am to be called to resolve. This has eliminated my daughter sneaking snacks or simply telling the school she isn’t hungry because she doesn’t want to have a shot. It is great that you are reaching out. I have mentor that was assigned to me by JDRF and I talk with her often. She has been managing T1D longer than me and dealing with the schools in our area so she is able to offer insight on how she handled situations. Let people help you and ask tons of questions. I know it isn’t easy. Feel free to reach out to me any time.
Karmella


(Luisa) #10

We are definitely going to ask about a CGM at our follow up in a few weeks, thanks!


(Luisa) #11

Thank you so much for sharing your experience with me, as I was reading your post I did think of ways that my husband and I can communicate better with others around us in order to build a stronger support system, it will take time and patience but in the long run I can see it helping a ton when it comes to not feeling overwhelmed with how everything is going to work out. I am looking forward to getting to learn T1D more in depth in order to be able to help our son and make things more bearable for him. I am happy to know that there are other parents out there who have some of the same concerns we have, at the end of the day we all want to be able to provide our children with everything we can and more! Thank you :smiley:


(Kathy) #12

My 10 year old was diagnosed last year. We got a call each day about his levels, had to pick him up multiple times and we were told we had to go to all of his field trips. On his last day of school, they had a party and he had too many snacks. The nurse called me and said his blood was too high and she was to scared to give him a shot. Furious, I left work and got him.

That night I googled the head of nursing, the superintendent and head of legal for his school and told them that they are violating my sons rights and put his life in danger. I also demanded the 504 plan.

Starting this year, my son will always have an RN on site to administer his shots and who will accompany him on field trips. This plan insures that the school will be held responsible for his well being. I highly recommend you look into it!


(Luisa) #13

Thank you for your feedback. We have a 504 in place but I am heading the route that you did in contacting higher ups in his district. Our recent struggle has been with him transitioning into middle school and the middle school not having someone who is licensed (we live in CA where the law only requires 1 licensed person per district therefore not mandatory at all schools) therefore delaying the process which has resulted in him not having lunch with his friends (at all so far this school year, almost a month) due to the delay. At his age it hard for him to understand the obstacles that we are coming across but little by little I have faith we will be able to work something out with the school.