Jealousy — FFL & Disney-style

OK. I’ll admit it. I’m jealous.

I’ve been reading all the blog posts about FFL — the interesting/informative sessions, the superstar speakers (you know who you are!!), the support groups taking place in the pool, the green bracelets…  Especially all those green bracelets.  

(image from Kerri Sparling* of Six Until Me)

I would love to be in the middle of a crowd where my daughter and I were the “rule” (thanks for that great post Karen Graffeo) instead of the exception. Of course, since the bear is only 5 (“and a HALF“), it would be more for me than for her right now. Right now, she is still pretty sure that she is the rule in all things anyway.

The other night at the playground I observed the first time I’ve seen her get frustrated with another kid asking about her insulin pump. The other child was probably 2 years younger and definitely wasn’t picking up on the fact that the bear felt that the subject was closed. Since her diagnosis, she has been at school/daycare with the same group of kids and our social circle is pretty small so she doesn’t have to explain very much. Watching this particular encounter was a glimpse into some of what we might run into when she starts Kindergarten this fall. None of the kids in her preschool are going to the same school so she will be starting fresh.

I was diagnosed much older than she is, so I never had to deal with my diabetes in a school situation (until grad school when no one really cares). I feel very lucky that there is a social skills professional who works closely with all the Kindergarten classes — I know I’ll be able to call on her help if we need it. The social worker associated with the bear’s endo practice suggests following the bear’s lead. See if she’s feeling uncomfortable or bothered by her classmates’ questions and if so, then work out a plan to handle it with her teacher. We’re also meeting a potential babysitter this weekend — a young woman with T1 who went to diabetes camp and worked as a counselor at one. She has the same pump as the bear (though a different color — the bear changed colors with the last replacement we got), and should be able to manage diabetes in a much more natural way than even the best non-T1s can.

I’ve always known in a theoretical way that having T1 could make our daughter feel different from her friends and peers. All of a sudden, it’s seeming much more real. And, this is just Kindergarten – let’s not think about middle school yet.

So, I daydream about being at FFL, seeing her being just like most of the other kids there — wearing a pump, chomping glucose tablets, reporting carb counts – and about when she’ll be old enough to go to diabetes camp and have a week (or two) of being the same as everyone else. And, to be more selfish, I daydream about both talking with other T1 adults AND parents of T1 kids — feeling like there are so many people out there who get it.

Someday FFL, someday!

*who incidentally went to diabetes camp with someone I work with — small DOC

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12 Responses to Jealousy — FFL & Disney-style

  1. Jessi Panke says:

    The fact that you have a potential babysitter with T1 is amazing! I really hope it works out for you. I feel the same way about FFL, I really wish I could have gone and I’m so hoping to some day.

  2. Sara says:

    I think FFL helps everyone no matter what the age or situation. Hope to see you there next year!! (if I can afford it)

  3. Meri says:

    I hear you. I was blessed with a scholarship this year. But what about next year? My heart breaks thinking about it. Your daughter has you…you are making a bigger difference than you think! She has “same” by her side everyday! Hugs to you!

  4. Tina says:

    Hi there. Just so you know I found your blog because my of my dear friend Sara of Moments of Wonderful. She shared your post on FB. I love her.
    I am a mom of 2 kids with D and a 3rd that will likely be diagnosed in the coming months. (Thats a whole nother story and not one for a comment on your post)
    I am writing because your little Bear will start kinder soon and you shared some concerns.
    My youngest was diagnosed when he was 2 (nearly 3). After his diagnosis I thought I wouldn’t send him back to mothers-day-out where I also worked as a teacher in another class. Two weeks later he was all like “Hello when do I go back to school”. He walked into his class that first day back and told his classmates to gather-round. He checked his blood sugar right in front of them all. Answered some questions and grossed them out by licking his finger. The world continued to rotate and life went on. Fast forward 3 years to his first day of kinder. I had met with his teacher (who also happened to be my older son’s kinder teacher a couple years prior and was a friend) before school started and she suggested my son tell the class himself during introductions. Thus – day one he said gather-round my friends and did his little deal. he should them all his pump, checked his sugar and told them he could still have all the cupcakes and birthday treats they brought because he didn’t have a peanut allergy. Again the world continued on its axis and life went on. A few times over the next few years new classmates would ask questions, he’d answer them and life went on. We moved to a new state last summer which meant a new school. His new teacher wasn’t at all interested in diabetes and made things difficult for us. She isolated my son to keep classroom disruptions to a minimum. I didn’t know this and my son did not tell me. This teacher did not invite parents into the classroom so I felt isolated too. It was November before it all came to a head and I became aware of what was happening. That teacher learned very quickly not to screw with our family. After my son was rescued from isolation all was well – his teacher was still a bully but his new friends accepted him and no one bothered about the diabetes. For a How-To speech he had his entire class inject oranges with water using syringes. I was present to ensure the safety of the kids handling the syringes and other parents were very excited and pleased with the hands on demonstration.
    My daughter was diagnosed at age 9 near the end of 3rd grade. Her class was very supportive. She explained diabetes in front of the class the day she returned to school. Life went on.
    In sixth grade my daughter expressed her dislike for all the questions at the middle school. Is that a phone? Why do you have a pager? Your’e not allowed to have an Mp3 player. Etc. Also, the pump according to my daughter did not look good with skinny jeans and skinny t-shirts. Thus she decided to go on a pump hiatus. Going back to shots for 3 months wasn’t exactly easy for me but it was what she wanted. I supported her decision. After a conference that included my daughter signing a song she wrote herself to open the conference she met Kerri Sparling of SixUntilMe. Kerri wore her pink Animas Ping on her pocket – visible to the world. My daughter put her pump back on that night.
    Thinking back about what all I just shared makes me worried that you might think my kids are something special. To me they are amazing but they are no different than all the other kids I have met with Type 1. Our T1 kids are stronger, braver and often times smarter than their peers. It comes with having and owning Diabetes. I’m certain your little Bear will do wonderful. I agree with the professionals that suggest you follow her lead. We can’t make our kids do anything – I think their stubbornness also comes with diabetes.
    sorry to write such a long and wordy comment. Im glad Sara shared your blog. I hope to see you around in the DOC – thanks for sharing your stories.
    Oh Also – I do hope yall make it to a FFL. We’ve been to 4 and our first was 4 months after Sugarboy was diagnosed in 2007. he was 3 and he walked around like he owned the place – sounds a lot like your Bear – they are the Rule and they just seem to know it at FFL.

    • Tina – I’m so glad that Sara shared this blog with you too!! Your experience is wonderful to hear. Our daughter is generally just awesome at being herself and paying no attention to the fact that she wears a pump or tests her bg. She has certainly taught her share of people about how to test her bg! I have just been wondering if she would feel as comfortable in the more structured (and totally new) environment of public school. I’m so glad to hear about how great your kids handled it (and so sorry to hear about that one teacher and school – grrr.). We are fortunate to have a great school, nurse, and K teacher (we got to find out who it was early and her daughter was diagnosed as a young adult so while she doesn’t have experience with the younger ages she definitely “gets” the day to day management stuff.
      I’ve added your blog to my reader so I’ll definitely be following your stories. Thanks again for your comments – it means so much!

  5. Katy says:

    Hi! I hope you get to go too. This was our 2nd FFL. I learned so much each time. I don’t think my D-child likes it very much, but I might even go without him. I mean, he likes *some* parts of it but he’d rather be at the beach.

    I wish there could also be mini FFLs in more exotic/natural locations: FFL Belize in February? FFL Bermuda in April. Etc.

    • Hi Katy – I would totally go to Belize in February! I tried to leave a comment on your blog (you are bigfoot katy right??) yesterday but kept getting an error message. I really appreciate your willingness to try things & make mistakes — good reminders for all of us. AND, I hope you do figure out korma someday… I’ve been trying to manage Indian food with my own diabetes for over 12 years and haven’t succeeded yet 🙂

  6. Jenn says:

    I also dream of being able to attend FFL…the stories that have been shared make me want to go even more.

  7. Kerri. says:

    Who do you know that went to camp with me? 🙂

  8. Pingback: So Close (or T1 still seeking T1) | Principles of Uncertainty

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