Diabetes as your child transitions to adult: It’s hard to let go

March 27, 2012By 15 Comments

Hi Guys — back from a blog break. I am really hoping to hear from some adults with Type 1 on this one — how much do you still need your parents and expect them to intervene for you? At what age did you begin to not expect accommodations? We parents (mostly me) can learn from you! The same goes for parents whose kids are now adults. One more aside: I am going to write out Type 1 Diabetes the first time each blog and then refer to it is T1D from here on in.

Lauren (second from left) with some of her Sorority Sisters. Her roomie (last on the right) knows how to help her if needed -- but Lauren taught her that on her own.

I was at an informational session on Type 1 diabetes recently and a presenter was talking about transitioning a child with T1D to college. Since I’ve done this (oops, just almost sprained my arm trying to pat myself on the back), I decided to sit in and here what the person (a medical expert) had to say.

I was a bit surprised. Because this person was suggesting to these parents just about all the same things we did for our kids in elementary school and high school. Meet with teachers. Explain Type 1. Ask for special consideration if you are high or low for a test. Have an adult or RA near you trained in glucagon administration.

And I thought: Maybe not. I don’t quite agree. And here’s why: College, as my daughter with T1D pointed out to me, is “practice for the real world.” And like it or not, the real world eventually becomes where our loved ones with diabetes dwell. There, for the most part, they are going to have to find a way to do their job or care for their kids or drive their car or the million other things an adult has to do, without special consideration.

At the same time, a mom of a high school girl with T1D was asking if her child should be excused from not being able to win swim sprints if she is low or high, and not be penalized on her high school team. It’s an interesting dilemma. After all, it really isn’t fair that diabetes gets in the way of things. But it isn’t fair that someone with one arm had to work twice as hard to swim fast either. I know that’s a basic example, but really, we are not the only ones dealing with things not being fair.

So the question is: when do we start to back off of fighting for our kids’ rights? In some ways, we never do. We want equal opportunity for employment. We want funding for research for a cure. We want better tools available for all. We want good insurance, darn it. We want people to, once and for all, understand our children did nothing to cause T1D to come on. We will fight until the cure for all of that. Some of the most passionate advocates I know on this earth are parents still fighting these fights for their adult children. (Leah Wooten  (the very first chair and engineer, really of the successful Promise to Remember Me Campaign ,  Lisa Reed and all of you parents of adults, take a bow).

But in other ways, the time comes that we have to just let them be, figure things out and yes, sometimes bite our lip when diabetes messes something up, “fair” or not.

It’s hard to swallow if you are the parent. For as long as they’ve had T1D, we’ve been their advocates, hammering out solid 504s, battling teachers who don’t get it, making calls on behalf of our kids to make sure situations are safe and right for them. Much as I’d love to be able to walk into my daughter’s first workplace and set up a safe, fair and embracing environment for her, (and find a spot where I can hide and pop out with glucose tabs or a correction shot whenever she needs it. I picture it like that desk nap area George Castanza built on Seinfeld. I’ll be fine there. I promise I won’t make a peep), I cannot. It has to be up to her. And in many cases, she’ll have to just deal.

That’s why my daughter did not tell her professors she has T1D when she went to school. She did make a visit to the health center (the director of the center was wonderful; she gave Lauren her cell phone number and told her to call if Lauren ever needed anything and she was no on duty. The health center is great too though; in two years Lauren has never had to use that cell). She also showed her roommate what a glucagon kit is, where it is and how it works and also said to her, “Look, if you are worried about me and are scared, just call 911. It’s better than doing nothing and I’ll be cool with it.” She told her sorority sisters and boyfriend about it, and since her group of friends always have one designated “non drinker” at each party, that person always knows if Lauren is in trouble, get help ASAP. So yeah, she set things up. But she has not asked for anything special.

While I’ve heard of parents helping kids set up special situations for their college kids (and my daughter has actually recently decided to register with the disabilities office at her college in case she has a diabetes related illness that keeps her out of things for a long time), we chose not to, at Lauren’s lead. So far, it has worked. With some kinks.

One morning last year she had a Spanish midterm and woke up throwing up from ketones and high blood sugar. She called me and I talked her through getting better, as the clock ticked towards the exam time. With 15 minutes to go to get there, she still felt miserable. She asked me for advice.

“I guess you can either email him now and tell him you are very sick and explain highs with diabetes, or you can drag yourself down there and take the test,” I said. “It’s up to you.” She thought about it for a while, and since she was no longer actually throwing up, decided to suck it up. She did okay on the test. Not a 100. But okay. More so, she saw that she could power through when she had to (admittedly, had she become sick 40 minutes later she probably would not have made it. But if a kid without T1D had a stomach bug, neither would they).

In another class, she had to write a final speech on some kind of mission or non-profit and get the class to “believe in it.” (Talk about teeing it up for a kid, eh?) Of course she spoke about life with T1D and the JDRF and all they do. She got an A, and a note from the professor that said something to the effect of, “Wow – never seen the entire class, including me, cry before. And I’m very impressed at how you just seemed like any other student in the class. You’ll go far.” In my head as she told me this, I whispered, “Despite diabetes.”

I cannot explain to you how hard the separation process has been for me as a mom. I want to be Lauren’s warrior mom and protector forever. I want to make it all okay. I want to catch her before she falls and fix every scrape and explain to everyone how brave and brilliant and determined she is in the face of great adversity.

But it’s her turn now to take the reigns. College is her practice for the “real world.”

And it’s my time to figure out my new place in her life: advisor, yes. Fixer? No. Warrior mom on Capitol Hill and anywhere you can find me fighting for better tools and a cure? Forever. That’s the one role I never have to back down on.

It’s a tricky life, this diabetes thing. And sometimes, the best thing we can do is not do. Man, it sure is hard.

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Comments (15)

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  1. Krista Middleton says:

    I AGREE. Diabetes is a personal thing to me. Been living with it for 26 years. BEFORE you even considered bringing a meter to school. I didn’t have a meter with me at school until I was in 11th grade. I had T1D before I began kindergarten. I never once passed out at school, and I don’t remember even going low at school until mid high-school. I taught the people closest to me what to do and then dropped it. I have diabetes, but I don’t let it ruin my life. I would have hated it if my parents did some huge class discussion on it and made me the center of attention over it. Its MY disease and I will do it on my own. In a case of emergency you can always get help, or help will find you. Personal opinion, I know. I never once had these 504′s that schools now have. I think its a little silly personally. I didn’t carry a meter with me when I went out of the house until I had my kids. I don’t have a “diabetes bag” with tons of things that I could possibly need just in case. I have a juice in my purse, and a tub of glucose tabs in my car. I try and remember to put my insulin in my purse when I leave the house, but sometimes I forget. And you know what? After 26 years with this disease I’m still kicking strong without any complications. No eye problems, no kidney problems, no anything. Its a disease that we need to manage not make it the center of our lives. Its so hard to watch parents who go crazy over the management of every tiny detail. It doesn’t have to be that hard. Do the best you can, figure out what works and what doesn’t, let your kid take charge: its THEIR disease. I was 3 when my parents taught me to give my own injections. THREE!!! I did them regularly until I was about 8 when I said “I will never have needle help again.” I have let my 4 year old do my needles, and I have had 2 kids who were diabetic sibling that I used to baby-sit give my needles (that was fun, splitting my dosage in half and giving them each an arm to practice giving needles. Yup, I was their needle dummy haha.) but those are the only people other than myself who has ever given me my needles since about the age of 8. I started regulating my own insulin really really young too. My parents knew I would be on my own and they made me take charge. I have lots of friends who I never even told I was diabetic because it didn’t matter. I do my stuff, and if I ever need help I will say “I feel weak, get me juice.” I don’t think that parents doing all of their kids diabetes things is helping their child. I can’t imagine having an adult do the things that a child is capable of. A parent needs to teach their children, and teaching their kids how to be successful with their diabetes is no exception. The younger you do it, the better off the kids will be. No age is too young to learn how to live well with this disease…

  2. Katie says:

    Good one, Moira. And I spent the entire blog shaking my head…that advice to go to the college campus and do an elementary school thing with the professors! Helicopter parenting gone wild. My son would have KILLED me if I did that.

    I’ll admit, we only talked to the health center at teh first college.

    So, at the second college, I stepped up to the plate and talked to the RA in the dorm. That got my son labeled “with a drinking problem” (since I had said, please, if you find him unconscious, don’t think it is a college student drinking thing, he has diabetes.) THAT entailed a special meeting with the Residence Dean, and finally, I threatened to sue them. (the great California big stick)

    So, it can backfire, and you can find yourself told, as I was, after only a tiny bit of intervention “We have diabetes information up the WAZOO in here, and I don’t need those pamphlets” (that’s when I threatened to sue if my kid died on their watch) What a lady dog she was.

    However – I’m with you. Let them learn to deal.

  3. Gloria Dowling says:

    Oh God! We’re 18 months out from this and I don’t know how I’ll cope. Gem will be great, I know. This is so eloquently written – I feel it with every fibre of my being. Great blog, Moira. And thanks. x

  4. krisfitz says:

    Great post! Taking notes. Most people have “something” that trips them up at times – not always as serious as T1D, but often difficult. I remind myself of this a lot at the playground when I find myself angry about carelessly half-gnawed granola bars. Never know what that kid or parent is going home to.

  5. Lydia Oppen says:

    Thank you , AGAIN, your writing hit so close to home. Alex leaves this fall for college and I am so worried.Thank you for yor wonderful insight.

  6. shannon says:

    thanks for this fantastic post; i look forward to reading more comments from adults with T1 that have been through this transition to hear about it from their side. and you deserve that pat on the back, for sure! :D

  7. krisfitz says:

    BTW – Keri has a great parallel guest post asking “how do you handle lows when they interfere with your work performance?” – kind of takes your question for kids/young adults one step ahead into adults’ working lives: http://sixuntilme.com/blog2/2012/03/guest_post_leah_moynihan.html

  8. Heidi Reiter says:

    As my son has transitioned this year from elementary to middle school, I find this to be a very thought provoking article. Lately I have been doing a lot of woul searching about this topic, and asking myself questions such as “how can I get my son to be more independent?” I believe I have fallen into the rut of overreaching and taking too much control of his diabetes, instead of allowing him to stumble and to deal with it himself. I want to teach him good habits but I can see the rebellion becoming stronger as he heads toward puberty.Reading your article and some of the other comments puts this in perspective, but it is so difficult to let go.

    • moiracmcc says:

      Heidi– the only thing I will say is I actually think I gave my daughter TOO much freedom in middle school. Should he begin to remember his own glucose tabs or whatever? Yes. Should you be seeing him check bg and take insulin? YES — not every time but make sure he really is doing the “hard stuff.” That said, give him chances to win trust — going to sleepovers or field trips etc….. he’s still young! Hang in there — it’s not easy but he’ll grow up to be a fine man! I also have this crazy hope that boys are easier than girls in the teen years…. for you!

  9. Shannon says:

    Great post! I am adult living with Type 1. I was dx in 1992, one month before my 18th birthday so my mom has never had to manage me, for a lack of better words. I have always managed it myself. And I know I was not good enough about telling everyone. I always told everyone in my inner circle, but not my professors, etc. And that almost bit me one time when I was taking a final in a class. My pump reservoir ran out (my bad for not checking it) and it was beeping constantly. I was starting to get stressed/worked up (as if I wasn’t already enough) and I knew my sugars were rising. If I had told my professor ahead of time, that I was on an insulin pump … it might have gave a better explanation as to why I was being so “disruptive” during the exam.

    I ended up failing the test. I went in afterwards and explained the situation. The prof said she wished I’d told her sooner, so she could have been prepared. I cried. Not to get her sympathy, but it was a realization that I have this thing and it’s a part of my life – all the time, and even during college finals. She ended up passing me. I had carried an ‘A’ all semester in this class, so she knew what I was capable of.

    My point being …. students should tell their professors -if nothing else, so they know if something were to happen in class, he/she could be better prepared.

    • moiracmcc says:

      Thank you so much!!! So interesting and a great point. Lauren will read this since she reads the blog. I think there is a happy medium! (This is a pump — if I start beeping I’m not goofing off and texting… etc)!

  10. Anne says:

    My son is a junior in high school. We have a 504 plan because we have to have something in place for accommodations in standardized testing. Otherwise, I expect him to explain to coaches, teachers, etc., what he needs to explain. And he does. Fortunately, he goes to a small school and has a reputation as a reliable kids who doesn’t make excuses or try to get out of doing things. He had some difficulty with a coach who is also one of his teachers this year, but he approached the teacher and explained the situation. Things have been better since.
    My husband is a college professor. If a student, especially one who has shown himself or herself to be a serious student, asks for consideration because of a medical condition, he is accommodating. I think most faculty are. They want students to succeed. I would also add that when a parent tries to explain his or her child to a professor, the parent only succeeds in making the student look incompetent or immature.

    My son is eager to go away to college. I don’t want to undermine his confidence by suggesting that he can’t take care of himself

  11. Lori Temko says:

    I noticed the last comment was back in 2012, do people still use this site? I have a daughter going off to college and I’m terrified.

    • Moira says:

      Lori that was just the last comment on that particular post. The site updates regularly. Happy to help you if you need it. Lauren is a senior in college now!!

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