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.
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.