Hi Everyone,

 

My 18-year old daughter is a freshman at Emory University in Georgia and was diagnosed with Type 1 back on Sep 7 just about 2 weeks ago. Our home is in the Los Angeles area, so, she's some 2500 miles away. I'm at a crossroads and don't know what to do and need some help, suggestions, etc. Perhaps a little background first...

 

The first couple of weeks of school was particularly tough for her as she was struggling big time with homesickness. After a week I instituted a nightly conference call for her with me and my parents, brothers, sister, etc, and it really helped her as she was starting to find her stride. Then... wham!! she's diagnosed with Type 1. I was on a business trip when she called from the health center at school where they told her she needed to be hospitalized to get her blood sugar down from 538 as she was likely diabetic. I was in Phoenix at the time and immediately flew to Atlanta and was in her hospital room at 9:45PM that same evening. I've been here ever since helping her get adjusted to her new life as a Type 1 diabetic and am planning to head home tomorrow afternoon after almost 2 weeks being here. She's scared and so am I........

 

My daughter and I have a phenomenal relationship. She knows that I will be there for her in any way whenever she needs me. Our bond is exactly as I imagined it would be even when I told her mom all those years ago when she was only 2 that although her mom and I were divorcing there was no way that I was ever divorcing my daughter!! I've always encouraged her to face the difficulties in her life head on and to tackle things as they come. She's extremely capable in just about every way in life - even when she doubts herself she gets surprised at what she accomplishes. Maybe this is too much all at one time?!

 

Freshman year is hard enough for young adults as they head out on their own trying to make their way in a sea of strangers, responsibilities and freedoms they've never before had. Adding a new diagnosis and trying to manage her insulin, carb counting, prescriptions, supplies, snacks, BG testing, ketones, lows, highs, 2AM tests, calling in her levels, doctors appointments, etc, along with classes, studying and all the other freshman-year-stresses just seems waaaaay too overwhelming!!

 

A lot of you on this discussion have been dealing with all of this for years... knowing what you know now, if you were in my shoes then what would you do? Would you encourage her to take a semester or a year off to learn all of this Type 1 stuff first and then go back to tackle school? Would you tell her not to change her life on account of this disease and simply keep moving forward and tackle this day-by-day? Would you take a leave of absence from work to go live near her for a few months while she attends school so you can help her tackle the diabetes simultaneously?

 

I am completely lost and have no idea which way to turn!! And, I haven't even yet mentioned my irrational fear of her slipping into a low while sleeping and I'm not there to test her in the middle of the night!!

 

Thanks for any encouragement... guidance... or anything else you can give!!

 

-Schmaps (aka Rob).

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Replies to This Discussion

I want you to know that I totally relate to your post. I live overseas, in India, and my daughter was diagnosed one month into summer before her freshmen year. She was enrolled in college back in the USA but not in our home town. We had 3 weeks before returning to India learn EVERYTHING about diabetes and our role as parents in supporting our daughter, as well as figure out all the medical complexities of doctors and insurance. At the time I had the similar questions to you: should I take a leave and stay back to help with this transition? How was she going to respond? What about the demands of school- and in her case adjusting to life back the in the USA after a lifetime abroad? My heart ached for her. It seemed really tough in terms of timing.

In our story, my daughter surprised everyone including herself by embracing the situation in a very positive and independent way - from the beginning. I was prepared for any kind of response, and would have respected whatever her experience turned out to be but was so grateful that she really took hold of this. That enabled me to get on the plane and leave her. I know this could change and that every kid is different so have no ideals that I would expect to play out in a certain way. She would tell you that her time of diagnosis is the best because she had her carefree childhood, she was setting her new life patterns ( food, social, work, etc) and could figure this in at that point rather than later setting and then having to recalibrate everything. She feels that she is old enough to be independent with her healthcare and so has not had to go through the transition of having had parents manage and then having to manage herself.

It was my perception that she had a first year in college where her academics were more background and her life patterns and health were more foreground. She left a major study direction that she had been accepted into b/c she observed that kids in that program were under a great deal of pressure and worked wild schedules to accomplish the work required. She couldn't see herself in that. This year she seems much more engaged in her studies and has added more elements to her self care like more exercise.She is on a pump and a continuous glucose monitor. She has a good health care team and seems to have created a social network that accepts her and supports her as she is. One challenge that has surprised me has been lack of support from teachers. She has been given derogatory nicknames ("Insulin Drip" or something similar), not letting her have a snack in a long final, not being flexible about times of blood sugar impacting her ability to do something required, etc. As teacher, I find this shocking but figure that the college scene is probably differently focused on the whole child than we are in lower levels. However she has advocated for herself in this either with the teachers or student services. And we both know she has to learn to anticipate balance all these things well beyond school situations.

I have not had a chance to read all the pages of responses to find how your story is unfolding but would love to know how your daughter- and you - are doing with this. I am certainly learning much about letting go, trusting, being there but not over-parenting -in general and around the diabetes. I am grateful to have support of these groups and glad in particular to find folks like you who have an older T1 kid. We aren't in the front lines with them and it certainly isn't as draining yet it brings its own challenges - living with uncertainty and distance being some of them.

Sending warm wishes of happiness and health to you and your daughter,
Adele
Hi Adele,

Thank you sooo much for posting this reply as well. My daughter is doing phenomenally well right now with just about everything. She hasn't grown out of her homesickness yet, but, I think the diagnosis and everything around that has delayed that a bit. Plus, she has a great relationship with me and my sister (who is almost a surrogate mom to her) and loves her family dearly, so, I think it'll take her a little longer than most kids anyway. She has a followup appointment today with her endocrinologists office and was really wanting me to be there with her, but, she's heading out on her own and will do just fine! And, I actually tracked her blood sugars over a three week period including averaging how much she drops during sleep - 29 points - which helped ME be able to sleep a bit better! So, like I said, she's doing great!

I did want to ask you if your daughter registered with the Office of Disability Services (ODS) at her school. Type 1 Diabetes is covered under the American Disabilities Act and, as such, her teachers MUST allow her to eat or drink during class... allow her to schedule exams so too many aren't on the same day... and not show disrespect to her because of her health condition. Would they call someone crippled for like and bound to a wheel chair some derogatory name because of it? I doubt it! And they shouldn't for this disease! Furthermore, they can be fined or disciplined if your daughter is discriminated against in any way because of her condition. I strongly urge your daughter to get ODS involved if she hasn't as of yet.

Lastly, and I plan to ask some others about this as well, did your daughter happen to start taking birth control in the year prior to diagnosis? My daughter's mentrual cycle was fairly weird and her pain was pretty high. Her doctor recommended going on the pill to regulate the cycle and ease the pain which did actually help her tremendously. However, I've heard rumblings that people are thinking that the pill could trigger Type 1 with girls that have the genetic markers for the disease. So, I'm just curious (if this is too personal a question, then I understand if you don't want to answer)...

Thanks again and hoping that things are going well for your daughter and you!!

Warm regards,

-Rob.
Dear Rob,
I appreciate your response. I am so grateful to hear that your daughter is doing well with her new life. It seems you are doing well too. Even if it makes being apart harder I really believe that the deep bonds she feels with you and other family members will continue to be a great source of strength for her.

My daughter has been very proactive about talking with her teachers, claiming the protections of the ODS, and has advocated for herself in each of the cases where teachers have been "out of line" with honoring her needs and health reality.

I am intrigued about the birth control question and would like to hear more. Do you have any links to studies or info on this?

I am still reading through this discussion thread and am looking forward to hearing how all this takes form for you and your daughter.

Be well!
Adele
Hi Again Rob

If you don't mind I share a link to a post I wrote for folks new to insulin and one of diabetes mind games. Diabetes plays with our heads a lot. Mostly with our sense being masters of our universes. Insulin needs can vary, particularly at first. This feeds into the uncertainty. Anyway for what it is worth here ya go:

http://www.ydmv.net/2008/01/newbie-advice-i-insulin-resistance.html
Bennet,

Are either of your T1D kids away at college? It's hard for me to completely relate with my 2nd grader here, but your kids are older, so you would have a better perspective, like many of the others who have responded, about coming home or staying in school.

Lorraine
I have a 2nd year student at film and tv school at NYU. (the brains behind theBetesNOW.com) She isn't D but she has chronic medical needs that are as challenging as T1.

That school in that college is her dream. My roll as her dad is to help her live her dream. A big part is trusting her on her own. We have had frank conversation about her health. Chronic medical conditions make moving out seem harder.

In reality those medical issues are trust catalyst. A catalyst in a chemical reaction makes something happen differently. In this case the medical needs make for more trust faster. We have to learn to trust our kids. As you know with diabetes it is hard for a parent of a second grade child to let a kid go stay overnight at a friends. Those overnights are good for us, we get to practice trust. Adding diabetes to the college away from home changes is a huge additional burden on any family. She need to be trusted.

Rob didn't get the steps along the way, the sleepovers as it were. Yet he talks about the relationship they have and family support system they have built. I think everything happens for a reason and part of the reason for the phone support from home is for that to be in place now for the diabetes support. My two cents is Rob should return home and teach that support system what it needs to be a diabetes support system. Oh an I hope he has an unlimited cell to cell calling plan.

The first year I I attended Friends For Life (Rob that is an international conferences for families with type 1) I listened a teen from the other side of the world talk about her struggle in father daughter relations about trust and diabetes care at university. Listening to a young woman from the Untied Arab Emirates talk about her family made me think a lot about mine and helped me send a young woman to New York City and trust her to not only take care of her medical needs but pursue her goals.

Nobody ever said parenting is easy. But seeing your child thrive following her dreams is magic.

Here's to Rob and his daughter seeing the magic beyond the diabetes.
Have a good heart-to-heart, putting the options out there and listen to her responses. Your daughter will make the choice that is right for her. Hopefully she can continue with her studies as it will help her emotionally to be able to do so.

My son is 17, he was diagnosed at age 10. This Sep is the first time that he withdrew from participating in something that is very important to him, while he works out how to manage his diabetes. David tried out for and was accepted to play junior B hockey. He has always played competitive hockey and the T1 diagnosis kept him off the ice for a couple of weeks but never held him back. The problem is with the longer game at the junior level his BG's were spiking too high during the game and then falling too low overnight. He made the decision after a few games to withdraw from the team and go back to midget play which is a shorter game.

We have now booked ourselves for a seminar on sports and diabetes and he will look at some options so that he is comfortable moving back up to the higher level of play next season. I know this is totally different as he is already well versed in his diabetes care and it is only a game, unlike something as important as one's education. David takes his health very seriously and recognized that pushing himself to do something that was having an adverse effect on his body needs to be re-assessed. He needs to develop strategies to safely play the longer game. This might be as simple as adjusting to wearing his pump that he was always able to remove during play in the past.

There is a certain element of fear attached to a new diabetes diagnosis and similar fear negotiating changes in one's diabetes care. Your daughter at this point will know if she thinks she can manage both the new diagnosis and school at this time, or if she needs to step back from school for an adjustment and management period. She is lucky to have your support.

Cheryl
Rob, I know how you are feeling. Very, very overwhelmed...I can tell you before you realize it, it will become normal again. I remember sitting down to eat when my son (11 now, was T1 at 10) was still in the hospital and wondering (sadly) how was this ever going to work? But within two months it seemed like the normal thing to do?? Strange how we adjust. I also have another son (non D) in college and how stressful and new that can be. It sounds like she and you will work it out day by day and get through it. I agree with another post to get people on her floor (the RA) to look in on her. Most of all I would want to make sure she feels comfortable in managing it herself. Best of luck and keep us posted.
Rob,

It's Lori Ann again. My son's college has a Student Services area and he has registered as a student with disabilities. They will notify his teachers, he must discuss it with the teachers too. His Doctor faxed a plan of action and Dylan has been allowed to have snacks in class if needed. This group is also available for counseling, assistance, advice, they will advocate for him if he misses class or assignments due to his diabetes. It seems that they will watch over him too and help him get through his day to day life and give him assistance on how to adjust. Just a thought! I haven't heard from Laurie Davis yet but I am sure it will be soon.
Take care, Lori Ann
Hi Lori Ann,

Sarah is in Oxford, GA some 230 miles away from Savannah, but, I still think it would be great if Dylan and she were able to connect. Please feel free to have him friend her on here (she's "Sweeted Fease") and on Facebook at http://www.facebook.com/home.php?#!/profile.php?id=1336033892

Thanks again, Lori Ann. And definitely let me know when Laurie contacts you!

-Rob.
Hi Rob,

Laurie Davis contacted me. She has registered to this site and is waiting for approval. I am very confident she can assist you as well as she did for me. Also, my son Dylan is working toward contacting Sarah. I will talk to you later. Hang in there.

Lori Ann
Hi Everyone!

I'm sure you all know already, but, these responses have been tremendously helpful to me and allaying some of my fears. The Childrens Hospital of Atlanta and their diabetes educators, doctors, nurses, etc, were amazingly helpful. Sarah (she joined as "Sweeted Fease" as well - one of my many pet nicknames for her!) is in touch with them everyday calling in her blood sugars and asking questions when needed. I've even called them a couple of times to ask questions regarding snacks, exercise and other things. I'm definitely comfortable with their resources...

At school, Sarah has registered with the Office of Disability Services (ODS) to which we've had her doctor send a letter explaining her disease, her regimen and what they should expect with respect to Sarah's highs, lows and overall day-to-day management. We've met with all of her professors to let them know what's going on and what Sarah's going to need moving forward (e.g. eating or drinking in class; possibly rescheduling an exam if sugars are too low or high just prior; sick days may occur; etc.). We've also discussed with her roommate, friends, Residential Life Coordinator, RA and other staff on the disease in general as well as to watch for signs of lows, how those should be treated, and, in particular, where her glucagon kits are (one is velcroed to the inside of her dorm door!) and how to use them. We've even had her roommate and friends give her a normal insulin shot so that they won't be scared to "stick" her in the event there's an emergency and the glucagon is needed.

Her mom put together a binder for her organizing all of her contacts, information, daily logs, exercise info, prescriptions, doctors appointments and several other things. Her mom had drilled "super responsibility" and "super organization" into her from the point that she could walk almost. Over the years I always felt that Sarah needed to be allowed to be more of a kid by her mom, but, now I'm thinking that life (the universe, God, whatever you want to call it) works in such mysterious ways as I'm now "super thankful" that Sarah has those life skills so ingrained into her!

Sarah's attending the Oxford College at Emory which is some 30 miles from the main campus out in the stix of Georgia, so-to-speak. Her doctors are at the main Emory campus at the Children's Hospital of Atlanta, so, a ways away. Her primary care physician is about 8 miles away. Pharmacies, grocery stores, Walmart, etc, are all more than walking distance. She's a bit isolated on that campus, so, we got her a car as well so she can run to wherever she needs at a moments notice if she runs out of supplies or whatever.

Her mom and I are still working with doctors, insurance, ODS, and others with all the administrivia associated with handling this disease and ongoing management. Eventually she'll need to take over those responsibilities, but, for now, the more we can take off from her plate the better, I think.

So, all-in-all, I think she's pretty well set from an organizational and resource standpoint. It's the emotional side of things that will have to play themselves out. I arrived back home in California last evening and she was definitely very sad. She texted me her 3AM (she doesn't go to bed til like midnight most of the time) BG and texted me when she awoke in the morning. We've texted back-n-forth a few times and I just spoke to her at her lunch time. She's moving forward and I'm hopeful it'll all work out for her to not have to put her life on hold because of this BS disease. But, if she ends up saying that she just can't do it all right now, then I'll go bring her home. I'm hopeful that other kids that have endured these experiences can connect with her and share their trials, tribulations, successes, joys, etc.

For those of you that have children of teenage, college or post-college years that would like to friend her on Facebook as well as on here (again she's "Sweeted Fease") her FB page is: http://www.facebook.com/home.php?#!/profile.php?id=1336033892

If there is anything I'm missing or other suggestions to help her cope and get through all of this, then by all means feel free. I appreciate every word!!

-Rob.

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