Monday, January 25, 2010

Grown Up CWDs & Todays Parents of CWDs- Did You/Do Your Kids Participate In Their Diabetes Care?

In the title, "Did You" refers to adult t1's who were diagnosed as children. I think there was some confusion with the title.

When I was a little girl and was first diagnosed with Diabetes, my parents MADE me take ownership and take an active role in my diabetes- whether I wanted to or not.

Looking back, I'm so glad they did- it helped me to become more independent and accepting of life with diabetes...for the most part. I believe they give me enough rope so that I had a long tether, but not enough rope so that I wouldn't jet too far off course...for the most part.

When I first came home from the hospital, I was afraid to give myself shots and my parents got that - I was 8, and I was afraid of needles. So my job was to roll the insulin bottles in my hands so the both the Regular and NPH would warm up a bit and the NPH would mix properly.

I was also allowed to fill my syringe, (under their hawk eye like watch) just like I had learned in the hospital. I think that was a good thing because they really didn't want me to forget what the CDE's had taught me while I was admitted. I'd spent 3 weeks injecting saline into an orange at Children' Hospital in Philadelphia. FYI - I was not supposed to be discharged until I could give myself a shot - which I couldn't bring myself to do.
Anyway, my parents would watch as I plunged a syringe full of air into the bottle, and looked on as I tapped any air bubbles out. Then they would give me my shot.

It took me about 3 months before I could actually inject on my own, but when I was finally able to take the plunge (total pun intended) I felt extremely proud and grown up. I also realized it didn't hurt as much when I gave myself the shot because the fear factor was gone. And because I could inject on my own, sleepovers became possible.

Since it was the time known as the diabetes dark ages, we tested for sugar in the urine, not sugar in the blood - and my parents set up the Diabetes Chemistry Pee Set in their bathroom.
Looking back, the fact that it was in their bathroom was a huge deal, being that they had six kids, mom and dad's bathroom was their own personal oasis from the chaos of a big family.
Of course my dad was testing his urine as well, so maybe it made sense.

Any who, I felt like a bona fide chemist as I took the dropper and added 5 drops of water to three drops of pee (or was it the other way around?) and added the fizzy blue Clinitest tablet (which resembled a Sweet Tart) and wait for the results. The glass test tube would get super hot, and I burned my fingers more than once.

I distinctly remember bringing my friend Theresa home for lunch one day a few months after I was diagnosed (back then, my grade school allowed kids to go home for lunch ,) and she watched amazed as the test tube boiled and bubbled. She was stupefied at my scientific skills regarding "the betes." I felt so proud and worldly!

Now as I got older, I wasn't always so proud of my numbers, I was down right ashamed. And ever the people pleaser, I started to fib regarding my urine readings - AND I GOT CAUGHT - by both my Endo and my parents.

I wish that the whole "No number's a bad number, one number at a time" philosophy had come into play- but it hadn't. I felt bad enough that I was a child with diabetes who caused her parents grief and money we didn't have. The sadness and worry on my parents face made me feel awful.

My family was on diabetes overload and the stress amp was turned up to 11.

I wish I'd been more honest with my mom and dad. But I also wish my parents wouldn't have been so visibly shaken every single time a number went north. They were overwhelmed and scared, especially since my older sister had so many diabetes complications, and those feelings manifested themselves in anger ( real and perceived) at times.

Kids are sensitive , and kids are smart enough to see when and why a parent gets upset and try to avoid the situation at all costs. In my case, I lied.

We got through it as a family, but I wish we had ALL handled the issue differently.

Something really great my mother did do was have me read the exchange list to her as we prepped for meal time. Not every meal time mind you, but if I happened to be hanging out in the kitchen at the time, I'd look at the Food Exchange poster (YES, poster) in the kitchen and read the exchanges for the meal. I felt like I had a say (like did I want to choose the potato or bread for my starch?) and some control regarding life with my diabetes. It also helped me learn the exchange list!

So I'm curious - If your a PWD who was diagnosed as a child/teen, what did your parents to help you take ownership of life with "the betes?"

If your a parent of a PWD, what steps have you taken to encourage your child with diabetes to participate and take an active role their diabetes?


Renata Porter said...

I have two kids with T1. My daughter was diagnosed at 4 (now 16) and my son at 10 (a year ago). We made Kelsey repsonsible for her regimen very early. I think that was key in her getting use to having to take shots and thinking about her food. I think it's also what caused her to keep her teenage diabetes rebelling to a minimum. Marty, same thing. Obviously he was much quicker to take to giving his own shots since he had been around it his entire life with Kelsey. As for food, my kids get choices and they aren't banned from anything. Now, I do limit...but they get to choose what they eat. I even write out by item what's in their school lunches so they can adjust their shot if they don't want or can't finish it. I think it's truly important for parents to have their kids take on responsibility of their diabetes care. It make for a more secure and confident child. It's hard being a kid, let alone one with diabetes. If they have some control over what they do, they have control over how they feel about it.

Unknown said...

I hit the teen rebellion hard as far as my D-Care, and had A1C numbers that no one should ever experience. I recall the denial. The lying. The getting caught. Fortunately, I corrected that care in my later teen years and again in my 20s. But I wish I would have listened to my parents, particularly my D-Mom who was diagnosed herself at Age 5.

Pam Dunn said...

My 8 year old daughter Grace (dx 1/26/09 - 1 year tomorrow!) went on the pump in Sept. She checks her own bg and will bolus herself at times, with me watching. Our endo actually discouraged us from letting her bolus herself all the time, stressing that we have to teach her the importance of being accurate, and the danger of carelessly playing with the pump. She helps to weigh and count up her meal carbs, and has learned to let us know when she's really hungry, so will probably want seconds! I can't imagine how strict it used to be for you, Kelly. My daughter can check her bg in 5 seconds, check blood ketones in 10 seconds (great when she's sick, dehydrated, puking, and no pee left in her), eat virtually whatever she wants, as long as we figure the carbs (which is easy with the new food scales), and bolus as low as 0.05 units into her pump without daily shots. And even with all the new advances it's still such a frustrating disease. We try to teach Grace to own her body, and we try to mask our anger, fear, and frustration as best we can.

kristina said...

I was diagnosed at 14 (I'm 18 now), so from the get go I was pretty independent. my mom helped a LOT, but really, at 14 you should be able to take care of yourself for the most part. whether or not I did is the question...I admit, I don't take care of it near as well as I should, but it's not some "teenage rebellion" thing. it is seriously emotionally draining to keep it in control. add that to the fact that no one in my family has it, or even anyone that I know, so if I have a bad number I feel judged. BUT IT IS SO MUCH HARDER THAN YOU THINK, PEOPLE. it's not just, oh eat stuff and take a shot and you'll be good. NO.

ultimately, it's my responsibility so I shouldn't need my mom to be a blood sugar hawk, and I think she doesn't interfere too much. it's hard for me to let someone take a role in it if they don't understand what it's like.

Cara said...

I was 4 when diagnosed. I don't remember when I started testing my blood sugar myself, but I think it was pretty soon after. I do know I was testing on my own when I got to kindergarten. However, I didn't start shots on my own til I was around 8. But I did the whole drawing up the insulin, rolling the bottles, etc myself. I was pretty much doing it myself (with mom checking to be sure I was doing it and giving me verbal reminders) by the time I hit middle school age. Not that my parents didn't care, they did. They just knew I was going to have to do it on my own and I needed to know how to do it as soon as possible.
Sometimes I see parents in the online community that I worry about. They are being such micro-managers that I'm afraid their children will never be able to do anything by themselves. It's about sharing the responsibility until your child is mature enough to deal with it unsupervised.
Oh, and my shots around age 8 came because I kept getting invited to sleepovers and I couldn't go cause I couldn't give my own shot. I wanted those sleepovers, so I learned quickly. :)

Melinda said...

Michael was 5 when he was diagnosed. I remember clearly being told at diabetes camp to not expect complete independence from him regarding diabetes management, because then, if you're not at all involved it will be impossible to "get back in". He will be 18 tomorrow, and he does almost everything independently for sure. It's the teenage brain thing, though, that makes him need a nudge here and there: did you take your Lantus? Did you test? do you have low stuff?. He particularly loves when he has been a bit flakey on the testing part to come up with a target blood sugar! I love your thoughtful posts : )

Meri said...

I think my boys are afforded a good amount of indendence because they bolus and check themselves. Once in first grade, they were able to check, call and then bolus. Now that they are a little older, if they can't get hold of me, they don't panic, they know what to do. And especially now...that J is in 6th grade. He is happy not to have his mom poking around his classroom. It is a balance for sure. You can only hope you are encouraging them...without them feeling you are pushing them.

But every child is different. While my 8 year old and my 12 year old were both competent enough to check their own sugars in 6 year old isn't yet. I have him do what he can. He can bolus his own carbs...but when it comes to three digit numbers, he isn't ready yet. So I, or his brothers correct his blood sugars when needed.

Penny said...

My Grace has been Type 1 for a year now (1-9-09 diagnosis) - (and seriously Pam Dunn - EMAIL ME! - Both daughters named Grace, diagnosed weeks apart - mine is 7 now and yours is 8! Contact me. Sorry for the diversion...)

I try to always remember that it's HER diabetes and not mine. I would ask myself in those early weeks of getting diagnosed - 'How would I feel if someone did that to ME?' and it caused me to pause and think of what I might do with her or how I might approach something. First weeks and months home were hard - we would wait for her to be calm before we dosed her. Her only job at that point was to be calm for her shots. Nothing else was asked of her. Our longest time to wait was 12 minutes. Seemed like an eternity. We dosed her when SHE was ready.

We have gone on from there, at a steady pace, to where Grace, within the last 3 months, doses herself, but only on her arms, She says she needs more courage to dose in her thighs, which I find honest and insightful. She pulls back air into the syringe, pushes it into the vial and pulls back the correct amount of insulin. She tests herself and writes down her numbers faithfully in a log.

I am so trying to teach her how to do it 'right' and not be a nag or be forceful. I want her to learn good diabetic care, because she wants to take care of her body, not because Mommy says so. I want her to know all there is to know about Type 1 too. She has ready access to all of our care books. She skims them. She LOVES the Calorie King books, and loves to look up how many carbs are in a certain food. She can guess the carbs on her plate and likes to add double digits (hey, it's 2nd grade folks). I think that gives her control and empowerment. The more knowledge, the better.

I also try to maintain a sense of normalcy in her life. If she wants to do it, we make it happen, much the same as my other two kids. We are honest - she has diabetes, we gotta do some things differently but we can still do it.... Sleepovers - yep, honey, just call after you eat and let me know what you ate, I'll be right over. Birthday parties, yep, tell me what time you are gonna eat, I'm a comin'.... I will often say to her 'Honey, it is what it is.' - I don't dwell on the negative, the complications, the what-ifs with her. We have diabetes in the family now, we will learn all we can, we will take care of you, you will learn to take care of yourself, you are strong, wise and capable, now let's get to livin'.

I am learning from this wonderful DOC community about empowerment, ownership, knowledge and resilience through adversity. I hope I am teaching her all of that, so she grows up to be a young woman and an OLD woman with Type 1, who is proud, strong and capable. There is so much out there negative, I hope that I am giving her the will to always see the brighter side, to see the hope, to see that she is still here and has what it takes to take care of herself and her Type 1.

Cherise said...

Thank you all for commenting! The feedback is awesome. I was diagnosed with diabetes at the age of 24. It's interesting to see what mothers and CWD's have to go through on a daily basis, I commend you. K2, thank you for posting this.

k2 said...

Thank you all for sharing - your comments are from the heart and outstanding to boot!

Your doing a wonderful job teaching ownership & responsibility to Kelsey & Marty - Great job!

Ahhh, the teenage/college rebellion - I hear ya brother! We both learned relatively early on from our mistakes - thank goodness!
As children brought up in the "Diabetes Dark Ages," rebellion was common because almost everything was off limits- so glad times have changed!

Beautifully written and than you SO MUCH for sharing Graces story . HAPPY DIAVERSARY GRACE!
I know your doing an amazing job in teaching her ownership of her diabetes.
Growing up in "The Diabetes Dark Ages " was tough. Everything was off limits, choices were limited, and families & PWDs had very little support.
THank God times have changed!
Keep up the great work my friend!

Thanks so much for commenting !
I know it's hard being a teenager with diabetes - I was once one myself!
Your right, people don't always understand the world of Diabetes Math, or that sometimes, no matter what you do, Diabetes just has a mind of it's own.
I won't even get into the number hormones can do to your blood sugar- crazy!
But please give your mom and others who care about you a little bit of slack. They love you, are worried about you, and want to help. Your the person who can actually teach them the truth about life with diabetes, instead of perpetuating those insane diabetes myths that drive us all crazy on a daily basis!
As far as support, you have your family and friends, let them be there for you - even if they don't quite "get it." You also have all of us in Diabetes Land, who not only get it, but live it 24X7.
We got your back girl!

I hear you on so many levels. It was a gift that we were given to take an active part in our life with diabetes VERY early on.
I also worry about some micro manager parents I've read about and met in IRL.
Children with Diabetes MUST be aloud to actively participate in their disease if they ever want to be independent adults.
I'm so impressed by many parents who teach and allow their children to take part in their own diabetes. The parents who commented on this post are outstanding examples!!!

And yes- being able to go to sleepovers because we could give ourselves shot was HUGE!

And flakey teenage brain thing or not, you did a great job w/him Chicklet!

You've done a great job at teaching your boys independence & confidence regarding life with D.
And your wise enough to know that each child is different re: maturity levels and what they can handle. IMPRESSIVE

Your doing great and so is Gracie!
I know she'll appreciate how much you've allowed her to actively take part in her diabetes when she's older.
By empowering her as a child with diabetes, your creating an empowered and healthy woman with diabetes!

Cherise -
Thanks for commenting !
I'm SO glad you had the chance to learn from CWDs and their amazing mothers about growing up with "The Big D!"

Rachel said...

WOW! I feel like I'm way behind here.... Tristan was diagnosed at 16 months. Obviously we took care of everything. He turned 6 in November and he's on the pump. He doesn't have a lot of independence when it comes to diabetes.

He does help with carbs. If he wants something to eat he will tell us what he wants, look at the box and tell us the amount of carbs. He can enter his blood sugar number and give himself a bolus while we watch.

His nurse and I have been trying to get him to check his own blood sugar but he's having a hard time with it. He can't seem to get a "good" drop of blood so he get errors all the time.

I think that because he was diagnosed so young it's hard to let go. But after reading your post and the comments, I think it's time to give him more freedom.... but it's hard :(

k2 said...

Your working your butt off to be a great parent-I can't even imagine being diagnosed at 16 months.
Tristan is reading carb contents and bolusing while you watch- all great stuff!
Letting go is tough, every time I see my mom, she asks me if I have my meds and do I have enough snacks on my person, and I've been a PWD for over 30 years!
The fact that you are aware and want to give him more independence is a great thing. Keep being aware, keep giving him more diabetes responsibility, and keep up the great work!

Bennet said...

Brilliant post and great comments.

Thanks to everyone who commete dna Kelly for starting the conversation.

I just want to ad that this is an outstanding coaching comment for all us parents and one we need to be remined of regularly. "I also wish my parents wouldn't have been so visibly shaken every single time a number went north."

Jacquie said...

My mom always recalls that a conversation she had with my doctor's office before I left for college (I was diagnosed at 12). The nurse asked my mom a bunch of questions about my care: How much NPH did I take daily? How much Regular? What time? What did my sliding scale look like? My mom, realizing she knew the answers to none of these questions, grew terrified. But the doctor told her, "Congratulations. Your daughter is taking care of herself."

Ayden's mom said...

Thank you everyone! My son was diagnosed at 18 months and is turning three soon. We are always looking for ways to include him without pressuring him or putting too much on his plate. The examples and the tips given here are all great ideas, I'm going to keep in mind for his future learnings! I may not know what it is like to be a PWD, but I wish more than anything I could understand it at that level to help him. So to hear from PWD is very, very important for me. Thank you!!

Mike LeBlanc said...

Our daughter Adele was diagnosed at 30 months and she is now 9.

She's been on a pump since 3.5 so she doesn't even remember being on MDI. She can test her blood sugar, bolus and calibrate her CGM. We change the pump site (we don't use the quickset) and insert her CGM sensors when she chooses to wear one. She has a teacher's aid at school that helps with her care.

I am thinking though that it's time to involve her more in her care. We started our D-family journey when she was just a baby and find that we have gotten into a "comfortable" routine. Should we push it more or wait til she is ready? She goes over to friends and she tests there and calls with the result and we tell her what to do. That came from her, she told us when she was ready. Should we simply keep looking for such signs and signals?

Debbie Z. Lattuga said...

I just wanted to say, Kudos to all you parents of T1 children. My sister is Pam Dunn who left a previous comment. And although I do not have a child with T1, I can see the effects T1 has on a family. I know what a challenging disease it is and I commend all the parents encouraging their children to Own the Betes.

I can remember the day Grace was diagnosed (one year ago today). I called Pam at the hospital, and through my tears, asked her to somehow allow this diagnosis to be OK. Somehow I knew that in a years time diabetes wouldn't own Grace, that Grace would own the diabetes.

How grateful I am that it turned out to be true.

Bless you all.

k2 said...

Bennet -
Thanks for your comment- I'm glad you stopped by and gave us your input.

GREAT STORY - You and your mom must have been SO proud!

Ayden's Mom:
Thanks for your comment and I'm glad you learned some tips to try with Ayden when he's older.
When he's bigger and more capable- being able to participate in his diabetes will make him feel more confident.
Your doing a great job and I'm looking forward to reading all about life with Ayden!

WOW- 30 months old- such a baby when D came into your lives!
Sounds like you all are doing a great job!
I don't know your daughter, but She's 9 and I do know that's an age where kids start to flex some independence.
If you feel that the routine has gotten to comfortable, maybe you should try incorporating new diabetes tasks into her routine.
I would definitely talk about it w/her and see how she feels.
Maybe have her keep her own log book/journal (in addition to the one you keep,) so she can start getting in the habit of writing her numbers (and how she feels at and about said numbers) down.

Or, have her start looking up carb counts on food boxes and food guides.
Little things mean a lot in life.
Keep us posted on what's going on - and thanks for commenting!

Thanks for commenting- as an Auntie to a child with diabetes, you are considered and official and card carrying type 3! Type 3's are people who don't have diabetes, but love someone who does!
Owning the Betes is a HUGE thing, and the parents are doing a great job!
Grace is indeed taking diabetes by the horns- and her parents are doing a great job!

Nan said...

This is definitely an area in progress for us! I think because C was diagnosed so young (22 months) that I've really had to be conscious of her growing abilities to care for herself. It's so hard. The easier thing to do is to just do it all for her. But little by little, we're giving the reins over to her. She can do most everything no (under supervision of course), except change the infusion site. She's almost 8 years old. Every now and then, during a site change, I'll ask her, "do you want to put it on your tummy?"...the answer is always NO. We have always put the pump site on her behind. I don't want to push her but I do want her to be able to do it on her own. I think it really is important to empower our T1 kids.
K2, love this post! And, oh, how I remember MDI and the "rolling the bottle" thing!

Anonymous said...

Thanks Kelly for sharing your perspective and giving me a glimpse into our future. This is an important reminder for me - to keep my cool with the out of range numbers. Sometimes I do, and sometimes I don't. When I don't, I don't blame Caleb. In the mighty Ninja's words, I "blame diabetes".

Caleb can do just about everything by himself. When he is at school, he is pretty much the boss, although he works with the school nurse and anything he does is supervised. He's been checking his BG since preschool and bolusing himself (supervised of course) since he started pumping, shortly after dx at the age of four.

However, other than at school, I don't require him to do it because I'm afraid it will wear him out. When he is home, sometimes I check his BG, sometimes he does. Anyone, including his brother, could be the boluser. I feel like we have a good balance, and every year he seems to naturally take on a little more.

I appreciate hearing from others. The role that Caleb plays in his D care in an ever evolving thing and I'm glad to have another opportunity to evaluate it.