Siblings of Diabetics


(Dawn) #1

Tell me about how you manage your non-T1 siblings of T1’s. What do you do to make them feel special when so much of your time/attention goes towards caring for your T1. Have you had issues with your T1 siblings acting out for attention?


(Bill) #2

Dawn, @whosthebos913

I am writing a response to your post. I wish it was an easy, “do this, then this…” kind of a response, but it isn’t. I feel like I owe it to you, and the rest of our T1 Community, to give you the facts, and then some suggestions. I hope to have it finished later today.

Cheers!

Bill


(Dennis J. Dacey, PwD) #3

Hi Dawn @whosthebos913, there are a few different schools of thought on this subject. I don’t possess the expertise that Bill has [I’m waiting to read and learn from him] but I will share my personal story - and just recently, 60+ years into the diabetes living world, I asked my siblings if they felt ‘left out’.

Growing up with six siblings I didn’t feel or notice, except on rare occasions when the milk ran short my four ounce glass was filled first. Other than that I as well as all my sisters and brothers received the same attention from our parents and without exception we each had to pull our own weight. I had responsibility for the vegetable garden doing most of the labor for fresh food on the table - yeah, about a quarter of the carrots, my favorite food in those days, never made it into the house.

I know my siblings shared some of my burdens without letting me know, especially the burden of knowing that most juveniles diagnosed with diabetes would never live to adulthood - thank God that has changed . Another bit of help, the first down to the kitchen would take out the ‘reserved’ strainer and sauce pan and start boiling my glass syringe and needle so it would be ready for me before breakfast. Also one of my sisters, when she would see me sitting in the kitchen with needle as thick as a nail [26 gauge] in my hand and see tears in my eyes would take the syringe from me and stick it in my arm; just six months ago she told me how frightened she was doing that - I never knew that.

Bottom line, none of my brothers or sisters felt left out or deprived by me being treated well with diabetes.


(Dawn) #4

Thank you for sharing your story with me, Dennis. This brought a couple tears to my eyes, hearing how loving and compassionate your siblings were to you. My non-T1 daughter has eagerly asked if she could do shots for my 6 year old T1. Both seem very brave and very comfortable. I just worry about big sister taking the back seat on all of this attention. My T1 is both diabetic and celiac, so a lot of our attention is going towards learning about what foods she CAN eat, calculating carbs, and also learning about how she responds to them. She wears a CGM and that has been amazing help.

God bless you, Dennis - and your loving family.


(Bill) #5

Hi, Dawn @whosthebos913 .

You have raised tough questions. There are many factors that influence the behavior of siblings of youngsters who have T1. I’ll try to give you a little of what I have gleaned over the years both in my professional practice and through personal experience.

I need to note this first. The issues you have raised apply to all families that include a child with a “chronic illness.” These issues are not “exclusive” to diabetes. I’ll address this more later in this post.

To your last question first - siblings acting out for attention. Well, yes and no. When siblings of chronically-ill children act out it is just “too easy” to say that their behavior is a reaction to the extra attention given to the chronically-ill child. The explanation is a little more involved. It relates, in large part, to “family dynamics.”

“Family dynamics” describes how members of a family relate to each other and how they, as a family and as individuals, deal with “stress.” Family members’ interactions (their behaviors) reveal how the family “copes” with stress, both as a family, and as individuals. These behaviors define the family’s coping “style.” As stress increases, the behaviors in the family’s coping style intensify, and may even become problematic.

So, for example, if members of a family are prone to argue, increased stress may cause the frequency, severity, and duration of arguments to increase. Similarly, a youngster who is prone to act-out physically may act-out more obviously.

At the other end of this spectrum are family members who are prone to be cooperative and helpful; they may become more supportive as stress increases. A sibling who is prone to be cooperative and helpful will likely demonstrate supportive behavior, too. This is what @Dennis described in his post (see above).

There is the “flip side” of those “overt” behaviors described above – that includes withdrawal in the face of stress. As stress increases, individuals who are prone to withdraw become even more withdrawn.

From what I have written I guess you can tell I don’t really agree with the thought that some siblings “act out for attention.” In my opinion, they act out because they feel stressed, don’t know how to identify what they’re feeling, and wouldn’t know how to resolve it (don’t have a “coping mechanism” for it) even if they knew what it was. Yes, they get attention because of their acting-out behavior, but it does not resolve the stress that prompted their behavior in the first place.

Okay. So how important is this stress and family dynamics thing, anyway? The last research I read on the topic indicated more than 60% of couples eventually divorce when one of their children is diagnosed with a chronic illness (the number was as high as 72% during the 1980’s). Now that’s “chronic illness in a child” - the data are not specific to T1.

In the early 1980’s I did a research study with the members of over 100 families that included a T1 youngster. I asked those many people to provide anonymous information about how they perceived each other. What I was looking for was the effects of T1 on “family dynamics” (i.e., the way family members relate to each other and resolve problems). There was a significant and reliable effect in the ratings – the children who had diabetes were rated more negatively than their other family members. Please note: not all of the families rated their T1 family member negatively. But the “average” of the ratings was negative enough to produce a statistically reliable effect.

I submitted the results of my research to a diabetes-related medical journal and the editors “threw a fit.” Their comments to me were scathing and derogatory. To my shock they failed to appreciate the “message” in the data – diagnosis of T1D in a child has the potential to significantly impact family dynamics.

“So,” you may ask, “What do I do about it?” My response is simple, “Talk about it.” Talk about how T1D impacts the way your family works “as a family.” Then, talk about how T1D affects each family member. Talk about perceived stress or “problems.” You may be surprised at the responses you get. The point is, if you talk about it, T1D will stop being both the “elephant in the room” and the “monster under the bed.”

Some of these conversations might be better done “in private” (i.e., one-on-one) rather than in a family session. No matter how you do it, make sure everyone has a chance to be heard.

Avoid trying to be “a therapist.” Just listen. Then, resolve to find solutions to any problems that have been identified. Develop those solutions such that they meet both the needs of the family, and the individual needs of every family member. Great discussions lead to great plans. And great plans solve big problems.

The more you talk the easier it gets. After a while it will become “natural” for family members to “just sit down and talk.” And you’ll discover that your family dynamics allow you to manage stress pretty well.

I will stop this post here. I hope others add their thoughts.

Cheers!

Bill


(Dawn) #6

Bill, this is an excellent response that gave me many facets to ponder. I appreciate the thought and energy you gave towards answering this for myself and others on this site. We are only about 6-7 months into our life with diabetes. My husband and I talk about carb counts and doses as a team and tag team the shots so that it is apparent to all that this is a team effort. The non-T1 sister has even asked to give the shots and our dxd has allowed her to do so. She is so brave to let people learn on her! My non-T1 seems very engaged in everything so far - but I wanted to think ahead should the behaviors or resentment begin to present at some time.


(Bill) #7

Dawn @whosthebos913,

It’s good that you are anticipating “how the dominoes ‘might’ fall.” But it sounds like your daughters are pretty neat people. I would encourage you to “begin” to relax just a bit.

It’s nice, too, that it’s summertime (I’m guessing you are in the Northern Hemisphere?). Summer will give you a relaxed time to begin to learn more of how things go over the long term.

Relax, keep talking when issues come up, have fun, but, most of all, enjoy the girls. They’ll be grown before you know it. The coping you model for them over the next few years will set them up to do well when they begin their adult lives. Even your daughter who has T1.

Good luck! You can do it!

Bill


(Nancy) #8

@Dennis - I got tears in my eyes, too, reading about how your sister rescued you from that needle.
@BillHavins, I’m pleased to meet you - apparently Dennis has seen you in threads and is fond of you. Dennis and I have chuckled over how long we’ve each been a T1 (nee’ juvenile diabetic). He’s got a couple years on me, but we share sentiments and some experiences.

Now to the most important voice in this conversation @whosthebos913 - Dawn, I was 10 mos when I was diagnosed, and I am the eldest of 3. I don’t think Jeff or Krissy ever felt slighted (I’ve never asked) because of our dynamic. Jeff was the only boy, who was fawned over as little boys are. Krissy was the cherubic baby girl, blonde, blue-eyed (the rest of us are dark eyed, dark-haired). We fought and wrestled and cussed as siblings do. But, they both gave me shots. Matter of fact, most of my friends, and all my boyfriends, would administer my injections (I didn’t trust anyone to draw without my expressed review, tho).

I think the only thing I could add to Bill’s lovely explanation is to not fawn over your child with T1D. Most feel weird enough, especially as teens, without being treated with kid gloves at home. Give her the tools and step back to watch her build a mansion. She’s got (what seems like) a 100 years of progress behind her (no more boiling glass syringes, no more peeing in a cup do urine tests (2 drops of pee to 10 drops of water, anyone?), no more food exchanges or “you can’t eat that because…” At 6, she’s still young enough for it to never phase her.

YOU’VE got this!

Best in health -

Nancy


(bsteingard) #9

I was diagnosed when I was 6 and my sister was 4. My parents were worried that, with all the time and attention they were devoting to me and to learning about diabetes, my sister would feel neglected. So they started a new bedtime routine. Every night we would each get a half hour of story time with one parent before bed and we rotated which parent (dad one night, mom the next, then dad again, and so on) so that it wouldn’t seem like anyone was playing favorites. We kept it up all the way through elementary school, but it wasn’t until much later that I found out the real reason why. I think my mom said that my sister was lashing out, but I don’t know what exactly she did.

Worst case scenario, it’s a great way to get your kids into reading. I read Black Beauty and White Fang with my mom and The Chonicles of Narnia and The Hobbit with my dad, all years before any of my classmates had even heard of them, let alone read them.


(lepley) #10

I was diagnosed a month before my 10th birthday. My brother was 7.5. From my memory, I don’t remember him reacting strangely or anything like that. After the initial learning curve of diagnosis, it really was just “normal” life. We didn’t remember life any differently, nor was I treated any differently. I was the typical oldest child and he was the typical youngest. We ate the same foods, had a similar routine, fought like crazy, pretty typical kids. I think for him, having a diabetic sister is just normal.

Just yesterday, we were all at my parents’ house swimming and he yells out “hey you diabetic, get in the pool” in his most natural KY accent. Ha ha. (We are 29 and 25 now.)

I think that kids are resilient; it was way more traumatic on my parents than on my brother or myself. I think what worked for us was to make it our normal. We talked about it, laughed about it, got frustrated about it. It was never a taboo topic; it was our life.

I’m going to have to text my brother and see what he says though! I’m interested now! Never thought to ask. lol.


(Dawn) #11

Please share your brother’s response! I’m interested in his adult commentary of his childhood thoughts.


(lepley) #12

I texted my brother and this was his response:
" I can’t remember much about it from when we were younger, but I know growing up I noticed you were more cautious and we always kept an eye out for symptoms."

I followed up asking if it was ever weird having a diabetic sibling or if he ever felt jealous or lacked attention. He said" Not that I’m aware of."

So there’s his response. Not too meaty, but I guess it didn’t seem to have any sort of lasting effect. I did find it interesting he used the word “cautious”. I never felt cautious, so that was an interesting perspective.


(Dawn) #13

It’s good to know that it wasn’t terribly monumental or limiting to your sibling… makes me feel better for my kids.

My t1 is a picky eater and has also been diagnosed with celiac… and my non-t1 is a ‘foodie’- She loves to eat and try new things. I worry a little that it will result in my non t1 resenting the t1 for placing so many ‘family-assumed’ restrictions within our home. But the basic ‘jist’ of these post responses are that I need to not worry about it so much and just let the girls develop into beautiful young ladies that work with the cards we are dealt.


(Spring) #14

My brother, older, entered the Army three years after I was diagnosed and missed 99.9% of my complications. My sister, also older, was diagnosed with T1D several years ago and she recently shared with me that she now understands what I grew up struggling with and continue to this day and that admired how I continued to fight and not give up treating my T1D. I really appreciated that because we never discussed my complications with diabetes and it made me feel good inside to know she understood me more.


(Dawn) #15

I’m glad to hear that you and your sister have a closer bond today. I don’t think that many people would truly understand your struggles unless they try to walk a milk in your shoes. I’m sad for both of your diagnoses, but am uplifted by your ongoing strength and support. Take care and thank you for responding!