Newly Diagnosed Week: Get Your Head in the Game

This week, over at Diabetes Daily, founders David and Elizabeth Edelman are running Newly Diagnosed Week, where the contributing bloggers are posting their tips. I thought it was a great idea — we need to talk a lot more about that free-fall we all experience when our diabetes begins — so I’ve asked friend and fellow blogger Allison Blass to share some of her tips on how to handle your new diabetes diagnosis:

 

A Guest Post by Allison Blass

I was diagnosed with type 1 diabetes nearly 16 years ago at the tender age of 8. At such a young age, my diabetes diagnosis was not just my own. It was also a diagnosis for my parents, who would be my caretakers for many years to come. Young children are not mature or responsible enough to handle such a complex disease on their own (and some would argue neither are teens or adults!), but a diagnosis of a child affects the entire family. So while I have my own tips to share about being a newly diagnosed diabetic, I thought I would bring a couple of people who know what it was like the best: my parents.

 

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The Blass Family’s Tips for Succeeding with Diabetes

When I decided to write this guest post, I called my parents and told them about this writing assignment. My dad put me on speaker phone and my parents and I spent a few minutes going over some of important tips for handling a diabetes diagnosis.

My dad, David, started off with three main points:

1) Embrace it. Don’t go into denial. There’s no way around it.
2) Normalize it.
3) Get disciplined.

I asked my dad what he meant by “normalize it.” He replied, “It’s part of your normal life now, just as any other hygienic thing you do in your life.” He emphasized that establishing a routine was key for dealing with the “800 pound gorilla” that had just moved into our house. We ate dinner at the same time; we had a routine for meals and activities. “As boring as it may sound, that’s how you embrace it.” This isn’t to say you can’t be frustrated, angry, confused and the myriad of emotions that come with diabetes. But day-to-day, you have to integrate it into your life and make it as “normal” as possible because it is your new normal.

My mom, Caren, recalled the biggest challenge at the beginning was preparedness. She said, “Often times because it wasn’t normalized and routined, we often expected everybody else to remember. We often forgot to pack supplies. But the family has to be a team. You can’t blame each other for not being there. Often times parents don’t have their act together. It isn’t a routine yet. It does take awhile so you have to make the effort.”

Another challenge (and which many of us still struggle with) is the ever-present Diabetes Scorecard.

“One of our biggest downfalls was we ‘scorecarded’,” my dad said. “We FAILED. You were 220, my God, what did we do wrong? And these days, you know, ‘stuff happens, we’ll do better next time.’ You cannot beat yourself down, or the team, or the diabetic, for what is clearly a short term aberration. And for children, good numbers are darn near impossible day in and day out.” Emotions can run very deep with diabetes, which is why it’s important, especially in the beginning, not to get in the habit of judging how good or bad you are as a parent or a patient by what your blood glucose numbers are.

One thing I always appreciated my parents doing for me was letting me still be a kid! I participated in all my Girl Scout activities, I went on school field trips, I even went on sleep-overs with my best friends.

Mom says, “Don’t shelter your children. Don’t be a helicopter parent. It doesn’t help the helicopter children, and you’re not going to be there to protect them for every minute. You have to let your kid be part of the team. You have to empower your kid.”

Mom also emphasized personal diabetes education: “You have to educate yourself on what diabetes is because you will come across doctors and nurses who don’t know anything about it. You have to be your child’s advocate. If you don’t know enough about it, you won’t know if you’re being given misinformation. You have to become a doctor, scientist, dietitian. You have to start wearing all these hats.” It’s also important to keep a thick skin around people who aren’t as educated as you are.

“Don’t take what other people say to heart. Because people are going to say insensitive things unbeknownst to them,” Mom added.

Best tip of the conversation? Keep a positive attitude. Everyday is different, but, as my dad says, “You do your best but results may vary.” (I think my dad and Bennett would get along…)

I also recommend a solid support network, whether that’s in the shape of camp, support groups, Children with Diabetes conference, meet-ups or whatever. There is nothing more valuable, in my opinion, than the experience of someone else and the familiar sight of an insulin pump or a glucose meter. Some of my best friends are people with diabetes, and they are a constant, yet in some cases subtle, reminder that I’m not alone, that I’m not the only one who feels sick or frustrated or blah about the whole diabetes thing.

Diabetes does not make your child (or you) breakable, my dad reminded me. They have to be normal. So many parents I know worry about their child’s happiness, their success in life, college, work, relationships. I can confidently say that your child will be great. Not just fine. Great.

Don’t let diabetes defeat you.

 

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11 Responses

  1. Cara
    Cara September 25, 2009 at 6:41 am | | Reply

    Wonderful! I love the part about helicopter parents. My parents let me go and do also, and I am forever thankful for it. Sometimes I think you just have to have a little bit of faith that you’re child is going to be okay. :)

  2. anonlurkermom
    anonlurkermom September 25, 2009 at 7:34 am | | Reply

    Along the don’t judge yourself line, I remember very early on instituting the rule that a number is a number, that there aren’t “good” numbers or “bad” numbers. It was really hard at first not to gasp or otherwise react to a bg reading. (my daughter was dx at 8, now 13)

  3. Michael Ratrie
    Michael Ratrie September 25, 2009 at 8:20 am | | Reply

    Great blog! Really appreciated the normalizing and keep a positive attitude they really resonate with me.

    Fair Winds,
    Mike

  4. Stacey Divone
    Stacey Divone September 25, 2009 at 10:52 am | | Reply

    Great advice Allison! I’m always curious to see how other families cope with having a child with D. I was diagnosed when I was 5 but my father already had it so it wasn’t something “brand new” to our family.

  5. Lauren K
    Lauren K September 25, 2009 at 1:16 pm | | Reply

    My little brother was diagnosed in childhood and I was diagnosed type 1 in my twenties. I have to say that the diagnosis is the kid’s alone, not the family’s, and the family should not try to take ownership of it. The kid is the one who has the disease, and the parents need to remember that and be respectful of the challenges the child faces — challenges that non-diabetic people will never come close to understanding.

    My brother was told that the disease was his responsibility from day 1, and he shouldn’t expect coddling or support. My parents to this day are still hazy on the details about type 1 diabetes — for example, they don’t understand that insulin isn’t optional. My brother and I learned to be responsible because it was quite clear that we were on our own. And that’s the reality of type 1 diabetes. You rely on yourself, and no one else.

  6. Allison Blass
    Allison Blass September 25, 2009 at 1:52 pm | | Reply

    I disagree that type 1 diabetes is the sole responsibility of the child. Diabetes is a life-threatening illness, and mismanagement of insulin can have deadly consequences. I would never trust an eight-year-old to have the mature comprehension of why she needs to take insulin for her food and whatnot. That’s child abuse, in my opinion. I’m sorry that your parents were so uninterested in helping your brother and understanding what it is that he was going through, and that he wasn’t provided assistance during what must have been a very difficult and confusing time for him.

    My diabetes is my diabetes – now. Like anything, parents need to eventually give their child sole responsibility for the disease when they are old enough. For me, that was about 15 or 16 years of age… right about the time I started driving and spending more time away from them. My parents do not dictate to me what I need to do now, because they know that as an adult I can make mature, responsible decisions for my health. A child cannot and should not be expected to understand the ramifications of diabetes. I would never in my life give that advice.

  7. Scott S
    Scott S September 25, 2009 at 2:27 pm | | Reply

    I tend to agree with Allison’s response to Lauren K, a child (particularly a young child) is not mature enough to understand the full ramifications or details involved in managing a complex disease like type 1 diabetes. For example, calculations and ratios are items that few young children have even learned yet, so it’s kind of hard to expect them to dose correctly based on carb content for a meal combined with data on their current blood glucose levels. Ultimately, the parents are responsible for overseeing the child and they’re responsible for ensuring the kid is safe. At one time, dosage decisions were nowhere near as complex as the standard treatment protocol of today is, but the parents’ job is to raise the child in a way that they can ultimately care for themselves.

  8. www.healthcareandlife.com
    www.healthcareandlife.com September 27, 2009 at 11:10 pm | | Reply

    I look forward to follow this blog now

  9. Edwin
    Edwin September 30, 2009 at 4:02 am | | Reply

    Thanks a lot…

    I told that the diabetic patients who also have depression are more likely to have been younger at the time of diabetes diagnosis and to have poor management of diet, exercise, and medications and a higher risk of complications.

  10. DS
    DS October 5, 2009 at 5:35 am | | Reply

    Interesting post. The hardest part (in my opinion) for children with diabetes is the feeling of why they cant be normal. with the right direction it can be much easier.

  11. Cath Allison
    Cath Allison October 19, 2009 at 11:33 am | | Reply

    We found out my 2 year old has it aug 5th this year Such a shock but luckly we using an Animas pump and are starting to get our head round things. I think while he is this young in some ways has made it easy we have time to get our heads round everything before the worry of him learning how to starts……

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