With a Little Help from our Friends

Tuesday, July 1, 2014

A few months ago I got an email from a someone asking for advice.  And I was impressed... She wasn't asking for advice because HER child had been diagnosed with Type 1.  She was asking for advice because her FRIEND'S child had been diagnosed.  And she wanted to know how she could help.

"Awesome!" I thought.  "That's a great idea!  I'll just whip out a post about that..."

Yeah.

As it turns out, that was a little more difficult than I originally thought.

People are so different.... It just depends.  It depends on how you handle and manages T1.  And it depends on the age of the child.   And the personality of the people involved.  And the kind of friendship you have. 

There are almost as many factors at play here as there are when dealing with diabetes itself!

But... here are a few suggestions I have for friends of parents of children with diabetes...
(Please keep me in mind that these are just MY suggestions.  They may not work for you so take it with a grain or salt.  Or drop of insulin...  Whatever.)

1. First of all, the fact that you are even reading this and caring is a big deal.  Trust me.  You may not think so but it is.  

2.  Learn the facts.  Learn as much as you can about this disease. Read books.  Look at websites.  It's complicated.  But when you are suddenly thrown into this new world with a totally new language... having someone who understands that language is a big deal.  Someone who know what you mean when you say bolus or basal.  Not that you have to learn the intricacies.  You don't.  But a working knowledge is really helpful.

I suggest the following...
www.jdrf.org
The Pink Panther First Book for Understanding Diabetes by H. Peter Chase MD
The Everything Parent's Guide to Children with Juvenile Diabetes by Moira McCarthy Stanford

3. Learn the emotion.  Facts are good.  But often, at first, the parent of a newly diagnosed child is overwhelmed and dealing with a lot of different emotions.  And as much as you want to help and relate... until you go through it yourself you won't fully be able to understand it.  I'm sorry - I don't mean to sound rude.  But this is true.  It's not because you don't want to.  It's just the way it is.  There are emotions and feelings that you experience when your child is diagnosed that you can't fully express.  That you don't even know are there... And unless you're like me and spill your guts all over the internet... I suggest Mommy Blogs.  Written by people like me.  Who talk about the anger, sadness, grief, pain, happiness, pride, joy... all of it.  Your friend may not be comfortable or ready or able to share those feelings.  But bloggers like me give you a window into our world.  You can find a great list on my blog roll.

4.  Offer to learn how to take care of our children.  This is especially important when they are little and can't do much- if any - of their own care.  Watch what we do.  Ask if you can do it while the parent watches.  Learn how to count carbs.  And check blood sugar.  And give insulin.  Learn what the numbers mean.  What is high.  What is low.  What is used to treat a low.  Watch.  Ask to be involved.

5.  Offer to actually take care of our children!  This is the next step!  Once you have practiced, offer to take our kid for an hour.  Or more.  Whatever you are comfortable with.  But here's the kicker... Don't say, "I'd be happy to watch Joe for you some time!"  If your friend is anything like me, she will never, ever ask you.  Not because she doesn't think you can handle it but because she knows its a lot to ask and doesn't want to ask that of you.  Even though you offered.  Seriously.  I have a HUGE issue with this.  Say, "I want to watch Joe.  When can he come over?"  or "Can Joe come over for an hour on Wednesday?"  Be specific.  Pin it down.  It may make us somewhat uncomfortable - especially at first.  But do it.  More than once.  You have no idea how much this means to us.

6.  Ask how we're doing.  Ask how things are going.  If you have done the above things, chances are you won't get a "fine!".  I hate when people who really don't know anything about T1 ask me how she's doing or how her numbers are.  They are trying.  I appreciate that.  But what do I say?  It's not an easy question to answer.  They won't understand when if I say she's running high and I'm worried she's getting sick or I'm gonna have to overhaul her basal.  But if you have a working knowledge of T1 and us and our kid... it's different.  And sometimes we need to talk about it to someone who understands. 

7.  Ask what you can do to help.  Maybe we need to sleep.  Or go to the grocery.  Or go out with our husband.  We may be really reluctant to let you help.... but if you see there is something specific - offer.  "Can I do your laundry for you?  Can I mow your grass?"

8.  Treat us like you did before.  Most importantly, treat our KID like you did before.  Don't be afraid.  Our kids really aren't all that fragile.  And while we're trying to learn the ropes, we are also trying to make things as normal as possible for our kids.  We don't want people to treat them like they are sick or disabled.

9.  Get involved.  If we do a fundraiser or a walk or something like that, join us.  Show up.  Support us.  Having our friends come to our JDRF Walk to Cure every year is a big deal - to us and to our daughter.  We really appreciate your being there for us.  We don't expect you to donate lots of money.  Just BE there. 

10.  Talk to your kids.  Explain diabetes to them.  Maybe we will want to show them... I know that Sweets liked showing off how she checked her sugar and things like that.  But your kids are probably going to have questions.  I'm always happy to answer those questions... but your kids may feel more comfortable coming to you. 
On a similar note, one of the best things that my friends did was have "free" snacks available at their houses.  Now that Sweets is on a pump, it's not a big deal for her to eat whenever.  But when we were doing multiple daily injections, it was MUCH harder.  My friends talked to their kids about not snacking in front of Sweets when she couldn't eat.  That was BIG.  Like I said, now it's not an issue.  But when she was 3 and doing shots... it was a big relief not to have to fight her over goldfish crackers when she had just eaten and gotten a shot.  This is something that may not be a big deal to everyone - but it was to me.  Especially at first.

11.  Please don't offer advice.  Don't tell us it could be worse.  Don't say "At least it's not..."  Don't compare us to someone else you know with diabetes.  Even if your Uncle Lou had type 2...  Even if your friend's neighbor's kid has type 1... Because it's not the same.  Everyone's diabetes is different.  Everyone handles diabetes and manages diabetes differently.  What's doable and comfortable for one family may not be for another.  And that's ok.  So please don't act like just because Betty Sue down the street lets her kid go to sleepovers or drops her kid off at day camp without hesitation or weighs every morsel her child eats that we should do it that way, too. We don't need your judgement.  We don't need your advice.  We need your support. 

12.  Hang in there.  We may pull away.  We may be depressed or angry or just not that fun to be around all the time.  We don't mean to take it out on you.  Read this:  It's Not You, It's Me:  An Open Letter to My Friends Don't give up on us. 

So that's my Top 12!  I'm sure I could come up with more.  And I'm hoping my wonderful readers will comment with helpful advice of their own!

Because everyone's experience is unique.

 Thank you for caring enough to try to help and try to understand.  Your friend or relative may not be able to express it you now, but your concern and willingness to learn means so much. 

The only way we are going to not just survive - but THRIVE - is with a little help from our friends! 


*** Please comment with your own suggestions and ideas on how friends and family can help a newly diagnosed family!  The more the better!  And feel free to share this list with anyone you feel could benefit!***

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2 comments:

  1. Please don't make comments such as, "your child or you don't look over weight!"
    "My aunt Betty had diabetes! She lost her leg.." (This one is really bad! Esp to say to or in front of children!!)
    Please please don't give any "cures" that you read about online or in some magazine, it's appreciated that you think of us or your friends child, but please don't.
    Don't offer to learn or help then back out or not try.. For me it's exciting to educate others.. And personally it's upsetting when those who asked to learn don't show an interest..
    Show some love!! We all need some love! Some more then others!
    If you learn and research and all, it's nice to have someone to vent to esp someone who understands!!

    And be understanding. There will be times when it all is well, but others when those with or those caring for someone with t1 will think they are loosing their minds simply because diabetes doesn't want to play nice. Be patient and kind and understanding. We aren't crazy! I promise! Well sorta ;)

    Thank you to EVERYONE who helps in anyway!

    ReplyDelete
  2. I say don't judge. If I'm feeding my child something you don't feel they should be eating, step back and realize I know what I'm doing.
    Understand living with diabetes is a balancing act... It is just as much a mental game as anything else.

    ReplyDelete

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