News

February 2014

Here are a few musing regarding the issue of testing in public as brought into the public arena of discussion by an article by Miss Manners who  suggested in a national  publication that people with Type 1 should  test in washrooms and other out  of the way places.

Here are my thoughts:

In the world of advertising and indeed communications there is no such thing as ‘bad publicity’. In my view the discussion that has ensued from this article  is vibrant, healthy and necessary.
My girl was diagnosed just before 16th bday and I spend the next 5 yrs making a documentary showing how teens felt about their predicament. In a word, after seeing and hearing from many teens, I would not recommend they hide their glucose testing or anything else about their diabetes, that fits in the realm of everyday living, testing, even discreet injections at the table.
Adults can manage these issues differently no doubt. But the self-awareness, self-acceptance aspect of being a teen dealing with T1D, is more important to all of us for their mental and emotional health, that the risk of offending the sensibilities of a few unknowing bystanders. Let their curiosity be the stage for a great conversation, not of propriety or shame of the disease but of the need for a cure, and the celebration that today my girl and perhaps your girl lives, because of this relatively new thing called insulin.
And T1D family, we need to avoid self-righteousness, we will slowly carefully bring awareness, in perhaps awkward ways, even out of conflict, but we must focus on awareness. Type 1 in communications terms is an infant, no one knows much about it pretty much unless someone in your actual home has it. Lets change that.

Dan Shannon T1 D dad

January, 2014

Today I share a conversation I had yesterday with a T1D mom, Sandy, whose story is just son hard.
I did not know Sandy (the mom) until a conversation on a T1 parents
FB page. Our conversation is below.

You can purchase Sweet 16 documentary DVD here

Simply use coupon code SW225 for a 20% discount in checkout at 411films.com , our very own distribution portal. The coupon is a time sensitive offer.

___________

Sandy’s story, or rather that of Josh her son, is a dire reminder of
what we as T1 parents can and might do to make sure we are creating
the best support structures for our loved ones dealing with T1D.

I have to say if you are a parent, what follows is hard.
Sandy’s boy Josh, just passed away from diabetic ketoacidosis.
He had just moved away from home, and was alone.

Conversation started :
Tuesday 1/21, 2:56pm

Dan Shannon

“I am so sad to hear this Sandy. Really. I know this must be
such a hard time. Actually I don’t have any idea. I am in shock.

FYI we produced a film Sweet 16  on type
1 for teens, trying to raise awareness. Mine is 22 now, just at
that stage. I know this is far from what matters to you right now,
but I would love to send you a copy, if you give me an address. It
is a good awareness tool. I just want to extend an expression of
community as I think we T1d parents have a particular lot in life
and need to stick together.

I don’t choke up easily, but that really does it. May I ask
his name?

1/21, 4:36pm

Sandy Perkins

“Dan - of course - he went by Josh, but it was actually
Joshua Daniel Perkins. Please feel free to send me a copy - and
trust me,everything matters to me right now - between sadness,
acceptance, a desire to make sure no other parent faces this, to
anger that his pharmacy wouldn’t deliver the meds, and the
knowledge that at 23, he probably felt pretty invincible. He worked
out daily, and was actually pretty healthy - only ate organic
foods, loved to cook his own meals, shunned McDonalds,
etc., anything with sugar, etc.

Please remember that my goal isn’t to scare parents - I hink
all Type I parents live with enough fear - but mostly for the
dreaded lows. I just don’t want young teens, early twenties, or
parents of that age group to become complacent. It’s so scary
when your adult Type I goes off to another city to live and they
get their first apartment, and all of a sudden you realize they are all by
themselves, still dealing with this disease. Are they going to test
regularly? Are they going to remember what alcohol can do to their bg? Is there someone nearby
that will look in on them - or will they even LET someone look in
on them? They want a normal life, too, just like everyone else. and who can blame them?”

1/21, 5:00pm

Dan Shannon

“Sandy I really think your story is important to share and I don’t find your are going to scare anyone

who knows what this is about. I am sending you the DVD. I also want to tell your story, will you
allow? I think those who buy the film are already looking for good info and
experience is the only teacher we have. Yours is invaluable to us all. A prayer for
Josh. And a prayer for you and your family. I am always aware our kids are lent
to us for a time. and impact is not measured in years, but in character. It
sounds like Josh has character in spades. His journey continues as does ours.
DVD on the way, please stay in touch, you will also receive an email from
411films.com our distribution platform with more on the film ok?”

·
2:52am

Sandy Perkins

“Dan - Of course you may share Josh’s story. His loss is
devastating to us and to his friends, many of whom knew he was
diabetic but had no idea of the seriousness of the disease. I feel that every Type I
who moves away from home, or who has their own apartment, or is just trying
to “grow up” should have at least 2 friends who are acutely aware of
how serious this disease can be - and will honestly agree to “check
in” with the Type I each day - just a simple “hi, how’s it going”,
or a quick evening check over the phone such as “hey, you need
anything”, etc. That was one of the reasons Josh and I spoke so often on the phone
- never more than 2 or 3 days apart. My initial guilt was almost unbearable as I
was in Portland, OR, meeting our newest grandson - in my mind, I was
having fun while my youngest son was being consumed by the flu which led to his high
numbers. I know this isn’t the case, but as parents we all feel guilt way
too easily anyway! Even if I had been home, he was still in St. Paul, MN, a 4 hour
drive for me – so by the time I knew something was terribly wrong, day 2 of not
hearing from him after leaving messages, it was no doubt too late already. And
it is SO hard to convince these young adults they “need” someone to
check on them – without taking away their sense of independence. If character is a
measure of how long one’s life is, than my son had lived a very long life
in his short 23 years. I am honored to have been able to have loved him and to have
called him my best friend. We had over 350 people at a very short 2-hour
visitation, so he did, indeed, impact many lives!”

That was our conversation.  Feel free to respond to this either
directly to me or on our Facebook page.

You can participate here
https://www.facebook.com/Sweet16doc

Sandy is truly brave to be able to engage and converse with me on
this at this time, only days after she buried her son.  Still I
think she realizes her story can have impact in our community and
she feels empowered to share it.  We need to think about and act
upon the buddy system she refers to, in my opinion.

Feel free to reply to this email if you prefer to contact me off
Facebook. contact (at) sweet16film.com
Dan Shannon
Producer, Sweet 16

You can purchase Sweet 16 documentary DVD here

Simply use coupon code SW225  for a 20% discount in checkout at 411films.com , our very own distribution portal. The coupon is a time sensitive offer.