Saul during a diabetic high (video)

One of the 500 reasons I hate Type 1 and what we've been dealing with here lately....

Sometimes I wonder.

During a daily twitter check, I stumbled across a girls you-tube video about non-diabetics supporting those with diabetes. She looks to be in her mid-twenties and she offers advice (I'll paraphrase) "don't nag" "ask how to help" "be patient." I gave it a re-tweet and "liked" on Facebook and now I'm sitting here thinking about what she said.

I've actually been thinking alot this morning... mainly about the future - Saul's - and... mine.

I thought to myself... man... I wouldn't want to be his pre-school or Kindergarten teacher. I mean... come on... if you think those folks have it easy... well... go observe some classrooms. I keep thinking... if his BG doesn't get regulated and it seriously continues to be a 24-7 managment of highs and lows what in the world are we going to do with him? Where will we send him? I'm not going to send him to a classroom with 26 other 5 year olds. What if he's like his Dad... and just "deals with things" never tells the teacher when he's feeling high or low cause he doesn't want to bother anybody or get in trouble. What happens when other people (lots of other people) witness his crazy personality changes... "hulking out" at high numbers and slipping into a quiet lethargic state during lows.

Will he be proud to show off his pump and monitor to all the kids on the playground. Will he be embarrassed and hide his pump and tubing so no one sees. Will he be sneaky and sometimes use diabetes as a means to go to the bathrrom or sneak candy who shouldn't eat?

How much should I be involved? Do I let him advocate for himself starting at a young age? Should I stay on him constantly about taking care of himself. Should I expect daily reports when I'm away from him?

I'm not a coddler. In so many ways I'm a hands-off kinda Mom... but how do I balance supporting him- teaching him- loving him without letting the "Big D" get in the way of a normal mom-son parenting realationship.

The "rough patch" that started about a week or so ago continues. The 24 hour My Sentry reading is ridiculous. I can't help but feel guilty like it's my fault... like maybe I'm not counting carbs correctly... maybe I'm waiting to late to bolus... and I can't help but wonder... will he ever feel guilty? Feel guilty for eating one too many cupcakes... feel guilty for being "difficult"... feel guilty for causing others to worry, stay up late, needing help... or worse... will anyone else ever worry? Will his teachers care.... or be frustreated that they have to deal with him... dread getting "that one."

How do I raise him to let the guilt go... to just accept it and move on. How do I raise him to laugh things off and find the humor in the cards we are dealt? Maybe I need to start with myself.

Toddler transformation

Well. I’m gonna go ahead and talk about it, even though I don’t really want to talk about it.
Our closest friends have witnessed it. Our pediatrician has now witnessed it…. twice. Jeff and I deal with it daily and often nightly….  and quite frankly neither one of us have gotten any better at handling it.

“It” would be the unbelievable, unexplainable, transformation from the sweetest boy I know into well… hmm… how do I put it… a raging, crazed, uncontrollable beast of a child.  

“It” comes on fast. As fast as his blood glucose rises and falls- “it” gives no warnings, lest a few grunts, grumbles and fussy whines. At first I used to be the one who was able to console him, calm him, almost halt the process but now it seems when he’s in the midst of “it” even I can’t calm him down.

“It” usually happens only when his BG is high – above 300 which unfortunately has been quite frequent. My internal clock is set by “it”. Because no matter what, “it” always happens…  on cue…  like clockwork between  12:45 a.m. and 1:00 a.m. Which also happens to be when episodes are the worst.

He hits. thrashes. lashes out. screams blood curdling screams. throws any object in reach (including his beloved bop bop ). He refuses to drink (crucial to treating high BG’s with large ketones). He rejects any form of physical touch. Our one and only saving grace and calming force is to set him down in front of Little Einstein’s and just walk away until “it” has gone away and he has returned to normal.

Handling this is difficult on a number of levels. It is mentally, emotionally and physically exhausting. But as of late, as things have progressively gotten worse I’ve become extremely sensitive to people witnessing the incidents.  I know part of it is my lack of confidence and limited experience and education in handling him during these situations. That part, I am working on. I know an even bigger part of it is the fear and embarrassment of being judged as a parent because of his behavior. I do also know, that in time things will get better, as  his language develops and his ability to control emotions  improves we may find ourselves dealing with fewer and fewer of these spells.

In the meantime I’ll continue to dread things like…. going out in public. 

Our pediatrician who has luckily witnessed two recent episodes concurs with me that the most difficult part is determining what is developmentally appropriate (“temper tantrums” are normal for his current developmental stage) and what is being triggered by the diabetes and his inability to communicate his body’s reactions to “highs” and “lows.”  It is suggested that we create a few non-negotiables no matter what the catalyst.  (like… umm… don’t slap your mother or throw iphones or ipads…. Lol).

I’ve read/heard a lot about behavior changes during hyper and hypoglycemic episodes and up until recently I guess I just blew a lot of it off…  now I’m starting to understand… and also starting to worry.

Jeff and I love Saul… and though taxing… we love him despite his mutant transformations… but I can’t stop worrying and asking myself…. will anyone else?