Sunday, October 28, 2012

Tumbling


BGs hardly below 200 all weekend.
Endo this Wednesday.
Halloween costumes not done.
Family coming next weekend.
Dryer breaks.
Only two loads started.
Probable toilet removal to access damn dryer.
10:46pm according to the Maytag doggie pendulum.
Poor pooch getting nowhere.



Just tumbling.


279 and 310.
Can relate to Maytag mutt.

Saturday, October 27, 2012

Looking Back: 504 Denied Part 2

Looking Back posts are my effort to journal the diabetes times
that have gone before the start of this blog.

I would like to first state that our school district is awesome and they have never been anything but supportive and active in wanting the best for my girls!  This situation basically boils down to understanding the law.

And with that...when we last left our heroine she was fighting to the death to save her cub from the evil, oppressive establishment...

The school was going to deny my request for a 504 for Roo.  I was disappointed because now I was going to have to show a school district that they were wrong about something they had probably done hundreds of times for decades.  Well, at least in regards to diabetes.  Crap. 

The law in a nice package:
Roo is entitled to a 504 Plan because she has a physical impairment that substantially limits a major life activity, that of a major bodily function, her endocrine system.  She is to be evaluated without regard to the ameliorative effects of mitigating measures such a medicine, her insulin.

Translation:
Roo's got a busted pancreas that Congress says limits a major life activity and you have to evaluate her as if she doesn't take insulin so give her the 504.  Or you could say - take the insulin away and she would definitely be limited in a major life activity - LIFE! - but I don't think you can link "life" back to the amendment as neatly as you can the endocrine system.

I tried sending an email quoting the law and sending links to helpful sites that spell out why kids with Type 1 Diabetes are entitled to a 504 plan but I doubt they really read it.  It was going to take a 3rd party and I caught a break when the the school themselves sent me an email with just the contact I needed:

Mrs. Laura

It was a pleasure meeting with you last night, and whereas we disagree an Roo's eligibility for a 504 Plan, we look forward as a District to serving all of her needs, both medically and academically, through a Health Plan.

I read your quotes below from the Ed.gov website, thank you for including those.  At last night's meeting, we all agreed that Roo does have a disability, in this case diabetes.  However, when going through the eval, and please correct me if I'm wrong, we also all agreed that Rhea's disability does not "substantially limit one or more of her major life activities."

   >> Only when BGs are good.  Obviously I did not make it clear in the meeting.  Probably has something to do with the beeberbeeberbeeee. (fingers strumming lips and not this

In fact, the highest we came on the scale was "mild".  Because of that, and her current and history of grades (all A's), and feedback from her current teachers, we determined that Roo does not qualify for a 504 Plan. 

   >>Just because she is a good student doesn't mean she doesn't qualify

However, <oppressive establishment> will be implementing a Health Plan for Roo that will contain, at your request, a few academic accommodations (extra time if needed, etc.).  Plus, as you also said, the teachers in the District, and the Nurses, are already doing a great job of working with Roo.

  >>SO TRUE!

 Your concern, and it is valid, is when or if something should worsen with Roo's condition, that she will not be penalized for that.  I want reassure you again that will not happen, whether she has a 504 Plan or not.  What I took away from the meeting was that you're not disputing any of that, you just feel Roo is entitled to a 504 Plan based on her diagnosed condition of diabetes and the possible implications that could have.  We feel as a District that we will be able to best serve Roo through a Health Plan.

All of that being said, and as promised, I would like to give you some contacts that you may want to explore if you'd like to appeal the decision that has been made by our District. 

<insert contact at the state Department of Education>
<other stuff telling me they are denying the 504>

Sincerely,
Mr Counselor

and he cced the Dept of Education.  Sweet!

We set up a conference call with an attorney from the state Dept of Education and he basically repeated the law about mitigating measures (he obviously didn't want say directly that all Type 1s basically auto-quality) until the school understood that there was no other choice but to grant the 504 because without insulin, Roo's evaluation would have a completely different outcome. 

Poor guys though. It's never fun to eat it. I'm just thankful that they LISTENED. Some schools don't.  It was the mitigating measures that was throwing them I think.  They were pretty worked up towards the Dept of Ed that it has not been made clear in their training or other means how to do this correctly. It also prompted the Dept of Ed legal rep on the call to promise an update/refresher correspondence to all the districts.

The 504 Plan was granted and I must say that I did have a moment after talking to the Dept of Ed where I wanted to shout "Power to the people...with Type 1!"


Resources that learned me everything:
http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/legal-protections/section-504.html
http://www.diabetes.org/assets/pdfs/schools/adaaa-eligibility-for-504-coordinators.pdf
http://www.diabetes.org/assets/pdfs/schools/adaaa-faq-march2009.pdf
http://www.childrenwithdiabetes.com/d_0q_000.htm
http://forums.childrenwithdiabetes.com/index.php
http://www2.ed.gov/policy/rights/guid/ocr/disability.html
Real life support from ADA.

The Law:
STUDENTS PROTECTED UNDER SECTION 504
(I  used have a cool link for this but now it goes to a scary site with huge list of bills)
Section 504 covers qualified students with disabilities who attend schools receiving Federal financial assistance. To be protected under Section 504, a student must be determined to: (1) have a physical or mental impairment that substantially limits one or more major life activities; or (2) have a record of such an impairment; or (3) be regarded as having such an impairment. Section 504 requires that school districts provide a free appropriate public education (FAPE) to qualified students in their jurisdictions who have a physical or mental impairment that substantially limits one or more major life activities.

Congress also provided a non-exhaustive list of examples of “major bodily functions” that are major life activities, such as the functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions. 

Here are the sections of the The Americans with Disabilities Act Amendments Act of 2008 that apply to Roo:
   Sec.3 Definition of Disability
        (2) Major Life Activities -
             (A) In General  -  "...major life activities include, but are not limited to, ...learning, reading, concentration, thinking."
             (B) Major Bodily Functions. -  "...a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the....endocrine,...functions." 

        (4) RULES OF CONSTRUCTION REGARDING THE DEFINITION OF DISABILITY.—The definition of ‘disability’ in paragraph (1) shall be construed in accordance with the following:
             (E)(i) The determination of whether an impairment substantially limits a major life activity shall be made without regard to the ameliorative effects of mitigating measures such as—
                 (I) medication,...


Thursday, October 25, 2012

Looking Back: 504 Denied Part 1

Looking Back posts are my effort to journal the diabetes times
that have gone before the start of this blog.

Last year Roo entered high school and I thought it would be a good idea to get a Section 504 Plan in place to protect her academically.  Because Type 1 Diabetes is considered a disability under the Rehabilitation Act of 1973 and the Americans with Disabilities Act we can request accommodations for her to ensure an equal education to her peers.

The following is an excerpt from the conversation with the high school counselor to request a 504 meeting :

Counselor:  A 504 is not given automatically. We will evaluate Roo and how she compares to her peers and then determine if she needs a 504 and if we will "grant" her a 504 plan or add academic accommodations to her health plan.

Me: <hesitate> Well she is a good student so I don't understand what you are going to compare to her peers. uh....whaaa?


Counselor: Most likely then she won't need a 504 and we can add an academic accommodation to her health plan.

Me: <silent> Uh huh. <nod>. Wellll...I'm interested specifically in protecting her if anything should happen during placement or standardized tests and testing and treating anywhere/anytime. oh no, he doesn't know he doesn't know


Counselor: Yes, we can put that in the health plan and you won't have any problems with the teachers and if you do then come and see us and we'll take care of it.

Me: <crickets> I see. When do you do your meetings? I'm pretty sure you can't deny Roo a 504. Why must you torture me? Now I have to do this and that and type up this and make calls. 


They evaluated Roo (which is the proper procedure) and a meeting was set.  The high school principle, the counselor, the nurse and myself were in attendance.  The counselor went over the evaluation and the results kept being she was doing fine, her learning is not being negatively affected by her disability.

Because I'm such a freaking blubbering idiot in public all I kept repeating was "but things can change quickly", "she's not negatively impacted only if her blood sugars are in range", "she is entitled to a 504".  I had a folder packed full of copies of the law but I didn't dare pull it out because everything I had gone over before the meeting was jumbled in my head and surely would come out of my mouth as "ummm...daahhh...beeberbeeberbee" (finger strumming lips).

They basically already had decided to deny Roo a 504 Plan because she is not "substantially impaired" in learning.  It's not about learning really and I did not agree and at least was able to make that clear.  They were trying to "educate" me and I was trying to educate them (ya know, by repeating my three phrases and never referring to my resources). It was calm but heals dug in on both sides. They even made a comment about they've run into this before but I was being nice about it. I laughed. I just said "There's no point in screaming...yet."

So I had some more work to do.

TO BE CONTINUED...




Saturday, October 20, 2012

The In and Out of Benefits Enrollment

It's benefits enrollment time of year.  The last several years I've been able to roll over my current plan which makes it sooo easy.  No change of info at every appt, no making sure we're covered, no making sure everything is billed correctly, etc. 

This year they offer my same plan and  I just did my normal quick look-up for our pediatrician and endo to make sure they were still in-network and lucky I did....they are OUT of network.  And then it just got stranger.  Here is a list of medical providers we are certain/likely to use and whether they are IN or OUT of network for the NEW plan I have to switch to:

Local clinic...........................IN
Local clinic lab......................OUT
Pediatrician...........................IN
OB/GYN...............................IN
Physical Therapist (in clinic)....OUT
Local Hospital........................IN
Chiropractor...........................OUT
Children's Hospital..................IN
Children's Hospital lab............not found
Pediatric Endo.......................IN
CDE.....................................not found

The clinic is IN but the lab is OUT?  They did that just to mess with me.


Thursday, October 18, 2012

Swinging and Singing

As a parent of a child(ren) with diabetes have you ever actually timed and counted the swings of your emotions in a day?   Just this evening:

6:00  spent - home from work
6:01  glad - see Pink's sweet face coming to greet me
6:02  concern - funny look on her face and she informs me she just treated a 58
6:05  alert - cuddled on couch waiting out the low
6:08  disgusted - no supper, no nothing done before I got home
6:09  empathy - Pink feels very bad and survival hunger kicks in
6:10  irritated - Pink developing major attitude with lows and highs
6:20  relief - Pink coming up and happily shoveling food
6:25  worry - Roo leaving to drive to school and musical practice with lots of dancing
6:30  disappointed - baseball on instead of Big Bang
6:31  numb - computer time and mundane household stuff
7:30  surprised - Pink remembers to take shower without reminder (Haaa-lle-lu-jah!)
8:30  slight alert - Pink not out of shower yet but have not heard loud thud of wet, limp body hitting shower floor
8:31  JOY - Pink singing in shower (I experience equal joy hearing littles singing on the potty)
8:40  happy - Roo home a little early - no problems
8:45  amused - Pink cuts her eyes at me as she goes to get her forgotten pump after I ask if anyone needs an insulin refill
8:46  heartbreak - a flash of their futures never, ever away from insulin sneaks in
9:00  miffed - Roo needs more money for two more freakin' school something-or-nothing t-shirts.
9:10  tickled -  Roo's ooo and ahh at the sparkly dresses on Project Runway.  She's such a foo-foo girl.
9:30 wasted - still have to test BGs and make plans for the night...UGH and pack a cooler for Roo's away football game tomorrow.

That would explain the urge to hide under my blankets sucking my thumb.

But then I would miss the singing!

Tuesday, October 16, 2012

Looking Back: Pump Start Day

Looking Back posts are my effort to journal the diabetes times
that have gone before the start of this blog.


May 4th, 2011
We're going to...(clap)...pump you up!


Sunday, October 14, 2012

Two Years


It's been two years since Type 1 Diabetes came into our lives.  How do I feel?

I feel thankful. 

I feel tired.

And I feel...normal.  Yeah, normal.  Huh.  Who would have thought?  I feel normal.

I guess that's good.  My brain has reconfigured.  Reconciled.  It now has a dedicated diabetes thought process that runs continuously.  My stress cup has a reserved volume dedicated to diabetes so there is less room than before for other stresses.  But basically this is just what we do now.  I don't have to like that this is what we do now, and I don't, but for the better part of each day we just live our lives.  The good, old fashion, comfortable routine of life.

Two years ago I could not imagine that constant, unrelenting panicky feeling ever subsiding. The exhaustion.  The ever present certainty that I didn't have a freakin' clue what I was doing.  Really knowing what it meant to live day by day.  The fatigue.  So much fatigue I worried I would do something wrong and harm the girls.  The overwhelming urge to wrap my babies protectively in my arms and never let them out of my site*.  The worry.  The crushing, paralyzing heartbreak.

Of course these things are still around.  Some seem to spend most of their time hibernating and others just take naps.  Except the heartbreak.  I can't get the heartbreak to sleep but at least it mostly sits quietly in the corner.  It feels a lot longer than two years but here we are.  Our normal. 

My girls are here with me.  Beautiful.  Healthy.  Thriving.  Laughing.  Living. 

I'm thankful.

Roo and Pink


*sometimes used in place of "sight" when a d-mama's brain is not fully reconciled.