504 Insanity

Two months ago I wrote a post about our efforts to get a 504 plan put into place for Joseph.

Well, I finally had the 504 meeting (on May 8th) with Joseph's teacher, school nurse and school psychologist. The next day, our team's evaluation and 504 plan were submitted to the School District.

I thought we were all set.

Until last Tuesday-- when I received an email informing me that the School District's 504 person (SDP) "is concerned that there is not documentation" that Joseph's diabetes is "affecting a 'major life activity,' as narrowly defined by the 504 law and guidelines."

You've got to be kidding me.

SDP also feels that because my son "has demonstrated through test results and grades that he is a high achiever and thus he is learning adequately" our 504 team must meet again "to reconsider criteria for a 504 plan, with [SDP] guiding the team through this discussion."

It gets worse.

SDP believes that "there may not be a justification for or need for a 504 plan at this time" and when we meet, "will have suggestions for the transition to middle school and working with the middle school staff" regarding Joseph's "health care plan" and "any possible accommodations that may be appropriate."

Damn it!

I'm tired.

Really, really tired.

But if they want a fight, that's exactly what they'll get.

So far, these are the steps I've taken:

• Forwarded SDP's email to Joseph's endocrinologist, along with an urgent plea for a letter stating the reasons why she believes 504 protection is both appropriate and necessary for my son.
  

• Spoke with an attorney at the Office for Civil Rights and was told that I can file a complaint if the District refuses the 504. That Joseph should indeed qualify for 504 protection.
  

• Contacted a Legal Advocate from the ADA, read him SDP's email and asked for help. His response: "I want to be at that meeting."

• Sent an email to my JDRF support group's leader asking for names of those who've been through this battle before-- and won.

• And finally-- not slept.
  

Since Tuesday, I've been scouring the internet, reading every possible document I can find on Section 504 law.

I've also been worrying.

Because several weeks ago a secondary school principal told me that we were not going to get a 504 for Joseph-- that "the District will never go for it-- they just don't do 504 plans."

She's never even seen one.

But that's not all.

For you see, while the middle school we've chosen for Joseph is awesome, and (get this) the school nurse there has Type 1 Diabetes and wears a pump herself, she is adamantly against 504 plans for kids with diabetes.

How do I know this?

She told me.

Last fall, at an ADA Safe at School Seminar on how to create a 504 plan, this nurse joined the audience and played devil's advocate throughout the presentation-- even after the seminar, going so far as trying to talk those parents in attendance (including me) out of doing 504s for our kids.

Also, Joseph's endo informed me at our last visit that "many times" their clinic has "butt heads" with this nurse over the issue of 504 plans for her patients.

Bottom line-- if I don't put this thing in place now, it's gonna be A LOT tougher getting it next year when we'll be dealing with this nurse.

So there it is.

If any of you have gone through this process successfully, please share your stories.

Based upon what criteria was your child deemed eligible for 504 protection? Was your child doing well academically? How did you overcome any resistance to the 504?

Oh, and by the way, SDP has scheduled our meeting for June 8th -- just one week before school lets out.


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For those unfamiliar-- Section 504 is a federal law that protects a child with a disability from discrimination and ensures that accommodations are made for their condition (i.e., allowing a child with diabetes to test their blood sugar in the classroom, re-take an exam if their blood sugar is low, etc... ).

If you have a child with diabetes, and that child attends school, you want your child recognized as "eligible for 504 protection" and you want to put a "504 Plan" in place.

A Health Care Plan alone is simply a guide-- not a legal document. In other words, no school district employee is legally required to follow it.

For more information, go here and here.

Now I Can Tell You

This happened almost three weeks ago -- in the midst of all that eye business.

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Leaning over, I whisper:

"Honey, it's time for you to wake up."

A low sigh.

"C'mon, Sweetie-- you've got school today," I say while gently stroking a warm, slightly damp cheek.

That's when I smell it.

"Honey, Honey-- wake up."

Eyelids flutter, and then a very tired voice:

"I don't want to get up."

"Honey, did you have an accident?"

A confused look.

"Did you wet the bed?"

Her eyes widen.

"No, Mama-- I'm just sweaty," she says.

But the smell is unmistakable.

Minutes later, I'm a few feet outside the downstairs bathroom. The door is open, Stephanie Miller chuckles on the radio, while Ryan -- shirtless, his back to me -- washes his face.

For a while I just stand there.

Silent.

Damp underpants held loosely in my shaking right hand.

This is too much . . . it can't be happening.

Finally, in an unsteady voice I tell him.

"Evan had an accident."

"What?" Ryan says, turning his wet face toward mine.

"She wet the bed," I choke, "Ryan-- she's never done that before-- even when she was potty training -- no diapers, no pull-ups. Not since she turned two."

"Okay," he says in a cautious tone, "we'll just check her."

She's already eaten breakfast by the time I can convince her to let me check her blood sugar.

216.

I drop heavily into the chair next to hers.

"Would you like to watch something on TV?" I ask weakly-- deciding that today she can miss her cooking class at the Y.

Soon she's sitting happily in front of Sesame Street.

While -- for nearly an hour -- I pace nervously around the house, finally ending up seated on the edge of my bed, unable to do anything.

Until the bedroom door bangs open and in runs Evan, brown eyes shining.

"Mama, let's play ice cream shop!"

(To play this game we have to go outside where Evan can work in her "shop" behind our birch tree. She creates fabulous imaginary frozen treats -- like "cotton candy-sugar cookie ice cream" -- and serves them to her favorite customer-- me.)

"Sweetie, why don't we check your blood sugar again first?"

"I don't want to-- Mama, it hurts."

"Oh, Honey -- sometimes we have to check our blood sugars-- hey, do you want me to use that little meter?"

I pull out our new, unused OneTouch UltraMini.

"Awwww-- it's so cute. Mama, can that be mine?"

"No," I say sharply.

Then in a softer tone: "No, Honey-- we're just using it."

I twist the barrel of Joseph's lancing device so that a fresh needle is loaded, then dial down the lancet-- from the highest to the lowest setting.

Holding my breath, I take one tiny, four-year-old finger-- and poke.

Five. Long. Seconds.

85.

I blink back a sudden rush of tears.

And then, very quickly my mind reviews the data:

Before that first check, I only wiped her fingers with a damp paper towel-- and she'd eaten a banana just 20 minutes prior to the test.

She hasn't been excessively thirsty.

She hasn't lost any weight.

Nor has she been urinating frequently during the day.

"It's all right," I say-- still staring at the meter's display. "It's all right."

"Mama, I'll never have diabetes. Right?"

My head snaps up.

The question startles me. To hear her say it out loud like that.

"Oh, Honey-- I don't think you will."

And with those words -- and that test -- I feel myself slowly climbing out of a very deep, very dark hole.

For a long minute I just sit there, looking into my girl's beautiful, expectant face-- until finally I clear my throat.

"Hey, how 'bout we go play some ice cream shop?"

With a huge grin, my little monkey leaps out of her chair and makes for the door.



Post Script:

Three days later, Evan had a second overnight accident.

But, since I began insisting she go to the bathroom before bedtime, it hasn't happened again.

I also continue to do random bg checks: overnight, she's been in the 80s; two hours after meals-- 80s to 90s; and first thing in the morning-- 68-75.

And (knock every stick of wood in the house) we haven't seen another high.

Russian Roulette

Every time I step into a doctor's office these days-- whether it's about me or one of my kids -- it feels like I'm stuck playing this horrible game yet again.


A six-chambered cylinder -- loaded with one deadly (or potentially maiming) round -- is spun.

And the damn thing doesn't stop spinning for hours, days, weeks-- sometimes months.

Thankfully, the chamber has always been empty.

So, yes-- I win again.

Still have narrow angles.

Am still gonna need laser surgery at some point.

But-- there's no sign of any damage.

Visual field test-- perfect.

Corneal thickness test-- better than perfect.

People, I got me some mighty thick corneas -- which bodes extremely well for anyone at risk for any form of glaucoma.

What this all means is that we can rule out those scary, low-level narrow-angle attacks the doc was concerned I might be having.

(Thank. God.)

In the meantime -- though narrow -- I've still got a good amount of space:

On a scale of 1-4 (with 4 being "wide open" and 1 "needing surgery now") -- my angles are a whopping 2.

I wasn't exactly thrilled when the doc shared this rating with me-- but then she went on to describe the rather nasty sounding, four-tiered 0 to 1 scale...

So what's next?

We monitor it.

I go in at least once a year-- or if I experience any symptoms of an angle-closure attack.

Of course, I didn't leave this all sit without asking a boatload of questions-- ending my barrage with this one:

"If these were your eyes, and you got these test results-- would you just have the surgery?"

"Sandra, I'd wait. Though it's a pretty benign procedure, you likely won't need it for quite some time. Of course, as you get older and develop cateracts, your angles will certainly become more narrow, regardless-- simply because of the aging process."

"Cataracts? Wait-- I'm gonna get cataracts."

Eyes roll, a hint of a smile, and then:

"Sandra, everyone gets cataracts."

"Oh."

Too Much Grist

So much, in fact, that I've had no time to post about it.

In short, there's been:

• The run-up to, and subsequent, 504 meeting (Man, was this ever grist-- I'm still shaking my head over this one... )

• Middle. School. Mania. (After many school vists, phone calls, orientations -- and much, much agonizing -- we've finally made a decision. And folks, Joseph will not be going to the school I wrote about here.)

• Lots of Little League Baseball (and one particular game that featured some pretty wonderful highs and one crushing low)

• A major scare with Evan-- one I just couldn't bring myself to write about
  

• Still more junk with my eyes (speaking of-- I go in for those follow-up tests today... )

• And finally-- Too. Much. Mulch.

I promise to start posting soon with a bit more regularity-- beginning with the above topics.

In the meantime, I'll leave you with some recent snaps of the kids:

The Southpaw...





And the Ballerina

Okay, So Here's The Deal

First, sorry for the insanely late update, but a couple of other things -- extremely upsetting things -- kept me away from the blog.

And seriously upped my already through-the-roof stress level.

(More on those "other things" in a later post.)

So let's get down to it.

The eyes.

Well, there's no mistake-- I got me some narrow angles.

And yes, I will likely need to have laser surgery...

Late Tuesday afternoon, I'm sitting in yet another exam chair-- chin and forehead pressed into supports.

Trying hard to breathe.

While Eye Doc #2 looks at each eye through her microscope-like device.

"Sandra, did Doctor C use a goniolens during your exam last week?"

"Um, no- I don't think so," I tell her.

The doc turns to her technician-- "Is she still anesthetized?"

"She should be-- I checked her pressures just a few minutes ago."

Then the doc turns back to me.

"Sandra, I need you to bring your forehead right there, right up against the support."

"Oh," I say-- swallowing hard, and then leaning forward once again.

"Now I'm going to hold your right eye open," she says, as she puts her thumb and forefinger on my upper and lower lids.

" . . . and I'm going to place this lens on your eye."

She then pushes the wide end of a large circular lens against the front of my eye-- a bright light shines through it.

"Sandra, I need you to look straight ahead... just try to keep that eye looking straight ahead."

But I can't.

My eye is movin' all over the place, while my lids try mightily to expel this thing.

She attempts the other eye, but this one is worse-- because I feel a sharp pain as the "goniolens" is pressed firmly against it.

The doc moves her chair back, and for a moment, says nothing.

And then:

"Sandra you're awfully sensitive about your eyes, aren't you?"

"Oh yes."

"Now is this hurting at all?"

"Actually-- yes, it is."

She turns to the tech and asks her to put in more anesthetic drops-- which help a lot.

Because minutes (and much deep breathing) later, the test is done.

"Sandra, you do have narrow angles-- and you've been experiencing pain. The kind of pain that could be indicative of a narrow-angle closure attack."

"But my pressures are good," I remind her.

"Typically, the pressures would rise during an attack, and then return to normal after."

"Oh."

"Have you had any nausea or vomiting? Severe pain in the eyes?"

"No, just headaches and dull pain over the front of my eyes."

"Hmmm... what we could do today is dilate your pupils."

"Wait- what?"

One of the things I'd read -- both online and in the handout the technician gave me shortly before the doc joined us -- was that pupil dilation could trigger a narrow-angle closure attack.

Which in turn, could cause blindness in a matter of days-- even hours.

" . . . we would use a mild dilating solution-- one that would cause your eyes to dilate as if you were, say, in a movie theater.

"We could then see if your pressures increase in response to the dilation-- giving us a better idea of how soon you might need to have laser surgery."

"Wait, wait-- what if something happens? What if my pressures go up right now? What if I have an attack right now?"

"Then we'd give you medication to bring down the pressures-- and once back down, we'd do the surgery."

"I don't know," I say, shaking my head.

"I understand your trepidation, but dilating your pupils would also give me the chance to look at your optic nerve-- to see if there's evidence of an attack."

"But I thought that what was going on with my optic nerve wasn't related to these narrow angles."

"That's not necessarily true," the doc says.

We talk some more-- about the surgery, the risks...

And finally, I say:

"Let's just do it. If something's gonna happen I'd rather it be now than in a movie theater with my kids."

So the drops go in.

And I go out-- to a seat in the waiting area -- with a description of Laser Iridectomy and a consent form sitting on my lap.

Frozen.

For 30 minutes.

Until--

Nothing happens.

Yes, my pressures go up, but not dangerously so.

"Sandra," the doc says, as she looks at the back of my eye, "you do have some prominant cupping of your optic nerve."

"Is that what Doctor C was talking about when she said 'swelling'?" I ask.

"Yes."

She then pulls back her chair and says, "Let's get visual field and corneal thickness tests scheduled-- I'm pretty confident that you're not in any immediate danger of having an acute narrow-angle attack-- yes your angles are narrow, but there's still a good deal of space there.

"However," she goes on, "you could be experiencing something called chronic narrow-angle glaucoma."

"Chronic?"

"Yes, you could be having low-level attacks that may be causing damage-- " she says as she looks through my file, "now, it looks like optic nerve cupping was noted two years ago, and it looks a bit more pronounced than- "

"So do we just schedule the surgery then?" I ask, trying to stay calm.

"Sandra, you're really in the grey zone here. We could schedule the procedure, but because nothing looks imminent, I think we need to do more tests."

And I want to scream.

"I was just hoping to hear something definitive-- you know? One way or the other."

"I know-- sooner or later you may very well need the surgery-- because as you age, those angles will become even more narrow. We just need to determine how necessary it is for you to do it now."

And then she adds:

"You may even decide to do it sooner simply to avoid the stress of wondering if and when you might have an attack."

So, instead of waiting until late June, I'll be going back a week from next Thursday for more tests.

And if those tests aren't conclusive?

Well, I might still do this thing-- because walking around with the equivalent of some kind of time bomb sitting in my eyes going tick, tick, tick with each passing year is almost certainly more than I can handle.

This Is Ridiculous

I've been having some headaches lately.

And well, my eyes have been buggin' me.

A lot.

So I call the eye doctor's office on Friday and tell them I think I might be having some trouble with my new eyeglass prescription.

I also mention the optic nerve swelling that they discovered at my last visit -- a month and a half ago.

A few hours later, I'm sitting in an exam chair-- face forward, chin and forehead resting against supports.

"Sandra, I don't think the pain you're feeling is coming from your new eyeglasses," Doctor C tells me. "They match your prescription, and you're testing 20/20 while wearing them."

I can't see her face as she says these things-- the room is dark, and she's looking at me through a large microscope-like contraption, while flashing a light into each of my eyes.

After a few moments, she has me lean back and out of the supports so she can put in some anesthetic drops.

"I'm just going to check your pressures."

Soon a bright blue light is moving first toward my right eye, then the left.

"Now, just keep your eye wide open," she says.

But I can't stop myself from blinking that left eye.

"I'm sorry," I tell her, "I really hate it when anything comes near my eyes."

"It's all right, Sandra," she says gently, "you're doing just fine."

After a few more attempts, she finally gets a reading.

"Well, your pressures look good."

Thank. God.

Then she gets up and -- without saying a word -- turns on the light, sits back down in her chair, and starts writing.

Finally, she puts down her pen and turns to face me.

"Sandra, I'm going to schedule an appointment for you with a surgical ophthalmologist."

"Excuse me? ... a what?"

"Your eyes have narrow angles, and we need to have a surgeon assess whether treatment is indicated."

"Narrow angles, wait a minute-- what exactly does that mean?"

"Well, it means the angle between your iris and cornea is narrow-- and I'm afraid that places you at high risk of developing narrow-angle glaucoma-- a disease that can rapidly lead to vision loss."

She then adds quickly:

"But if it's caught early, it's very treatable."

"Caught early- wait-" I stammer, "how is it treated?"

"Using a laser," the doc says calmly, "a surgical ophthalmologist puts a hole in your iris-- this allows the fluid to drain."

"A hole?"

"Yes-- it's very small."

"In my iris."

I try to swallow.

But my mouth is suddenly bone dry.

"Sandra, it's an out-patient procedure that is very straight forward."

"Doctor C," I begin, my voice a little shaky, "do you remember when I tried to do contacts a few years ago? When I failed miserably because I just COULD NOT STAND anything touching my eyes. Well, the idea of a laser scares the hell out of me."

"Don't worry-- really."

"Is there any other treatment for this-- like drops?" I ask, helplessly.

"I'm sorry-- no."

"Why didn't you see this thing a month and a half ago? I was just here."

"Sandra, your eyes were dilated before I examined you-- it's something I can only pick up before a dilated exam."

For a moment, I don't say anything.

"Now, if it turns out that I do need the laser surgery, then is that it? Does it take care of the problem?"

"Yes."

"Would the surgery also address that other issue you found with my optic nerve?"

"No, Sandra. Those are two different things."

Damn.

"Are there any risks involved with this laser treatment?"

"A surgical ophthalmologist will go over that with you in more detail-- but yes, as with any procedure, there are risks. But it's far riskier not to have it done."

So together, we head out to the front desk-- and within minutes discover that none of their specialists has an opening for several weeks.

"We need her to be seen-- and no later than two weeks out," says my doc to the receptionist, who then turns to me and says: "I'll call you early next week with an appointment date and time."

So that's it.

Now if I'd posted about this over the weekend, my tone would have bordered on the hysterical-- seeing as how a cursory googling of the words "narrow angles" turned up some mighty scary stuff.

(Not to mention the fact that this image from A Clockwork Orange kept rolling around in my head all weekend -- because I CAN NOT imagine any other way they're gonna keep my eyes open if I need this laser surgery.)

But I've had a couple of days to get a hold of myself.

And this morning, I phoned another ophthalmologist's office-- one who specializes in glaucoma.

I see her tomorrow afternoon.

When hopefully, I'll find out that this is all some kind of mistake.

Water and Sand

Three weeks ago, we were in Florida.

And I can't think of a time in the last two and a half years when my son had a greater sense of pure freedom.

It was the ocean, really.

He spent hours each day playing in the surf-- and trying to "skim" board along its edge.



Absolutely determined to learn how to do this thing...



... the whole time, no pump, no infusion site (they didn't like the salt water).

No need.

Just injections for food during the day; a new infusion site (so he could wear his pump while he slept) at night.



And my God, each and every glorious day that Joseph was on the water, he never once went high or low...

My boy was in heaven.

We all were.

Oh, and there was this one afternoon-- when I got a taste of my own kind of freedom...




... by just playing in the sand.