School Issues and 504 Plans

This morning I spent an hour and a half talking to Scott for the Juicebox Podcast which is featured on his blog, Arden’s Day.  Scott and I talked about issues with diabetes accommodations at school, and how to negotiate for some of the things that may seem like common sense to D-parents, but that schools aren’t always so quick to embrace.  I had specific questions about how he managed to convince his daughter’s school to allow him to manage her diabetes from afar via text while she is at school.  Many schools have strict “no cell phone” policies, and our school in particular has been prickly about allowing cell phone use, even for medical care, unless Angelina is in the office being directly supervised by the nurse or health tech.  Of course, my feelings (and I’m sure the feelings of many others) is that this requirement seems to defeat the potential benefit of texting.  My desire to be able to communicate with Angelina through text is to help avoid some of the extremes that would require an adult’s help, such as very high or low blood sugar, and also allow her to remain in the classroom so she is not missing important instruction or classwork because of her diabetes care.  From my perspective, she and I being able to text during the day about her diabetes care is a win-win situation.  She gets more butt-in-seat time in class AND I am able to help her address issues with blood sugar levels as they happen, instead of waiting until the next office check-in time – at which point it could be anywhere from 1 to 3 hours that a rogue blood sugar goes unchecked.

The podcast will be shared in the next couple of weeks on Arden’s Day and I will be sharing a link to it if any of my readers are interested in hearing it at that time.  I also will likely be writing a bit more about school preparations and 504 Plans in the next few weeks as we inch closer to back to school time.  Be sure to check out the “504 Plan” and “Education” tags in the upper left sidebar to see my previous posts on these subjects and the evolution of our relationship with Angelina’s school regarding her diabetes.

Take A Deep Breath and Count to 10

Back in December one of my favorite D-moms posted an article about diabetes and depression in children.  It is an anonymous D-mom’s story about her 11-year-old son suffering from depression and ultimately ending up in a psychiatric hospital for stabilization.  The story touched me in many ways, at first because I have a child who is 11.  Second, because I’ve personally had the experience of spending some time in a psychiatric hospital for severe depression.   The story made me feel very deeply for this family because it was hard to imagine watching my own child go through this same sort of downward spiral and not fully realizing exactly how deep that spiral had gone.  And then having the added fear of not only hearing your child say they want to end their own life, but then also trying to make arrangements for them to be safe, when everyone you talk to at the facility they are going to doesn’t understand or know how to manage their diabetes.  And because your child is depressed and suicidal they can’t manage their own care because, in case you didn’t realize it, too much insulin can be a deadly.  Lack of insulin can be deadly. Having suicidal thoughts and not getting proper treatment can be deadly.  I don’t want to even think about how helpless that mom must have felt having to make those arrangements.

A few weeks before this article I had been growing increasingly concerned about Angelina’s mental health.  Her therapist had also expressed some concern about her moods and was concerned about depression.  She had become more withdrawn in her therapy sessions and about every third session she wouldn’t speak at all, but sit and sulk.  At the beginning of January we met with her psychiatrist (who prescribed medications for her ADHD) and I had briefly mentioned we were concerned about depression and requested that she reach out to the therapist. I signed a release form and hoped that the therapist would be able to explain better than I was what was going on.  The psychiatrist seemed unaffected and said that mood swings were common at this stage.  We discussed how her current ADHD medication didn’t seem to be working well for her anymore and she prescribed a new one to try.  She suggested that we keep an eye on things and follow-up next month.

Things continued this way at therapy for the month of January.  The first week of February we met with the psychiatrist again and again I expressed concern about depression, as well as the therapist’s concern about depression.  She seemed to take things a little more seriously this time, but we still mainly focused on how things were going with the new ADHD medication and general talking points “How’s school?” Fine. “How are your grades?” I don’t know. “Are you hanging out with any friends?” No, I don’t really have any friends.   Those were about the only words muttered by Angelina in our 25 minute visit before she sort of curled up on the end of the sofa and started at the floor.  Any further attempts to engage her were met with stony silence.  At 20 minutes into the appointment, after nearly 3 minutes of no one saying anything the therapist says “We’ll follow-up in a month.  If she’s having more bad days than good we can possibly discuss medication.”  and we scheduled our next appointment and left.

That brings us to the past month. There are still more good days than bad, but there are more of those days where one minute things are fine and the next minute her entire attitude, mood and disposition change and she is sullen and completely withdrawn and refuses to speak or interact. About 3 weeks ago Angelina’s therapist asked me back to talk alone for a few minutes, and I ended up talking to her the entire session time while Angelina sat in the waiting room.  We discussed the possibility of antidepressants and her response was “I’m a therapist.  I don’t automatically jump to medication to try to help people.  But I’ve been seeing Angelina for a year and a half and in the past few months she talks to me less and less and I’m at the point that I don’t know what to do or how to reach her.  I can’t help her if she doesn’t talk to me. It’s obviously your decision, but at this point I think medication might be a good idea.”  About a week after our last visit with the psychiatrist I mentioned to my husband that we had discussed medication for depression.  I was a bit surprised when his response was “No. She’s already on enough medications. I don’t think that’s necessary.  A lot of kids this age deal with depression.  She doesn’t need to be medicated.”  And for the past few weeks we’ve dug up this discussion a few times, always meeting at a stalemate.  We were finally able to reach an agreement yesterday.

Today Angelina saw her psychiatrist and tomorrow she sees her therapist and will start taking an antidepressant.

Life As We Know It

I realized that I had not updated my blog in quite some time (November 6th? Yikes!), so here I am to update my readership on what has caused this unintentional hiatus.

I’m sure I’ve mentioned it previously, at least briefly, that Angelina deals with multiple conditions aside from diabetes.  Most prominently is her ADHD and resulting issues that aren’t really symptoms of ADHD, but more side effects of ADHD.  Add diabetes on top of that (which often effects cognitive function when blood sugar levels aren’t where they should be) and life gets interesting.

Vacation and the TSA

If you read my blog because we belong to some of the same T1 groups then you have probably seen me posting about flying for the first time since Ang’s T1 diagnosis last year.  Or, my paranoia about being strip searched by the TSA for putting juice boxes in our carry on bags.  I am here to tell you that it was all for naught!

I have been so stressed out about what to pack for our trip as far as diabetes supplies and worried about “Is this going to get us in trouble?”  “Is this going to have to be thrown away at the security checkpoint?”  I now have the answers to those questions!  NO!  Just no!

The insides of the medical suitcase. Lots of pokey things and liquids, gels and aerosols, OH MY!

Elmo tried to make me lose my s**t!

We left Los Angeles Monday evening after a quick curbside good-bye as my husband dropped Angelina and I off at the airport.  I was a little disappointed because apparently the terminal we were dropped at didn’t have a skycap so I had to attempt to maneuver our giant suitcase (which I miraculously managed to get to weigh just under the 50 lb limit.  It weighed in at 48.6) while also carrying a giant purse, a giant backpack full of electronics, a carry on suitcase full of medical supplies, and corral Angelina!  We waited in line at the airline desk for what seemed like forever, but finally we were on our way to security.

I made a point to tell every TSA worker that we came in contact with that my daughter had T1D and that I was carrying medical supplies.  Of course, I didn’t need to and I kept being told “Tell them at the front”.  We finally made it through the (very narrow and anxiety inducing) line up to the conveyor belt.  Fortunately we got cleared into the TSA pre-check line which means I didn’t need to take anything out of any of our bags and we both got to keep our shoes on!  I told the gentleman that my daughter was T1 and that this suitcase was filled with medical supplies, including liquids.  He talked to the person running the scanner and let him know then directed us to the line for the metal detector.  I will stop here for a minute.

This was a big source of my anxiety.  We fly out of LAX and I sort of figured that if any airport had the AIT (imaging) machines, that it would be there.  TSA rules say that if you refuse the AIT you have to get a patdown.  You can’t choose the metal detector if you are supposed to go through the AIT unless you are physically incapable of standing with your arms above your head for the 7 seconds it takes them to scan you.  So, I had given Angelina an early heads up that she might have to get a pat down.  LAX does have the AIT machines, but apparently they only do them for some people and most people still just go through the metal detectors.  Woo! Was I happy to see that we didn’t have to go through the AIT.  However, when we got up to the metal detector Angelina was in front of me and the guy stops her and says “What’s that under your shirt?”  So she lifts up her shirt and starts explaining about how she has diabetes and it’s a machine for her insulin, yada yada yada. Angelina tends to be long-winded (wonder where she gets it from? *wink*) so I was just like, it’s an insulin pump and braced myself.  The guy says, okay, go on through and then stand right here and points to a spot to the side after the metal detector.

She walks through, no beeps.  I walk through, no beeps.  We stand to the side for a minute and a lady comes with a little piece of padded cloth, swipes it over Ang’s hand and sticks it in the machine then says we can go.  We walk over to the conveyor belt, grab our stuff and we are on our way.  No questions, no bag inspection, nothing.   All of my worrying was for nothing.  The whole experience was actually LESS stressful and intrusive than the last 3 or 4 times that we have flown since I didn’t have to separate out my bag of liquids and take off my shoes, etc.

The hardest part of the whole experience for me was waiting in the chute.  I am a big girl, and I am also prone to claustrophobia, so to be stuck in a partitioned line that is just wide enough to accommodate our rolling carryon suitcase, while wearing a big backpack, a big purse and said suitcase and trying to keep Angelina from knocking into things/people with her backpack was very uncomfortable.  But, we made it!

Mood lighting to encourage sleep. Unless you’re traveling with a spastic 10 y/o who’s watching Disney on maximum brightness and insists on talking to you.

The flight is a different story.  Overnight flight with a very excited 10 y/o makes for a very exhausted mom who got zero sleep in over 24 hours.  Add in a 3 hour time loss and I am just very glad that I know what to expect for our return flight.  It should be easier.  David will be with us to help and it’s a daytime flight where we gain time instead of lose it.

 

Pit stop for breakfast on the way from the airport. Nevermind it was technically 4am for us.

 

Where Angelina was 15 minutes after arriving at our destination.

 

 

 

 

 

Which Came First? The Meltdown or the Low?

 

As you can see from this (rather large) photo… blood sugar levels were floating along nicely at a pretty steady 115ish for a few hours after her very low carb dinner because she decided she only wanted chicken and sauce and not the side of rice.  Okay, fine, whatever, no big deal.   Dinner was a little later than usual this evening because I didn’t got the slow cooker started until later than I should have and so what, it happens.

We were watching the 3rd episode of Sherlock season 3 on Netflix and OMG it’s 8:45pm and you didn’t do your homework yet and you still need to take a shower before bed.  Of course, like every time I tell her she needs to do homework or shower (or both) there’s lots of whining and complaining and “I’ll do it super quick 5 minutes before I’m supposed to be asleep.  Please let me play on the computer for the next 40 minutes until then.”  To which the answer was a very firm “Not on your life.  If you can really do all that in 5 minutes then do it now and then you can have until bedtime to play.”  Makes sense, right?

Well, she did do her homework and it really did take her about 5 minutes.  But then it was time for the shower and instead she’s picking at scabs on the back of her heels.  I may not have mentioned this before but she has pretty bad eczema and one of her “quirks” is that she scratches herself bloody on a fairly regular basis despite our best efforts to keep things under wraps.  Well, she had some scratches already and she apparently decided that picking at scabs and scratching was a better use of her time than, oh, getting in the shower so she could actually do what she really wanted to do (computer time) before bed.  Around 9:10 I finally coerced her to stop picking and get in the bathroom for her shower.  Five minutes pass, no sound of the shower.  Ten minutes pass, still no sound of the shower.  At this point I announce that it’s 9:20 and she better be getting in the shower because it’s 10 minutes until bedtime.  At which point she promptly starts crying and sniffling in the bathroom.  She doesn’t want to get in of course, because all that freshly raw skin is going to burn under the water stream.

We’ve recently started recording her various “meltdowns” at the direction of her behavioral therapist so when the crying hadn’t subsided in 10 minutes I decided to start recording and go in to see what could possibly be the matter.  Of course she won’t talk to me, won’t get in the shower, won’t look at me, etc.  Just crocodile tears and lots of sniffles.  Any suggestion on my part that she now, finally, get in the shower is met with a sound that is similar to a cat that’s been backed into a corner and isn’t quite hissing, but has that deep rumbling sound they make that says “I WILL scratch you!”

After about 10 minutes I manage to get her into the shower and get her hair washed, her crying and being generally uncooperative the whole time.  I finally leave the bathroom with 21 minutes of this weird crying, sniffling, growling audio recording.  At this point her pump has also been off for almost an hour.  I think maybe her blood sugar is going to be heading upwards since no basal insulin and am shocked to see that instead she is 72 with a sideways down arrow.  I manage to check her with the meter (she, at this point, is laying in the bathtub with the water off but not getting out) and it also says 72.

And then I realize… She started dropping at 9:15.  The same time that she finally headed into the bathroom to start this entire process.

So… which came first?  The chicken or the egg?  Was this drawn out emotional meltdown the result of a blood sugar drop?  Or was she really that distraught over the prospect of showering that her blood sugar ended up dropping low?

Just one of those stupid, stupid things that we deal with living with a child with Type 1 and other emotional/behavioral issues.  It’s often hard to tell what caused what…

The End.

The end of the school year is upon us, Angelina’s last day is June 19.  This is not only the end to a horrendous school year, but also her last days as an elementary student.  When she started fifth grade we expected her to be attending elementary for fifth and sixth, but apparently the school district decided that all of next year’s sixth grade students would now be attending middle school, or transferred to some of the K-8 schools in the area.  I have mixed feelings about this, first because I thought I had another year of my child still being a child, and something about her graduating to middle school a year earlier than expected makes me feel apprehensive about the years to come.  I know that it shouldn’t, since regardless of what school she goes to, she is already sprouting like a little flower and no longer resembles the little girl she was a year ago.

I haven’t quite decided if it was the start of her metamorphosis that triggered the start of her life with diabetes, of if perhaps it was the insulin that she was lacking before diagnosis, that she now gets externally, that kept her from sprouting sooner.  I doubt I’ll ever really know, and regardless it’s irrelevant because it won’t change the fact that it’s happening.  It doesn’t stop me from wondering though.

I digress.  The point of all this is not that I now am living with a ‘tween, but the fact that I am apprehensive about what next school year will bring.  We’ve had some less than stellar experiences with her school this past year, partly due to her diabetes, and partly due to her behavioral issues, which are often exacerbated by her diabetes.  Anyone who’s ever seen their normally sweet tempered child have a total emotional meltdown with a high or low blood sugar know what I’m talking about…  but with Angelina, those behaviors are a dime a dozen when her blood sugar is NORMAL, they are exponentially worse when blood sugar levels are not where they should be.  I’ve explained this a million times, but the teacher asked the school nurse who said “No, that’s not blood sugar related.” and now Angelina gets punished for  behaviors she hasn’t learned to identify as high or low blood sugar, and no one seems to understand that treating the blood sugar issue will help treat the behavioral issue.

So here’s where my fear comes in…  I don’t know what to expect of middle school.  I know earlier this year when I asked for more independence for Angelina in the form of testing and treating in the classroom I was told “We usually don’t do that at the elementary level.  Maybe next year when she’s in middle school.”  or “She hasn’t shown that she’s responsible to check herself unsupervised and her teacher isn’t trained.” (An aside here… I offered SEVERAL times to give her teacher even just BASIC training and she refused saying “It’s fine, she can go to the office when she needs to.”  Nevermind that when Angelina requests to go to the office and it’s not a “scheduled” time her teacher tells her no or to wait until it’s more convenient for the class.  Hello!?!?  Basic diabetes training would tell you that DIABETES DOES NOT WAIT UNTIL IT’S CONVENIENT.  If she says she needs to go to the nurse, she needs to go to the effing nurse!)  I’m worried about teachers next year who will only have her part of the day and probably not communicating about what’s going on with her… and her being her getting upset and again being seen as a behavioral problem student.  I want her to be more independent, I want her to be able to text/call ME for advice and to relay what is going on during the day, but her current school said she’s not allowed to do that.  Will middle school be different? Or will they see a cell phone as a cell phone and again screw things up because they can’t separate Angelina from her diabetes from her ADHD/ODD and resultant behavioral issues?

I’m hoping that new school=clean slate, but at the same time that means that all the staff, teachers, administrators are new to her and don’t know how she works.  I wanted to home school her next year, but that has been put on hold.  And, if I’m being honest, I don’t really want to home school her, I just don’t want her to be in regular school anymore.  I don’t have the patience and the tenacity to be home with her 24/7, let alone spending several hours of each of those days trying to “do school”.  I have this illusion that we could make it work, but I think it may be just that- an illusion.  So, instead I am stuck in a less than favorable position of watching someone else be frustrated and impatient with her, potentially putting her in danger because they don’t understand her medical conditions, doing emotional harm to her because they don’t understand that she’s not a “bad kid” she just has “problem behaviors”.

She’s such a beautiful person and I don’t know what the right answer is to get her to adulthood and for her to be educated without losing the good person that she really is.  I feel like public school is crushing both of our souls.  I feel like her staying home with me wouldn’t necessarily be a better option.

All of this pondering on screen is a poor attempt to review her 504 plan and ready any changes that I think she will need for next year.  And it crushes me to know that the school will likely agree to the accommodations, and it scares me that we will have a repeat of this year, where everything is agreed to, but the teacher(s) don’t seem to read or follow it without many reminders… often that come AFTER some vital accommodation was previously not followed.  I feel like throwing in the towel. but in this fight, I am her voice.  I am her advocate.  I am the one who knows her and her needs more than anyone else, and I am the one who has to make sure those needs are being met.

I am a d-mom, hear me roar!