Good Things

If you’ve read my previous posts, you know that Angelina started middle school this year.  Middle school has brought with it changes in how her diabetes is treated at school, and how much she is able to do independently.  We struggled last year to fight for her right for independence and honestly, we failed.  As we moved into this school year I resolved to be a better advocate for her at school and to insist on more independence, regardless of what happened last year or what the school nurse’s opinion was.  I also brought David along with me on the first meeting this year, as support, but also to show that we are united in this and even though he was the only man in the room, there’s something about a dad attending this type of meeting that seems to communicate “We mean business”.  (More on the injustices of a patriarchal society later.)

I went into today’s meeting prepared to battle and was pleasantly surprised to find that it wasn’t totally necessary.  Last year we had problems, not so much with the school administrators, but with the district nursing staff who seemed to think they understood our daughter’s needs better than we or her physician do.  Who seemed to think that their interpretation of the doctor’s orders were the only correct ones, despite the fact that the doctor and I discussed the orders and *I* pretty much wrote them (read: told her what I would like them to say) and she added her signature for weight and authenticity.  Yet, I was told that I did not know what the doctor meant, only the nurses did, since they are nurses.  You can understand why I would be apprehensive going into this year’s meeting.

However, the district nurse supervisor has changed.  And not only that, but the district nurse supervisor is also the overseeing nurse for Angelina’s school, which means we have only one district nurse who we have to deal with, instead of two.  And she was AWESOME.  I was nervous, certainly, going into the meeting.  The nurse out both David and I right at ease and shared how she has twin 10 year old sons at home and she understands, from a parental perspective, how difficult kids this age can be.  And then the meeting started.

First off, the assistant principal had another meeting to attend one hour after our meeting began so she was very concerned about time.  Of course, she then proceeded to read last year’s 504 plan line by line rather than just diving into the changes that I had made to this year’s 504 plan and go over the things that were remaining the same.  I will never understand when people say they are short on time and then choose the option of doing things in a way that takes the longest amount of time.  We finally got around to the revised plan and discussed changes.

Something that became immediately apparent is that the current district nurse supervisor was not consulted before the AP made changes.  Instead, she had consulted the nurse we had last year.  And the changes they made were terrible.  The first section essentially said Angelina couldn’t do anything on her own, which is not at all what the doctor’s orders said.  The look on the AP’s face when I said “No. She will test her blood sugar independently. She doesn’t need to go to the nurse or to have the nurse come to her for that.” was priceless.  She sputtered and then went to get Angelina’s diabetes care book from the school nurse (who was not in the meeting) that contained her doctor’s orders.  Clear as day the doctor’s orders say “She is able to be independent with blood glucose testing, CGM trends and alarms.”  Verbatim from the doctor’s orders.  How anyone can get “needs to be supervised” out of that statement, especially after having this argument ad nauseam last year, is beyond me.  And if there was a question, this line from the doctor’s orders should serve as further proof “Check blood glucose with meter brought from home or additional meter left at school. this meter should be allowed to be carried by Angelina.”  It was even more humorous when the AP turned to the DNS and asked her to which the nurse replied “She shouldn’t need supervision for that.  It clearly states in the orders that she may be independent.  I have elementary kids who do this independently, it’s not hard.”  Oh my goodness… where was this nurse last year? I sorely needed her.  And that was that.

The rest of the meeting went rather smoothly.  There were a few tweaks that the AP had made on top of changes that I had made.  Some of them were changed back to my original revisions, others additions were kept.  All in all, the meeting only ran twenty minutes late.  We didn’t sign anything today because of the changes that need to be typed in, and then we will reconvene to sign everything.  I just have to make sure to go over it all with a fine tooth comb because I noticed that some of the sections looked mostly the same but a few words were changed that totally changed the meaning.

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!

#DBW 1 – Change the World

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)    From: http://www.bittersweetdiabetes.com/p/2014-diabetes-blog-week-topics-posts.html

 

While I’m not out to change the entire world, I do try to change at least our small part of it.  So, what am I passionate about when it comes to diabetes?  Can you guess?  I can’t pick just one topic.  Support.  Education. School issues.  Those are probably the ones that I participate or talk about the most.  The ones I am most passionate about.

I don’t see “support” and automatically think about it being advocacy though.  I think of it as a lifeline for anyone who is dealing with diabetes in any way – whether it is a person with diabetes, parent of someone with diabetes, friends, family, co-workers.  There is no limit to who can benefit from support when it comes to having diabetes touch your life.  I honestly wouldn’t be where I am right now in Angelina’s journey if it weren’t for the DOC and the 24/7 support and connection with so many other people who are walking a parallel road.  Which brings me to the next cause:

EDUCATION.  Diabetes education is probably the thing I am most vocal about, simply because I feel like there’s not enough awareness out there about Type 1.  And it seems that even the people who try to raise awareness for Type 1 do it at the expense of Type 2.  By saying “well, that statement that you made about food doesn’t apply to T1.  My T1 child didn’t do this to themselves.”  While the statement is true, it implies that people with T2 “did it to themselves”, which is not always the case.  I don’t agree with raising awareness and education for one condition while making ignorant statements or putting down people with another, similar condition.  Yes, Type 1 and Type 2 are different.  Yes, Type 2 does have risk factors that include lifestyle choices… but, it also has a strongly genetic component.  And regardless of any of that, diabetes, in any form, SUCKS!  No one asks to have diabetes.  So placing blame doesn’t benefit either cause. If I am going to teach someone about something and part of that education is differentiation from a misconception they have based on something else then I am also going to educate myself on the other topic (in this case, Type 2) so that I don’t come up looking like the ignorant and mistaken one.

Lastly, school issues.  This is a tough one for me.  I have a loud mouth, and a blog that I can share a lot of information on.  Feelings, frustrations, triumphs, thoughts, information…  But when it comes down to it, advocating for your child at their school is HARD.  Because it’s not about just shooting your mouth off.  If you want things done your way at your child’s school then you have to find a balance between being pushy, and being a push-over.  If you go in guns blazing, chances are the school personnel are going to push back against everything you demand.  But sometimes, if you go in nice and easy they just steam roll right over you and you leave feeling like you weren’t heard and didn’t get the things that you want and need for your child’s safety and well-being at school.  Finding the balance is difficult.  Forget difficult, it’s damn near impossible.  Sometimes you can’t do it on your own.  Both the American Diabetes Association and JDRF will provide information for working with the school on your own to come to an agreement about how your child’s diabetes will be managed at school.  Sometimes, doing it alone isn’t enough.  Both the ADA and JDRF have legal advocates that can help guide you and will also attend meetings with you to make sure that the laws and regulations regarding students with diabetes are being followed.  And sometimes, the school seems to go along with all your requests during 504 meetings and then doesn’t follow the accommodations that were agreed to.  Taking the steps to make sure that not only are the accommodations being agreed to, but also followed, can be a tenuous process.  But, in the end, our children are the priority and as a parent we must do whatever it takes to ensure that they are having their needs met.

Do You Have A Section 504 Plan? If Not, Maybe You Should Get One.

It’s that time of year again.  Preparing to send the kids off to school for a new year.  That means new teachers, new pencils, new books and… a new diabetes toolkit.

The DOC (Diabetes Online Community) is all abuzz about what to include in their children’t toolkits.  Will the school allow them to carry lancets and syringes, or will they consider those weapons and require they be locked in the nurse’s office?  Do they have a 504 plan?  Is the school allowing your child a 504 plan?  Do you even know what a 504 plan is, or if your type 1 child needs it?  If your answer to any of these questions is ‘no’ – pay attention.  While the first question may be negotiable, the others are not.  If your child attends public school, or private school that receives ANY federal funding (In the U.S., of course) you child is ENTITLED to a 504 plan for their, and the school’s, protection.  A 504 plan is a legally binding document that the parameters are agreed upon by the parent/guardian and school personnel to provide accommodations for a child with a medical disability.  Type 1 Diabetes is a listed condition, your child automatically qualifies, regardless of what the school says when you ask for one.  It doesn’t matter what state you live in either, Section 504 is a federal law that supersedes any state and local laws.

A 504 plan for Type 1 Diabetes will generally accompany a DMMP, Individual Health Plan, or “Doctor’s Orders”, this is the form that your child’s endocrinologist submits to the school with specific directions of how to manage your child’s diabetes at school.  It seems many schools will tell a parent they don’t “need” a 504 plan because they can just use the child’s DMMP to provide care and accommodations, and will work with the parent to provide additional care that the parent may request.  However, the “trap” that many people fall victim to (myself included) is that the DMMP and a verbal agreement with the parent isn’t a legally binding document.  Which means that the school can tell you they will do things the way you ask, but if someone drops the ball or simply chooses not to follow that agreement, you have little to no legal recourse if something were to go wrong.

No one wants to think about the “what if’s”, especially at school.  I think we all want to believe that our child’s school has their best interest at heart.  And in some cases, it may seem that way.  Now, I’m not advocating that everyone go out and demand a 504 plan and then threaten to sue the school the first time they miss a scheduled BG check and your child is fine.  I’m just saying that the 504 provides that protection because the school knows that IF they don’t follow it to the letter there can be consequences outside of a parent who gets angry.  They can attempt to tell an angry parent without a 504 that they’re not required to provide accommodations, but they’re doing it out of the goodness of their hearts because they care about your child.  Warm fuzzy feelings aren’t going to protect your child from potential medical negligence though.

When Angelina was diagnosed in March, she was in the middle of spring break, so we had about 10 days before she had to attempt to go back to school.  One of the first things I did was contact the school district pupil services director along with the principal at her school through email and let them know that she had been diagnosed with T1 and I wanted to update her existing 504 to include t1 accommodations.  I also very firmly stated that she would NOT be returning to school until accommodations were in place.  Apparently I was too firm though because it sent everyone into a panic.  I got a flustered reply from the pupil services director saying that she would get me in touch with the director of the district nurses to go over a plan.  When I spoke with the nursing director she said that for other students with T1 they don’t usually do a 504 plan and they just follow the dr’s orders and try to make additional accommodations that the parent requests.  Here is where I fell into the sense of false security that they would do all this for my daughter out of the goodness of their hearts.  I emailed back and forth and played phone tag with the nursing director for a few days getting things in order and by Friday afternoon I had an appointment set up on Monday morning (which was the first day back from Spring Break) with the district nurse who oversees Angelina’s school.

Angelina and I went to the school that morning and brought all her supplies and doctor’s orders.  The nurse already had a binder all set up with their logs and info sheets and most of the additional things we had agreed upon that weren’t covered on the doctor’s orders.  I wasn’t expecting Angelina to go back to school the next day but they assured me that they were ready for her, and she was enthusiastic about returning so she ended up only missing that 1 day.  They placed a new health tech at her school who was an RN.  We live in California and our state law is that only registered nurses can administer injections.  Since she was so newly diagnosed she needed help with most of her care still.  She did start doing her own injections at school with supervision.  However, the “backup” health tech who came when the regular HT was out was only an LPN, which means that he could not administer injections.  There were a few days when I would get a call at lunch time that Angelina didn’t want to do her own injection and he couldn’t do it, could I please come up and give her her insulin.  He seemed nice enough and asked a lot of questions about her.

Then a few weeks later I was looking over her weekly logs.  We had it set up that the paper log they kept of every bg check, every meal, every injection would come home with her on Fridays.  Well, I have the most disorganized, forgetful kid so they usually didn’t come home on Fridays.  I usually only got to see them if I happened to be summoned to the school to do something for her that the HT couldn’t do, or if Angelina wasn’t cooperating and I remembered to ask for it.  So it was really like every 2 weeks or so that I would get a copy of her log.  While reviewing the logs I noticed something pretty alarming – a couple of the days the sub HT was there Angelina had low blood sugars (one day was a 47) and I never got a call.  Not only did I not get a call, but there was no record of a recheck and she got sent home on her hour long bus ride like nothing ever happened.  Obviously things turned out okay, but it’s still scary because what if they hadn’t?  I never got the chance to speak with her bus driver to relay information about her t1, I don’t even know if the bus driver knew about her t1.  Not to mention that the bus driver is driving the bus and can’t watch Angelina the whole time to make sure she’s okay.  The other times Angelina experienced lows at the end of the day the regular HT would call me and relay her numbers, what she had to eat or drink to treat it, what her number was after 15 minutes and left it up to me whether Angelina could ride the bus home or if I wanted to come pick her up.

After I discovered this lack of notification and follow-up I contacted the district nurse and told her what I had found in the logs.  She did say that the sub HT had notified her of Angelina’s low.  Which is great for record-keeping, not so great for Angelina’s safety or my peace of mind.  I told myself that he did recheck and just forgot to put it in the log, it was the end of the day.  So, I accepted the district nurse’s promise to speak with him to make sure he called me if there was a next time.  Except a few weeks later I noticed it again on the log, after I had contacted the district nurse.  There it was – a 59 – “gave juice, feels ok”.  No phone call home, no record of a recheck at 15 minutes and she went home on the bus.  Since she did end up being okay it was just frustrating.  But imagine if that juice and “feeling okay” wasn’t enough to bring up her BG.  Imagine that she got on the bus and her bg continued to drop and within 30 minutes she “fell asleep” on the bus.  Only no one realized it until she didn’t get off the bus at her stop and maybe the bus driver didn’t notice until she got back to the bus barn.  It’s scary to think that could happen, but it’s not out of the realm of possibility.  In that instance though, without a 504 in place I wouldn’t have had much legal ground to stand on because “call mom” and “don’t send on the bus in case of lows” isn’t in the medical plan.  That’s in the informal verbal agreement that I had with the school.  As far as their legal responsibility, the sub HT giving her juice and calling the district nurse to let her know about the low is all he was required to do.

In our case, things were okay but I was left with feeling of frustration and worried about if things didn’t turn out so well next time.  Type 1 diabetes is an unpredictable beast.  It doesn’t always do what it “should”.  And I know enough about school red-tape to know that if something “bad” were to happen that the schools’ defense would be “We weren’t required to notify the parent, and the times that we notified the parent previously were out of the goodness of our hearts.” and it’s possible that would be the end of that and I would be advised to get a 504 plan that does make them responsible and required to contact me, if that’s what the plan says.

A 504 isn’t just about keeping the school accountable and helping to prevent accidental gap in care.  It also can protect the child from discrimination.  There’s nothing in my child’s medical plan about her being able to attend a class party and have a cupcake.  So, if the school doesn’t feel up to figuring out her insulin needs and carb counts for a cupcake, without a 504 plan they can say she can’t participate becaue of her diabetes.  Or, if she has a high BG and needs to use the restroom during standardized testing she can be penalized or get in trouble for getting up and using the restroom.  Her medical plan doesn’t say anything about allowing her unrestricted restroom access, or extra time to finish a test if her blood sugar is out of range.  Or, allowing her to take the test on a different day without penalty.  Her medical plan doesn’t say that there may be days that she comes in to school late because we were treating a stubborn low BG in the morning.  Or maybe we were up half the night treating a low or high bg and she didn’t get enough sleep so I let her sleep in for a couple hours and took her in at lunchtime.  Normally, all of those would be considered “unexcused” tardies.  Which means that they count towards truancy, and too many tardies or absences can lead to legal proceedings against the parents for truancy.  Her school district requires a doctor’s note for any tardies or absences over 10 in a school year.

I don’t know about anyone else, but I certainly don’t take my child to the doctor every time they experience a low blood sugar.  And Angelina doesn’t just have type 1.  She also has asthma, allergies and an immune system that likes to catch every illness that goes around and make it worse than it was in the person before.  I don’t take her to the doctor every single time she has an asthma attack.  But I can’t send her to school if she can’t breathe, right?  In 3rd grade she missed a lot of days because she would get a cold that would go straight to her lungs and she would be struggling to breathe for DAYS.  She missed most of the month of January 2012 because of this.  She would get better for a day so I would send her to school and the next day she would come down with something else that kept her home for several days.  I wish I was exaggerating.  Her teacher made an offhand comment to me one day about all her absences, I think she thought I was keeping her home just for fun.  Especially since she would seem better when I did allow her to go back to school.  So, one day she work up with junky lungs, but she said she felt mostly okay.  I decided to give her a breathing treatment and send her to school.  I dropped her off at 8:30am and went home and waited for the phone to ring.  The call to come get her came at 10am.  I headed up to the school and went into her classroom to help her collect her things.  Her teacher came over and said “She was fine this morning and then all of sudden she just couldn’t breathe and started wheezing and coughing! I had no idea!”  To which I just responded, “This is why she has missed all of these days lately.  This actually isn’t that bad, which is why I decided to send her today.”

Anyway, the point of that is that not every single missed or late day due to a chronic illness requires a visit to the dr, but unless you have a standing document that says that, you are in danger of legal action being taken against you or your child for excessive absences or tardies.  In some districts, excessive absences may also equate to the child being forced to repeat a grade, even if they have a passing report card and seem to be grasping the concepts.

For additional information on 504 plans and what to pack in your child’s school tool kit, please click on the page labeled “Info For School” on the top of this blog.  Or just click here.