Tuesday, August 31, 2010
Asking too much??? I think not!!
Let me back up to the beginning(short version, of course) because you would THINK that a child in 4th grade who was diagnosed almost two years ago would be all set with his 504 plan- right?
Yeah, I know, I am feeling like a big, suckity mama right now~ k
Insert Diabetes… lets face it, I didn’t know my brain from my ass when Justin was first diagnosed (That is just reality my friends). I didn’t give a rat’s pa-tootsie about anything but carb counts, insulin factors, BG checks and making sure Justin was safe in the beginning. Making things better… Justin’s team is wonderful and I have never been given a reason to worry about “paperwork”. But the reality is, I can not sit back and wait for something to smack me upside the head before I get this “stuff” in order. I need to have it there before anything happens.
Please continue to bear with me as I make my way to present time.
Right after school ended last year, I came in to meet with the school guidance counselor, Ms. P to review Justin’s 504 plan. I expressed my concern with her about how Justin’s 504 did not have many of accommodations needed to cover D. I gave her my “proposed” 504 and told her this is where I would like to start.
Please keep in mind that my “proposed” 504 was an example 504 printed off the JDRF website.
I removed many things that were not needed for Justin and went from there. NOTHING out of the norm, nothing crazy and I wasn’t expecting the world. Ms. P took the proposed plan and asked that she send it to her supervisor to look over. “Sure”, I said. Again, nothing crazy was on there.
I had also asked her if we could coordinate one big team meeting to discuss Justin’s care during the day(i.e. signs and symptoms, what to look for, what to do). One meeting= less time and everyone on the same page before school starts. Everything sounded good, nothing was signed but we planned to get together before the new school year begins. Not a problem except I never got a call. I ended up contacting her. Okay, school hasn’t started so let’s get this going.
It comes down to this… they want to put everything on his care plan and write “see care plan”.
A few of my concerns with this arrangement are as follows…
- Why am I going to make his care plan into a big document that none of the teachers want to read. Keep the care plan to what it is… A PLAN FOR HIS DAILY CARE. Focus on the basics that keep him safe and save the legalities for the 504.
- A 504 needs a parent signature. The parent and school agree upon it. A care plan does not even have a space for a parent signature. Though our awesome school nurse gives me the courtesy of looking it over and suggesting changes… this IS just a courtesy and what if all nurses are not as courteous?
- The 504 follows Justin each year, granted you make updates, but it is easier to keep than to add (obviously). The care plan does not follow you... it is started fresh every year.
Here was my reply to her:
I apologize for the delay in getting back with you. I am trying to figure out a way to approach Justin's 504 that we can all agree on. I was put at ease about an attached care plan to list Justin's specific daily diabetes accommodations. However, there are a few adjustments we may need to make to the 504 that has nothing to do with a specific care plan. Personally, I would rather not clog his care plan up with details that do not pertain to his daily care or testing needs. I would really like to have the care plan in place(or at least created) before we work on the 504. I will work on a rough draft care plan over the weekend and cross my fingers that it will be in place on Monday :). As soon as the care plan is in order we can focus on the 504. I hope this is okay with you.
I apologize for the inconvenience. We have been very blessed with the care provided for Justin and I hope I have not suggested otherwise. I just need to make sure Justin's plan(s) will provide him the opportunity to receive the best education possible despite the challenges he faces.
Thank you for spending the extra time to get this all worked out.
She did not reply to this email and I sent it 11 days ago. I get the feeling she has been avoiding, which is okay as it gives me planning/sorting time. Today however, I popped in her office to mention we still needed to get this done and mentioned my email stating we would need to make some changes. She said we would need to schedule a time for her supervisor to come in because she told her what to do.
Okay, supervisor it is. I did however ask point blank… “The standard 504 plan in ALL she is willing to do right? Because if she is willing to work with me; I will prepare for the meeting a lot differently than if she is only willing to have a “standard plan”.
I promptly received a phone call from her this afternoon to set a date. She is scheduling it at a time when his regular classroom teacher will be able to attend…. I asked “why”?
“Because when we have a 504 meeting, we ask that the team be in attendance” (this is a first).
It sounds as if they are going to push the “does this pertain to a fair education” strategy to try and keep a few things off the list.
Paranoid much??? Ummm~ yep!
So that’s where we are today. We have a meeting with the “team” to go over the daily care plan… a week and a half AFTER school started. I have already meet with some. BABY STEPS PEOPLE…. BABY STEPS :)
I will keep you posted on my quest for a fair 504 plan. In the meantime, as I prepare for battle, I leave you with this…
This may be a new battle I face, but know that I have faught many simmular battles before. I do not have the option to loose, I do not have the option of fear. My son's future depends on my victory and I will not let him down. I will go down as his advocate, his mom and with any luck... his hero.
You have been warned!
Saturday, August 28, 2010
Thursday, August 26, 2010
Then it occurred to me... I wonder if you know how many times we use you to raise the levels of our sweet angels. As D Mom's(and dads) we are told to use the "small Juicy Juice" because it had exactly 15 carbohydrates.
Did you know that we keep you; our 15 carb life saver...
In our purses?
In book bags?
In our cars?
In our swim bags?
In our diabetes kits?
Did you know our refrigerators are stocked FULL of your 8 packs?
We also have packs in the nurses office at school, in each classroom our children learn in. Some of us even keep them in the hallway closet next to our kids room for easy access.
Basically, we keep you E.V.E.R.Y.W.H.E.R.E!!!!
Then I was wondering... do YOU support us? I mean support us financially??? Okay okay... not us personally, but support research, JDRF etc... Think about it! 40 children are diagnosed with Juvenile diabetes EVERY DAY! Those 40 moms and dads are told all about you Juicy. In ONE YEAR FOURTEEN THOUSAND SIX HUNDRED new families are told to take you home and use you to make them feel better.
We do this in BULK!
Consider this, I have 4 packs of you chillin in the fridge, 1 pack in the nurses office at school, 1 pack in the classroom and 2 packs spread between random classrooms, my car, purse, emergency kit, swim bag and
his book bag.
That's 8 packs! Just at my house!
Lets say that we buy 3 packs per month on average... (for my house that about right).
At $2.50 each that equals $7.50
In one year... $90 for ONE family
In one year... $109,500 for the 14,600 families diagnosed every year.
Can you give some of that back to us with your support? DO YOU THINK WE NEED A CURE?
I promise to still keep you around the house... I would never forget about you. I just might not visit at 1:15 in the morning as often (or 12,2,3,4 or 5 either). But in the daylight... oh Juicy it.is.on!
But hey, don't mind me, I am just some crazy D Mom who should be sleeping at
Saturday, August 21, 2010
As I was reading Hallie's post today, I was reminded of a post I did a while back about a question someone posted on Facebook. The post was called A thought to ponder... It was about the possibility of having a choice and if you did, what that choice would be. What reminded me of my post were a few of the comments and the fact that Sweat pea doesn't remember life before D. So does she think anything of it?? Will it bother her later on??
Here was the question from Facebook... My son doesn't remember a life without type 1 diabetes as he was diagnosed as a baby. For those of you in the same situation, if there is ANYTHING good about having a child with diabetes, would you agree that it's easier to "grow up" with it, rather than developing it as a pre-teen/adolescent?
There were lots of comments on Facebook and even a few on my post. Every "choice" (if there were such a thing) had reasoning behind it that you could not dispute. They were honest and I could relate to each and every one of them even though some were so different.
For us, I think we were in the middle as far as age... Justin is old enough to remember life before D, but young enough to make it foggy. I hope this means we MIGHT have a chance to make it through the teen years without the anger over it.
I would like to add that having a non d child throws its own complications into the mix. YES, I DO know what it's like to have a non-d child and I want that for Justin SO BADLY. Justin knows his sister gets to go to sleepovers... they are only 14 months apart so I can only use the "shes older" excuse for so long. THAT has been the hardest part. THE SLEEPOVERS! It's not that she gets to go, it's that he doesn't. He HAS noticed and it breaks my heart. What can I do? I can't hold her back. She deals with D just as much as the rest of us(aside from Justin). I know its hard on her. I know she needs to be with friends... what pre-teen doesn't?
You should really stop by The Princess and the Pump to read Hallie's full post. It is sure to reach in an grab you as her posts always do.
Friday, August 20, 2010
The EKG was quick... didn't even think to take a picture to be honest. But the Echo. Well, that took a while. I found myself sitting back and tearing up. I let myself go to that worry place. I had a bit to much time to sit and think in the silence of a dark room.
Why does he keep going back to the same area... does he see a problem?
How did we get here again? OH! Chest pain... that's right.
Isn't this suppose to happen when he's like.... 50 or something?
I wonder how many of these he will have to take in his life.
Man... I should sneak in a nap!
I hope this is the last new doctor we have to see for a while because I am tired and broke.
SHIT!! I still need to make an appointment for the eye doctor. For BOTH of us... double shit!
I wonder why he didn't tell me about these chest pains.
If this is starting already, how will it be when he's my age? I can't even think about it.
Gosh... we've been here over 2 hours. If this doesn't end soon he's going to go low.
Thursday, August 19, 2010
NO CREDIT PLZ... I stole him!
For good reason... and that was to introduce you to Alexis over at Justice's Misbehaving Pancreas.
Justice AND Justin share a dx date (I had to throw that out there).
Pop over and say hello to Alexis and check out her blog back ground. I am a bit jealous of said blog background as I continue to look for one I like during my
Candy Hearts: CANDY HEARTS MEGA GIVE AWAY!!!
Wednesday, August 11, 2010
Let me rephrase... I had Anthony here, my kids, family. But they do not understand like WE do. They don't have the constant fear of failure.
August 11th 2010. I am a different person. Yes, I do still have those days when I cry, but they are less common than they use to be.
So what's changed??
The simple answer is that I have added some VERY SPECIAL people into my life. People I can turn to and rely on. They do not judge me when I make a mistake... OH NO NO!! Quite the opposite... they encourage... they lift... they make you strong. THEY.GET.IT!!
And just because...
I am glad I have some great friends to make me...
Now I proudly...
All because D-moms around the world united...
Monday, August 9, 2010
Sunday, August 8, 2010
Last Sunday... that all changed. Leighanna and I went off for a bit and came home with the newest addition to our family...
Oakley is a Chorkie (Yorkie/Chihuahua). He is 8 weeks 3 days old today and he is a doll!!! When I woke up Sunday morning I did not know what a great day it was going to be. Oakley has fit right into our family... an unexpected joy :)
When we first came home... Anthony was NOT.A.HAPPY.DADDY. I didn't tell... I just showed up with him :) In my defense- I HAD to do it that way or it would have never happened. Plus, he was warned... a few times that "ONE DAY I am just going to bring one home".
He said "you KNOW that I am not happy", "this dog Will not be on the furniture, he will not be in our bed, the first time bla bla bla"...
Let me share with you exhibit A... this was taken LAST Sunday, about an hour or so after Oakley came home.
So much for all the rules!!! lol
Wednesday, August 4, 2010
You are truly an amazing person, an amazing doctor, an amazing soul. I doubt words could ever express how much your support and encouragement mean to those you care for.
I know I didn't realize it at the time, but you supported me on the day Justin was diagnosed. Yes, you supported me before that day, but it wasn't until then I realized how much it was needed. I have often looked back, thankful for the time you spent making sure I was okay. I am grateful that you took the kids out of the room so that I could release the flood of emotion I was so desperately trying to shelter them from. I didn't want them to know right at that moment how devastating the news was. THANK YOU... for giving me the time I needed to breath.
Fast forward a little more than a year and a half later... I know how Justin's diagnosis that day affected me. The words are forever etched into my brain, the reality is before me everyday and the fear of what will be plays through my mind over and over like an old picture reel. What I didn't know was that a piece of that day was still clinging to your mind. I was taken back when you said "I remember that day... we were in room 11". I could tell by your tone that your heart broke just a little for us that day. I didn't know what to say at the time and I can't explain why that simple memory made my heart break and feel blessed at the same time. Thank you for letting me know we are not forgotten.
Skip ahead about a month... Today is the first time I have come to you about fevers and sickness in a long time. You always seem to be extra cautious with him, but not to the point that you are annoying(I say that lovingly). You casually ask questions about things that most Endocrinologists couldn't answer. Those things only a mom would relate to. Thank you for wanting to understand and learn.
Today's diagnosis was simple... Strep throat. You give me the run down on the usual course of action... adding in a few extra detail to help with D. Then you smirk and comment that I know way more than you. Thank you for the vote of confidence and the chuckle.
As we were leaving you thanked Justin for "making it something you could handle:.. I laughed and thanked you for making it something I could handle. Then... you did it again. What started out a simple joke turned into heartfelt words that will stay with me. Words that I will try to remember when I am feeling overloaded and weak. "You can handle more than most". That and a simple pat on the back left my heart so full of appreciation it hurts. My eyes are full of tears as I type, but they are not sad ones. Those simple words make me feel like I might be doing something right. That is a feeling I don't relate with to much these days. I know on the outside my weakness now shows. I don't feel as strong as I use to. Thank you for seeing who I am. Thank you for knowing I can do this and telling me so.
You are a GIFT.