Dear Mr. AP...

An open letter to an Assistant Principal...

Dear Mr. AP,
I think you've lost sight of why were here. We are not here to be a winner in the game of who's right. Were not here to prove each other wrong or show each other whose boss. We are not here for a pissing match. Nor were we sent to make each others life miserable.

We are here for a child. A child that YOU should WANT to succeed.

I understand that you have been "doing this a long time", but don't dismiss me as being ignorant.
Maybe you have been doing this for a while, but so have I. The difference, however, is that I have more to loose. I fight with my heart because he, who I fight for, is my life and I can not, will not let him down. I can not fail him. I will go down swinging at every obstacle you throw at me and I will succeed in the end because it is whats right and there have been laws put into place to protect him from people just like you.

Also, I think you lack common courtesy or decency or maybe both. Maybe you just have no balls, I don't know. You have been against us all year, and today, when we learned YOU were in the wrong, you had someone else call. I think it should have been you, eating a slice of humble pie with your apology. Seems you are not the "expert" you thought you were. Also seems like you lack the ability to take responsibility for your actions and/or mistakes. You are suppose to be a roll model, Mr. AP, but I would prefer MY child to look up to a man with manners, kindness and a little empathy.

Having said all of this, I do hope, Mr. AP, that maybe, just maybe, when August rolls around... we can start the new year fresh. Positive even. With answers in place of the brick walls. With "we can" in place of "we can't". I hope that we can focus on the reason we are here. I hope we can move past wanting to be right and DO what is right for a child that needs us to work as a team.

He is counting on us, however, if you choose not to change... he will always have me and I will not let him down. You have my word on that.

The DOC Rocks - The School... not-so-much

“There is no exercise better for the heart than reaching down and lifting people up.” 
― John Holmes

This really is a great community. Anything from medical supplies to information... it's yours when you need it. I asked one person for a help; and not only did he help me... he recruited others to help me too. Thank you, Scott, for not only getting me the information I needed, but also giving the strength to pick myself back up and go another round.

I haven't been able to sleep much.The upcoming meeting at Justin's school had my mind in constant motion. Oh, did I mention that? Yeah, we had a meeting a few weeks ago. I've been through these meetings before, but this is a new school for Justin. We are no longer in the comfort of an elementary school. I've never volunteered here. I didn't spend years on the board. I have never built a relationship with anyone. I couldn't... I had to go back to work instead.

So this meeting(the one a few weeks ago)- it went "okay". I asked for an additional accommodation because Justin seems to be "missing" stuff. He has a shit load of stuff going on... on top of D, Justin was dx'd with absent seizures, meaning he "looses time". Granted there's medication for this, but let me tell you... I'm not sure which is worse, the medication or the seizures themselves. That's a couple of the challenges Justin faces... he has other medical dx's as well, all of which mess with the mind and impairs brain function. One alone may or may not be easily overcome, but all together... he needs a little help. Simple.as.that! I think we do pretty damn well considering.

But I digress...

Due to seizures, side effects of medication(ie: memory loss, inability to focus, loss of time etc...) I asked for communication, however the teacher wanted to go about it, of all assignments that needed to be completed at home- in order to ensure they are completed and turned in on time. This is an issue... he missing instructions.

I was there well over two hours... the teachers had to leave long before I did(apparently they have classes to teach?? I dunno!) so the excuse that day was that the teachers weren't there to "agree". I thought we were all on the same page before they left, but okay.

So I hear nothing... I give it a week and reach out the guidance counselor. I get a call back and argue my point, once again, before she reluctantly agrees. I was told I would have the updated 504 to look at by the end of that week.

Instead, I get an email with an apology. Another entire week goes by - so that following Monday I call. You see, we were suppose to have the 504 in place before conference night(which was tonight); when I called... conference night was only 3 days away.

Finally, Tuesday afternoon, Justin brings home the new plan. It reads "Justin will write the assignments in his agenda. At the end of class he will give it to the teacher to initial and if the assignments are not there... the teacher will communicate with parent". Great! Give Justin an opportunity and add in a back up plan, right?

I was okay with this and signed the new plan thinking everything was set. Only, it wasn't. Apparently, "some" of the teachers did not agree. "They don't feel it is their responsibility to communicate his assignments with me". WHY DIDN'T WE CONSULT THEM AT SOME POINT IN THE LAST THREE WEEKS??????????? Wasn't that the point of not doing it that day??? Mind you... I didn't get a call about that. I found out at the conference; the conference where we were going to "go over the new plan with the teacher". UN FUCKING BELIEVABLE!!! So essentially, that conference was a waist of my time because I now have to go to ANOTHER meeting, where the district ESE supervisor will be called in to "hash it out".

Believe me, I am not asking for a free ride here, I am not ignorant to the fact that things will get more challenging as Justin gets older. I worry every single day about my choices, but the alternative is to do nothing and let him fail, when he did not choose to have these disabilities. He did not choose to take this medication... I am the one who hands it to him every single day.

HE had no say in the matter.

I have no choice but to help him... it is my job. I will just have faith that it will all work out in the end and I will have to face the future... well, in the future.

THE 3 AM POST...

I can't sleep. I have been up since the 2:30 alarm screamed at me to test Justin. My brain refuses to turn off long enough for me to fall back into my previous drool-ish slumber. Had I known what was in store, I would have skipped giving him the Juicy Juice and thrown in a little night time basal testing... I'm over due anyways.

Alright, back to "my brain" - its spinning! I received a call from the guidance counselor today about a "team meeting". She mentioned some emails and said we all needed to get some clarification. The ONLY emails that have been sent were about an assignment Justin was penalized for turning in late after a low blood sugar (you can read about it here).

It was over a month of emails trying to get that rectified. Unacceptable, I think. In the end she did give him full credit on the assignment, but not before searching... literally searching, for a loop hole that would allow her to mark him off for turning in an assignment one flippin ass day late. He was 48, DAMN IT!!!!

I don't get it. Why is it so hard to make people understand. Why does there ALWAYS have to be one person giving our kids a hard time. I'm not asking for the world and it surly doesn't take a rocket scientist to read a 504 and say to themselves... "self - this kid has accommodations for a reason" and they could also throw in a little "they have enough to deal with; without me being a pain and giving them a hard time".

That's wishing for a fairy-tail, right?

This one hurt my heart...

I was just calming my battered emotions following a "tiff" with Anthony. He doesn't feel I should email a teacher concerning an assignment Justin was penalized for turning in late. The day he was suppose to "write the assignment in his agenda" his BG was 48. The work was turned in the next day, yet this "penalization" dropped his grade from a 100% to a 60%. Kinda harsh, I thought.


We had been fighting lows that entire week following changes the Endo had made. No matter what we did... we couldn't get him above of the 50's; this went on for over a week. Even after breaking the 3 day rule and making daily changes. The teacher even commented about sending him to the nurse all that week. 
Plus there's the weather... Justin's insulin needs change with the weather(I swear I'm not making this up). This is the downside to living in Florida... hot, cold, hot, cold, hot, cold; adjust, adjust, adjust... we cant make up our weather-lovin minds.


Anywho... we were "tiff-ing" (I might have made that word up) about it. In our 504 meeting... I mentioned Justin needing help with writing assignment in his agenda; for several reason, but Especially when D is acting up. We have this accommodation, SO WHY SHOULDN'T I EMAIL HER????

He was 48, "when he's low... his seizures increase". I've TOLD them this. Seizures mean he to looses time, doesn't hear whats being said. We have accommodations for this, SO WHY SHOULDN'T I EMAIL HER????

Anthony feels he needs to be more responsible, but is letting him fail, literally fail, going to teach him any sort of lesson? At 11 years old... should HE be responsible for going to the teachers and saying "ya know, I was a little low yesterday, I need more time." Would they even listen?  Doesn't he DEAL with enough??

Wait, I'm off on a tangent; back to the beginning...
So I was just calming my battered emotions following this "tiff". My first call returning to work was an emergency room admit for an 8 year old boy(just 1 year older than Justin was at dx). Guess why he was admitted... newly diagnosed T1D. My heart dropped. My eyes then filled with tears as the thoughts of challenges this family will face ran through my mind...

Every email that will have to be sent.
Every "tiff" about what should or shouldn't be done.
Every decision about what is right and what is wrong.
Every "adjustment" made.
Every night time number that you pray will not drop to low.
Every fight for accommodations and/or safety.
Every day of sadness.

Every bit of it tore through my heart for this family as I choked on every broken word I spoke.


I know the bigger issue here was the fact that I had to defend my sending the email with someone who is suppose to support me. Someone who is suppose to support Justin. If something happens to me... is Justin left to fail? Why do I even have to worry and think about that possibility? The thought scares me.

I know Justin will have to take responsibility one day... I struggle with the "when" in that every day. Right now, however, I feel that I would be setting him up to fail. Can he handle failure emotionally? I can't honestly say I believe he can... he bottles everything up as it is.

So what do I do? SOMEBODY, PLEASE tell me. 

A year ago today...

It was a year ago today that the nightmare began... Literally. A year ago today that I would blog about what was coming; even if I didn't know it was. A year ago today... My warning. The warning I didn't understand. The warning that didn't cushion the blow of another diagnosis.


One month from tomorrow marks one year since Justin was dx'd with epilepsy.
I would like to say that all is well, but I would be telling a tall tale. I would love to say that the medication is in order and is controlling the seizures without any of the ugly side effects, but that would be a flat out lie.


This one has been hard. Its not as much the seizures, though they are heartbreaking to witness, it's the medication. Memory loss, hair loss, aggression, short temperament... Just a small taste of how this medication changes you. Makes you loose yourself. How it has changed Justin. 


I am so tired. Tired of fighting the school and the teachers. Tired of missing who Justin is. Tired of constant emails to remind people about accommodations and pissed that a teacher feels that she has the right to discuss Justin's medication changes with HIM.


I'm tired of not knowing what to do. What choice to make. What path to follow. I'm tired of being scared that I am going to screw EVERYTHING up for him. I'm tired of the feeling that I am going to fail.