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.

Choosing...

“The problem, simply put, is that we cannot choose everything simultaneously. So we live in danger of becoming paralyzed by indecision, terrified that every choice might be the wrong choice.” ― Elizabeth Gilbert

Here I am again. It's 1:30 in the morning and I can't sleep. My head and stomach are in knots because there is a.n.o.t.h.e.r meeting.

Freaking meetings... Kill me now!

This time it is to come up with a plan for standardized testing. Last month, Justin's 504 wasn't followed during FCAT's. One day his bg wasn't tested at all and the next they allowed him to start testing with a bg of 61.

I spent four weeks asking for someone to get back with me so that we could "find a resolution".
And for four weeks those calls/emails went unanswered.

Until I emailed the county superintendent.

Unfortunately, you could tell by the tone in her voice, the AP was quite "ticked" when she called me. I pray this doesn't set the tone when we meet next week. #nothopeful

I worry that this will be a bashing session, rather than a solution meeting. Because that is exactly what the phone call was. I am not ignorant to the reality that the challenges over the past school year have damaged the lines of communication(if there really were any to begin with). Its been a rough year. Lot's of "that is not our responsibility" and you need to contact so and so... who send you to so and so #2 who then sends you to so and so #3 who ultimately send you back to the original so and so.

I have two choices here... keep him there or move him. Each option is a win/loose situation.

Keeping him there...
I honestly don't think they are ever going to work with me. I've been labeled to the point where they don't even bother to answer an email. All for advocating for my child. Justin has been labeled as well. My confidence in "the system" is gone. Justin is struggling emotionally and it's not worth all this stress on either of us. Can I even survive two more years of this?

However, his sister is there. I don't have to worry about him on the bus because I know she is watching him. I don't have to worry about transportation. He has friends there... kids that he has gone to school with since kindergarten. It's pure bullshit that he should be yanked out of his neighborhood school because they can't get their shit together. He.has.the.right.to.be.there!

If I move him...
I don't know how I am going to get him back and forth. This will be a challenge for the next two years. He will not go to high school with any of the kids at the new school so he will have to start all over socially. This is a big challenge for a shy kid with confidence/emotional struggles(and she begins to cry). I would have to choose a new school and deal with all the worries of making the right choice. Justin and I would have to live with the consequences if I choose wrong.

But, I could start fresh with a new "team" that may be more willing to help him( that is if they haven't been warned about his witch of a mother). A team that may be more compassionate. I would start a new year hopeful. Maybe I could even stop crying and get some sleep. Maybe I could even stop stress eating... MAYBE.

I just don't know what to do. You can not imagine how much this is killing me. I only want what is best for him. I only want him to succeed and be happy. But reality is I am am failing. He is struggling and he is unhappy. He needs a break. WE need a break.

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. 

Advocating...

ad·vo·cat·e, ad·vo·cat·ing, ad·vo·cates. 

To speak, plead, or argue in favor of.   

     

Several years ago I was in a meeting with the school principal. I made a comment, a slip of the tongue, and said something like "I have been fighting for him for a long time". She responded with "we don't like to use the word "fight". 

Yeah, I'm sure they don't.

There are very few people who know the full background of my sweet Justin. Very few people who know that when he was young we had him tested for Autism, then Aspergers and so on. There are few people who know the countless days I spent waiting in OT and speech therapy offices. I don't retell the story of the teacher the kindergarten teacher that, very loudly, announced in the hallway at drop off she felt Justin was OCD; because he was picking at dried glue. I try not to share the story about the teacher who put him in the closet. Yes, I said the closet; it happened in preschool, when Justin was only 3. 

But isn't that part of advocating? Sharing your story to let others know they are not alone. 

I have been fighting advocating for Justin for more than ten years. I'm a little worn out, but my job can not be done quite yet. I'm starting to wonder if it will ever be done. I have visions of me calling corporate bosses to tell them Justin NEEDS his snack and that he MUST be able to bring his work home to complete. They won't want me to go down there. 

To me... advocating is directly connected to fighting. I wish it felt differently, but I always seems to be fighting with someone. The school, the insurance company, the doctor that wants to treat in a way I don't feel comfortable with. I have however learned, over the years, to not back down and choose my wording wisely because it could mean the difference between getting what your child needs and them getting the bare minimum. As an advocate, I think it's sad words can cost our kids so much. 

I have learned, the older Justin gets, the harder it becomes to advocate for him. With each added diagnosis, it gets harder to word your concerns in such a way that they don't sound like a bunch of excuses. School has to be the hardest... instead of a couple teachers, we now have seven. Keeping up with seven different teachers, in addition to making them understand, kind of sucks (or in proper terms... it's unsatisfactory)? 

My most valuable lesson in all of this has come over time. Time has showed me that it has ALL been worth it. Every bout of anger, every tear, every phone call and email sent has all been worth it. I've witnessed it's worth as I have watched Justin grow. I have witnessed how far he has come in spite of those who give up because he has been blessed by those who won't. I have had the chance to watch a child grow everyday that could have easily been chalked off to a behavior problem, and almost was, when all he really needed was a different approach and someone to care enough about him.


To be honest, I had hoped to hang up my advocacy belt soon, only I know I still have a long road ahead. Not nearly as long as Justin's, but I have to lay the groundwork for him now; and that's a big load to haul. All I can do is keep truckin along and pray with all my being that what I can do will be enough. I don't have any other choice if I want Justin to have a fighting chance. Hmm, there goes that "fighting" word again.

Thank you, from the bottom of my heart, to all of those who didn't give up and have been influential, to both of us, along the way.  

     

working with D

For today's post I decided to dig into my drafts; I started this one back in July. Not a whole lot has changed...

I spent many hours crying my way to work. Heartbroken that I couldn't be home where I was needed. Guilty that I wasn't visible at school like I had been for so long. Mad deep down. Feeling like I had let my kids down and myself down. Now before you tell me I am a good mom, I already know, maybe I just planned on the circumstances of my return to be different.

Working with D has taught me that I have to let go in many ways. I have to trust that others will be able to take care of him when I can't. I have had to rely, a lot, on Anthony to take phone calls and make decisions that I have always made. All of that is tough for a control freak such as myself.

Justin seems to take no interest in his own care. He understands  and he follows directions, but he would prefer you just do it for him. 

A boy thing? Lazy? Normal? Am I doing something wrong here?

And now...

Justin has seemed to survive my absence and now that I'm working from home it has been a bit easier. Anthony started texting me his lunch/snack numbers everyday which makes me feel like I am back in the "loop". 

I have found my sanity is much more stable when I'm on the inside. I plan on staying there .

Hope you have a fabulous Tuesday!!

  

Caught off guard...

I could tell as soon as he walked in the door that he was upset. The pressure of middle school sure can get to him. Im sure the 65 that showed up on the meter didn't help how he was handling himself either.

I tell him to grab a snack out of the closet and his book bag; we need to leave for tutor. He listens with a somewhat frustrated "tone", and we walk out the door.

On the way, I take the opportunity to find out what's eating him. He says he "just couldn't think today". He couldn't think of a hook to write about in language arts. Other people had really good hooks, but he just couldn't think of one.

This means he got nothing done.

Now I know what your thinking... Really, he's upset over that?!?! Keep in mind that Justin is a perfectionist, he takes medication that slows his thinking and he's been running low today. Please cut him a little slack.

I talk to Justin about how the hook doesn't have to be perfect, I talk about how getting upset makes thinking harder. I give him almost the same talk I do every time he gets frustrated. But this time he caught me off guard... He asked me if I could get him someone to talk to. "Like a therapist".

What?

Don't get me wrong, I am all for getting help, it's even something I've talked about doing, but for my 11 year old son to ASK for it. That kind of hurts.

Justin tends to bottle things up, kinda like him momma, I hope finding him someone to talk to will give him the release he needs or the answer he's looking for. 

How...

How do you make them understand? Understand that this is not "just" a disease. How do you make them understand that the very medication meant to help... comes with it's own set of challenges.

How do you make them understand that for most kids his age... the biggest responsibility they have is whether or not they had their agenda signed. But for him... his biggest responsibility is keeping himself alive. 

How do you make them understand that you don't spend your day making up excuses. All that has taken place in the last few years has taken its toll mentally on us all, especially him. How do you make them understand that you need help. HE needs help. 

I know having my child in your class is a headache. I know that I ask you to monitor him, redirect him, show understanding and afford him additional time. I know that he doesn't fit in the tidy little box. I also know that he IS worth the effort and I just need you not to give up on him.