Just call me Jiji

…me, just pretending to be me ….now, where did I put that cape??

Archive for the tag “tears”

Crap! I think I’m broken again

Well, it is that time of year again, I guess…

I’m screwing  up again and I just don’t have time for it. I want this new year to be a year of change for the better!! So I have a plan to implement.

Being that I just spent about 15 minutes in the arms of  Kiera, my almost 4-year-old  niece, crying as she stroked my hair and wiped away my tears. I’d say I’m not getting off to the best of starts.

Then again, if I am going to have a nervous break down, there is no better person to be around than a little angel. And she is an Angel. (it’s a plus when that little angel doesn’t get a scare when seeing her Tante  Jiji fall to pieces.)

I haven’t been sleeping regularly. My nights are getting  later and later (or earlier and earlier, depending on how you look at it). In the last week I’ve gotten to bed at 4:30am, 4am, 2-ish …I think (I was proud of myself  for that one, after all I managed to get to bed early that night.) Then it was 4am again, and 5:30am and last night/this morning I went to bed at 6:30am. It’s not healthy, I know. What I don’t know is why I am like this.

It’s as if my life runs on a different clock than everyone else’s, everything is backwards. My days, find me excessively tired and exhausted, and my body seems to work against me. I hurt physically, which  for the most part I am used to being a problem. My fibro flares are definitely worsening with each new episode as time goes on. I don’t know if it’s an age thing or a female thing or just the normal course fibro takes. Personally I am convinced that I have MS, but no one else is. So I guess I must be wrong.

Mentally I feel so freaking scattered, confused, and somewhat lost. My memory is getting so bad; …scary bad, like I am going nuts, bad. I can’t seem to string my thoughts together, let alone complete a normal sentence or have a clear conversation with someone. Even writing this right now has been difficult, it’s taken me over an hour to get this far. my thoughts and emotions are all over the place, They all want to come out but some how they are all scrambled and tangled and stuck in my brain and driving me mad. My words have been coming out of my mouth all wrong, I want to say one thing but something else completely unrelated comes out. It’s called something, when that happens, but I cant remember what it is right now (HA!, go figure)

 –Google Search– Aphasia! that’s the word, Aphasia. Do I have aphasia? Hell if I know. I am not sure of what it is exactly I haven’t really researched it. And it’s probably best if I don’t…. 😉

During the day I feel as if I am just getting through it, one wobbly step at a time. I occasionally have spurts of ambitious thoughts of productivity, but they  seem to get squashed once I try to do something about it. I get too physically tired, too easily and abandon whatever it is I am trying to accomplish. Nothing ever gets done… , not completely anyway.

One of my changes for a better new year includes changing my sleeping habits for a happier healthier me. So the plan is to get to sleep before midnight and not staying up all night long. It sounds easy right? But it is not!! And like I said I really just don’t know why I am not sleeping?

I don’t know why my brain feels all foggy and dull and dimwitted and sleepy all day. And I don’t know why it starts itself up and runs at full throttle at night. It’s as if the dimmer control on the light bulb in my head gets turned all the way down during the day and then gets turned all the way up late at night. It’s as if, my brain is at its most active and productive stages in the evenings. Seriously I feel like I am at my widest awake at night when everyone else is going to bed. AND sometimes I actually end up getting things done. Whether it be doing some writing, organizing files on the computer and backing them up, archiving my photography, and readying them for display, researching my medical and neurological problems, researching ADHD, etc, etc, etc. I am actually doing these things well into the morning. But that’s not to say that I don’t goof off at other times too. There ARE nights that I will promise myself that when Ron heads to bed I will follow, but then when he heads to bed, I just can’t, I don’t feel tired and I know I won’t be able to sleep. So I inevitably  decide to watch just one more show. If I am not feelin’ what’s on the DVR, I will find something on Instant Netflix that I am interested in watching. I if it’s a movie, I may get to bed as early as 2:30 or 3am; but if I land on a new TV series that I want to begin watching I may get so caught up in the cliff hangers, and poor me without an ounce of will-power, will end up having to watch the next episode ..and the next one …and the next one …and so on, and so on, and so on. That’s kind of how I ended up being up till 6:30am this morning (by the way “United States of Tara” – excellent show!!). I do want to add that my lack of will power wasn’t the only reason I was up so late last night. I just COULD NOT sleep. Even at 6:30am – I got into bed, and I just laid there and laid there. And I felt like I was exploding on the inside. All I wanted to do was GO TO SLEEP. The voice in my head would just scream “Sleep already, SLEEP!!!” But I couldn’t and I was just so frustrated and angry; really angry. It was freakin’ 6:30am and I just could NOT sleep.

…….eventually,  I did doze off and slept in until 10am.

So here I am now with only a few hours of sleep, and I am a total mess. The tears just keep rolling and they are not stopping!!! I just want to make them stop! They are giving me a headache that just gets worse and worse with every tear shed. Everything is making me cry. Everything and nothing. To top it off , I’ve got the crazies; my skin is crawling and I just want to rip it off, I am jittery and nauseous and dizzy. I keep pulling at my clothes and my hair, I can’t sit still, I keep jumping up to look for something, but I don’t know what I am looking for, so I sit and I cry while I write, then I get up again and I pace, and then I do it all over again. I am just so tired.

Right now I could sleep, right now in the light of day I could just sleep.  But I REFUSE!! I can’t! I won’t!! I am fighting it. My lids are heavy and they want to close, but if I let myself, how will I ever get back to a normal sleep schedule.

I have been puposely depriving myself  and withholding my naps. That is my strategy for turning  my clock back to the right time zone. And that is a biggie for me. I LOVE my naps. I NEED my naps!! Really I do, especially given my complications with Fibro and the excess tiredness and fatigue I am constantly suffering  from. Naps are a natural and necessary part of my ordinary day, even when I am on a more realistic sleep schedule. But for the last week I’ve held back on the mid day naps so my sleep schedule can match the rest of the world’s. So here I am with a bad case of the crazies; and the tears just keep falling.

Yup, I am broken all right!

Please don’t ask me why or what’s wrong. I don’t know the answer to that and it will only make me cry more. That’s what was so great about having a little angel around. She stroked my hair and wiped my tears and said ” It’s okay Jiji; it will all be okay”, ” I will stay with you and hold your hand and I will be your friend”, “And then Uncle Ron will come home and hold your hand, and he will be your friend too.”  

…Okay, okay, so that did make me blubber all over the place too! But those were good tears. Unfortunately my Angel was picked up early today and I am left here to go cuckoo all on my own. It’s probably for the best though. I am arranging for Leon to be on a playdate right after school too!

ARRRGGH! More tears ….and not so much, the good kind this time.

Where are these tears coming from? Like I said I don’t know exactly, but there are a whole slew of possibilities ..or even the combination of a few or all of them. Probably the later. Lemme see, I am sleep deprived; depressed; in physical pain; menstruating; I am self sabotaging myself; I have temporarily fallen off of my meds (and my rocker too it seems); I still feel over-whelmed by life – which is not part of my new year’s plan; I have too much to get started and I don’t know what comes first; I forget to eat until I remember and then I eat the worst stuff on earth (i.e.. A whole bag of chips for dinner) so I am probably malnourished; I can’t think straight; I have trouble staying awake during the day (even when I am on a good sleep schedule); and there has been such sad news going on all around me lately; and, and, and I am just broken, really, really broken.

An acquaintance’s husband died on Dec 23 with no warning, leaving a wife, a 7-year-old son and 3-year-old twins and barely any money to make ends meet. My close friends, Heather and Eddie are going through hell trying to get answers as to why their sweet little boy keeps ending up in the hospital, most recently being in the ICU throughout the Christmas/New Year’s holiday. My mom’s sister, my Tante Angela, died this past Monday. And just today I found out that a classmate’s, of Leon’s, mom died on New Years Eve. We had met while the boys were in pre-school, she was such a nice person and a great mom. I always have such a hard time hearing about young children losing a parent. So yes, life has been a bummer lately and the news has been really, really sad. And did I mention the whole I am menstruating and therefore I am more hormonal and cry-ee than my usual self thing?

So yeah, I think I am broken. It is definitely not the first time (and probably not my last). Today was just the day I SNAPPED!

…it has taken me all freakin’ day to write this; emotional outbursts in private and all; so I am taking my evening medication and some Tylenol PM and I am getting into bed now and I am going to pray for sleep, and a tear free day tomorrow. Good night.

Today was the day I snapped and tomorrow is the day I will begin again, to fix it.

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Too Many Tears in my Ears

I lost it on Sunday. I was just trying to be ‘normal’, just trying to do normal. But it was just too, too much.

Lately that’s nothing new – things being too much, I mean. By lately, I mean the past 6 months, and by things, I mean everything – life, pain, thinking, breathing, functioning, and living all of it.

I feel like I have lost so much of my life in the past 6 months, I was just trying to get a little bit of it back.

Last year was a pretty decent year but I must say this one pretty much sucks big time.  My health started to take a real steep dive just before Christmas 2010. Our winter was brutal. I think we had a total accumulation of about 60′ of snow. We had snowstorm after snowstorm after snowstorm and then some.

My annual winter fibro flare went in to high gear. The extreme cold had its grip on me. I was snowed in, in more ways than one. I pretty much did not step foot outside the house unless I had to. When I did, I would instantly freeze up from the inside out, the pain and stiffness was just too much to bear. I spent my days either in bed or on the couch for most of Jan and Feb, I felt like a bed ridden shut in.

And the worst part was that it was just never-ending. Never ending pain and never-ending fatigue.  I just could not wait for spring to come, for this flare-up to end!

In January, Ron’s car broke down the same night of a big storm. We knew we would have to get it looked at but aside from it being completely buried under a few feet of snow; we didn’t have the money to have it looked at, let alone repaired. He did manage to dig my van out and he used that for the next several weeks which turned in to a few months. I had no car, in an area where a car is practically a requirement. But, I didn’t mind, I was still in way too much pain to even leave the house for the time being.

On top of this all too long flare-up that I was caught up in, I also got real sick in the end of February. It started out normal enough, with a sore throat, post nasal grossness and a sinus infection but then turned ugly in a really bad bronchial, can’t stop coughing, cold sweats, have no energy, and I think I am going to die sort of way. That lasted into the first week or two of April. Thats 2 months worth of mucus people; not what you need during a mega flare-up

So there I was in a never-ending flare-up with a never-ending cold during a seemingly never-ending winter. MISERABLE!

THINK SPRING! THINK SPRING! THINK SPRING!

Spring was just a big tease! She’d show up for a day or two; and then wham winter claimed the next few days again. And this was NOT a onetime occurrence, I’ll tell you that. It seemed Mother Nature just could not make up her mind. But eventually the sun stayed and flowers started blooming.

This is normally the time when I start feeling stronger. But, I came out of the whole sinus/bronchial/death thing; feeling weaker than ever. I just could not function. All normal daily activities were suspended.

The pain was still there, the fatigue, the stiffness, the I-am-so-caught-up-in-this that-I-can’t-catch-up of it all, was STILL there. And the weakness, and lack of energy, that was there, the I just can NOT function at all, the I can’t think straight, I can’t remember things that just happened moments ago, the holy crap my mind knows I’ve got things to do but my body isn’t letting me, was all constantly in the way.

That’s NOT normal, not for this long anyway even with having fibro.   THIS was something different – SOMETHING WORSE – more intense, with new symptoms and different pain.

I am not used to never-ending flare-ups. Nor was I used to the new more intense symptoms. It’s all been just too all-consuming.

And though I have said it before; it doesn’t just hurt me physically, but it contorts me emotionally and mentally too! And then, there is the fallout that affects those closest to me. Ron and Leon being the primary victims.

I feel like a failure as a mother and wife! Poor Ron has had to do so much more than his fair share. He is exhausted and stressed from work, taking care of Leon and taking care of me. My worst fear has always been losing the people I love, like I lost my father. But I now fear something worse. I fear that Ron will grow to hate me, and resent me and my illness.

Leon suffers the effects just as much, in that his mom isn’t all that present. I feel like a non person right now. I am failing the two most important people in my life, and I am failing myself.

Supermom has left the building and the kryptonite which is my illness is killing that part of me. The me I want to be, part of me.

I haven’t even been physically able to keep up my own home. So crap has been piling up since January. At this point we could be featured on hoarders, because life is cluttered and messy and I do not have the ability to clean up after life. Even with Ron’s tremendous help, it’s been nearly impossible to catch up. And when we get close more comes our way and everything is put on hold.

It’s been 6 months of this and while Ron has done everything humanly possible to juggle everything, it hasn’t worked.

It’s time to get back to normal. I just want to get back to doing normal things. I And we need to start at home. Ron and I committed the weekend to doing just that. We were trying to clean up and organize 6 months worth of mess in just one weekend. I pushed myself to the limit. And I broke!  I pushed way too hard, by the end of the day on Sunday I could barely stand straight or move without a yelp or painful grunt. I was spent in every way possible, just struggling to walk from one room to another. Ron wasn’t faring any better. With both of us completely spent, and only one last nerve left between the both of us; it did take much for it to be triggered.

I don’t even remember who or what triggered it initially, I just remember being disgusted with my self and my situation, and questioning “why me?”; I lost it. And I lost it BIG!! I just collapsed into bed and started to cry and cry and cry and I just could not stop.

Today is Wednesday and I’ve been crying every day since.

This year has been all too too much!

There have been way too many tears in my ears; it’s time to find out what is wrong with me.

Something is definitely wrong with me!!

Blogging it out!! (Part 2) – The day the school lost my son!

..and then came Tuesday

…..continued from Blogging it out!! (Part 1)

Tue 5/12– Leon got up and left for school with no complaints or complications, he promised it would be a good day today. After getting him on the bus I packed up the baby and went to the mall, it was Ron’s birthday the next day and I had to pick up a present for him and along with a few other things. I didn’t plan to be out that long but I was, once I realized the time I scrambled to get home. It was after baby Keira’sfeedingtimeand she was still quite content but I did not want to risk a melt down in the store, so we headed home. It was 12:59 by my clock in the car when we pulled into the driveway. I brought the baby and the bags in, put the baby in the highchair and the frozen waffles in the freezer, and then went to put the bags in my room. As I am walking out of my room I hear a knock on the screen door ( the door was still wide open with the keys in it). I look up and I can’t believe my eyes. I instinctively look at the clock thinking ‘what the….? Is it really 3:30?’  No, it was 1:o2pm. I look at my little man at the door, freaking out just a bit,

“what are you doing here?”  I ask

He says “I’m home!”

“But how?, How did you get here, what are you doing here” I say as I search around for some answers up our walkway looking for some sign of how he got there.

“I walked.” he answered

“YOU WALKED!, what do you mean you walked? You walked from where?” I say my voice starting to shake.

“From school” he said

“What do you mean you walked home from school, how did you get out of school, didn’t anybody see you, did you sneak away, where were you when you walked away? I ask, getting more upset.

“no I didn’t sneak, I just walked home that’s all” He responds

I tell him to go to your room and as I am walking him there the tears start to come out, I grab him and tell him I love him, and that what he did was very very dangerous, something very bad could have happened to him, he could have gotten hurt, or lost, a car could have run him over, or someone could have grabbed him and taken him away forever.  He actually said “no mom, if someone grabs me I know how to protect myself, I know karate and how to wrestle”. … “no, no you can’t you’re just 6 years old!!!”

I tell him to stay in his room, while I try to figure out what I am supposed to do next. I grab the phone and start pacing, I should call someone, shouldn’t I call someone?? Who do I call first?  Ron?  The police?  My sister? The school? …THE SCHOOL!! Do they even KNOW he is gone????

I call the school and the secretary answers, “______ School, Mrs P speaking” I say “Hi Mrs P, This is Mrs. O”, “Oh hi, Mrs. O…” “yeah umm, Leon just knocked on my door here at home!, he just walked home from school!” She says “Oh my goodness, hold on”  …yeah, I guess they didn’t know.. I am getting more and more angry and upset as I pace waiting what felt like forever before someone gets back on the phone. The principle gets on and says, “Mrs. O, hi this is Mrs D, What happened?” “I have no idea what happened, all I know is that Leon just knocked on my door” I respond. She asked, “do you know how he managed to get out of school”, I tell her that “he said he was outside for rec” , “which route did he take?” she asked. I said “I have no idea, I am just so flabbergasted that this could happen, I haven’t even had a chance to speak to him.” She said,”do you know he’s been trying to go home on a different bus?” , “yeah I got a call yesterday about it” I answer getting more annoyed! “we need to find out how this happened, can you bring him back to the school?” “yes, well it may take me a bit I have to feed the baby and pull myself together, I am a bit flustered right now”, her answer is “of course, I understand, I have a meeting at 1:30 and one right after that, so if you could come before 1:30 or after 2:30 that would be good”  [Seriously!? A meeting? More important than a kid leaving school property without you knowing???] -I thought it but I didn’t say it, I was too busy holding back tears to be angry. I would have to say that everything that I did from this point on was fear driven. I looked out the window to see if my girlfriend’s car was in her driveway. She wasn’t home so I called my sister, I asked her to come get Keira, as I freaked out on the phone. I was so angry, and just, at a loss, what the hell… She had to call me back, in the mean time my girlfriend down the block had pulled into her driveway. I called her and I just started crying, all the thoughts of what could have happened kept flashing through my mind, I managed to squeak out “can you come over”. She hung up and ran right over. I told her what happened and asked her to stay with Kiera. She was just as upset as I was, her daughter is also in 1st grade with Leon and they play together often. On the ride to the school I tried to get some answers from Leon so I could make sense of it all. I found out that he left at the end of recess after everyone went inside, that his reasoning for leaving was because he did not want to go back and do work in class, and that the route he took home was one that he had only taken once in his life over a year ago. I also asked  him what he would have done if I wasn’t home. His answer was “oh, I’d just go back to school”. I the parking lot I run into a friend, M who sees that I am not exactly myself and asks what’s wrong. I am so upset that I end up spilling it all. She tells me to get myself together and just be strong. When I get to the office I am told that the principle will be with me in just a moment. I hear the gym teacher being paged to the office. He comes in and sits down with us. I find out that he was out there with him at rec (he also told me who else was there). M comes into the office and lets the staff know she wants to cancel her 1:30 meeting with the principle, when they asked if she was sure she said absolutely this is more important. A few minutes later we go into the principle’s office, together with the gym teacher and the social worker. We start off with trying to figure out the how. Mrs D (principle) asks if I know what route he took. I let her know he walked the length of the field and out the back gate. She looks at Leon and asks if he realizes how serious this all is. I said, isn’t that gate supposed to be locked? and she said “yes, and I will be talking to the custodian about that”. She asked Leon if he just wasn’t having fun at rec or if someone or something was bothering him. I told her that he told me that he had a good time playing with two friends and the gym teacher confirmed that. She asked “at what point was it that you left, Leon?”, He said “at the end”, She turned to the gym teacher and asked where he was at the end of rec. He said “I was on the blacktop near the grass when I blew the whistle to line up and then I collected the equipment to bring inside”. I then turned to Leon and asked if he had heard the whistle, his answer was “yes”, I said “and then what”, “And then everyone lined up and went inside” he answered, I said “and then what happened”, “and then I went home” he answered. We asked if any of the teachers were there to see him and he said “no they were already inside”. At this time Mrs. D turned to the gym teacher and said “we need to make sure that there is an adult at the end of the line from now on”  {umm, from now on??????}.

After discussing the how, when, where, and why of it with Leon. We discussed the dangers and why it was so bad to leave the school without permission, without an adult. He seemed to know that it was wrong, and he could recite the dangers of it but how do I know that he really gets it??? How do I get through to him that his actions could have had catastrophic results. How do I know that he won’t do this again??

We then moved on to the consequences. Leon needs to learn something from this, right!  Mrs D informed both Leon and I, that he was to be suspended from school for one day. She handed me a letter to make it official (apparently she had had it typed up before I got there). I read the letter over while she told Leon that he had to spend the day at home and that his school work would be sent home for him to do, she also told him that because he can’t really be trusted anymore, he would not be allowed to participate in outdoor rec for the rest of the year, and that because he seems to get into alot of trouble in the cafeteria that he would probably have to eat his lunch in the main office for the remainder of the year as well. I must have read the letter 3 or 4 times because I was distracted by what she was saying, and still so bewildered and flabbergasted over all that had happened all I kept thinking about was all the ways I could have lost my child forever. The suspension letter didn’t feel right, neither did the no rec and the lunch in the office thing but I was more concerned with focusing on Leon and what was he thinking and why did he do this rather than how the hell could this have happened. I let her know that the suspension didn’t sit right with me, I said “I understand that this may be the schools policy, but don’t you think that this just gives in to what he was looking for in the first place, I don’t know that this will help”, her response was that in school suspension wasn’t really possible because they didn’t have someone to sit with him all day. Ohhh???huh??? I then asked what Leon would be doing on days that there was outside rec. She said “they would find something for him to do, like library or computer lab, or join in one of the clubs.” {I wasn’t too thrilled with the idea, on the one hand Leon loves computer lab so that would be too bad BUT on the other hand Leon loves computers -it’s more of a reward for him- he would rather be on a computer by himself than outside playing with others, Leon needs to get out and be active and social}.  I mentioned to her that I wasn’t to sure about that and she said “well you can talk with his teacher and decide what activities you think would be appropriate for him”.

We left the school and headed back to the car so many emotions running through me. I cried some more on the way home. It’s just so overwhelming. I grounded Leon to his room for a week. My friend K who was watching Kiera for me stayed with me for a while so I could get myself together. I spoke with Ron a couple times. I left a message with Leon’s pediatrician asking him to call me back. When my sister showed up and I had to tell the tale again I started hyperventilating and crying. My sister was tempted to drag Leon out by his ear so he could see how this was affecting his mommy, but I wouldn’t let her. I don’t know if seeing me like that would help or hurt him. I just know that seeing what I did to my own mom made me feel worse about myself. Leon is 6, he should have such bad feelings about himself.  I was too upset to be driving, so my sister drove Leon and I to his therapy appointment (he goes every Tuesday). They discussed the dangers of the entire situation. Leon seemed to understand. But does that mean he has learned from it? Does something bad have to happen before he gets it?

When we got home Leon got dinner and was sent to bed. Ron and I spoke with his Pediatrician who suggested upping the dose on his mood stabilizer. Which after speaking to him for a while we agreed to. I also had to cancel babysitting for little V and tried to get my mom to take Kiera the next day but she couldn’t. I just didn’t want any distractions for Leon. That evening I just could not stop thinking about it all. I was just so incredibly agitated. Finally I decided to sit down at my computer and BLOG IT OUT. I just didn’t realize it would take several days to do it. Granted I didn’t have to include the 2-3 weeks of history that came before it, but since it has been eating at me all this time I felt it was important to get all of it out as well.

Wed 5/13-the day of Leon’s at home suspension and Ron’s birthday. Leon had managed to completely wreck his room before bed the night before, so I was trying to get him focused on cleaning his room. The problem was that without his DS as leverage I had nothing to work with. Because his room was so cluttered it made it hard for him to focus on any one thing therefore he was in constant need of attention. He wasn’t the only one though, Kiera was very clingy too. I didn’t want them to mingle with each other because then Leon would have succeeded in getting exactly what he wanted which was a day home from school to play. I spent the morning playing with, entertaining and feeding Kiera, while fending off Leon’s calls for attention. I told him that I would come see him in his room once it was cleaned up. It worked for 10 seconds before he let himself get distracted. When Kiera went down for her nap I was able to focus on Leon. I tried a few attempts to get him to clean his mess and when they failed I stormed in with “the bucket”. The bucket meant I was taking away as much stuff as I could collect before he got to them to put them away. He wasn’t happy but he got the hint that mommy wasn’t kidding any more. I stayed on one side of the room while he managed to clean up the other side of the room. When we were done we discussed the ground rules of being grounded to his room. No leaving the room for any reason except going to the bathroom and only with permission first. no taking out a toy to play with, without first cleaning up what he was currently using and asking permission for that specific toy, useinghisartsupplies and reading his books require no permission but if I find a mess the items will be removed. No asking for food or drink – I would call him out to eat at the appropriate times. Then we sat to read together. Half way into the book I get a knock at the door. My neighbor, D,  stops by. She heard what happened and wanted to talk to me about it. I didn’t want to interrupt reading time with Leon but I wanted to here what D had to say. I told Leon that he would have to work on something else until I was able to come back. D tells me that she heard what happened from S (S is the PTA President), From S?, how did S find out? S found out from M (whom I ran into at the school the day before). S casually asked D how I was doing. D did not know anything about it so S told her what she knew. D then tried calling me a couple of times before she knocked on my door. Apparently D felt it neccessary to call the police on my behalf, they were shocked to hear that a 6 year old was able to leave school property unnoticed. They urged her to have me come in and file a complaint. I wasn’t quite ready to do that. D also told me that S wanted me to call her, but just then my friend K came by with Leon’s school work, which was very nice of her. The three of us discussed what had happened. More scenarios of doom came to light. Like, what if he turned left instead of right? He would have ended up on a major road with three lanes going in each direction, or what if he got hit by a car while crossing the street (something he knows he must always hold a hand to do)to get home, or what if he decided to wonder into the park and fell off the playground equipment and got seriously injured without anyone knowing, what if some pervert picked him up, what if he got home just 5 minutes earlier and I wasn’t here? Would he have found his way back? And then the how long would it have taken the school to realize he was gone?? Seriously, I am the one who called them to tell them they lost my child. They did not even know he was gone. The three of us put it together, Leon left at the end of rec which was at 12:55pm. From rec they go to lunch till 1:25pm, then Leon has gym. They did not notice he was missing at lunch, I have to wonder if someone would have noticed his absence in gym. He could have been missing a whole hour before they noticed. The more we discussed the whole situation the angrier I got, here they were punishing a 6 year old child for something they were responsible for. The fact that any child, let alone a child with a known disability could leave school grounds unnoticed is unacceptable. Rather than call the police I decided to contact LIAdvocacy to see what they would suggest. First and foremost they felt the matter should be addressed with the School Super Intendent and the head of CSE. Before calling them I decided to call S. S was so concerned for Leon and I, after I shared the whole story (again) with her she asked if it would be alright to give my number to a friend of hers on the Board of Education, she felt that she could help me. I got a call from M and a few other friends in between where I rehashed the story again, and again, and again, people were advising me to call the news and/or a lawyer,it was getting crazy. I just could not get off the phone. Poor Leon and Kiera both wanted my attention. D from the Board of Ed called me she wanted to hear the story, I told her about everything, the gate being open not just on Tuesday but it had also been left open the previous week, him walking the length of the field unnoticed, how he managed to get home, how I was the one who had to let them know he was missing 15 minutes after he left, about the issues I had with getting him help through CSE, and how I felt had they classified him or given him a 504 plan this might not have happened, how he was spoken to and what consequences they gave him, all of it. She just couldn’t believe it, she wanted to pursue this with both the Board of Ed and CSE with my permission, which I of course gave her. She also asked that I call them directly as well. I told her I would however I really needed to put some time in with the kids for a while first. I asked her opinion as to whether I should contact the police or not, she did not want to tell me what to do but suggested I consider that once I get the law involved then the school would probably get the lawyers involved, and then I might have some resistance. I don’t want that, the lawyers would get caught up in there agenda and mine for my son might get a bit lost in it all. After I hung up with her and ‘tried’ to attend to the kids. M called back because I had to cut her short previously, she wanted to know if I called the news yet. I told her I did not see the point. The thing about the news is they never get or show the whole story. I don’t need Leon’s name thrown out there for the whole community to see just for a 5 second blurb about how the school was neglecting keeping him safe. Granted another friend of mine pointed out that I had a responsibility to make other parents aware, and while I believe that they should be aware of it, I can’t take that on right now. My first and foremost responsibility is to my own child. I can only deal with one thing at a time and right now all my focus is on Leon. M was great she has a daughter with Aspergers and she has done her share of advocating for her own child, she offered herself to us as a parent advocate for CSE. I am very pleased about that, she knows her stuff and she knows Leon and I since we all started this school together with pre-kindergarten as Pre-K parent teachers together. after speaking to her I needed to buckle down and get him to do school work. We managed to do 2 days of work in less than 1 hour. He was being very co-operative. Once that was done I realized how late it was and had to put those calls into the Super Intendent and the head of CSE. I left messages with both offices. i knew that if I had to tell the story one more time I was going to explode!!! I had enough, every time I told it my stomach would sour and I’d get nauseous and all worked up about it not to mention the headache that started as soon as Leon knocked on the door the day before and it never really went away. Talk about STRESSED!!! The Super Intendentcalled back, she had just finished speaking to D from the Board of Ed. She started out by letting me know how appalled she was at the whole sitiuation and that Leon should not be held accountable, the adults in charge should be. She asked me to tell the tale again (AAARRRRGGGHH!) and I did. She felt that the suspension and the taking away his outdoor rec and suggesting he may have to eat his lunch in the main office was quite excessive and counter productive. And we all know I agree with that. She assured me that Leon was not responsible here the teachers in charge were and they would be held accountable and that proper procedure will be followed in keeping the children safe at school. With that I asked that the suspension be removed from Leon’s record. She did say that the principle makes the decision on suspensions but I do have the right to appeal it. She told me she was going to speak to the principle about the whole matter involving the gate being left open, Leon not having proper supervision and the matter of his consequences and that I should expect a phone call in the morning from both the principle (with an apology) and herself ( oh yay more phone calls!)Once that was over I told Ron I was D-U-N DONE, I was not taking anymore phone calls, i just wanted to veg out on the couch with his laptop and blog away the day. That start off well enough until my mom called, there was another hour and a half on the phone, but at least it was productive, we decided we would definetlygoforward with getting a private assessment for Leon and she would take the money from the college fund she started for him to pay for it. Okay now it was really time to quit, off to bed I went and laid awake think about it for the next several hours – I think I got about 3 hours of sleep, which was more than the night before.

Thur 5/15  –  Leon is ‘allowed’ back in school. After only 3 hours of sleep I get up and get Leon ready for school. Getting ready included little pep talks along the way about school safety, following directions, good behavior, etc, etc,etc.  My stomach was in knots, my headache was in full throb mode, and my skin was all lumpy and bumpy, and red with itcy hives, and my face was all tight and in pain from waking up with my teeth clenched tight …yep, I was ready for the day. I was nervous I guess, hoping there would be no “Oh No, Now What?”‘ calls. The calls that read “_____ School District” on the caller ID and I immediately think, “Oh No, Now What?”. For the most part I figured the worst has past and we could go on from here, I planned to sleep and blog all day ….

Before blogging though I decided to check my Facebook first … Wow, was there a lot of comments about my status update from the night before. My status mentioned the difficulties of the day and Leon’s suspension. There was firestorm of outrage and disbelief. A few people mentioned that I should be contacting a lawyer or the press. It was a bit much so I switched to blog mode, I just wanted to step away from it all for a bit. Instead what I got was dreaded phone call after dreaded phone call and a complete emotional breakdown. The first call came just an hour after Leon got on the bus. It was the principle calling to apologize??? I thinkit was an apology anyway, she has a way of deflecting. She started the convo with “Hi Mrs O, this is Mrs D, I just wanted to let you know I spoke with Leon this morning, regarding our expectations of him, I said we were happy to have you back and hopefully you can follow rules and directions from now on”. She went on to say “I just got off the phone with the Super Intendent, I understand you spoke with her?”. “Yes I did” I said. She then said, “I understand you were not happy with the way things were handled …” (I think that was my apology). I explained that, in the mists of everything that was going on on Tuesday, being so emotionally raw about it all, I just really could not think straight, my only focus at the  moment was Leon, and the fact that he was indeed okay, despiteallthehorrible things that could have happened. My immediate concern was for him and what he was thinking and feeling and how much does he understand about the dangers of it all, along with what made him do it. I am so used to the “now what did he do” with Leon that I forgot to be angry with the school’s neglect in keeping my child safe. I explained that I had spent the day before on phone call after phone call with concerned parents wanting me to ‘do something about it’ (call the police, a lawyer, the press, etc.) and that the more a talked and thought about it, the angrier I got, because as much as Leon was the one who made the decision to leave the school it was ultimately the school who was responsible for this happening, they did not provide proper supervision and should have locked the gates. I felt that the punishment was severe and counter productive to what he needed. I mean think about it, the suspension taught him that if he misbehaves and leaves school he gets to stay home from school. And to take away outdoor rec from a hyper active child with ADHD was hindering him more than helping him. She let me know that the suspension was lifted and that in fact it never actually went into his file. Something I find a little hard to believe considering that between the time I called her to let her know she lost my child and I arrived there, she had already had her secretary type up a formal FROM THE OFFICE OF THE PRINCIPLE letter saying ” I am suspending Leon for 1 day for engaging in behavior that could have resulted in harm to himself and for his disregard of school rules and procedures” and Cc’d it to the Super Intendent and CSE. But whatever. She also told me that he would be able to participate in outdoor rec and lunch in the cafeteria, and they would just have to watch him more carefully. To be fair she did explain that she was just as flabbergasted as I was on Tuesday and that her concern was for Leon and what would it take to get this child to understand the severity of his actions. I get that, I really do. As much as she does have a  tendency to deflect and talk down to people in general, I do know that she had Leon’s best interest at heart. I just felt she could have been a bit more professional when dealing with it. While I was on the phone with her, her secretary informed her that there was a call on hold from a parent who had heard that a child was able to leave school and no one was aware of it and wanted to speak with her about it. Oh boy! She assured me that it was not going to happen again, they are watching him very carefully, those responsible are being dealt with and all procedures are in place, ‘Everyone is doing what they are supposed to be doin”.

A few minutes later I got a call from my friend K, she let me know that Channel 2 and Channel 12 want to talk to me. WHAAATT? , oh no, no, no. I don’t want to talk to the press, do I? Wait! How did the press find out? K, was one of the commenter on my Facebook status and was very upset and understandable so, her son is the same age as Leon and attends the same school. She was the one who had called the press. She did not know the whole story yet so I told her all about  it, including why I did not want to get police, lawyers, or press involved. She had  called the press because she firmly believes that it is important that parents know what happen for the safety of their children. I agree wholeheartedly but I am not going to be the one to spearhead this one.

Some may wonder why, if I don’t want to talk to the press, am I blogging all about it here. I have a few reasons, 1-to keep it all documented in my own way, 2- so I don’t have to retell the tale so often, 3- because I do feel that parents should be made aware of what happened by way of the whole story and not just a 5 sec blurb on the 11 o’clock news,  4-I don’t trust the news, they never report the WHOLE story, there is always more to it than anyone ever sees, and  5 – I don’t want my son’s name plastered all over the news talking about his disability and issues. I’ve already taken the steps I need to to rectify the situation and Leon is on his way to getting what he needs. Once I explained all this to K, she totally gets it now. I am truly not upset that she called the press because as I said parents should be made aware, I think the school should make a formal statement to the parents in regards to what happened and address how they are handling it, just to alleviate peoples fears. Plus this would be a good opportunity for parents to have a talk with their kids about safety in and out of school and remind them of school rules.

After that call and a few random, ‘how are you doing” calls I decided to try and sleep my headache away, but that was not an option, by now it was 1pm and I got a call from Mr D, the gym teacher just to let me know that they just concluded rec and he was doing nicely and that they are keeping a close eye on him. I don’t think there was an apology in there either. Okay, great, fine, are we done now? I just want to go to bed!! I go to lay down and the phone rings… Whaaaaa! Now it is the Asst. Super Intendent calling on behalf of the Super Intendent to follow up and make sure the principle contacted me and informed me that the suspension was removed from the records and that he would be able to participate in all rec time whether it was inside or out. I told him I did speak with her. He then said “I also wanted to inform you that the press has been in contact with us. I want to assure you we kept all names confidencial to protect your family. We did however need to respond with a general statement”. Oh yay! I thanked him and let him know I had no interest in speaking with the press. Now can I go to bed??

Shortly after that call K called me back to say Channel 2 contacted her to say they were going to be in the area and wanted to know if I would be willing to talk to them. She answered for me saying I was not interested in talking to the press, I was just happy that my son was safe and am handling it internally. But she did want me to know they called back. I spoke with her for a while and then begged off to nap.

No chance, as soon as my head hit the pillow the phone rang again. It was the principle again. She said she was very surprised that I picked up the phone. When I asked why she said well Leon seems to be confused, he keeps insisting that he is supposed to get on bus #21 instead of his own. When she asked him what his mommy would say if she called, he told her all our phone lines were dead, cell phones and all, that’s why she was surprised to hear my voice. She asked if I could clarify things for Leon over the phone. When he got on asked him why he was lying about the bus. he responded with “I’m not lying I am Confuuuused!” Umpf!

Ugh my head hurt, my body ached, my breathing was labored, Dude I am stressed! Enough already! Seriously what the heck am I supposed to with this child? I called Ron with the “now what” call and to tell him that the press wanted to talk to us. As I was explaining everything my words came out faster and faster, Ron could hear the stress in my voice and told me to slow down, that’s when I lost it, I just started crying and crying. I got everything out eventually about his behavior and the press being involved now, I asked if we wanted the press involved, he wasn’t sure, maybe they would help in us getting what we needed. I didn’t have a good feeling about it so we decided to talk about it later. I asked him to try to get home earlier rather than later and he said he’d try. I tried to get off the phone quickly before he figured out I was crying again.

I managed to lay down for about 15 minutes before the phone rang again, AAAArrrrrrrgggggggghhhhhhhh!!!!!!!!!!! Now it was Mr. D again, he wanted to let me know how things went in gym. Apparently he told Leon to go to the back  of the gym and Leon  managed to make his way into the boy’s locker room (at the back of the gym) which is only used by third graders on up. He assured me that he had someone posted at the other exit to make sure Leon did not get away from him when he went in after him. He asked Leon what he was doing in the locker room and he answered “you told me to go into the locker room” Mr. D said “No I didn’t, your not a third grader yet why would I send you into the locker room? , “I don’t know but you told me to come in here”. Why is this child lying so much?? He also seemed to be testing the boundaries at rec, when he asked to go to to the bathroom twice. The first time because his pants were on backwards and the second to get the book he insisted he left in the bathroom. The school is being very careful not to let him out of their sights. When Mr. D reminded him that he did not bring a book, Leon was vehemently sure he did, so they went to check anyway. On the way they asked his classroom teacher about it and she said ” no, I have it, I had to take it away because you were hitting yourself in the head with it, remember?” Apparently Leon forgot about that.

The next call was from the head of the CSE, she wanted to hear about what had happened and to talk about Leon’s ADHD and what they can do to help. I told the tale AGAIN. I told her all about Leon’s experience in Kindergarten that led us to get him diagnosed, and the first month of 1st grade that led us to have him evaluated by CSE and go on medication, I told her how his grades were so good that he did not get services, but had he gotten them we might not be having this conversation now.  I let her know that we were planning to have a private assessment done and that I wanted to request he be evaluated for services again before the end of this school year. She let me know that she would like to meet with me next week and then we can set up an official CSE evaluation meeting. I had to talk to Ron of course before making the appointment so I told her I would call her back.

When the phone rang again I was ready to throw it out the window, it was Ron this time wanting to know if I needed him to come home. I just crumbled and cried into the phone, ” Yes, please come home, I can’t do this anymore, I just can’t do this all by myself”, He said he was leaving right away and would be home before Leon got off of the bus. Unfortunately he did not make it in time. I knew there might be difficulty so I made sure to get to the bus stop in time. Leon refused to get off the bus. I was fuming, I stormed on to the bus, called Leon out using his full name, middle name and all (you know you are in trouble when mom uses your middle name!) and I started counting LOUDLY!! Poor Leon, I must have looked like a lunatic! He got off the bus and was angry. I told him to go straight to his room. He defiantly refused saying, “I’ll go in the house but I am NOT going in my room!” , “Oh yes you will young man now march!”. once in the house he sat his butt down at the kitchen table and refused to move. I was so defeated and exhausted and outraged and just so done! All I wanted to do was lay down and cry. I said “fine just sit there and do not move from that spot till daddy gets home”. He hmmpffed, crossed his arms and stared me down as I went through his backpack. In his assignment book which was not filled in properly (he has taken to just writing the first initials of each word in a sentence) there was a note from his teacher letting me know that even after speaking to me on the phone from the principle’s office, Leon STILL insisted that he go home on a different bus saying we moved, we really really moved. When that did not work he handed her a note. It said “Leon is going home with Rohit” and insisted it was from me. Yes, my sweet little 6 year old baby boy forged a note from his mommy in his little 6 year old chicken scratch handwriting. OY! If this is him at 6 what am I going to get at 16?? I have to admit it did put a tiny tiny tiny smile on my face because as bad as it is, it is still so frickin cute. He’s a ballsy kid that’s for sure. Smile or no smile I was distraught! I tried to get him to start his homework after deciphering his ‘code’. But he refused. I really had no fight left in me. Ron showed up and I spilled out all the details of Leon’s behavior for the day and he could see I was about to lose it, so he sent Leon to his room and me to mine. Ron took 2 minutes to make sure Leon understood that he was not to leave his room and then came to see about me. I jut sat in Ron’s arms just crying and crying and crying until I was all cried out and then we giggled over the noteLeon wrote in my name. Ron then took over with Leon, sitting down to do homework with him, then making him dinner, and putting him to bed. Me, I finally got to rest my head and close my eyes. I slept a while and woke up again at 8pm. I had such a sore throat that I was sure that it was from being on the phone all day for 2 days. I could not sleep with everything on my mind that t didn’t actually fall asleep till 4am.

Fri 5/16 – Ron got up with Leon and got him ready for school so that I could sleep in. I got to spend about 5 minutes with him when he crawled into bed with me to cuddle before Ron put him on the bus. Ron was nice enough to work from home so I could rest without worrying about the phone ringing or picking Leon up. There was also too much of this stuff on Ron’s mind to really meet his customers face to face. There were a few calls but mostly from friends checking up on us. I slept through all of it. I ended up with such a bad cold, I had every symptom you could think of, stuffed up, sinus headache, runny nose, coughing, post nasal drip, vomiting, nausea, but the worst was the fatigue. i just could not function without getting completely exhausted. Ron picked Leon up from school and they walked home to avoid the whole bus issue all together. While I stayed in bed till dinner time, Ron spent the afternoon checking on Leon every 20 minutes. Apparently spent it trying to retreat into a hole somewhere in his room. He hid in his hamper, climbed to the top of the built in wall shelves and tried to lie across them,  climbed into his closet and tried to get onto the shelf above the clothes rod. Ron just could not leave him unattended. I am so glad he was home because I don’t know what I would do.  I joined them for dinner and then unfortunately I was up for the night. I was coughing so hard that I just could not get to sleep till about 5am.

Sat 5/17 – Feeling a bit better but staying in bed for the day. Napping and Blogging all day while Ron kept Leon out of my hair. I just really needed a break! We did decide to let Leon out of his room but no electronics or playdates allowed. He spent the day reading and drawing.

…..And here is where I end this post. I know it is very, very long and took along time to get out but I really needed to get it ALL out. This is a great outlet for me. I am sure there will be much more to come.

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