Exhausting all options and thinking outside of the box.....and my comfort zone

    This week sucked. I spent the entire night before my IEP board meeting on Wednesday (scheduled at a gods awful 8am time period), playing out every possible scenario in my head.  This meeting was largely dependent on my giving an answer to the question the board and principal has been asking for roughly 5 months: Is Crisis at Home Teaching (CAHT) something my family is willing to consider?

    There's less than 5 weeks of school left. Nixon's final week of school is all early dismissal days, he has Memorial Day off the end of this month, plus 2 days off next week due to Kindergarten spring parent-teacher conferences and he'll miss a day due to a doctor's appointment. The point I'm trying to make is, there's really not a lot of school left. He still has Kindergarten Field Day and the class picnic....so yeah, lots of school but not a lot of educational requirements left.

    I spent time talking to Mac, or as much time as I could given his training situation, and asked for his opinion on the proposal especially since once he's home and back on shift he starts the overnight shift.
   Ultimately we decided to do it.

   But I didn't make that known to any of the school personnel prior to the meeting. I had a phone conversation with the County psychologist last week, but I told her I needed until the morning of the appointment to make a decision because I needed to give my husband time to think on what was going to be the situation at home, in the event we agreed to the CAHT.
    During my conversation with her, I learned the behavior charts I was getting every day were basic "fluff" charts (for lack of a better description) and they didn't have any of the details that she or the Special Education teacher used to comply the data they used and presented at our IEP meetings regarding Nixon's behaviors during the school day. That information came from a total different form that I had never even thought to think to ask about before last week. I asked to get those figures in addition to the daily "fluff" report. What pissed me off is that, because of that "fluff" report, I believed Nixon was adapting to the new classroom setup. I thought he was having fewer meltdowns, was being easily redirected, was cooperating and completing tasks asked of him and most importantly, I thought he was done having the aggressive behaviors (throwing things, kicking chairs and trying to hit/kick)....I was wrong. He's not shown any improvement behaviorally speaking since the classroom shift happened.

    Wednesday morning.
   Nixon and I arrive at the school at 8am, just in time for my IEP meeting. I brought Nixon's breakfast with us so he could sit and eat it while I was in the meeting, since we'd be there before school started I was throwing off his entire morning routine. Imagine how much better the day was going to go when I learned someone considered the conversation I had last week with the County psychologist as a meeting and took mine off the books.
   Yeah, no one called to see if there was an outcome. "Someone" just decided to take me off the books without even notifying me of the schedule change. Even better than that was, while I'm hearing apologies and mouth action, I'm reading pressure from the Vice Principal for an answer regarding the CAHT. I have this amazing ability to smile and play nice, while freezing a person out of their own skin. It's exactly what I did to the VP when she asked me the third time about the CAHT situation. After I placed the sweetest smile I have on my face, I informed the VP that I had already told the county psychologist I would not make my decision known until the IEP meeting with the board members present.
    Suddenly, she left the room to figure out her schedule and when she can get the board together. She returned and asked if I was available later that morning. I really wasn't but even if I were I wasn't in a very accommodating mood. The solution was to do it all over again the following morning: full IEP board meeting at 8am.

    Thursday morning.
   *I was tempted to not have my coffee before this meeting, but I'm not sure where Mac sits on my bail fund account, so I had a cup before we left.*
     After waiting for everyone to arrive, because who has ever heard of one of these meetings starting on time, I sat through the initial "blah, blah, blah" (which really sounds more like "Your kid's not bad, but he has a lot of issues and in case your self-esteem is too high this morning we're going to give you a highlight reel of his most "concerning and problematic" behaviors" followed by the highlight reel). I've never cried during these moments, even though in my head it sounds like a firing squad going off every time another behavior is listed.
    Finally, about 20 minutes into the meeting, someone finally addresses the giant pink tutu wearing ballet dancing elephant in the room: CAHT. It began with the principal listing all the things they've tried to help Nixon. And it went on with her adding how exhausting it is for everyone to not be able to solve the "puzzle" of Nixon. Still continuing with her adding "I probably should have suspended him, but I know that's not going to help him", quickly followed by "But it's hard to explain that to other concerned parents".
    I was thankful she was on the far end of the table from me, because other parents issues/concerns and shit like that, should not be addressed to me during (and only during) IEP meetings. I never hear about these issues or concerns from other parents until these IEP meetings. (Last time it was his teacher informing me another mother was concerned about Nixon's interaction with her child in the classroom.)
    Before I lost my composure, I spoke up.
    I let them know that Mac and I had agreed to do the CAHT, on the proposed half-day schedule, for the remainder of the school year. Nixon will go into school after lunch and stay until the end of the day. I'll be handling the majority of his learning and he'll still get his specials with his classmates. But, I voiced concern that he may not handle this situation well at first as it'll be new and will require time to adjust.
   We'll also be getting a teacher coming to the house during the morning hours Nixon is home to make sure he's staying on curriculum. He's currently not behind, though he's not easy to test. He knows everything he should know, but he's bored and that's leading to him acting out as well. (His aide doesn't think he's bored, she think he doesn't like being told what to do if it doesn't involve computer work).
   
    After 45 minutes of phone calls, to figure out a 2-sentence addendum to Nixon's IEP, which left me alone with the principal and Nixon's teacher (awkward and also enlightening...those are some burned out women and not just in their professional lives). I forgot to bite my tongue from letting my usual (and natural?) sarcasm slip out, and I made a Common Core math joke while listening to the Special Education teacher discuss the home teaching hours versus the in-school hours which apparently endeared me to the teachers in the room. That was NOT my intention!

    It's finally all figured out. Nixon, starting Monday, will be at home with me doing literacy/reading/math/science work and go to school for PE/art/music/media and other specials. I've bought several workbooks to keep him interested until the teacher situation is worked out (most likely after the Memorial Day holiday) and to hopefully keep him off the computer, which is what the school has gone to allowing him to do as a "maintaining" tool. He's been spending 2-3.5 hours a day on the computer, because surrounding classrooms are involved in end-of-year tests and Nixon's screaming and refusal to do tasks requested of him (that don't involve computer work) was becoming very disruptive, so the decision was made to offer 2 prompts to do the work and then if he continued to refuse or he escalated in his refusals, he was allowed to remain at task on the computer. This was happening to the point he was missing lunch! This was also another contributing factor in our decision to do the CAHT as I feel like the school was merely tolerating Nixon and not doing anything to help him as a person.
    Well, screw them! They don't deserve Nixon in their lives anymore.

It's okay to be angry, and I'm allowed to demand answers!

   It's been a hell of a month. It's May! Mac comes home in just over 2 weeks. The school's trying to "play nice" while still trying to find a way to get Nixon out of school.
   At the last IEP meeting, the principal suggested "at home crisis teaching" for half the day, which is Nixon would have a teacher from the county come to our home and teach him for 3 hours a week and he'd go to school in the afternoons for "specials" (Phys Ed/Art/Media, etc.). This was brought up as a solution for the aggressive meltdowns he had been having. I was opposed and had asked that the new schedule (mornings in the Special Education class with just his aide and the Special Education teacher then afternoons with his classmates for specials starting with lunch), be given 2 weeks before any further suggestions were made.
   After 4 days, I received a call asking about my willingness to consider the "at home crisis teaching plan" as Nixon was not adjusting to the newest educational situation. I asked, again, for the full 2 weeks agreed upon in the previous meeting. It takes him time to adjust to change.
   I had also made changes to his diet, his allergy and asthma medications (I took him off one that has been known to cause aggressive and violent behaviors in children with ADHD), I've started giving him a small cup of coffee which acts as a destimulant for those with ADHD or ADD unlike other people who use it to stay alert. I also bought him a necklace diffuse with essential oils meant to help keep him calm and focused, and I do a small massage on his feet and his back every morning before school.

   The second week of his new classroom setting saw a calmer, more quickly redirected Nixon when he did start a meltdown. He had a field trip, I went with as a chaperon. He had one meltdown at the beginning, but he recovered quickly, even from mid-meltdown he redirected himself!

   Last week was a funky week. Monday we came home from visiting Mac's family in Miami, and because our flight was so early, I kept Nixon home to let him adjust instead of sending him to school tired and cranky. It'd be setting him up for failure and he deserves better.
  Tuesday he was sent home early, turns out he caught pinkeye somehow. Wednesday he had to stay home because I couldn't get him to the doctor until the afternoon. Thursday he was okay, the medication for the pinkeye started working and he was able to return to school.
   Friday was a bad day. He was defiant, throwing things and abrasive. I had to go into the classroom and get him to leave school. Something was off, but I can't quite explain what.

    He's lost outside Phys Ed time, though I haven't gotten an exact explanation on why, yet. He told me today after school (another less than stellar day) that he had indoor recess. Today was beautiful outside. All the other kids had outdoor recess. Recess should not be taken away from any child, let alone an ADHD/ASD child.  He needs the outlet!

    I called the school as soon as I got home and left a message for the Vice Principal (also known as the top of the IEP board chain). She called me last night, in regards to Nixon's behavior last Friday, and inquired about the "crisis home teaching" plan option again. I explained that, as was discussed at the last meeting, that was only an option if his behaviors hadn't improved in the new setting and from what I was being told, he was more easily redirected and having few meltdowns. She admits to me she hadn't looked at his recent charts and was unsure if that was true or not.
   Then excuse me, but why the bloody hell are we discussing this?! He had a bad day, yes! But he went from having bad days that last hours to have a meltdown that he recovered from in less than 20 minutes! That's progress, in case anyone is wondering!

    The same VP called me tonight regarding the message I left after school. I was firm. I was passionate. I was angry! I was so pissed off that it feels like these adults are sabotaging my son's education so they can get him off their hands, instead of recognizing the progress he's made.
   I expressed my feelings about him losing outdoor recess. I was passionate about wanting answers regarding his lack of physical education options. And I was reasonably angry about how uninformed I was about these choices being made and how their affecting him. I was quite firm with my demand for answers about the recess being taken away and the PE situation when we meet for another IEP meeting on the 13th.

   I'm not sure how the Vice Principal felt after our conversation. I know she spent some time placating me, which is never a good idea when I'm in "Momma Bear" mode. But I made sure I was heard. I've advocated, I pleaded for the board to see Nixon and to understand him and his needs. I feel as though it's all falling on deaf ears and now I need to kick some dirt and raise a little hell! I'm angry, but it's okay. I'm allowed to be as long as it's a constructive anger.

IEP updates

   March was crazy, thankfully April seems to be getting better. Nixon had a horrible month at school and I was having a rough time at home dealing with all the crap that kept coming happening because apparently even though Mac is gone Life didn't realize I didn't need a crap ton of lemons poured into my lap.

   Last week Nixon had spring break. Well, he had school on Monday and then his spring break began. Spring break lasted through Tuesday of this week, which was not his best day back to school. even on his break he had rough days. He had a meltdown at the mall over lunch....freaking lunch! I was asking him what he wanted to eat after he asked if he was hungry. He spent most of his break telling me I'm asking too many questions, resulting in him going quite rigid and tensing his entire body.
   We did have some good times. We had a lovely Easter morning, spent a couple lazy mornings in bed watching TV together and found an alternative to the aquarium visit because after the mall fiasco that was pretty much off the table.

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    Yesterday was my IEP reevaluation meeting. It was supposed to happen in March, but snow days and spring break pushed it back five weeks. 

     I was stressed about this meeting. I'm very unimpressed with Nixon's treatment and assistance at the school, even with after I gave my cellphone number to the aide with a request to be contacted whenever a meltdown goes beyond a point that they feel they can handle anymore. I had warned the IEP board in January, that March was going to see Nixon most likely experience a behavioral regression due to Mac's departure for his 13 week training course. My warnings were forgotten and Nixon's behavior did in fact regress to a point far worse than even the beginning of the year. It doesn't help that there are days the schedule changes 2-3 times throughout the day. To most kids, this is no big deal. To Nixon, this is a trigger for a meltdown. He needs routine, time to prepare for changes, time to process and time to cope. He's not getting any of that. 

   The IEP he currently had, allowed for 1 hour out of his classroom for a one-on-one learning setting. This was, at my insistence, supposed to be given during the bulk of the learning at the beginning of the day. Instead it was being given whenever it was convenient and usually at the end of the day,resulting in Nixon being uncooperative/agitated and often perceived as angry, when really he's so overstimulated from the changes throughout the day he can't handle any more changes.   

    

    The result of the meeting ended up being something I felt all along: Nixon's current school is not a good fit nor are they properly equipped to provide him the assistance he needs. This actually came from a member of the County's Central IEP Board.
   But there's a larger problem.

   Nixon's behavioral issues require him to be in a smaller, more personal classroom setting. A special Education setting, ideally. However, Nixon's educational needs require him to be challenged more than he would be in a Special Education classroom. Nixon is a puzzle that the Central IEP Board is looking to solve. He's academically bright, at level or above level, in most subjects. It's his social and behavioral developmental needs that are presenting the larger issues. And his school haven't the proper resources to help him. 

    Unfortunately, none of the public schools in our county can't meet Nixon's particular needs. 

    Which leads us into new and further uncharted waters: The Central IEP Board take cases like Nixon and with the help of the school, parents, and other professionals they find a private or charter school that is a good fit and will meet the needs of the student and work to place them there, with no expense to the family. The home school (in this case Nixon's elementary school) funds the tuition, and if the child meets the requirements will be able to return to the school when ready.

    There's a process, much like college applications, as it was explained to me. The Board will interview Nixon, the school counselor and OT who has worked with him, myself (and Mac if he's back) and his teacher. I believe Nixon's principal will also speak to the board, at her own request. 

    While I can't say I feel overjoyed by this newest development. I can say it will most likely result in an educational setup that is in Nixon's best interest, and that is all I want. 

     This whole situation: Nixon's diagnosis, his behavioral issues, his school's view on his actions, how he feels about his school's views and more, it wears on me. Facing that meeting alone, knowing there are adults in that room who can't (and don't try to) understand Nixon and how his mind works, instead constantly insisting his actions are planned and of a conscious nature, caused me a deep moment of anxiety. I spent nearly 10 minutes simply explaining "scripting" and Nixon as a result of Mac and I creating scripts for Nixon. 

   *Scripting is common in high-functioning autistic children and adults. They develop scenes or scripts to follow for events, and do so. Nixon's well-mannered because of his scripting. He also, when he calms down after a meltdown, apologizes. But he's not apologizing and admitting he was aware of his actions. He's apologizing as a reaction to the faces of those around him and because of the script he has in his head that he follows. Unfortunately, most people don't know about scripting and they just assume Nixon is accepting responsibility for his actions by apologizing. And I saw my explanation fall on some deaf ears in yesterdays meeting. I also had 2 administrators ask me some questions after the meeting, about Nixon and his "scripts" which made me realize my short advocating speech wasn't totally pointless.*

   I don't know what the rest of the school year will look like. I know there are members of the school administration who would like to keep Nixon out of the school effective immediately. But that's not really possible because it came to light that the school was implementing his IEP plan out of convenience to their schedule instead of the requirements of it to his needs. And that came out in front of the Central IEP Board representative. Had the school been doing everything to the letter in regards to his IEP and nothing was working, then yes, perhaps they could have expelled him. However, since that's not the case they cannot do that at this time.
    Thankfully, I'm the parent that doesn't know shut up and get with the program! Instead, I spoke up, I made sure I spoke up and I kept speaking! I didn't make friends, but I have a few supporters in our corner and they're on the county's payroll not the school's. They're the ones who can help Nixon the most and help do what's best for him. 

Last week was not good

   If you noticed, I hadn't posted last week. Last week was hard, for several different reasons. I thought I was dying (allergies), Nixon had a really bad week at school and I had a breaking point which saw me crying in my car.
   And Nixon was suspended for a day.
   So yeah, a lot going on and I was just drained.

   Tuesday afternoon Nixon had a follow-up appointment with a childhood behaviorist through our insurance company, so I had to pick him up from school early. I was told, by his aide, that he had a very defiant day. He was blowing raspberries in her face at a very close proximity and wouldn't stop when asked, he was having a very hard time deescalating his behavior even when moving to a different setting or room, he was screeching in the halls (he has an ear-splitting level when he screeches, and it disturbs all the classrooms in the area), he was refusing to do work and spent nearly an hour out of the classroom.
   On the drive to the doctor's office, I received a call from the school. Since I was driving I let it go to voicemail and checked it once we parked. The principal called to let me know, that given Nixon's behavior for the day, she had no choice but to suspend him out of school and asked me to call her back. I, of course, did and this resulted in the oh-so fun game of phone tag.
   We went to Nixon's appointment. This particular doctor feels Nixon's issue is not ASD related, but simply ADHD. I went Tuesday armed with copies of the test results from the school. She looked them over, read them and still said "I still feel it's only ADHD. Now, about medications....." Thankfully, she listened to me, and did grant a referral to get a second opinion. I'm waiting for a date for that appointment.

   Now the suspension. After the principal and I finally were able to speak to each other, it became clear I was supposed to feel as though this was her only choice. This was all due to the behaviors I've mentioned above, as explained to me by the aide.
   However, the principal said this could be handled as an in-school suspension, but since he'd be with his aide an the special education teacher all day (the 2 adults he wouldn't calm down or listen too that day), she felt it wasn't a good option and that due to the screeching and all the time spent out of class, it' best if he were suspended out of school the next day so that he can reflect on his behavior and hopefully come back with a renewed outlook.
   I....didn't say much of anything. What do you say when it basically sounds like every person at the school needs "a break" from your child? Because to me, that's what I was hearing. He hadn't hurt anyone. He hadn't broken any rules. But he was being suspended because an in-school suspension would mean he'd be with 2 adults who hadn't handled him very well that day, for an entire day in a very small classroom. But I was already raw and emotionally broken from the doctor trying to just throw medications at Nixon, as if that's going to make him better, and now I'm hearing that the school basically needs a break from him for a day and this is their only solution.
    I hang up and I turn to Nixon, in the backseat of my car, and I tell him the principal has decided not to invite him to school the next day and Nixon says "Good. I don't want to go anyway."
    And my heart breaks. My eyes fill with tears and I sob! I cry the whole way home. I cry at home. Nixon asks me if I'm done crying. I tell him "I don't know", he says "Can you tell me when you're done because I might be hungry but I can't be around you when you're sad and crying", even though he brings me his teddy bear.

   Eventually, I calmed down. And then I get pissed! His teacher, his principal...I warned them all at the IEP meeting in January that it was going to get ugly when Mac left for his training. I told them there'd likely be some behavioral regressions. And I heard. "Oh that's fine, we'll be here for him.". Well, no the (pardon this) fuck you aren't! You're acting like you had no idea this was coming! I gave you 2 months to prepare.
   I hate how, every conversation I have with this principal, I'm made to feel like I'm sending a monster to school and she's a saint for doing as much as she's doing for him. Guess what?! It's you're damned job! I've been honest, up-front, available and beyond accommodating when it comes to Nixon and his issues. I'm not blind or in denial. I know hes not an ideal student, but I'm sick of getting guilted by this person because of my child's limitations. There is an IEP in place for a reason.
    You know, for all the "we tried literally, everything in our wheel house"talk about Tuesday's issues with Nixon, there was not one call to me. If he was so out-of-control, did not one person think to call me? I've been called to come for petty crap, like make sure he doesn't "ruin" a school event, no thought an epic meltdown with no end in sight was worthy of a call? At what point does one "throw in the towel" and call the big gun in?

    This week is a new week. We've got all week this week and one day next week before Nixon's Spring Break. He wants to do the Aquarium one day. I'll happily do that with him, because the joy on his face makes everything about driving into Baltimore worthwhile.

Last week was practically a total wash, as far as school went

    Nixon went to school 2 days last week. He had 3 snow days. Unfortunately, one of his snow days was also the day of his IEP reevaluation meeting. It will have to be rescheduled, of course. Surprisingly enough, that didn't turn out to be a bad thing, it having to be rescheduled, as I received a letter from the school on Saturday regarding an incident with Nixon and another student which resulted in Nixon being sent to the Principal's office. I have more than a few issues about this letter, one of the more irrelevant issue being that this incident took place on February 13th!
    I asked Nixon about it. According to the letter, Nixon one day layed across another student on the carpet in the classroom and the next day stepped on the same student after being instructed to stay away from said student. Nixon admitted to doing both those things. He said he did it because "(name)  was talking to me while I was doing my morning work. I didn't want them to talk to me because I was trying to get all my work done but they wouldn't stop talking." I asked him, what no doubt I will be asked as it will be seen as an "obvious" question "Did you ask him not to talk to you?". Now, this is where it's going to be really hard for me to get the IEP team to see Nixon's way of thinking, Nixon said he didn't because "I was focusing so hard on ignoring all the noises and just doing my work it would have hurt my mouth to make words."
   As his mom, and because I'm working really hard to understand how he sees things and how he thinks, I can understand what he means. But to most people who don't deal with him in such an intimate manner, they're going to have no way of comprehending how hard Nixon is concentrating in that classroom to get that work done in the morning.
    And how proud am I that he is learning to use his words to tell me things like this?!?! Even if he can't tell his teachers or his aide, if he can tell me I can go in and I can be his voice!

   But trust me, they will when Mama Bear Rea roars for her cub! My child should not be in a classroom feeling so overwhelmed that he tells me he physically can not make words to tell a child, or even ask a child to leave him alone to get his work done. This is specifically why I pushed so hard for an hour out of class every day!


    On top of all the other IEP nonsense, Nixon's acting out in class (again). Yesterday I noticed a note that said he was trying to climb into the cubby's the classroom has for each student. To me, that sounds like Nixon is seeking a quiet place to get away in.
    We had an awful morning yesterday. While taking the college student I drive during the week to her internship, my windshield got hit by debris from a passing garbage truck and actually hit with enough force to shatter a small hole through it. Not very big, and thankfully no one was hurt, but it was quite jarring and Nixon wasn't really sure how to deal with it all. Was it broken? Did the car break? Where did the thing go? Will water get into my car? Can he tell Daddy about it? Is Nixon okay? (He kept asking that, about himself in the third person.)
    All this was after I told him I'd booked us a flight to visit his Nana in Miami next month. He had a lot going on in his little brain yesterday morning. I was overwhelmed but I'm used to it.

   Finally, Nixon asked to try my dinner tonight. That's odd enough. But tonight I had a grilled cheese sandwich, which before tonight Nixon has refused to touch in the past. Tonight he tried it, liked it and asked for more. He eventually ate a quarter of my sandwich.
   He's never eaten it in the past because of the feeling of the pan-toasted bread. He's fine with toaster made toast. I've offered to make grilled cheese for dinner tomorrow night, we'll see if he eats it again or if this was a one-time deal.

Catching up on behavior charts.....

   If you read my previous post, you might understand why I've fallen behind on the daily posts. I'm struggling to catch up and this week I had an appointment with my doctor.

   I could bore you with a bunch of pictures of all the past behavior charts, but instead I'll just fill in the blanks.
   Nixon is still struggling in school. He's still having time outside of class. He's still having meltdowns in class and is having a tough time fully recovering and moving on. He starts his days on such a good foot, leaves me car ready for school and then at the end of the day his chart shows he's struggled a lot.

    But then, a small almost innocent question from the teacher's aide, and the pieces started falling into place.
    "How long since Miss S left?"
    Miss S is a close family friend, who moved away in February. Nixon adored her and she adores him.
    And Nixon's behavioral regression began about the time she left. I never put the pieces together and Nixon doesn't know how to verbalize his emotions. He feels so much and doesn't always act appropriately based on those emotions.

    I felt so angry and so heartbroken at the same time, because I never thought the regression would have such an easy/simple explanation.
    I talked to Mac about it. I brainstormed. I had to try to help ease his heartache and still get him back on track in school.
    In the end I reached out to S and asked her for help. With her help, Nixon has a very special stuffed animal on the way with a very special recorded message just for him from S. I don't know if it will fix things, but it's an attempt to bandaid his heart.

    On top of Nixon dealing with Miss S moving away, Mac leaves for 12 weeks and a few days of training tomorrow. He was supposed to leave today, in fact we took him to the airport and said our "see you later" at the gate, only to have to go back and pick him up 4 hours later due to a flight cancellation. He is leaving (for real!) tomorrow afternoon. Mac also made a special bear for Nixon, with a special message, that he gave him before we left him.

Capt Bearmerica, Nixon and Mac

    **I'll be honest...I'm pretty jealous of Nixon's bear. It's an awesome gift and I sort of wish I had one for myself**


   Nixon had a 2 hour delay one day last week, a snow day and also a doctor's appointment for his asthma. He grew another .75 inch in a month! His asthma is under control and he won't be seen again for it until June.
   I have an IEP reevaluation meeting Wednesday morning.

A full day of school?!? I'm as shocked as you are....

    After snow days, delayed starts and holidays, Nixon finally had a full day of school. He was excited about it too!

    Not sure what happened last week, but today showed he's put it behind him!

   Even after spending 40 minutes outside of the classroom, Nixon managed 8 smileys! Considering last week he didn't have a collective total of 8 smileys, we're pretty happy with this.

    He also came home with a "love note" for me.

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    In other news, apparently next Wednesday (Feb 25) is our IEP evaluation day. I got 2 phone calls trying to schedule the meeting. I'm not sure why, but it was assumed I'd agree to any time given for this meeting. Unfortunately, I have plans and had to inform them I'd be unavailable for the requested time. I'm expecting a call tomorrow with a scheduled time. 

   It'll be nice to get to discuss this with the IEP team.  

This week is rough to say the least

   Tuesday was a snow day (without the snow). It was icy and the county originally delayed for 2-hours. Conditions didn't improve by much and the county made the cancellation call before 6:30am. Honestly, it was the first snow day this year and was a good call. Lots of accidents on the roads.

   Wednesday was a scheduled early dismissal day.

   Nixon did not have a good day. He hasn't had a day that bad in a couple months. I found out that the kindergarten classes are having to do some mandatory computer testing. Unfortunately this is going to last a couple weeks and that means Nixon doesn't get any of his usual screen time. He wasn't given any notice that this was happening and if I know my kid at all, this is what is causing his behaviors leading to his time out of class.
 
    I'm struggling with how to approach the school about this. Yes, the testing is required for all students and yes, they have a limited number of computers but Nixon's IEP requires technological alternatives to written activities in addition to it being an activity he earns with good choices/behaviors.

    Today was his classroom Valentine's Day party. I knew it was going to be tough on him and, unfortunately, I was not able to attend this one. While he had a good day, compared to earlier this week, I can't explain his "hanging on another student" episode. He did spend 70 minutes out of class but it was before he wasn't able to handle the chaos of the party (a lot of parents signed up to attend and there were 3 different activities going on during the party).

    I've offered him some supplement computer time at home. I have accounts set up for him at home on the sites he uses at school. He seemed happy with that and I really don't have much more to offer him. 

    We have a 2-hour delay tomorrow morning, there's an extremely cold bit of air coming resulting in subzero wind chills.  

It's Monday

   Nixon had an okay day. It was actually not bad until he got home.

   School was okay. Seven smiles. Twenty minutes out of class, lost 4 minutes of his 30 minutes of tablet time because it's February and we've upped it to one minute lost for every 5 minutes out of class. He's still struggling with his writing assignments, which means I'm making a phone call tomorrow to find out where the IEP implementation stands.
   He received an IEP progress report, they're required quarterly for all students with IEPs and have zero reflection of the IEP being in place.
    I don't know what's going on with him and lunchtime but he only ate a small amount of his lunch and he spent time out of the cafeteria during lunch.

   When we came home, Nixon was calmly and quietly sitting on the sofa when my cat darted into the room, tired jumping onto the back of the sofa and failed. She fell onto Nixon, scratching his side.
    Nixon has a strong reaction to immediate and unexpected pain. As soon as Arwen fell on him and he felt her feet on him he started shrieking. It took me over 5 minutes to get him to stop crying and to breath. Lots of sobbing and teeth chattering from him.
    This isn't uncommon and he spent most of the night getting equally as upset about the scratch. Especially at bath time. It took a while to get him totally calm but he went to bed and forgot about the scratch.

I'm not looking forward to removing that bandaid in the morning.....

It's another late post, but with some relevant weekend news

   Nixon's usual aide was out of school on Friday. Thankfully, she not only let him know on Thursday but also let me know at pickup Thursday so I could remind Nixon and prepare him for Friday. Even a small change in routine, like a familiar face not being present for a day, can be enough to send Nixon into an emotional tailspin.
   He was prepared and he did just fine.
   The only part that worried me was, when at pickup Friday, the special education teacher told me he hadn't eaten lunch or snacks. He was complaining his tummy hurt, but had no fever. He went to the nurse but nothing came of that.

    Still:

   I'm not sure what's going on at school, but Nixon says he's still being forced to write. I'm hoping it's not as bad as he feels it is, because he's saying he won't go to school because he doesn't want to write. This avoidance of writing is in his IEP and the school agreed to provide alternative methods to the writing part of his classroom work. 

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    In other news, we had one of the 2 birthday parties we've got happening this week, today. I had expected this one to be rough. I thought I was prepared for it. And for the most part I was.
    It was an animal adventure. There were live animals and an animal presentation. Nixon was okay, at first. But when the talking continued and he didn't get to see the animals right away, he got frustrated. When one part was interactive, kids were turning over coconuts, and Nixon didn't get a turn (right away), he lost it. Mac and I took him to a quiet corner and let him cry. It took about 10 minutes until he finally pulled himself together.
    He came over a couple more times, for hugs and quiet. In the end he did have a good time. He pet a baby alligator, a toad and even helped hold a 65 pound albino boa constrictor. When we got home, though, he was wiped. He slept for almost 2 hours until I had to wake him up for dinner. 

    I promised Nixon, that if he ever gets invited to a party at this place again, we'd decline. He liked that idea because he said it was too much for him. And for him to understand and acknowledge it's too much, says something about the environment of the party. And I'm not saying there was anything done wrong by the staff or the hosts, it was a lovely party. It just isn't an environment Nixon can navigate and handle successfully at this point in time. 

      

Even when I have a mini-Mom fail moment, Nixon does okay

    Today's Tuesday, and it was a full day of school! Tuesday's also library day for Nixon's class. Normally I pack his book in his backpack the night before. I forgot last night. Normally, Nixon does this little OCD (obsessive compulsion disorder) check list every morning. He stands by the door and it goes something like this:
"Lunch paddle? Check. Backpack? Check. Sneakers? Check" and since the winter has started he'll sometimes add gloves and hat.
    The moral is we both forgot about his book. I remembered a couple hours later and immediately left to bring it to him at school. He had a good library day and I fixed my "mom fail" moment.

   I'm very happy to see he was offered some alternative computer learning during treasure time. That's always been an issue for Nixon. It's a big block of time with different learning stations, a lot of chaos and not very much learning gets done by Nixon. The alternative learning options are in his IEP.
   
   Nixon had a great day today. 9/10 smiles, no time out of class and a short tantrum, after treasure time which really isn't totally unexpected. He turned the whole day around and for that I'm happy.
   

What a Monday.....

   I'm just going to put this here:

   It pretty much speaks for itself!
   Due to weather predictions of icy road conditions, school was delayed 2 hours this morning. Nixon and I had a calm and low-key morning before we left for school.

   No time out of class and all smiley faces?! We're happy parents over here.
  

   I also sent Nixon to school with a calm down glitter jar, for him to keep at school. I asked him this afternoon if he used it today. He said "I didn't need to Mom. I never got upset!". I was not expecting that response.
   His aide said to me "These short days are wonderful for him". She's not wrong. 

   This week, if we ever have another full-day of school, they should start implementing the IEP. The first part will be Nixon's one hour in a smaller class setting for instructional learning. 

    

...and then there's his teacher (UPDATE at the bottom)

    Nixon's teacher has a "vibe" about him. She's made comments before, along the lines of him "getting his way" at home or him "not used to sharing attention", and there was a "an only child, mmmhmm" when we first met. 

    I've grit my teeth and ignored them. I smiled when she said to to me "He's a totally different kid around you", on a day I was called in to help Nixon for a kindergarten-wide event. I don't know how to respond to that. Aren't most kids different around their parents? Maybe not always for the best, but most kids behave differently when their parents are around. 

    Today, while discussing Nixon's school behavior with the IEP board members his teacher made a comment about Nixon not acting out at home like at school. I told the board, it's difficult to hear Nixon being described as he's been since school started because it felt as though it was someone else's child. It felt as though Nixon had a "Dr Jeckyl and Mr Hyde" situation, except that I'd never seen the bad personality. His teacher said something along the lines of  Nixon "gets to do what he wants at home". It's not the first time she's made a comment like this, but I'm damned sure making sure it will be the last time I don't respond. 

   Instead of going off on her in front of the group and taking the focus off of Nixon's needs, I decided to write an email when I got home. I didn't send it right away, I let it sit while I took Nixon to a play group.

    Here's what I ultimately sent:

Dear Mrs C, 

    First, let me say I realize Nixon is not an "ideal" student. And I appreciate the patience you've shown with him and techniques you've implemented in the classroom to accommodate him.

   However, I was offended by a comment you made in today's meeting and rather than addressing it in the group setting, I felt I'd come to you one-on-one about it.
    I'm not sure how or why you've got the impression that Nixon "gets his way" at home, but that was the comment you made in the meeting today and I feel I have to defend not only myself but my family. 

    Your exact comment was along the lines of "...and he gets his way" regarding Nixon at home. Yes, Nixon is an only child but he does not run things. Have I made accommodations for him? Of course, but you as a mother yourself can't say you don't do the same for your own children.

    If I was a parent that allowed my child to "run things", I wouldn't be reaching out to all resources to get him help. I wouldn't be making doctors appointments and setting up meetings at the school for testing. I wouldn't even admit my child had issues. But I do and have accepted that Nixon is "that kid" for you this school year. 

    What hurts me, as a mother, is that I feel you've unfairly judged Nixon (and my family as a whole) because he is an only child. This is not the first time I've gotten that impression from you, but I'd like it to be the last. Nixon is a child with multiple disabilities but he is far from spoiled.

    I do realize this message maybe seen as confrontational and I apologize for that. But I felt it needed to be addressed and I'd prefer not to do it in a group setting, as I previously mentioned. 

Thank you for your time.
Regards,
(me)

   We'll see if she responds. I've sent emails before and it's hit or miss for response times. I sent one in late October....I'm still waiting for a response. 

   I just couldn't ignore the comments anymore. I needed to say something and I had to be able to control my temper. Email was the perfect solution. 


Update:
   There was a (surprising) response in m inbox this morning.

Mrs. B,

I am so glad that you reached out to me to share your thoughts.  My intent was never to judge or offend you or your family.  In no way did I mean to question your parenting skills or to imply that Nixon is a spoiled child.  When I shared that Nixon gets to do what he wants at  home, I was just trying to point out the difference between a home setting and a scheduled, structured school setting with high demands.

I do realize how much you work with and for Nixon and really appreciate your involvement and support.  I am glad to be part of the team that is helping him.  He is truly a sweet child, and I do enjoy having him in my class.

Thank you,

(teacher)

IEP(C) meeting today....and I'll explain what that means.

   Today began with a 2-hour delayed start to the school day.  Nixon woke up and came into my bedroom asking me if we were going to be late. I briefly told him we didn't have to leave for a couple more hours because of the weather. I got some more sleep, and also almost smothered by Nixon who insists on kissing me in my sleep.
    We almost had another meltdown over snowball fights and outdoor recess but I defused it by reminding Nixon how cold and wet snow was. He'd asked for a snowball fight before school but instead opted for fake snowball fight. He grabbed a giant cottonball-like ball and threw it at me. Indoor snowball fight and we left for school.

    Our IEP meeting was scheduled for 1pm. Mac left work to attend this meeting. We finally went back to the meeting room just before 1:30pm.  We went over attendance, a bunch of faces and names I'm still learning.
    Our IEP started with a meeting in October (IEP(A)) to agree to testing and find out what kind of tests we were agreeing too, in December before the break we had a results meeting (IEP(B)) and today was IEP(C) the initial plan details.
   The plan will include: 1 hour-a-day outside of the classroom for instruction in a smaller setting, it'll include 3 hours in classroom learning with scheduled breaks and alternative (technological) learning methods,  he'll get time with the school psychologist for evaluations twice every quarter (this won't be the only time he sees her, but the evals are twice a quarter), he'll get an "adult aide" exclusively for him daily (this is going to be a change, since the current teacher's aide isn't qualified to be that assistant, so the school is searching for one now and the current aide will go back to being a classroom aide for 2 kindergarten classes. I can't argue this because there are requirements in place for IEP students and aides that need to be met).  There will also be an Occupational Therapist offering coping techniques to Nixon. So far these include a body sock, wiggle chair and a foam pencil gripper.
    Overall the meeting went well. I did push for the starting point of time out of his current classroom to be 1-hour a day not what was proposed 30 minutes a day. That was really all I was fighting for and they agreed. We'll have a review meeting in 45 days.

   And onto Nixon's Behavior Chart:

 
   Yep, that's 7 smileys and ZERO time out of class today! Yay!! He had a great day and I was so happy. He was even happier because he got his full half hour on his tablet!

In the beginning

   First an introduction:

   My name is Rea. I'm a mother to one awesome little boy, Nixon, he's 6-years old. I'm married to Mac, who retired from the Navy last June.

   Our life kind of changed in 2014. See, Nixon started Kindergarten and the issues that I'd been bringing up to our doctors since he was around 2, suddenly became larger and more urgent. Nixon was not adjusting to school, at all. He was the disruptive kid in class. His teacher called me on the first "preview" day of school. (It was a full school day, but only 1/3rd of the students attended. It was meant to give the kindergarten students an idea of what to expect when school started.) His teacher called to tell me Nixon sat on a table. And screamed at her. "NOOOOOOOOO!" when she changed the activity. I apologized and assured her I'd talk to him about it.
   When school started, the phone calls got more frequent. It was never anything like "he hurt a student" or "he's swearing", that was my consolation. But the calls were almost daily. I requested a meeting the first week of school. I got a meeting request a month later. After Nixon was suspended for a day. He had a giant meltdown and while no one was hurt, his actions did lead to the classroom being emptied of all students. He was throwing objects, not at anyone, but throwing them none-the-less.
   When the meeting happened, Mac and I both went to it. I went armed with an appointment with our doctor for a referral evaluation. A referral to have Nixon evaluated because I was coming to believe Nixon was on the autism spectrum. The meeting went well, except for his teacher who seemed to believe Nixon was an overly indulged only child.  

   The school requested to do their own tests, so that they can better help Nixon on an individual level.

    After all was said and done, and the test results reveled, our life changed. Nixon was found to be on the autism spectrum disorder (ASD), as well as have attention deficit hyperactivity disorder (ADHD) and also sensory processing disorder (SPD). With these diagnoses, the school started moving forward to develop an individualized education program (IEP).

   This blog is going to be an outlet for me, a progress tracking method of Nixon's behavior at school and a way to show life doesn't stop when the acronyms begin. It's a struggle, seeing you child defined by acronyms and it'd be easy to let those define him, but those acronyms are not all he is.