Wednesday, May 27, 2015

Official medical diagnosis means more acronyms entering our lives

   Yesterday was Nixon's big appointment for a second opinion by our insurance company. This has been a long time coming and I really pushed to get this appointment. The original diagnosis was only ADHD by our insurance company, which was met with a quick push for medication.
   This appointment was a meeting with a board of 6 people who were going to evaluate Nixon's behaviors/speech/motor skills/school reports plus his GARS and other questionnaires I was asked to complete and bring to the appointment.

    We arrived 30 minutes later, in spite of leaving more than 90 minutes before our scheduled appointment time. Traffic in our area sucks! There were at least 3 different traffic accidents and backups that led to our late arrival. Thankfully, I called and gave the office a head's up so they were aware and prepared when we arrived. Nixon was pretty good even when he got bored, we did some math questions in the car.
    Without going into the long almost 2 hours of the evaluation and results process, the gist is: these medical professionals agreed with the school's findings that Nixon does have ASD/ADHD and SPD. He is highly hyper active and it's making any other disability hard to address. At one point, in a 2 minute period, Nixon got up/fidgeted/changed the subject over 15 times. While being asked questions about emotions, he was asked if he's ever sad. Nixon said "Well, sometimes I'm sad when no one plays with me at center time" (Center time is learning-based play centers in his classroom, he's never told me before that he's sometimes left without a partner or team during center time. That was difficult to hear and kind of put everything in perspective for me.)
   With the official medical diagnosis Nixon is now eligible for: OT (occupational therapy), ST (speech therapy) and ABA (applied behavioral analysis), all which will be covered by our insurance company! Plus we have a doctor's recommendation for a choice in schools when we meet with the County Central IEP Board in a couple weeks.

   You'd think that would be the end of the "good news" but it's not.
    This afternoon, Mac and I had a meeting with the Vice Principal regarding the recess incident from last week. I had requested to view video footage from the playground area, as the entire situation felt odd.
   Turns out, my gut feeling wasn't wrong.
   Mac asked to see a few minutes before the actual incident, which was cued up and didn't give any possible clue for Nixon's actions. As we watched the grainy, jumpy, tiny figures on the screen,  Mac and I started noticing things. The biggest one was Nixon was giving off non-verbal signals to the other child that he wanted to be left alone and the other child didn't respect those signals. Nixon put his arm out, straight at the child and the boy came at him. Nixon then dropped to the ground and basically turtled up (for lack of a better word),the boy then continued to stand over Nixon a few seconds before walking away. There's some discrepancy because to me it looked like Nixon may have been kicked by the boy, but neither Mac nor the Vice Principal could seem to see what I was looking at and said it may have been the boy turning to walk away. Either way, the next frame Nixon got up and went after the boy. The rest is history.
    After viewing this a few more times to be sure we all saw the same thing, the Vice Principal asked us to explain the non-verbal body language Mac and I were seeing Nixon displaying. She said she was going to show the other boy's mother (a teacher at the school) the video and explain the body language as we had explained to her, so she knows Nixon did not attack her son unprovoked. It's nice, but Mac's offer to sit down and speak with the other parent as well (prior to learning she was a teacher at the school) was rebuffed as "unnecessary" because this teacher "has worked with disabled children before and I'm sure she'll understand Nixon's particular case when I explain the video as you have", mind you all this took place with 3 adults less than 5 feet away and not one of them was aware of Nixon's nonverbal signals making me wonder how many of his other "major incidents" with other students had situations like this happening.

    I'm glad he wasn't suspended, because I'd have been more pissed off than I already was leaving that meeting room today. It seems, and thankfully today Mac was there to actually witness the bias, the school is so quick to paint Nixon as this bad, out-of-control child that no one even thinks to check to see if there was a valid reason for his actions. If I hadn't have followed my gut and asked to view the footage and Mac hadn't have asked to view more than the 15 seconds that was cued up for us, we wouldn't have the answers we have tonight.

Tuesday, May 19, 2015

I have trust issues and I'm starting to let them show

   Today was Nixon's second day of his new CAHT plan.
   Yesterday he was home with me and he completed 16 pages of math problems, we read 5 pages of an insect book, he wrote me a love note and he did 4 pages of a writing workbook. He went to school and asked for the computer within 5 minutes of arriving. He was given computer time to discourage a meltdown he'd started while walking to his classroom. (He asked for computer time at home with me and was told "no". He pouted for all of 10 seconds then asked to look at his workbooks again. He never asked for computer time again.) He was given an addition 30 minutes on the computer during what's normally known as "center time", which is when he'd do literacy/science/math work. I was told at pick-up time, that he'd get 15 minutes of computer time when he arrived to help him transition from home to school and then he'd join his classmates for the specials for the day.

    This morning we met with the woman who will be in charge of Nixon's home teaching hours. She's very nice and was immediately in-tune with Nixon and handling him. Of course there was no school work involved and I learned she had no explanation for his sudden CAHT situation from the school, but she's experienced with children who have ASD and ADHD and was even aware of what SPD is, which I've come to learn most people have no clue about. Most importantly, she was shocked that the school was giving Nixon so much computer time daily. She's going to call the school and inquire about for "my own educational requirement goals and standards", which she told me was really because she wanted to hear for herself if they actually admit to him being on the computer for so long or if they'd dismiss it. (I showed her his daily behavior reports that actually showed the time lengths written out by his aide).
    For school work, Nixon did another 7 pages of math work, more handwriting work, he wrote Mac a note and we read more of his insect book. He had 25 minutes of free play (Lego's) and then lunch before going to school.

    A little after 2pm my cell rang. It was the Special Education teacher and the Principal (I'm assuming she was in the room, though she never spoke she was spoken to.
     Nixon had gotten a referral for a recess incident. I was being called because it was seen as a "serious offense". Nixon had been "caught" with his hands around the throat of another student while at recess. When he was removed from recess for the act, he was upset and was running in the classroom and kicking chairs. I was called to (a) be informed of the referral and (b) given a choice to come and stay with him for the remainder of the day or pick him up immediately.
    I went and stayed with him for the rest of the day.

  While there I spoke to the aide and Special Ed teacher. No adult witnessed the event. While the other child does have marks on him, he apparently only named Nixon after other children started yelling Nixon's name. What pisses me off the most is I heard that this is possibly the second time an incident like this happened with Nixon and this child. But I never head about the first time, before today, because no one but another Kindergarten teacher (not Nixon's classroom teacher) heard about it...from the boy's mother...possibly months ago. But because of that, there's a "deeper investigation" being done.
   I was asked how I wanted to address recess. How do I want to address recess?!? It went on, do I feel Nixon should be included in the regular recess with the rest of his class or would he be better off in an individualized recess setting. Did he kill someone?! Did he shank a bitch in the yard? No! He placed hands on a boy inappropriately, yes, but he didn't kill anyone. Yet, I feel like his action's being criminalized.
   I replied (without the above snarkiness), that unless this becomes a pattern of behavior, it should be moved past and monitored. He shouldn't be removed from the rest of his class, as the reason he's coming to school in the afternoons is to socialize with his classmates.

    I called Mac tonight and we talked about all this. I also asked Nixon about this again tonight. Nixon has a "friend" named Brain-Brain. Brain-Brain is a computer who lives in Nixon's brain and he knows everything that Nixon does. Nixon started talking about Brain-Brain and I asked Nixon if Brain-Brain was there during recess. He said Brain-Brain was and I asked him if Brain-Brain wanted to tell me what happened. Nixon took a few seconds and said "Brain-Brain's recovering the data, Mom". Then he said "Nixon won the game by hitting a long, far ball. Nixon got excited and celebrated with [boy] by hugging his neck."
    This isn't really unheard of, as Nixon gets overly excited and hits himself in the face and head. The boys were playing invisible baseball. Nixon was the batter and the other child was the pitcher. The problem is, will the school actually believe Nixon and will his intentions even be considered? I'm sending a letter to school tomorrow requesting to view the video footage of the recess yard from the time of the incident. I was told since there's no discrepancies there isn't a need to have it pulled, but I'd like it pulled and viewed for my own piece of mind, and as his mother I have a right to request it.

   I'm drained because I know there need to be consequences, regardless of intent. But I'd told Mac my biggest concern about agreeing to CAHT was that somehow it'd turn into a full-time thing against my wishes, and damned if it don't feel like this is an attempt at exactly that!

**I did ask Nixon if he saw any new gray hairs in my hair. He said "Ummm....yeah, there's a bunch right here!". I told him "That's great. We're naming that bunch "Tuesdays", because they all appeared today." He laughed and said I'm funny.**

Friday, May 15, 2015

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 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.

Tuesday, May 5, 2015

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.