Learning to teach him how he learns, not how I know things to be.

   Raising a child on the Autism Spectrum is a challenge. Mac and I remind each other frequently that, although Nixon has autism, he does have a high-functioning form of it and we consider ourselves to be "lucky" in that aspect. But we still have struggles to help Nixon navigate in social settings and to help prepare him for the future and what it may hold for him.
    I thank the stars above for Nixon's affectionate nature, his overly verbal ways and even the way he tattles on himself. He makes me pause and look at the world from different angles and forces me to answer questions I'd rather he didn't ask. For every challenge our family faces because of Nixon's diagnosis, we grow and expand our world twice by overcoming those challenges together.

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   Last week Nixon and I had a mommy-and-me date. We have one-on-one dates with Nixon on Mac's weekends off. Nixon gets to choose who he goes out with and the chosen parent tries to plan a fun date, not always easy given Nixon's got a pretty limited number of places he feels comfortable in on a normal day but add a weekend crowd and it's a tightrope act. I thought this would be a good way for Mac and I to each work on our relationship with Nixon and learning who he is while he learns who we are, outside of being just "Mom" and "Dad".
    We went to Target, to look at all the new Star Wars products, clothes and toys. Nixon was having a blast, until we walked by the game section. I know why stores always have demonstration games set up, but I hate that stores always have demo games set up! Nixon loves this lately, and if he were with Mac they'd probably have more fun together, but he was with me and I am not a video game person. Instead of forcing him to walk away, and knowing it had the potential to result in a full-on meltdown, I decided to explain the point of a date. I took Nixon to a quiet corner of the store, so I'd have his attention, and explained that even though he was only on a date with me this could be an experience he'd remember when he was older and ready to start dating someone he liked. (Of course, he says "I like you, Mommy") I go on to say, "dating is about sharing what you like with the person you like and also the person you like sharing what they like with you. It's a about compromise. If you pick dinner, maybe your date chooses the movie you see. And sometimes it means NOT doing what you like because maybe the person you're dating doesn't like that thing, like video games, and that's okay. You'll just learn to do those things you like when you're not on a date."
     After our talk, Nixon agreed to 3 minutes at the game demo station and then we'd leave the game area for good. I was expecting a little argument when his time was up, but instead, he put the controller down, grabbed my hand and told me it's time for our date.

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      Nixon's been working very hard at earning Dojo points in his classroom, which he gets for different positive classroom behaviors. It's a classroom tool the teacher uses to track the children's behaviors throughout the day and on Friday they can earn rewards based on the total number of points earned for the week. 

      Nixon's magic number this week was 50 points, if he earned 50 points, he'd be able to change his Dojo avatar. Last week he earned 47, and wasn't upset or disappointed, instead he decided he was "going to work super hard and get ALL 50 POINTS this week!". On Thursday he went to school with 24 points for the week. He came home and told us "I need 4 points tomorrow! I have 46 Dojo points!". Friday comes, and of course on the day I want to check the app the most the whole server has a giant technical fart and I can't even sign in. I was able to see Nixon got his 4 points! 

      Turns out, Nixon earned his 4 points and then spent the rest of the day whining to avoid earning more points. In his very literal-thinking mind, he thought if he earned more than 50 points he'd lose his reward. I tried explaining to him that wasn't the case, but he insisted it was. I asked if he'd feel better if I messaged his teacher and double-checked what he was told about the Dojo rewards. He said that was okay and went to bed. I messaged his teacher, who replied this morning, and it was exactly as I thought. I thanked his teacher and reassured her I'd help Nixon understand the rewards (honestly, no one gets paid enough to spend an afternoon listening to Nixon whine on purpose!) in hopes to avoid the confusion in the future.

     Tonight I tried to explain it to Nixon. I tried explaining the word "minimum" but with no luck. So I changed my tactic. Nixon's understands things better when he has a point of reference. Instead of saying "minimum" I tried "at least", and related it to the rides at the fair he went on once. "In order to ride the ride, you had to be at least as tall as the arrow (and I held my hand out and point down to the top of my hand) on the sign. Did that mean if you were taller than the arrow you couldn't ride the ride?". Nixon thought about it and said "No! Because you went on the rides with me and you were above the sign!". I continued that "at least" simply meant he needed that number or more, in order to earn his reward, no exactly that number and only that number. 

     It's hard sometimes to help explain things to Nixon, especially because I can't always understand why he doesn't understand something. I've learned that if I ask simple questions, Nixon will guide me to what is bothering him and then I can help him solve the problem in a way he understands. He's forcing me to change the way I explain things because the way I know and understand things doesn't work for him. 

     The simple fact that I can help him understand a difficult concept using how he thinks, makes it easier for me to advocate for him and explain his behaviors to his teachers/doctors and other people who come into contact with him. I can also help explain methods that might both help Nixon and the other party reach a mutually beneficial way of accomplishing a task.  

     

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.

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.**

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.