"What's going on with my head? I can't stop thinking about..."

   Here we are, halfway through Nixon's school year. His second report card just came home Friday and, for the most part, he improved or stayed the same across the board. Except reading. He slipped in reading, going from at grade level, to below grade level. We'll be addressing that at home with more reading.


    As any parent knows, life with children is full of struggles. We as parents struggle and our children struggle. But parents of a child with special needs my struggles seem to be two-fold.
    I watch Nixon struggle with social interactions. I've seen him overwhelmed by something as small as a neighbor's dog approaching him. Nixon knows this dog, and in the past has pet and enjoyed this dog's affection, but still gets overwhelmed and freezes in place when the dog simply brushed his side. The issue isn't the dog, but rather the unexpected contact with the dog. It happened so fast, Nixon couldn't process the interaction and continue walking. It hurts to see him so overwhelmed because he thinks he's the problem, when in reality it's just an unfortunately timed series of events that led to his actions, or lack thereof. Thankfully most of our neighbors are kind and understanding of Nixon and dogs, and in situations like this they call their dogs over and Nixon unfreezes and goes into the house without further incidents. And he almost always gushes about how much the dog loves him and how much he loves the dog!

    Nixon struggles with focusing on a task. He'll ask to get on the computer or use his tablet, which with time limits he's allowed daily. The struggle comes when I ask him to wait, patiently, for a few minutes. Sometimes I'm in the middle of something and need to complete it first, other times I ask him to wait simply to work on his patience. (He struggles with it in school as well, and often times causes a disruption when he can't do his desired task right away.) He is improving. A few months ago, asking him to wait would have resulted in a full-on meltdown. Now, when asked to wait, he pouts mostly. Sometimes he will throw a fit but he goes to his room to calm down before it gets any worse.
    He also has a new phrase that he'll repeat endlessly while waiting. "I'm trying so hard but my brain just won't stop thinking about (computer time/tablet time)." He will grab his hair and pull his hair as he says this too. I try to always take time and acknowledge his effort when he vocalizes his mental discomfort.

    I can't end this post on a down note. Nixon has developed his first peer friendship! He's got his first BFF! He is so excited about this friendship and we are as well. Nixon even asked if he could get his BFF a Valentine's Day gift. We bought classroom gifts and Nixon will be able to address the gift bag for his friend, in his own handwriting, which seemed to appease him.
    This friendship is a huge milestone for Nixon. At his preschool and in Kindergarten, he simple played around other children. This year, he's actively playing WITH a child and sometimes even a group of classmates. Nixon and his bff even invented a Time Travel game of tag they play together at recess!

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.  

     

First week of First Grade is in the books!

  Nixon's first day of school was Monday. Last Monday, August 24th. I had done the shopping for supplies, gotten his new backpack, packed his lunch and we'd even had an open house at his new school. He was excited. I was unbelievably anxious. Nixon was also riding a bus this year, something he was super excited about.

   Monday morning came, far too early in my opinion but my coffee maker was preset and brewed when I got up, Nixon was dressed and waiting for breakfast when I opened my eyes. I got up 2 hours before his bus was coming to give us plenty of time to get ready, without feeling rushed. When his bus came, Mac and I walked him to it and said our goodbyes. I did not cry.
   No really, I did not cry! We were all ready to put last year and his former school behind us.

    Nixon's attending another public school but in a special classroom, specifically for children with special needs.

    The first day, after school, the classroom social worker called to say Nixon had a good day. He tried to escape the class to avoid the work, at first, but by the afternoon he was responding to the token reward system the classroom uses. He needed a few reminders to use his indoor voice but otherwise he did very well.

    The rest of the week went much the same. A couple more phone calls, one was regarding an incident with Nixon and another student in the cafeteria Nixon told me about and I wanted to double check if the classroom staff were aware of it, and the second was about Nixon's first trip to the nurse resulting in an ice pack and a quarter-sized bruise on his arm after a bit of roughhousing with a classmate. Both phone calls the social worker informed me Nixon is making wonderful progress, quickly adapting to the routine of the classroom and no longer attempting to avoid his work like he had the first day. He's quickly earning his reward tokens.

   I couldn't have been more relieved! Given the gut-dropping experiences from last year's school phone calls, being called and hearing his doing great is taking some adjusting.

    I'm also navigating another new territory as a parent: bullying and name calling, from the outside in.
    Nixon came home one day and said "there's a bad boy in my class" and proceeded to tell me, the boy was having what sounded like a meltdown after lunch time. Nixon had plenty of these last year, lunch was a constant sensory overload for him. Nixon told me "the mean boy stepped on me and then started to cry and yell".
    As calmly as I could, I reminded Nixon of his actions last year, from being in the cafeteria. I reminded Nixon of the times I had to go to school and help him calm himself because his teachers couldn't. I told him, "Nixon, you weren't being bad last year and your classmate wasn't bad or mean today. His brain just couldn't take anymore but he, maybe, didn't know how to ask for a break. He's not trying to hurt you on purpose, you were just kind of around when he hit his max limit. But he's not any more a bad or mean kid than you are or were last year. He, and you, just kind of sometimes need breaks but don't always get the warnings from your body before your brain needs a break. Just like at home, Dad and I give you space to recover when you've had enough, make sure you respect your classmates space and let them recover, okay?"
     Friday, Nixon says the same boy from earlier in the week, was called a "crybaby" in class by another student. I asked Nixon if he called him that. Nixon said "No, but I did laugh because it's a funny word, he was crying but he's too big to be a baby" (he's such a literal thinker!). We had another talk and I asked him to be kind to all his classmates and to stand up for the ones who need a voice, like the one being called names, because everyone needs a friend.

   
    Overall, his first week of school was pretty darned great! No referrals, no letters home, no trips to the principals office. I call it a success!  

My baby waiting for his bus on the first day of school!

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.**

Shoe shopping with Nixon

   Nixon's day yesterday was a 7 smiley face out of 8 day! The day's schedule wasn't normal because of a planned "crisis" drill. Nixon told me they get books and sit in a quiet room and read the books until they hear a loud voice call for them to come out of they hiding places. It sounded like it's well thought out and not very hectic, which for Nixon to be so calm during is saying a lot!
   He did get to help Miss J with the trash can in the lunch room and he was overjoyed about that!

   Nixon told me yesterday morning before school that his toes were all the way to the front of his sneakers and "I need smaller feet to fit my spider man shoes, Mom". My alternative of buying bigger shoes seemed to appease him and we made plans to go shopping Saturday morning for them.

    This morning we went to Target (he's familiar enough with Target that even on a weekend he can handle the crowds and not get too overwhelmed). We grabbed Starbucks, wondered around aimlessly and eventually made our way to the shoes. Nixon tried on 3 pairs of shoes. He was so happy to find another pair of light-up Spider man Velcro sneakers. I also got him to try on a pair of lace up sneakers and a pair of high-tops. He liked the lace up but refused to even stand up with the high-tops on because "they squeeze my whole foot top-to-bottom all weird", and I just let it go. Sometimes, that's all I can do. I'm not always going to understand how he explains something but it's important that I validate and respect his feelings.
    The shoe thing? That's SPD. Some textures/smells/tastes are very strong and overwhelming to Nixon. Apparently, high tops are now added to the list of things he doesn't like. He actually only agreed to try the sneakers on in the first place because he's never worn a pair of them before. He also really liked a pair of glittery gold slip-on shoes, but didn't want to look for them in his size.

It's slowly happening...some people at school are getting how he thinks!

   A couple days behind, but that seems to be a regular occurrence lately. This week Nixon's struggling in school adjusting to a full schedule again, Mac being gone and it being just the 2 of us at home. Tuesday and Wednesday Nixon spent over an hour out of class during those 2 days. I'm trying everything to get him back on track, but really it's up to him to find his groove at school again.
    He found it today:

    When I picked him up, I was introduced to Ms. J. Nixon was very excited for me to meet her, because tomorrow after he finished his lunch he gets to help her wheel around the trash cans in the cafeteria.
    The Special Education teacher introduced me to her with her name and then also as "Number 11". Apparently, for the first few weeks Nixon knew Ms J he only referred to her as "Number 11" and got very frustrated when no one knew who he was talking about. As the teacher was telling me the story of how everyone was trying to figure out what "11" meant, I noticed the badge Ms J wore with the bold red 11 on it. I let the teacher finish and then explained why Nixon likely identified Ms J as "11".

     This actually isn't really uncommon. It's known as "face blindness". Some people with ASD don't recognize people by faces but rather other identifying features they notice about the person. Nixon likes to identify people by their skin color, hair color or jacket colors, so if he noticed Ms J's badge had a number on it, he'd identify her by the number. Since learning her name he's begun calling her "11, Ms. J".
     After I explained, both the aide (who was also with them to say goodbye to Nixon for the day) and the Special Ed teacher said that made sense, knowing what they do about Nixon. They also said they're going to try to think like him next time he's trying to explain something but getting frustrated, as was the case when the question of "what/who is 11?".


 

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.

I have no explanation only a slight understanding of how his mind works and a plausible conclusion from that

    Nixon had a horrible day today. He spent almost 2 and a half hours out of class today. He was mouthy, defiant and generally uncooperative. On top of all that, he came home with a minor incident report. He didn't hurt anyone, which is the most positive thing I can say about his day.

    I asked him about this, since he hasn't had a day this bad in over 2 months. He said "Well, D (a boy in his class) was talking to me and I didn't want him too. I was on the elevated table doing work". I asked him what D said, expecting it to be some kind of bullying. I was wrong. Nixon said, "D said "Hey Nixon" to me. I told him to leave me alone because I was working, but he kept talking to me".
    To most people, that would seem like a very petty reason to get upset. To Nixon, he was focusing on work and someone was disturbing his concentration. Nixon tried letting D know he was working, but D kept talking to him. At this point, it didn't matter how kind D was being, the sticking point was he was still talking after Nixon expressed a desire to be left alone. Now, Nixon may not have said it in the nicest manner, but he did verbally express himself.
   I don't know if the teacher was made aware of the situation or not. In a class of roughly 20 kids, I'm sure there's almost always someone talking to someone else.

    A day can seriously be ruined for Nixon by something as simple as another child wanting to talk to him while he's working. I can't explain it, because I'm not actually in Nixon's mind, but it makes sense to him.

    The final part of Nixon's day was his tablet time. Because he spent 2 hours and 25 minutes out of class, he had only a minute of his 30 minutes of tablet time today. Rather than use it, he asked to add it to tomorrow's 30 minutes. Tomorrow he has 31 minutes of tablet time to start with.

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    After school, Nixon and I saw a car accident. Well, the aftermath of it. There was a silver car on the shoulder of the road facing on-coming traffic. It looks as it was struck making a turn and stopped there.
   Now that is a logical conclusion based on what I saw.
  Nixon says "You know, Mom. If that person wasn't driving on that side of the road, because that's the way people drive to go home, she could have not had an accident. She needs to be on this side of the road, because we are going away from home."
   That's how Nixon's mind works. This is probably the best example of how Nixon sees things.