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.

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.

Tuesday? Monday? Who can tell anymore...

    Yesterday was a snow day. There wasn't any real snow, but it was very icy and very dangerous. Snow day 4 of the 5 built into the school districts schedule.
    Because of Nixon's snow day he was able to go with me and take Mac to the airport for the second time. This time we did a curbside drop-off. Nixon was very fine with the drop-off. Nixon was great at home at dinner. He was fine at bedtime. In fact, he brought me the teddy bear Mac made for him (after he as supposed to be asleep) and said "Mommy, here. You can press the paw right here to listen to Daddy's voice if you miss him." I tell him that Capt Bearmerica is his bear and he says "I know, but Daddy didn't leave anything for you in case you miss him."

   I wake up and Nixon is in bed with me this morning.

   We had an easy morning this morning. Up, fed, dressed and out of the door with no issue this morning. Shocking! After we arrive at school, as I'm dropping him off with the teacher's aide I give her a heads up about Mac leaving yesterday, and I leave him at school. Hoping for the best.

   His first really great day in a couple weeks! It was a full day and he came home with 8 of 9 smiley faces! He spent only 10 minutes out of class.

   What some people may not know about children on the spectrum or with SPD is that, when these children get overwhelmed they may not want any kind of touch. Nixon has not ever told me to not touch him.

   Until tonight. 

   He came out from him bedroom, crying. He'd been in there and asleep for about an hour before this. I called him over and asked him what was wrong. He said "I can't find sleep." Usually, when he's upset about anything, he'll curl up on my lap and listen to my heart while he calms down. Tonight I try to get him comfortable and he pushes me away. I stop. While a part of me aches to comfort him, I need to do it on his terms. I ask him if he doesn't want to be touched. He tells me "no touching, Mom". I ask him if I can wipe his tears, which he agrees to. I get him calmed down and he asks to sleep in my bed, on Mac's side. I don't care, it's a bed big enough for the both of us, as long as he gets sleep. 

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.