Halloween....we survived!

   Halloween is a dicey holiday for Nixon. He wants so badly to be a part of it, but he also can get super overwhelmed by the festivities. Years past we've gone trick-or-treating with him only to have him start crying and screaming at people. He will want a costume with a mask then refuse to wear the mask at all.

*The first year this happened he was Iron Man. When he refused the mask, I bought a black face paint crayon and drew a Tony Stark-inspired goatee on Nixon. He loved it and we got a bunch of compliments on the unique way I chose to handle his mask aversion.*

    Nixon's also very rule-oriented. If he's told something is a rule, once he gets it it's a rule for him and everyone around him, most cases. Before we went out last night, he was reminded to say "trick or treat" and "thank you", only take one piece of candy (when presented a bowl as a lot of the people did this last year) and to be polite to others around him when waiting at houses.
    At one house this year, he took his one piece of candy and was then offered a bag of pretzels from another bowl, at the same house. Nixon paused and was visibly bothered, thinking he now needed to choose between the candy he just chose and the bag of pretzels. I could see he was getting upset by the choice he preserved he had to make, and I gently told him it was okay he could have both. He said  many "thank you"s as we left when he realized he didn't have to choose!
    There were quite a few teens out, and they were typical teens out on Halloween: loud, rambunctious and pushy. Nixon was quite nervous around the groups of teens, he'd grip my hand really hard and get very close to me, but he never yelled/cried or got upset. He coped with them in a way he hadn't been able to in the past.

    At one house, Nixon was leaving when he saw a toddler drop a couple pieces of candy from their bucket. Nixon picked them up and waited for the toddler to come down the steps. Nixon then said "Here you dropped these" and tried putting them back in the little boy's bucket. The child kept walking towards his mother, dropping another piece of candy, which Nixon again picked up. He got frustrated and said "MOM, he won't stop moving so I can't give them back" and put the candy in my hand. The child's mom was next to me and I explained that her child had dropped the candy from his bucket and my son wanted to return them to him. She gratefully took the candy back and said "thank you" to Nixon, who was then right as rain and ready to move on. It never crossed his mind to keep the dropped candies, because they weren't his. I could not have been more proud of him than I was at that moment. 

   We walked about 2 miles overall and he was a champ the entire time. The last half-mile he took the mask off. This Halloween was one I had envisioned when I was pregnant with him and dreaming of our future with him. It took us 6 years, but it finally happened and it was so worth the wait!

The struggle planning a birthday party for a child on the spectrum...

   Nixon's birthday is less than a month away. He's well aware of how close his birthday is getting. He's been asking for over a week "Is my birthday tomorrow/the day after tomorrow, the day after that?" so I'm very aware of how excited he is about his birthday.
    He's been vocal about the type of party he wants (at a bounce house he went to a couple parties at last school year), he wants all his classmates there and he wants to sit in the inflatable throne. Really nothing else matters but that throne.
     But there's a part of me (and Mac) that worry we'll make these arrangements and no one will come. All the children in Nixon's class are on the spectrum or have other special needs that prevent them from functioning in a general education classroom. Nixon's told me of a child who can't handle the good morning song, so the class whispers it now to make it easier on this student. There haven't been classroom events beyond the general open house/beginning of school meeting, so I haven't gotten a chance to feel out any of the other parents, which means planning a birthday party including these children is beyond rough. Nixon's had meltdowns at this venue before and I'm not sure I can ask other parents to bring their child knowing other children may also react the same way.
    Mac and I made a unilateral decision tonight: We'll bring cupcakes to Nixon's class for his birthday and include goodie bags for each of the children in his class. No party at the venue.
    I'm looking to find an inflatable throne for him and I have a couple other ideas. We'll keep it small and simple for him but still fun.

    I hope we're making the best choice for him.

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!

With coping skills and techniques come some amazing moments!

    Life keeps moving forward, no matter how many times I reach out and try to find the pause button. Nixon's had 3 meet and play sessions with his ABA therapist. They're building a relationship that will expand to more demand-based play. For now they play games and sports during the sessions. Nixon gets frustrated but his therapist works with him and Nixon responds.
    One of their session days, our community was getting the weekly lawn care done. It wasn't safe for them to be playing in the yard while the yard guys were mowing, especially because there's always stuff in the grass getting tossed up by the mowers, so I suggested bubbles on our balcony for a bit. However, again lawn guys mowing, I offered Nixon his headphones to help cancel out some of the noise from the lawn mowers.
    This is what that looked like:

    Nixon also had to go to the dentist last week. That was...not fun. His dentist is amazing! She was wonderful with him, very patient and understanding of his autism diagnosis. I brought my ever-growing bag of tricks, which now also includes a weighted lap pillow, which in a former life was a pillow pet. (One night, a zipper, polybeads and my sewing kit made it all happen)

     The end result of the trip was a cleaning, some fluoride, and learning that all future treatments beyond cleanings will be done in a hospital setting under sedation. That is, Nixon will be sedated, not me, though after last week's visit I wouldn't be against a mild sedative for myself.
    Unfortunately, Nixon also had an abscess that had drained itself naturally, but his dentist wanted to treat him with a round of antibiotics to be safe. This is for a couple reason but largely because Nixon never mentioned any pain in his mouth at all, and having had an abscess once myself I'm amazed and shocked by that. He registers pain differently which makes treating some ailments harder, like an abscess. He was given amoxacillin in addition to a second, back-up only fill if needed, prescription. Why? Well, I have an allergy to both penicillin and amoxacillin, and my dad has an allergy to penicillin. Nixon's never been on either (never needed one before) and the doctor was understanding of my concerns.
    Yep, he had a reaction to the amoxacillin. It started with a stomach ache and the next dose he had a couple blisters form around his mouth, but it took him being on the medication for almost 3 days before the reactions started.
    Thank gods for that second prescription!

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     Mac was off this weekend and thanks to a good friend who adores Nixon, he and I had a date for the first time in months. And it was lovely!

     Today we had a family date. We went to the Brick Fair in Virginia, not a Lego sponsored event, but lots of Legos there! 

     Nixon was good, he had a few issues mostly waiting in lines or trying to see displays when people wouldn't move. He did get upset when we were asking him too many questions (we were trying to give him options for items to purchase for him, but it was too much for him). He always managed to stop himself before he got too upset. He'd refocus on something else and deescalate. And in the end, he decided when he was ready to go and asked if we could leave now. 

     We left. 

Trying to amuse him while waiting to get a clear spot to view the moving setups.

Trying so hard to keep it together while waiting to go into the bounce house

Nixon bolted from me when he saw this! 

Sliding a block down the ramp in the play area

Good night kisses for my boy, BeBe in hand and fingers in mouth.

     

Visited the new school and went to a pool too!

    Summer break is flying by! Nixon has had an Occupational Therapy (OT), Speech Therapy (SP) and ABA therapy evaluations. The ABA meeting was nice, turned out Nixon already knew the therapist he'll be working with! (Last summer, Mac and I found a local OT who was offering sensory groups for kids. Nixon went to 5 groups and the therapist he'll be working with for his ABA time, also worked with him in that group. Nixon recognized him as soon as he entered our home!)

  * I've attempted to post this twice before. I wrote the entire blog post, only to have it not save and not publish, in spite of the auto save feature. Here's hoping third times a charm*

    Nixon's going to be attending a different school this fall. It'll be a satellite classroom of a Baltimore school called Kennedy Krieger. Currently, Nixon will have 5 classmates (whom he met the day we visited the Baltimore school). His classroom will also have a teacher, 2 aides and (I believe) 2 social workers. The class will never be larger than 10 children.
    Perhaps the thing I liked best is, unless a student is harming him/herself or other students they aren't removed from the class. They'll be placed in a safe area but they don't "escape" the work. Instead, the 4-5 adults in the room all focus on positive behaviors and ignoring the negatives (yelling/throwing/evading/running, etc.). Each child will have a reward chart with a reward they chose to work for each day. As soon as they reach the goal, they earn that reward no matter what task they are currently doing in the classroom!
     Each student may also join the general education first grade classroom, when/if they are ready, but it's not required. What a relief!
     In addition to that, the curriculum is catered to each child. Some are working just below grade level, some right at grade level and some are given work above grade level. It's a wonderful class and I'm excitedly apprehensive about Nixon's upcoming school year.

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     Nixon is a child that has always hated water on his face and in his ears. It's made bath time comparable to a circle of Hell, at times. When he was around 2 years old, he'd scream bloody murder while I washed his hair. By then end of a bath, in those days, we'd both be wet and crying messes.
    It's gotten easier, but he still has issues with water above his neck. I have to hand him a dry wash cloth, folded in half (shaped like a triangle), which he uses to cover his ears and cover his face with it, Ala western bandit style. When his hair is buzzed short, I use a wash cloth with shampoo on it and then a cup to rinse with. Easy peasy. 

     We spent one day at a friend's apartment complex community pool. Nixon hasn't been in a pool in a couple years. Wear his brand new Puddle Jumper, he still took almost half an hour to actually venture off the steps into the pool. As he grew more confident, he jumped and splashed, he clung onto my back and kicked his legs behind us. He loved the water!
     Mac and I eventually switched off, Mac played in the pool with Nixon while I sat out on the patio. After almost 2 hours in the pool, it was a fight to get Nixon out of it to go home. Best part was, he didn't mind the water on his face at all! But his slightly fearless nature had me concerned at times. Swimming lessons may be in his future this fall. There's plenty of places locally that offer swimming lesson year round. 

Our journey into the world of therapies has just begun

    Yesterday Nixon had his OT (Occupational Therapy) evaluation. It was....rough. He went into full-on sensory overload and had a resulting sensory overload meltdown when it was time to leave. Thankfully, Mac was with me and was able to pick him up and carry him out of the office. Nixon was doing his ear-splitting screeching and no one needs to hear that for any longer than absolutely necessary.
   On the way out, I was talking to the therapist who had evaluated Nixon and there was a woman in the waiting room. She was very kind about Nixon's behavior and remarked about how calmly I was handling his outburst. I thanked her and just responded with a comment of "It is what it is, if I'm not calm he feeds off my emotional response and that doesn't help any of us" and gave a uncomfortable chuckle. She smile kindly and said "You're doing better than you realize. You're smiling and already using coping skills to handle the cards you're dealt. You're going to do just fine, Hun. Even if you don't believe it right now. You're special family will be just fine."
    I thanked her again and left. I left before she could see the tears her kind words had caused to well up in my eyes. I choked them down as I headed down the stairs to join Mac, who was struggling with Nixon at the car. I handed everything in my hands to Mac and I gave him a break, because I saw that he was reaching his max and needed one. I went after Nixon, who was resisting getting into the car. I chased him down the sidewalk and saw his smile replace the scream. I picked him up and carried him to the car, the screaming returned. I buckled him in and when he was quiet, I made a deal with him: 2 minutes of quiet and he'd be able to play on my phone.
   After 5 minutes of silence, I handed him my phone.
   Mac and I spoke about the morning on the 25-minute drive home, because until then Mac had really only heard about these meltdowns but never really witnessed one from beginning to end. I explained that when the screeching starts, rationalizing with Nixon ends. At that moment, removing is the only option but it has to be done without emotion and mostly silently. It's hard, because during those moments I've had Nixon tell me I'm awful, I'm not his mom and it's his worst day ever. Those things are hard to hear but I know he doesn't really mean them, he's saying things to get a reaction from me, which I've learned to not give him.
 
   I don't feel like I'm doing anything extraordinary as a mother. I'm living life as best I can and learning to accept what our life will be like. It's not like everyone else's but sometimes I feel bad that everyone else won't know how awesome our life is!

    In other news: Next Tuesday morning, the 16th, we have our Central IEP board meeting. I'm very anxious about this meeting. There will only be one representative from the school present and I'm hoping to be given a chance to address some recent issues that Nixon has mentioned at home.
    The most upsetting happened last week. Nixon was having a bad day, and in the middle of him recovering and deescalating his behavior, he was laying on the floor face down, he said "I'm sorry I'm being such a brat, Mom". I was completely taken aback because I call him a lot of things ("booger", "punk", "tushie", to name a few) but never "brat". I asked him why he'd say that and he said "Well, sometimes [aide's name] tells me that when I'm being difficult". Now I have an issue with an adult name calling a child in her care who is obviously having a hard time. He's not a bad kid, he's having a difficult time! Mac was standing right there when Nixon said this and I thank gods he was because I nearly lost my mind! But, I can't do that because Nixon will misinterpret my reaction as something he did and react defensively.
     I haven't even been able to bring this to the school because I already know it'll be brushed off as "Nixon misunderstood" or something like that. They simply don't understand that he doesn't lie. He is incapable of lying because he doesn't understand the concept. He tattles on himself for things he does wrong!
   The other issue, is apparently, someone at the school has taken upon themselves to tell Nixon he's not returning to the school next year because "you are a bad kid who made a lot of bad choices and will be going to a new school next year." He won't tell me who told him this, but he's told both Mac and myself that he was told this at school. It was no one at the school's place to tell him this! It's as if they stopped caring about his emotions and just want to hurt him and see him lash out!

    Only a few more days of school and he's out of there. It's taken a lot of willpower not to start cussing every one of these adults out for the pain and negative self-esteem issues they're causing my son to have! He's 6, he's a gentle soul and he cares about them so much he tries protecting them even after they've said hurtful things to him!

 

   

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.**

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

IEP updates

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

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

---------------------------------------------

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

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

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

    

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

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

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

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

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

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

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

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

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

Last week was not good

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

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

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

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

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

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.

The uglier, less discussed side of life with acronyms *warning, cursing in post*

    This blog isn't just about Nixon's school days. It's basically for everything that affects our lives since the introduction of all these acronyms.

    Today I'm going to pull back the curtain and share where I am, in my life, right now. It's not pretty and I'm not proud of it, but I am open enough to share, so that other parents in this situation right now can see they're not alone.

   Mac is leaving for a training course on Sunday. He'll be gone for nearly 12 weeks. We have no plans to go visit him because Nixon will not handle seeing him only to leave again. The traveling alone would be too much for him to handle. (He and I took a trip home to Western New York in November. We flew and spent 5 days in my hometown. He couldn't fully adjust to the surroundings and had a giant meltdown on Thanksgiving at my grandmother's house.)

   Lately, I've been a very shitty mom. I'm short-tempered, lack patience and very stressed out. I'm also fairly certain I have some level of depression going on. There are days I can barely get off the sofa, while Nixon's in school. I nap because it passes time and gets me away from my own thoughts. My sleep is riddled with anxiety dreams and panicked nightmares. I find myself yelling over the smallest, stupidest things and I know I'm overreacting but I can't stop the anger leaving my lips. I'm snapping at Nixon over things he can't control. Under normal circumstances, I'll help him to try to curb the behaviors (like his repeating phrases 2-5 times in a row) but in the past week I have zero patience for these behaviors. I barely have the energy, or even care enough, to shower. I find myself not caring about food or eating to eat, not out of hunger.
   Perhaps the biggest sign that something is not right has been my lack of wanting coffee. If there's one thing in this world that I truly enjoy, it's my daily cup(s) of coffee. But last week I found myself not caring if I had a cup of coffee or not.
    I have the warning signs of a panic attack every time Nixon's school calls me. My heartbeat races, I feel the room getting closer to me, I feel my breathing increase. These are all as soon as I recognize the ringtone I've set for the school on my phone, before I've even answered my mind is already convinced Nixon did something and I'm getting the call to tell me about it. There's never a time that I worry he's hurt himself, I think my mom-sense would know that before I got a phone call, but it's always a sense of dread about what he could have possibly done and if anyone else was affected by it.

   I called last week for an appointment with my doctor, to discuss all these issues. With Mac leaving in 6 days, I have to get this under control somehow before he leaves. My stress level is about to quadruple and if I'm a giant bag of nuts now I'll be much worse when it's just Nixon and I. If being the mother Nixon needs requires me to get help and some medications, I'll do it.
   Asking for help doesn't make me weak. Being put on medications doesn't make me a failure. Not asking for help and taking the meds would make me a horrible mom. Sometimes it's braver to admit you can't do it alone then to tough it out. I've been down this road before, with my emotions ruining my moods and wrecking my relationship with Nixon. Trust me, I refuse to see fear in his eyes when he looks at me, and lately with my screaming fits that's exactly what I see. I'm too strong to let this ruin him! I owe it to him to fix my shit so I can be the mother he needs while Mac's gone.  

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

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

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

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

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

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

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

When your Monday is on a Wednesday you pretty much expect the worst

    Monday was a holiday, yesterday was a snow day and today was delayed 2 hours. Nixon and I had a rough morning, all over a library book. I was expecting him to have an awful day at school, because of our time at home and after his behaviors last week at school.

    Turns out, I was worried for no reason.
    Nixon is starting to understand jokes. He and his aide came out of the school with sad, solemn faces. His aide handed me his sheet and said "He had a rough day". I start to comfort Nixon when I look at the sheet....and saw all smiles! Nixon says "HAHA we tricked you Mom! I had a GREAT day!".
    Here's hoping the rest of the week goes as great as today. 

Friday was so bad I took the entire weekend to recover and write this post

   It started with another 2-hour delay start to the school day. This weather is awful, but at least it's not feet and feet of snow!

    I let Nixon wear sweatpants to school (I am NEVER doing that again). While he had a not-completely-awful day, he did decide to use the bathroom and then leave it with his pants down. Thankfully, he did have his undies on (trust me, he has done the "Full Monty" at school before...his preschool, before we were aware of the Asperger's and all that).
    I decided he was going to have to do written work after that stunt. I guess he thought I was joking because he agreed to do whatever I decided as punishment.
   

   

    He was wrong. I gave him this sentence to write, 5 times, in his homework book. He hates writing, will do almost anything to get out of writing. I set him up with homework before dinnertime. I gave him plenty of time but set a limit. He had until 6:30PM to finish his homework in.

    He ultimately finished his writing. It got messier, but the point is he did it. 

   Hopefully he will keep his pants up from now on. 

   

This week is rough to say the least

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

   Wednesday was a scheduled early dismissal day.

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

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

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

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