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!

 

   

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.

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.

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.

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.  

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

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

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

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

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

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