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.  

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.  

What an emotional weekend!

    Someday I'll get back to posting daily again. This weekend is not that day though.

     (I sent a note to school to alert his teacher and aide about Nixon's fish almost dying. It turns out, knowing what to say because of what was going on at home, helped Nixon turn things around. During an assembly, Nixon nearly fell asleep on his aide's shoulder while they sat in the far back of the room because Nixon had said the noise was hurting him).



   Friday, after an amazing day at school, Nixon came home to find his fish still struggling to live. By bedtime his struggle had ended and Nixon's had just begun.
    After a short funeral, which began with Nixon holding Scootaloo's vase and carrying it to the bathroom, Nixon and I sat in his bed and cried together. My heart broke listening to his gut-wrenching cries.
    He did love that fish an saying goodbye was much more hard than he had expected. He wasn't as prepared as he thought he was. It still hurt.

   Saturday he had a birthday party to attend. With only a short meltdown Nixon made it through the party in amazingly good fashion. There were no tears for Scootaloo.

    Today we spent the morning together, as a family. Last night, Mac found Nixon's old Halloween costume Iron Man. This morning Nixon asked to wear it to breakfast. He rarely has any opinion on the clothes he wears but when he does, I allow it as long as it's seasonally appropriate. (No shorts in the winter is pretty much the limit of my refusals.) We went to breakfast and Nixon got smiles and I saw silent nods from other parents. Everyone who spoke to Nixon tried to call him "Iron Man" but Nixon was quick to tell them "It's only a costume, my name is Nixon".
    I adore my child and I was extremely grateful, many times beyond words, to every person who was kind to the little boy dressed as Iron Man the week before Valentine's Day today.
    We came home with 3 new mollies (named Scootaloo, AppleBloom and SweetieBelle for the Cutie Mark Crusaders from My Little Pony) and one small African Dwarf Frog named SeaFrog (or Lil A-hole as I dubbed him tonight after scaring us that he'd gotten caught behind the filter)

Wednesday and Thursday bleed into one post

     Because I had a late night last night and Nixon had his playgroup after school, I didn't do yesterday's post. Also, Nixon didn't get his tablet time because after playgroup we came home, ate dinner and it was bedtime. He did get double tablet time today though, so he was good with that.

    Yesterday he spent 15 minutes out of class. The school does Welcome Wednesday the first Wednesday of every month. It's when parents can come to the school and have lunch with their kiddo(s). I haven't gone to one, before yesterday, due to things I had going on at the same time. I was free yesterday and I went. Nixon was so excited to see me! We sat in the cafeteria, which I can see why Nixon's having meltdowns...it's so loud! And there are so many conversations happening at once, it's easy to see him getting overwhelmed when he's not focused on one thing (for example, he was focused on my visit).
    The down part to my visit, Nixon squeezed his knee in the gap between the cafeteria table bench. He needed help getting unstuck and ultimately bruised his knee. He was crying a little from the shock of the pain. The teacher's aide let me walk him back to class and give him a couple hugs and kisses. When I left he was shaking it off. He did tell me he was taken to the nurse and got an ice pack for his knee.
    The playgroup was much better than last week. We talked about Nixon needing to listen and participate instead of running around doing whatever he wants. This week he did participate! He only ran around for a couple minutes and even took part in the goodbye song! It was a great playgroup!

    Today Nixon had a good day. He had a couple issues but quickly made better choices and pulled himself together. Of his possible 60 minutes of tablet time, he got 57 minutes. (Since it's February the rule is now: 5 minutes out of class = 1 lost minute of tablet time). 

   Now the sad. Nixon's fish Scootaloo is dying. I did everything I possibly could to save him, but it seems he's lost his fighting spirit. I moved him into a vase with a little water, calm water, no filter flow. He's lying on his side, convulsing every so often, but mostly slowing dying.

   I've prepared Nixon for the worst. I told Nixon that I was angry with Scootaloo for not fighting more to live longer. He asked if that was okay, to be mad at a sick fish. I told him he's allowed to feel whatever he feels. He can be mad, sad, angry, lonely whatever he feels.
    He said "I'm sad and mad a little. I love Scootaloo and I don't want him to die." His bottom lip started quivering. This is where I step in, give him a big hug and tell him I love him.
    I told him, after talking to Mac, that if/when Scootaloo dies we will have a family date Sunday. We'll do breakfast and then go to buy new fish. NOT another Betta fish though. I'm thinking goldfish. Nixon's asked for an African Dwarf Frog and more ghost shrimp. Shrimpy is still alive and Nixon says he's lonely in the tank by himself.

    Farewell, Scootaloo. Please don't die before Nixon goes to school in the morning.....

**I should add, Nixon feels so much larger than most 6-year-olds, because of Asperger's. Losing his fish before school could send him into an emotional tailspin for the entire day. I'm going to send a note into school letting his teacher know of the situation so she's not caught off-guard if Nixon starts crying or gets angry. I feel it's better if his caretakers (teacher and teacher's aide) are aware of a possible meltdown so they can help him work through it before he gets to the epic meltdown point he might reach without support. **
   

Why was today so difficult?!?

   Nixon needed to be woke up this morning. While shaking off the sleep, he starts getting sad that his ghost shrimp Midnight is dead. It took me a few minutes to let him have his sadness before getting out of his bed.
    It's important to me that I give him time to feel what he feels without pressure to "get over it" or "move on". He feels so much and loves so hard that death is a whole new and complicated life event for him.

    Nixon was fully together when he went to school.
   He had a rough day, of sorts. More than one episode resulting in time out of the classroom, for a total of 22 minutes. Seven smiles and even spent all but 5 minutes in the cafeteria at lunchtime.

   

   Tonight was rough.
   Nixon's fish, Scootaloo, isn't looking healthy. I went to the pet store today to get advice on helping him. I changed his water (a 50/50 change). I tested his water (all normal levels). It's heated at a perfect temp for a happy fish.
    And still, at bedtime, Scootaloo looked bad. So bad I had to talk to Nixon about it. It's hard, but I feel like I need to prepare him for the worst. It's that bad. Nixon took it pretty good. I told him, if Scootaloo does die, when he's ready we can get him another fish (or fishes).

   I hate doing this to him, because he's likely to get anxious and check on Scootaloo multiple times a day, and possibly watch him before he falls asleep.

It's Monday

   Nixon had an okay day. It was actually not bad until he got home.

   School was okay. Seven smiles. Twenty minutes out of class, lost 4 minutes of his 30 minutes of tablet time because it's February and we've upped it to one minute lost for every 5 minutes out of class. He's still struggling with his writing assignments, which means I'm making a phone call tomorrow to find out where the IEP implementation stands.
   He received an IEP progress report, they're required quarterly for all students with IEPs and have zero reflection of the IEP being in place.
    I don't know what's going on with him and lunchtime but he only ate a small amount of his lunch and he spent time out of the cafeteria during lunch.

   When we came home, Nixon was calmly and quietly sitting on the sofa when my cat darted into the room, tired jumping onto the back of the sofa and failed. She fell onto Nixon, scratching his side.
    Nixon has a strong reaction to immediate and unexpected pain. As soon as Arwen fell on him and he felt her feet on him he started shrieking. It took me over 5 minutes to get him to stop crying and to breath. Lots of sobbing and teeth chattering from him.
    This isn't uncommon and he spent most of the night getting equally as upset about the scratch. Especially at bath time. It took a while to get him totally calm but he went to bed and forgot about the scratch.

I'm not looking forward to removing that bandaid in the morning.....

It's another late post, but with some relevant weekend news

   Nixon's usual aide was out of school on Friday. Thankfully, she not only let him know on Thursday but also let me know at pickup Thursday so I could remind Nixon and prepare him for Friday. Even a small change in routine, like a familiar face not being present for a day, can be enough to send Nixon into an emotional tailspin.
   He was prepared and he did just fine.
   The only part that worried me was, when at pickup Friday, the special education teacher told me he hadn't eaten lunch or snacks. He was complaining his tummy hurt, but had no fever. He went to the nurse but nothing came of that.

    Still:

   I'm not sure what's going on at school, but Nixon says he's still being forced to write. I'm hoping it's not as bad as he feels it is, because he's saying he won't go to school because he doesn't want to write. This avoidance of writing is in his IEP and the school agreed to provide alternative methods to the writing part of his classroom work. 

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    In other news, we had one of the 2 birthday parties we've got happening this week, today. I had expected this one to be rough. I thought I was prepared for it. And for the most part I was.
    It was an animal adventure. There were live animals and an animal presentation. Nixon was okay, at first. But when the talking continued and he didn't get to see the animals right away, he got frustrated. When one part was interactive, kids were turning over coconuts, and Nixon didn't get a turn (right away), he lost it. Mac and I took him to a quiet corner and let him cry. It took about 10 minutes until he finally pulled himself together.
    He came over a couple more times, for hugs and quiet. In the end he did have a good time. He pet a baby alligator, a toad and even helped hold a 65 pound albino boa constrictor. When we got home, though, he was wiped. He slept for almost 2 hours until I had to wake him up for dinner. 

    I promised Nixon, that if he ever gets invited to a party at this place again, we'd decline. He liked that idea because he said it was too much for him. And for him to understand and acknowledge it's too much, says something about the environment of the party. And I'm not saying there was anything done wrong by the staff or the hosts, it was a lovely party. It just isn't an environment Nixon can navigate and handle successfully at this point in time.