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 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. 

      

When Acronyms meet new places

   Part of every child's life is birthday parties. Neurological normal kids have no problem with these events and they love attending.

    Our lives, however, make it a little harder. There's knowing he's going to face overwhelming noises, have sensory overload from the sounds, more than likely at least one meltdown. Then we have to factor in that there will be limited routine and lots of chaos. While birthday parties are fun for most kids, for my little SPD, ASD, ADHD kiddo it can be exhausting.
    I don't try to avoid parties, Nixon's only had 2 invitations this school year and we've attended (or made plans to attend) them both. But it takes a lot of preparation, both for Nixon and me. I start by reminding him it'll be loud. I then let him know that he will have to let the birthday child open his presents, without Nixon's help. I have to let him know that we may eat first or play first, there's no real routine.
   The biggest thing I do for him is let him know that, at any time, he can ask me to leave or help him find a quiet corner. I also carry headphones in my purse, in case he just can't handle the noise. I try to make the car ride, to and from, as quiet as possible, allowing him to decompress immediately afterwards.

    For me, I make sure I have a BIG cup of coffee. I also pack my balls-of-steel because  I never know when I'll have to deal with an adult who doesn't understand Nixon's issues and tries to run his/her mouth. I've been lucky so far and never needed to use them, but with every event we go to, odds are eventually one day I'll need them.

Last week got away from me, here's the 23rd's post

    Friday came and went, as did the rest of the weekend. Nixon's had Monday and today off from school, in-service working days for teachers. It's the end of the semester, which I guess these days are used for grading without distractions of kids in the classrooms.

   

   

   He had another great day. Even with his minor meltdowns, he's really reacting positively when given choices and consequences. 

    Our weekend involved a visit to a couple comic book stores. Saturday was a creator signing. We waited in line, Nixon was great because he had his tablet. When he and I were done, Mac was still talking to the creators and getting a sketch from the artist. There are times I have to remind Mac that Nixon's at his breaking point. Saturday was that day. All Nixon wanted to do was go look at the Big Hero 6 toys at the front of the store. Mac wanted him to wait until he was done. I finally saw how hard Nixon was trying not to have a meltdown (he was sitting on the floor, rocking side-to-side hugging his knees at one point). I snapped at Mac, I told him I'd take Nixon and he can do whatever he wants to do. 

   I'm not perfect, neither is Mac. But I go out of my way, often at the expense of my own interests and time, to keep Nixon from melting down. Mac's usually pretty good at the same thing, unless he's doing something he really wants to do or is super involved in something. Those are the times he'll expect Nixon to "behave" and those are the times we usually have a meltdown, with a side of Mac's frustration showing. 

   For the most part, the weekend was great. We watched a movie together Sunday night, because Nixon was off Monday we extended bedtime for him.