childhood disintegrative disorder Archives - Page 216 of 276

The black and white, very literal world of #Autism

It seems that the boys had a decent day at school today, although Elliott said it was terrible because of all his makeup work. The moment Emmett got into the car though, he just screamed and screamed. He screamed the entire way home, because communication is a challenge. Yesterday I told Emmett that I would try to swing by my parents house and pick up their candy, because they were unable to go trick or treating. As it turns out, I took Gavin to get his bloodwork done and I realized that we were very low on gas. I don't get paid until Wednesday, assuming everything comes in on time. The bottom line is that I didn't get their candy bags and he had been counting the minutes until school…

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October 30, 2017

Elliott / Emmett John / My thoughts

It seems they made it through the school day

Elliott made it through the entire school day and that's definitely a step in the right direction. That doesn't mean that he had a good day though. All it means is that he wasn't sent home because of a fever. Emmett has lasted as well and the reason I even mention that is because he wore pants to school for the first time this year. That's definitely a few steps forward. Like with Elliott, I don't know if Emmett had a good day. I can very easily see Emmett crashing when he gets home because his pants have been driving him crazy all day. It's very common for kids on the Autism Spectrum to have awesome days at school but completely fall apart when they get home. They spend all…

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October 30, 2017

Clozapine Crisis / Gavin / My thoughts

I’m so worried about Gavin’s labs today

I managed to get everything done this morning that needed done. Gavin's labs have been drawn and now all we can do is wait for the results to come in. To say that I'm on edge is an understament because I'm freaking out at this point. I don't know whether things have improved or gotten worse but I'll likely find out in the next few hours. If things have gotten worse for Gavin, we will likely pull the plug on the Clozapine and hopefully see a positive change in his labs.

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October 30, 2017

My thoughts

Rough morning but we did okay

The boys have both made it to school this morning. Elliott was questionable but we opted to send him because he's already missed so much and he was feeling fine. Both Emmett and Elliott had a rough morning, but like I said, they made it to school and that's what matters. Now I have to focus my attention to Gavin and getting his bloodwork done this morning.

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October 30, 2017

Elliott / My thoughts

Elliott’s still running a fever and I don’t know what to do

I don't know what we're going to do this morning as far as school and Elliott are concerned. Within the last ten hours of so, he was running a fever of 101.2°F. The school policy is that anyone with a temperature of 99.5°F or above, must be kept or sent home. I'm going to have to call the school in the morning and talk to them about this. We don't know for sure what's going on with Elliott aside from not having Strep or Pneumonia. My next call is going to be to our immunologist because she manages Emmett's fever disorder and it's looking like Elliott might be looking at the same thing. This is so fucking stressful and I wish this were a less murky situation because knowing what…

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October 30, 2017

My thoughts / Unboxing / YouTube Video

Opening the new #Sony WF 1000X noise canceling true wireless headphones

I'm always looking for ways to help raise Autism Awareness in creative ways. I used to raise awareness by building Android ROM's for Samsung's flagship phones and did that for a couple years. I had entire communities of nerds (myself included) on one of the most popular phone sites in the world, sharing what they learned about Autism with their families and friends. It was truly amazing. I ran out of time for developing and so that is no longer something I'm pursuing. I've begun a new venture to leverage one of the most popular types of videos on YouTube, unboxing videos, to raise awareness for worthwhile causes. I'm calling it OpeningStuff and I've already partnered with some amazing companies. I've already been sponsored by Bose, Jabra, Sphero, Tile, Nokia…

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October 30, 2017

Autism Parenting Insight / My thoughts

It feels so shitty to make this type of decision

We made the difficult decision to cancel trick or treating today and while it wasn't popular, it was the right thing to do. There were several factors that went into making this decision. For starters, it's 40°F and raining outside. That's miserable to begin with, but considering two of the three boys are running fevers, Lizze is still really sick and Gavin's labs aren't good, we didn't feel comfortable going. Emmett was hit the harder because he doesn't deal with change well and he was really looking forward to going. Gavin didn't seem to care one way or the other and Elliott was on the same page as Gavin because I don't think he's feeling well. Lizze and I didn't know what else to do. All we could do was…

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October 29, 2017

Elliott / Emmett John / Fever Cycle / Figuring Shit Out / My thoughts

I’m totally lost and don’t know what to do

As of early this morning, it seems that Emmett is either sick or entering a fever cycle. There's absolutely no way to know the difference.. If you're wondering about Elliott, he's still running a fever as well. WTF are we supposed to do about trick or treating today? The forecast is cold and rainy. Should we just pretend like they aren't running fevers? Should we just take the kids trick or treating anyway? Forget for a moment that today is trick or treating because tomorrow they're supposed to return to school. I haven't even begun to figure that out. I'm at a total loss. I don't know what to do and there isn't anyone out there that can tell us anything we don't already know. That doesn't mean we know…

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October 29, 2017