Read more about the article No sleep for this #Autism Dad and other updates
Elliott / Gavin / General Update / My thoughts

No sleep for this #Autism Dad and other updates

Last night was rough. Elliott never fell asleep and is going on something like 36 hours right now. Thankfully, Lizze took Emmett to school and then took Gavin for his bloodwork. That being said, we had some major problems with Emmett this morning. I was able to go back to bed a bit later this morning and feel fully recharged. Elliott is still plugging along as though nothing is wrong, other than running a fever. I don't know what's going on with him but I wish I did. As for Gavin, he's doing pretty good today. We have to do his IVIG infusion this afternoon but that's not a huge deal. Aside from talking endlessly about his one tablet game, he's not complaining of any problems and hasn't talked about…

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October 23, 2017
Read more about the article We’re risking the wrath of the school attendance God’s
Elliott / My thoughts / School Related Issues

We’re risking the wrath of the school attendance God’s

Unfortunately, Elliott never fell asleep last night and when we checked his temperature, he was back up to 100.7°F. He's not complaining of anything but his cheeks are red and he's well above the school's 99.5°F, fever policy. I took a screenshot of his temperature records from this morning, and sent it to the school office. It's nothing official but it does corroborate the fact that Elliott's running a fever. I also expressed my frustration with this new policy and they quickly replied that they absolutely understand/share my frustration. I've no solid understanding of how this is going to impact Elliott's attendance plight, but I'm sure we'll find out soon. Frankly, I'm trying not to give two shits about what the new policy says and simply do what's best for…

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October 23, 2017
Read more about the article Poor Elliott is unable to sleep tonight
Elliott / My thoughts / Sleep Issues

Poor Elliott is unable to sleep tonight

It's about 1:30 AM and believe it or not, Lizze and I were in bed shortly after 10:00 PM. Elliott is unable to sleep and shows no signs of being tired. He's still in his bed and I'm trying to sleep in mine but it's hard for me to feel comfortable sleeping if I know one of the boys are still awake. I feel like he's more likely to fall asleep if I keep on him until he does. If left to his own devices, he be on his tablet, trying to entertain himself quietly, until he's tired. The poor kids been in bed since 9:00 PM, with 10mg of Melatonin on board. He's been laying there listening to music, which normally helps him sleep. I hate the idea of…

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October 23, 2017
Read more about the article We might be staring down the barrel of another fever disorder?
Elliott / Fever Cycle / My thoughts / PFAPA

We might be staring down the barrel of another fever disorder?

As of this moment in time, Elliott is fever free. I'm not sure if he's actually sick or not because he seems to run fevers (usually low grade but higher than Emmett) and not show any symptoms. This is where my sleep deprivation comes into play because it's never really occurred to me that Elliott may be dealing with something similar to Emmett. Elliott's never shown any of the symptoms that Emmett does, aside from the fevers. Emmett gets horrible mouth sores and frankly, is a nightmare to deal with but understandably so. That's probably why it hasn't occurred to me before. If you look at the screenshot of Elliott's thermal history, you can see that he's running hot relatively frequently. This doesn't include all the time he's been dealing…

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October 22, 2017
Read more about the article Does Ohio even care about Special Needs kids and their education?
My thoughts / School Related Issues

Does Ohio even care about Special Needs kids and their education?

I haven't spoken much about this since I originally shared it but Ohio has a new school attendance policy. It's aimed at reeling in the chronically truant, but ends up overreaching because it's a blanket policy, regardless of circumstance. We received a warning letter last week because according to the new policy, Emmett can only miss one more day of school for the rest of the year, excused or otherwise. That's my understanding anyway. Both boys missed 8 days while we were in Florida on Gavin's Wish Trip and those counted against them. Emmett missed 4 or 5 days before that when he had a respiratory infection, giving him a total of 13 missed days. The State of Ohio isn't taking into account that kids with special needs are going…

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October 22, 2017
Read more about the article Things are actually going pretty well
My thoughts

Things are actually going pretty well

After a nice power nap, I'm feeling so much better. The boys are still getting along and Gavin seems to be doing okay. He's still off but as far as major problems go, we aren't seeing anything significant. I still want to try and get the kids to the park but I'm not sure anyone really wants to go but I'm hoping we can at least go to the garden center for a little while. In all honesty, my weightloss journey has been off track since our trip and I'm really trying to come tiny moving forward. I'm getting back into strength training but rather than free weights, I'm using TRX. I'll share more about that in a bit. The whole point is that I'm trying to get things back…

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October 22, 2017
Read more about the article Here’s what my sleep looked like
My thoughts / Sleep Issues

Here’s what my sleep looked like

I had a rough night trying to sleep. There wasn't anything particularly wrong, aside from I went to bed with a headache and kept waking up because of it. Both Elliott and Emmett were up super early and were the cause of any awake time after 5 AM. In the image below, you can see my sleep as monitored by BioStrap. This health band tracks all kinds of things: Heart rate Heart rate variability SPO2 (Oxygen Saturation) Respiration Sleep Steps Workouts Anyway, I thought I would share the results of last night's sleep. It's pretty interesting to look at and it helps to put into context, sleep issues one might have. I really like the Biostrap and it's one of my main tools in my selfcare arsenal.

4 Comments
October 22, 2017