My thoughts Archives - Page 389 of 1480

Barely surviving the worst fever cycle ever

We've made it to the end of the week, and what a week it's been. This week has brought with it a few firsts, and they have proven to be very challenging. Emmett began and is still inside of his worst fever cycle ever. We're at the seven day mark and he's still running enough of a fever to keep him out of school. I really don't know when this cycle is going to stop, but they historically last about ten days. Having said that, there have been a few over the years that lasted every bit of twenty one days. Lizze and I both love Emmett but we need him to go back to school. I'm burnt the fuck out, and need a day or two without a kid…

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May 6, 2017

Autism Parenting Insight / My thoughts

Generalization is a b!tch

One of the most frustrating things for me as an Autism Dad, in regards to my kids with Autism is generalization. Merriam-Webster defines generalization as the act or process whereby a learned response is made to a stimulus similar to but not identical with the conditioned stimulus. In layman's terms it means that if something happens once, it always happen again. Kids with Autism tend to apply this concept to just about everything in their lives. My kids are no exception. In fact, my kids are the poster children for generalization. Let me give you a few examples from recent history, most of which center around Emmett. If something tastes funny this time, it will always taste funny. Even if the reason it tastes funny is because you just brushed…

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May 5, 2017

Emmett John / My thoughts / Partners

I’ll give you one guess

I spoke with Emmett's dentist this morning, explained what we were dealing with and apologized for the late notice. He said that it's best to keep him home and reschedule, and not to worry about it because he understood. I hate canceling at the last minute for anything. I fucking hate it, but sometimes it can't be avoided. As for Emmett's status today, he's running a fever. I'm sure you're all as shocked and surprised as I am, but it is what it is. He's in a good mood for the most part today, and that's a good thing. I'm not the one physically going through this fever flare, but goddam if it hasn't completely worn me out. Emmett was up at 5:00 AM this morning and wouldn't go back…

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May 5, 2017

Lizze / My thoughts

A MAJOR update about my wife

This is a really important update, not only because it deals with my wife Lizze, but also because of how she's choosing to deal with a major struggle. Lizze doesn't have an easy life. She's living in chronic pain, thanks to Fibromyalgia, and chronic, untreatable migraines. She's been dealing with menopause, and hormone replacement therapy as a result of an emergency hysterectomy a couple years after Emmett was born. A couple of years ago, she was diagnosed with Bipolar II, with Borderline tendencies. This has been very challenging to manage because much like Gavin, her biology tends to make her process meds differently. This makes finding the right combination of medications, very difficult. She also struggles with severe social anxiety that makes it difficult for her to leave the house…

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May 5, 2017

Autism Parenting Struggles / Emmett John / My thoughts

My wife and I have been going back and forth over this

I've been trying to figure out what to do in regards to Emmett's dentist appointment tomorrow. I remembered that we've had a similar situation in the past and the office said that as long as he's not sick, the fever is fine. The only difference between that and this is his mouthful of sores. Lizze and I have been going back and forth over this, but it's not an easy decision. He's already not going to school because he's running a fever still. If it were just the fever, we would probably move forward with the appointment. Unfortunately, he has a mouthful of sores and I'm pretty sure that's something they are going to notice. He already has another appointment in June. Elliott and Emmett both do actually. They bumped…

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May 4, 2017

Emmett John / My thoughts / PFAPA

Trying to find the light at the end of this tunnel

This fever flare has officially cost Emmett an entire week of school. Not only has it cost him the week of school but it continues to have a vice like grip on his body. He's not currently running a high grade fever, it's still a fever at around 101°F on average. We've taken to describing his tongue as a zombie tongue, because that what we image a zombie's tongue would look like. I'm not sure how to handle his dentist appointment tomorrow. He's not sick, but it looks like his tongue is falling apart. I need to call and try to explain what's going on and see what they think. The other thing is the fever. As soon as they touch him, they'll know he's running a fever. Frankly, Emmett's…

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May 4, 2017

Emmett John / My thoughts / PFAPA

I’m so overwhelmed I just want to cry

It's been another exhaustive day in the house of freakishly rare, and frustrating medical conditions. Emmett wasn't at school again because of a fever. He's now been out of school since last Thursday, and while this is outside of anyone's control, it makes me uncomfortable. The school is very understanding and we do t have any issues in that area, plus we do have a few notes from his doctor, but it doesn't cover everyday. Emmett did pretty well today. He wasn't as moody as he has been, but his fever is still present. It comes and goes throughout the day. We have to adhere to the twenty-four hours without a fever before returning to school rule. The problem is that while we may be confident this is a fever…

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May 4, 2017

My thoughts

Gavin seems to be losing this major skill and it’s heartbreaking

We have discovered Gavin is having some newer challenges recently that are really heartbreaking. Aside from all of Gavin adventures with his team of super best friends, one of the things that Gavin truly loves to do is play Minecraft on the PlayStation or Xbox. This is how he passes the time during his IVIG infusions. Unfortunately, he's begun struggling with this lately. He can still build some pretty amazing things, but he's forgetting what buttons do what. This means that building is becoming very frustrating for him because he's constantly pressing the wrong button and accidently destroying what he builds. This is a newer issue and I'm not entirely sure what to make of it. Using a controller seems like a muscle memory kinda thing and aside from reminding him…

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May 3, 2017