Read more about the article I have enough to worry about already
My thoughts

I have enough to worry about already

Elliott is off to school while Emmett is home because of a fever flare. I'm really proud of Elliott because he did awesome this morning. Neither one of the boys likes going to school without the other but Elliott has been be very good about it this week. Emmett is in rough shape but is currently working on his makeup work with Lizze. I sent the school pictures of his mouth and that helps to document his absence. I've been stressed out because of these new truancy laws in Ohio but I've recently decided not to give a single shit about them. Here's the thing - these laws were not written with kids like Emmett in mind. He's living with medical issues that can often interfere with school attendance. We're…

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January 30, 2018
Read more about the article Special Needs Parenting – What it feels like to watch your kids suffer
Inspirational Posts / My thoughts / PFAPA

Special Needs Parenting – What it feels like to watch your kids suffer

I've been working for almost a decade to help people better understand what Special Needs Parents go through. Whether it's Autism, ADHD or even fragile health, there's a story to be told and insight to be gained by reading it. Every family's experience can and will be different. Even families dealing with the same diagnostic challenges can and will experience different problems, even though their kids share the same diagnosis. I wanted to attempt to explain what it feels like having to powerlessly watch my kids suffer. The most recent experience I've had, I'm stilling actively living through, and it's in regards to Emmett. Emmett has been living with a very rare fever disorder known as PFAPA. The disorder means that Emmett runs idiopathic fevers. Idiopathic means that the fevers…

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January 29, 2018
Read more about the article It’s all about Gavin this morning
Gavin / My thoughts

It’s all about Gavin this morning

Gavin's bloodwork is done for the week and I'll follow up with the pharmacy this afternoon. I need to remind them to have his medication delivered by Wednesday evening. There's plenty of time for them to get the results and gain approval in order to release another seven days worth of pills. Next up for the day is Gavin's IVIG infusion. We actually just received a resupply of his infusion meds on Friday and so we are good to go for the next thirty days. They've been doing a lot better with Gavin's infusion supplies lately and that's awesome. As a parent, it's stressful enough just knowing your child has all these life threatening health conditions. Worrying about if/when their medications will arrive and arrive correctly is just that much…

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January 29, 2018
Read more about the article How my appointment went
My thoughts

How my appointment went

My meeting with HEAP went as expected. It wasn't great but it wasn't terrible either. This does help us with our utilities by leveling out the payments. As an example, we now pay $130/month for gas and $130/month for electric. It's very similar to being on a budget. The upside is if the actual amount due is higher than the $130/month, we only pay the $130.00. The downside is just the opposite. If we owe less, we pay the $130.00 anyway. It's a give and take. The set monthly payment is part of the PIPP program. HEAP helps pay down your balance by making a one time payment to each utility. My appointment today was actually a PIPP reverification. In the reverification process, our monthly payment has almost doubled. If…

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January 29, 2018
Read more about the article Please keep Emmett in your thoughts and prayers
Emmett John / My thoughts / PFAPA

Please keep Emmett in your thoughts and prayers

I mentioned that Emmett would be home from school today. The reason for that is rather bad fever flare. I'm pretty sure it started on Saturday because that when the physical symptoms began. At first, it was just one sore on the inside of his lip, but as of Sunday evening, he's got several more. The poor kid is in a lot of pain and isn't eating much as a result. He doesn't eat enough on a good day, and this makes things worse. Right now I'm making him milkshakes and mixing SlimFast powder in for some nutrition. These are cold and numb his mouth enough that he can relax a bit. Unfortunately, it doesn't last forever, and he goes right back to being miserable. There isn't much we can…

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January 29, 2018
Read more about the article (Poll) Does your child with #Autism have trouble sleeping?
My thoughts / Vivint Gives Back

(Poll) Does your child with #Autism have trouble sleeping?

Lizze and I are facing a growing challenge when it comes to putting the boys to bed at night and having them go to sleep. Elliott and Emmett went from falling asleep within about thirty minutes of laying down, to being up until midnight almost every single night. This started during Christmas break for some reason, and we can't figure out why. I guess the reason doesn't matter as much as finding a way to fucking fix this because this is getting old. We had finally gotten Emmett through his I have to fall asleep in your bed, and then you can carry me back to mine when you go to sleep phase, around Thanksgiving. It was a glorious time, short-lived as it was. Nothing changed during the break. We…

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January 29, 2018
Read more about the article A busy morning
My thoughts

A busy morning

In the morning, I have to meet with HEAP in regards to our utilities. Once a year we have to reapply, and that's about it. It helps to make our gas and electric bills a bit more manageable. My Mom is taking Elliott to school in the morning because my meeting is first thing. Emmett will be home from school, and I'll explain more in a little bit. I would love for the week to get off on the right foot...

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January 28, 2018
Read more about the article Welcome to my fricking nightmare, and it’s only 8 AM
Emmett's Art / Homework / My thoughts / School Related Issues

Welcome to my fricking nightmare, and it’s only 8 AM

The boys are going to their grandparents for a little while today. It's spend some time with Grandma day, and it should be fun form the boys. Y Unfortunately, Emmett is still finishing up some of his make up work, and it's due in the morning. He's freaking out over not being done and is completely overwhelmed by everything related to school anymore. Lizze and I are taking turns trying to help him, and it's not going well. It's not going well at all. Emmett is freaking the fuck out and throwing things around the living room. Have I mentioned lately, how much I hate school and homework? He's just not coping well, and I don't know how to help him anymore. I just sent his teachers a message, and…

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January 28, 2018