special needs Archives - Page 214 of 521

Things went horribly wrong this morning

I'm going to keep this super short because I'm exhausted. Emmett woke up and wasn't doing well. We tried for over an hour to help him feel better and nothing worked. He became hysterical as we tried to help him decide what pants he could tolerate. He has a new sore on his upper lip and that has him teetering on the edge to begin with. We know he tried and there wasn't anything that we could do. Our hope is that by Monday he'll be feeling better. For the moment, this has been an unbelievably exhausting morning.

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February 2, 2018

My thoughts

All I can do is what I feel in the moment, is best

It's been a pretty good day today. The boys seem to be doing better and I'm hoping that they can both return to school in the morning. Elliott's fever is gone and he's feeling fine now. I don't know what was going on this morning. I don't know how Emmett will be doing but he's still only able to do shakes and is avoiding all solid food. If he's still not eating, I don't see how he can go to school. This whole thing is so frustrating because all I can do is what I feel in the moment, is best. There's no instruction manual and very little in the way of guidance available to help us know what to do. 😱 At least they seem to be doing okay…

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January 31, 2018

My thoughts

Please don’t get any worse

The boys are both home from school today. Emmett's par for the course with his fever flare and Elliott woke up the morning running a fever of 101.2°F and not feeling well. There's shit going around the school and it looks like it may have come home with Elliott. It's going to be a very, very long day. I'm hoping that whatever Elliott has goes away quickly and it doesn't spread through the house. That's the last thing we need right now.

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January 31, 2018

Inspirational Posts / My thoughts

I’m so fricking tired of these impossible decisions

I get so frustrated and overwhelmed because there are so many impossible decisions that need to be made on what feels like a daily basis. What are impossible decisions? Impossible decisions are decisions that must be made knowing that there are no good options to choose from. At the risk of sounding cliché, it's damned if I do damned if I don't... Currently, we're trying to figure out a solution to all the problems surrounding the boy's education. I'm not going to go into those problems again right now, but if you're in need of a refresher, you can look here. I spent an hour tonight discussing options with the kid's education specialist/psychologist tonight during our regularly scheduled Tuesday night therapy session. The way I see it, we only have…

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January 31, 2018

Autism Parenting Struggles / My thoughts / School Related Issues

#Autism Parenting: Picking the BEST of the WORST options

We have therapy for the boys tonight but Lizze isn't feeling well and she will probably stay behind. It will likely be the boys and I heading out tonight. Tonight's focus is going to be on school for Elliott and Emmett. We have to figure something out because while the boys like school, they're also miserable at the same time, albeit for different reasons. This needs to be a very serious discussion about our options. I'm hoping Lizze feels up to going but but if not, we've discussed it amongst ourselves already and have reached a consensus. We both agree that the status quo isn't in the best interest of the kids. What we do about it is where we become less sure of ourselves. At this point, I feel…

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January 30, 2018

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

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

My thoughts

Dry air makes it so hard for me to sleep

I had a rough time sleeping last night. Majority of the problem was related to the air being so dry, it made me really stuffy and that always makes it hard for me to sleep. It's like a fricking desert. Around 2 AM I ended up downstairs on the couch. Its easier to breathe down there for some reason. I need to put the humidifier on the second floor because that should make a difference. I didn't end up fall asleep with Ruby curled up next to me. Thankfully, the boys are at Lizze's parents house, so I was able to sleep in. Gavin didn't need anything this morning and I wasn't disturbed. All we have to do today is take Lizze to the dentist, get stuff for the boys…

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January 15, 2018