Ehlers Danlos Archives - Page 68 of 101

I was really frustrated with my kids today

I've not talked about this in awhile but my kids seem to not have an inside voice. This isn't something new but it's super annoying and unbelievably disruptive. My kids have always been this way but as they get older, it's gotten worse. They can be standing a foot in front of me but talking to me as though I'm across the room and can't hear them. It's pretty fricking loud. We've always been told it's a sensory thing and that makes sense. We've ruled out hearing issues or or plugged up ears. They simply have three volume settings, off, loud and louder. It's really frustrating, especially when I'm already overwhelmed and desperately needing things to be quiet. It is what it is and it's not their fault but that…

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January 22, 2019

General Update / My thoughts

A quick update 01/21/2019

It's been a very long, four day weekend. For the most part, we've been trapped in the house due to the weather. The kids were able to get outside a few times and play in the snow for a little while. Outside of those brief excursions, we've been cooped up and people are getting antsy. Unfortunately, there's not much to do at the moment and trying to get anyone to agree to do anything together has proven difficult. Today would be a perfect movie marathon day but no one wants to watch a movie. We could play board games but no one wants to do that either. Everyone is on edge because as with any long weekend, routines get disrupted. It's not that they don't enjoy being home or that…

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January 21, 2019

Inspirational Posts / My thoughts

Hey #Autism parents, you’re allowed to have bad days

As an Autism parent, one of the things I've learned is the importance of being positive. Autism parenting can often be stressful and filled with challenge. It's easy to get caught up in all the stress and lose sight of all the amazing bits and pieces that can go along with raising an Autistic child. Yes, being positive is important. That being said, I'm not here to talk about being positive all the time because sometimes, the positive can be too hard find. Sometimes life sucks. Sometimes life is unfair. Sometimes, no matter how hard you try, you won't be able to see a light at the end of the tunnel that isn't a train. I've had countless moments over the years where I'm so incredibly overwhelmed by everything, I…

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January 21, 2019

Autism Parenting Struggles / My thoughts

We’re about to be hammered by Mother Nature

We're currently bracing for the worst winter storm we've had in awhile. It's definitely the worst of the year because we've not had much snow at all this winter. We're supposed to be looking at up to a foot snow and blizzard conditions over the next 24 hours. I went to the store last night and made sure we had food and anything else we may need. We're making sure all our portable power banks are charged because losing power is a possibility. Losing power would be a real challenge for us for a number of reasons. We'd lose heat and that's obviously a problem. A less obvious reason is that some of our kids do not do well in the dark. It's so bad that they need the lights…

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January 19, 2019

My thoughts

I screwed up this morning

I'm not off to a good start this morning. I'm sitting in the office at Stark County Community Action because I have to recertify PIPP or percentage of income payment plan. This helps to control the cost of utilities. Anyway, I made sure that I had everything I needed going into this appointment but I screwed up. I needed my 2017 taxes and I accidentally printed my 2016 taxes instead. This might be a problem and cause me to have to reschedule. It's really frustrating because it was a stupid mistake and that mistake may cause us problems. I have the correct tax forms on my phone and I'm hoping they can show use those.

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January 18, 2019

Emmett John / Fever Cycle / My thoughts / PFAPA

This is heartbreaking

Mr. Emmett is home from school today because he's not feeling well. He's been struggling with his fever disorder related mouth sores and he's just reached a point where he's sick to his stomach. Poor Emmett didn't sleep much last night and is too much pain to go to school this morning. There's very little we can do to help him. Advil doesn't help and we can only numb his mouth up to three times a day. It's heartbreaking to see him go through this. I desperately wish the was something we could do to relieve him of this condition. 😔

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January 17, 2019

My thoughts

Unexpected change in plans

It's been a longer day today and that's not always a bad thing. I have the boys at therapy but after waiting for about 30 minutes, our therapist came out and let us know that she'd changed us to 5 PM but forgot to tell us.. Opps.. We're already halfway there and the kids are doing okay, so we shall wait..no big deal. ☺ Pardon my French but, shit happens and if we don't learn to roll with the punches, we're gonna get knocked the fuck out. I'm struggling today on an emotional level because I'm very preoccupied with my upcoming oral surgery. Depression has these thoughts playing on a loop inside my head and my newest uninvited emotional houseguest anxiety, is feeding off of that. That said, I'm working…

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January 16, 2019

My thoughts

I really need this right now

Today was a bit unexpected as it began with a snowday. I'm aware that we're watching a winter storm for this coming weekend but I didn't know anything about an ice storm last night. Anyway, everything was glazed in ice this morning and schools were called off. We didn't have any plans for today aside from school and therapy later this afternoon. We just ended up hunkering down with some movies and riding out the morning weather. We're just finishing up Jurassic World: Fallen Kingdom. I've already cleaned off the car and I'm hoping to go walking soon. There's no part of me that really wants to go but that's why it's so important that I do. Walking helps me work through some of my anxiety in a healthy, productive…

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January 16, 2019