Read more about the article My heart breaks for Gavin tonight
Autonomic Disorder / Gavin / My thoughts

My heart breaks for Gavin tonight

For the second night in a row, Gavin is going to bed sick to his stomach. I'm not sure what's going on but it was so bad that he went to bed before 6:00 PM. I don't think he's actually sick sick but it might be autonomic in nature. These could be mini to moderate crises. They aren't anything that will send him to the hospital but it's enough to knock him off his feet. When these things come around, the absolute best thing he can do is go to sleep. Going to sleep helps his body to stabilize and when he wakes up, he's usually better. We haven't seen anything like this in awhile and I could totally be wrong but the symptoms do fit. If he were to…

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November 7, 2017
Read more about the article We survived the day and have the pictures to prove it
Gallery / My thoughts

We survived the day and have the pictures to prove it

Today's appointments have me completely and utterly exhausted. Everything is okay with the kids and it does appear that Elliott is dealing with a fever disorder, pending some extensive labs. I'll fill you in on the details but while everything turned out okay, but the there were some problems. For now, here are some pictures from our day.. [foogallery id="67370"]

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November 6, 2017
Read more about the article Focusing on the positive
My thoughts

Focusing on the positive

Gavin's appointment with Dr. Reynolds went as good as it really could have. He's doing about the same and so there aren't any changes at this point. We're going to monitor his labs once a week from this point forward and try and keep everything the same until we get into Hematology. I don't know. Perhaps this is part of what's eating me alive? I'm so worried about Gavin and it's exhausting. I need to cope a little better because things aren't likely to get better, The reality is that things will only get worse as time goes by. I have to be able to deal with this in a healthier way. For right now, I'm focusing on the fact that Gavin is doing okay. I'm grateful for that and…

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November 6, 2017
Read more about the article Is this what a panic attack feels like?
My thoughts

Is this what a panic attack feels like?

I'm so fucking stressed out today and I'm not sure why. We didn't get off to a good start this morning but there are plenty of mornings like that and I don't feel like this. I'm completely frazzled and don't even want anyone talking to me. It feels like everyone around me is going in slow motion and I'm in a big hurry. This is all on me but I don't know what triggered this. I've only had a few actually anxiety attacks in my life and perhaps this is one of those. Absolutely everything feels insurmountable and there's this overwhelming sense of impending doom or that I forgot something extremely important. I feel like I'm going crazy and my body is shaky. The reality is that I'm depressed, exhausted,…

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November 6, 2017
Read more about the article We were caught up in #Autism Hell this morning
Autism Parenting Struggles / My thoughts

We were caught up in #Autism Hell this morning

The boys had a horrible morning. There are some days that as a parent, Autism kicks my ass up one side of the street and down the other. Today is one of those days. Elliott sorta worked through his struggle but Emmett was another story all together. Poor Emmett wouldn't wear a shirt and it took until after 8:30 AM to get him in the car. By that time, they both missed breakfast at school and that only compounded the issue. I think a large part this mornings nightmare was the result of anxiety related to getting his flu short this afternoon. I know that was the case for Elliott as well. Emmett spent all his resources trying to cope with his anxiety surrounding his pending flu short, that he…

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November 6, 2017
Read more about the article Perhaps you can learn from my mistakes
Autism Parenting Advice / My thoughts

Perhaps you can learn from my mistakes

It's such a fine balance when it comes to telling a child with Autism something that's' going to cause any type of anxiety. It doesn't matter if the anxiety is waiting for a package to show up in the mail or knowing they are getting a flu shot. Speaking to my personal experience, my wife and I try very hard to limit situations like this whenever possible. There are times in which it isn't possible or we make the mistake to saying something a head of time with the goal of preparing them for an upcoming event, either good or bad. We are currently dealing with two kids who are terrified of getting their flu shots. most kids don't like shots but they are a very important part of maintaining…

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November 6, 2017
Read more about the article Today will be nonstop appointments
My thoughts

Today will be nonstop appointments

It's going to be a crazy chaotic kinda day. The boys go to school in the morning, and I immediately take Gavin for his blood work. From there we head straight to Dr. Reynolds office to follow up on Gavin's labs and decide if we are going to pull the Clozapine. Shortly after we finish up there, we have to pull the boys from school and head to Cleveland for an appointment with their immunologist. Emmett's appointment is a follow-up, as is Gavin and Lizze's. Elliott's is a follow-up as well but with the added issue of his near constant fevers. I'm not sure how that's going to go. After that, all four of them will likely get their flu shots. As I'm not a patient there, I'll be going…

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November 5, 2017