All about raising a child with complex health issues and school

My wife and I face many challenges in our life. At the moment, one of those challenges centers around our youngest, Emmett. Emmett is eight years old and absolutely loves going to school. He loves learning and excels academically. 

Unfortunately, Emmett faces challenges that interfere with his ability to attend school sometimes. 

Between Autism, Anxiety, Sensory Processing issues and a rare fever disorder called PFAPA, we never know of what’s going to happen. 

The sensory issues alone are more than a handful at times. Sensory issues impact people in different ways, and in Emmett’s case, eating and wearing clothes present a multitude of challenges. The one that will keep him home from school the most often has to do with not tolerating anything on his feet. 

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The other most common issue that interferes with school is this fever disorder. It’s frequency is no longer predictable but it’s arrival is unmistakable. 
In this case, Emmett will run a fever, even though he’s not sick. This fever can last for up to ten days. During this time, he doesn’t eat much, has problems sleeping, is extremely grumpy, breaks out in very painful mouth sores and like I mentioned above, will run a fever. 

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There’s no test that can say for sure if he’s in a flare. All we can do is look at the symptoms and his behavior. 

We actually had to do this today for the first time in almost a year. 

It’s overwhelming, frustrating and worrisome because while the school understands, how far with that understand go?  

Figuring out the right thing to do is very difficult. 

We don’t want him to miss too much school but at the same time, forcing him to go when he’s in a bad place is absolutely counter productive. We have no problems challenging his limits but we also have to balance that out with compassion and knowing where to draw the line. 

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I guess the point of all this is to give you a bit of insight into some of the decisions we have to make and challenging situations we have to manage. 

I’m happy to answer questions and I’d love to hear your experiences in this area… Please leave your feedback below in the comments. 

One Comment

  1. kimmy gebhardt

    Question- when he misses school because of his shoes/socks, what does he do all day? On those days when he doesn’t go, you still have to drop Elliott off and you could get his assignments for the day to help ensure that he doesn’t fall behind. Excelling academically is great, but at some point he will fall behind if he continues to miss so many days. You and Lizze are both home so why not have ‘school’ at home so that he’s still in a learning environment?

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