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 have no known cause.

He’s never actually sick when these fevers hit, but the fevers impact his body nonetheless, and the fevers cause things like missed school because there’s no way to know for sure if he’s sick or not.

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The pictures above show one of the ways this fever disorder impacts Emmett. When a fever cycle hits, Emmett’s mouth breaks out in these extremely painful sores. No one has ever been able to find a physical cause for these ulcers, but they will fill his mouth and travel all the way down the back of his throat.

Emmett also has Autism and Sensory Processing Disorder. SPD impacts how his brain perceives sensory input. Unfortunately, these painful sores are made infinitely worse because of the way his mind perceives pain.

You can read back in the archives about Emmett’s fever disorder and how it’s evolved into its current form. The critical thing to know, is where he is at this point. There’s way more to the story, but you’ve just received the cliff notes.

As his father, my heart breaks for him because there is nothing we can do to stop these fever flares from happening. All we can do is provide very basic pain relief while keeping him as comfortable as possible. During these flares, he’s in so much pain that he barely eats. I’m barely able to get him to drink homemade shakes.

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When any of my kids are in pain or otherwise suffering, it’s gut-wrenching for me to be a witness to their anguish and not be able to do anything about it because often, there’s nothing that can be done. Especially in Emmett’s case, there isn’t anything we can do to help him. I spend a lot of time snuggling with him, desperately trying to keep him fed and hydrated, which isn’t easy on a good day.

These flares tend to last about ten days, and during this time Emmett will be extremely difficult to manage. It has in the past and will again bring me to a level of frustration where I just want the screaming to stop. Not only do I feel powerless but now I feel like a total asshole because I’m unable to maintain my internal demeanor. The guit is awful because while I know I’m only human, I also know that Emmett’s dealing with way more than I am.

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