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.



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.

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.

I’ve prayed countless times for God to let me carry his burden but it never happens. I can’t even begin to explain how horrible I feel because I can’t take away his pain or ease his burdens in any way, and in many ways, I feel like a complete failure as a parent because of that. I know that’s irrational, but I think many parents in similar situations will understand what I mean by that.

I can get so wrapped up in helping him survive a flare that I lose track of the other things I’m responsible for. If it’s not Emmett, it’s Elliott or Gavin that’s in need of my undivided attention. Frankly, if there were three of me it still wouldn’t be enough.

It’s incredibly easy to lose track of many of the other things in our life like bills, appointments or something as simple as laundry. When my child is suffering, I end up with blinders on that limit my field of vision to what’s most important at that moment in time. Unfortunately, the rest of life can frequently take a back burner to things going on with my kids.

I don’t expect you to fully understand what myself or other parents go through in regards to our special needs kids. I do however, hope that a tiny bit of insight I’ve provided will help you gain a bit of perspective.

No one has to fully understand someones suffering or pain in order to show compassion and that’s all I’m hoping comes out of this post. If there’s someone in your life who’s dealing with things like this, you don’t have to get it but you could still extend kindness to those less fortunate.

Take a second and answer today’s Autism Parenting poll

Does your child with Autism have issues sleeping?


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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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kimmy gebhardt
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kimmy gebhardt

Those sores look awful but I’m sure you already knew that. I don’t know if it would help (or if Emmett would use it), but there is something called ‘Magic Mouthwash’ that I was given during chemo that might help him. Lots of chemo patients get mouth sores and the MM is wonderful stuff. Also, have salt water rinses ever helped? Or even salt water and cider vinegar? Lastly it looks like he has gotten blistered or super dry around the top of his lip near his ‘mustache’ area, poor thing. Sores in the mouth are bad enough without adding… Read more »

adriannecollee
Member
adriannecollee

Those sores look awful but I’m sure you already knew that. I don’t know if it would help (or if Emmett would use it), but there is something called ‘Magic Mouthwash’ that I was given during chemo that might help him. Lots of chemo patients get mouth sores and the MM is wonderful stuff. Also, have salt water rinses ever helped? Or even salt water and cider vinegar? Lastly it looks like he has gotten blistered or super dry around the top of his lip near his ‘mustache’ area, poor thing. Sores in the mouth are bad enough without adding… Read more »

Rob Gorski
Guest

Thanks Kim. Oh yeah, we know about MM. His immunologist tried that a long time ago but he tried it once and never touched it again. His top lip was a milkshake mustache.. Lol He’s getting these on the inside if his cheeks and they rub up against his teeth. He also typically gets these going down his throat as well. It’s heartbreaking… The only thing that stops them is steroids but we had to stop that because it causes other problems. I appreciate the concern as usual and thanks for suggesting the MM. We’ve already tried that but someone… Read more »

adriannecollee
Member
adriannecollee

Yeah, MM is pretty bad but it does the trick and helps the sores heal more quickly. Maybe now that he’s a little older and understands how it might help he will try it again? Also, I have been making milkshakes for my dad to keep weight on him during cancer treatments. I have been mixing vanilla Haagen Dazs, chocolate syrup, peanut butter, and heavy cream for a shake that is 1300 calories for just under 2 cups of liquid. It’s like an ice cream Reese’s cup and might help keep some weight on Emmett while giving him some protein… Read more »

Rob Gorski
Guest

Right now I’ve got him making shakes with almond milk and vanilla ice cream. I tried mixing vanilla protein powder in but he wouldn’t touch it. He also doesn’t do anything chocolate either. Great suggestions and I appreciate it.. I’ll have to keep trying…

adriannecollee
Member
adriannecollee

For calories use Haagen Dazs. I looked at a lot of brands and HD has the most calores- 500 per cup for vanilla. I used a cup of ice cream and 1/3 cup each of the peanut butter, chocolate, and heavy cream. You could skip the chocolate and just go with peanut butter for protein. Melt down a peanut butter and heavy cream and drizzle in on the ice cream.

Rob Gorski
Guest

So in other words, good for Emmett but bad for me…. ☺