Why Autism is SO challenging for us

Autism is challenging for us on many levels. However, I want to focus on one area for this post. As many of you know Gavin is chocked full of challenges. He has also been experiencing these bouts of “pain” that no one can seem to explain. The latest of which was earlier this week with the pain in his lower right quadrant. We almost took him to the emergency room but the pain magically disappeared. So we opted instead, to see his pediatrician, again, for an eval and advice. He ran a battery of tests to try and identify an potential problems and suspected his gallbladder may be the problem. Well, we had the final test done very early this morning and it appears that gallstones are NOT the problem. We will have to wait for the rest of the results to come back to know anything else. So now that you are all up to speed I’ll get back on topic.

Autism, particularly in Gavin’s case makes even the simplest of things very complicated.  When it comes to anything illness, injury or pain related we are more often then not, left with more questions than answers. Gavin simply CANNOT answer questions about he’s feeling and where it hurts and how badly. He just doesn’t answer these types of questions in any way, shape or form that’s actually beneficial to anyone trying to identify the problem. It’s beyond frustrating when you ask him something like, what does his chest feel like when it hurts and he says something like, “it feels like a shovel”. With some of his bowel issues, he’s on a laxative and we have to try and track “things” to make sure the laxative is working. If we ask him a question like, Gavin, did you use the potty today at school, instead of the “yes or no” I’m looking for he says something like, “I think” or “maybe, I’m not sure”. It’s sometimes VERY difficult to believe that he can’t remember if he went to the bathroom at school. To complicate matters, the way his body interprets pain or maybe it’s just his pension for drama, makes it difficult to tell how much he actually hurts if he even hurts at all  as he does have a history of “playing”us.

Because of this inability to know exactly what’s going on, we have to always assume the worst. When he has chest pain we have to go tot he ER. When he has the abdominal pain, that has him flailing about on the floor, we take him to the ER. Majority of the time there ends up being NOTHING wrong. We spend HOURS upon HOURS each time we go through this. Oh..I forgot to mention that fact that Gavin tends to ingest things that were not meant to ingested. Things like paper clips, paper, books, carpet, his blanket/sheets/pillows even the paint off the walls (just to name the ones that aren’t truly disgusting) appear to all be on the menu for Gavin. So when he has the abdominal pain we HAVE to assume he has ingested something he shouldn’t have because he will deny it over and over and over again before he will finally admit what he did. I’ve lost track of all the ER trips to Akron we have made for that situation alone. Frustrating doesn’t seem to quiet say it.

Every time these things happen the entire family is put on hold in order to seek help for Gavin. Much like earlier this week, we have to do things like, cancel ALL of Emmett’s appointments for that day to make room for whatever is going on with Gavin. I get angry, not because Gavin may need help but because many times it appears that it was either made up and nonexistent or self-inflicted. I’m running out of patience for these situation. When we have to put EVERYONE’S life on hold for these things there is a heavy price. This week it was Emmett having to miss school, speech and OT. All things he desperately needs. I’m not saying Gavin condition this week was fictitious at all, just speaking to the impact it had this time. I’ve shared with Gavin the story about the “boy who cried wolf” but clearly that’s an ineffective approach. I hope all these tests come back and show that Gavin is healthy and that there aren’t any problems. At the same time that will also make things even more frustrating as we won’t know for sure if it even happened in the first place. For now, Gavin + Autism = a mystery, all wrapped up inside an enigma.

Is Gavin making these things up? Much like the tootsie pop commercial that asks, “how many licks does it take to get to the tootsie roll center of a tootsie pop?”, the world may never know………..

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Brian

I'd like to share a quick story about my spouse. Two years ago she suddenly started complaining of pain in her abdomen. We took her to the ER and that started a period of nearly 3 months spent in and out of 3 different hospitals. They kept looking for gallstones and never found anything. Finally they did an MRCP and found that her gallbladder was almost completely destroyed. All the other tests they ran – ultrasounds, MRIs, hydascans, etc showed no issues with it. However, the pain was mostly from the pacreatitis that the diseased gallbladder had caused. This was diagnosed by examining the results of daily LFTs.

I don't tell you this to scare you but rather to point out that a simple ultrasound is NOT enough to rule out gallbladder issues.

Kellie

Gavin and all of you are in my prayers, I hope its nothing serious. Just know that you are a great dad and even though Emmett may miss out on vital therapy at least your sure that Gavins health is ok. God I know how hard it is with hugh not knowing whats wrong but to have Gavin and Emmett that cant tell you most be horrible. I hope Emmett is ok today as well.

bleu

I agree with the response, you just never know. DS had claimed to have something in his ear and I just wasn't sure, because his communication is limited, but I rushed him to the after hour pediatric care and sure enough there was something in there. You just never know.
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kibblesbits

I worry not just about the trips to the ER for 'no reason', but the trips I might miss because of communication problems. It can go both ways, but luckily we're in a small enough community they understand and are pretty ok about it (and large enough to get excellent medical care). And I think that's what matters a lot, that the people who see you in the ER, at the doctor's office, all that, are ok about these things.
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Lost_and_Tired

Your exactly right. Our fear is the one ti me we DON'T respond in this manner it will turn out to be something serious. Now with Emmett, we experience the fear of missing something because he can't communicate. We're dealing with that today, actually.

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