Autism complicates everything for my family. Gavin is by far the complex child we have. By complex I mean he has the most difficult issues to deal with. Here’s the latest example. Gavin has a history of chest pain. We’ve had him checked out many times and everything is always ok. The reason for the concern is that on his biological father’s side of the family there is a history of spontaneous aortic ruptures or tears. Gavin’s biological aunt died recently during child birth and she was barely 30 years old. Gavin’s biological has heart related issues as well. We only have bits and pieces of information because they no longer have contact with us and even when they did they wouldnt tell us. So the concern is for good reason.
Gavin has myocardia (spelling is off and maybe the name as well). Basically his heart is in the middle of his chest instead of off to the side. Not necessarily a problem just unusual, I guess. Anyway, the problem is that all Gavin can tell us is that his chest hurts. He can’t do into more detail then that. If he tries it just doesn’t make any sense. So when his chest hurts we can’t ascertain any more information then “his chest hurts”. I was a paramedic for a long time and if I could get accurate information from Gavin then we could pick a direction to go in. Gavin is VERY general and so “chest hurts” could literally mean any number of things. So because we can’t take any chances we have to pack him up and take him to the hospital.
I’ve lost track of how many times we have done that. We do this because we have to and because we can’t get reliable information from him. Also the “one” time we don’t go it will end up being something serious. We can’t afford to take any chances with his life. So in that spirit, we will be putting everything on hold once more because Gavin says he is having “chest pain” again.
So after we see Dr. R for Gavin’s hallucinations we will be driving up to Akron Children’s Hospital to visit the cardiologist for another echo to make sure everything is ok. This may have been avoidable if we could get more reliable information from Gavin. This impacts more then just us because we have to pull Gavin out of school and find someone to watch the other 2 boys (and pick Elliott from school). This is all last minute so it’s not easy to find the help we need.
If Gavin were not Autistic then he would likely be in a position to better articulate what he is experiencing. This is just one of the MANY ways Autism makes everything so much more complicated then it might otherwise be.
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