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Old 05-15-2013, 03:53 PM   #13
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UnderTheStars
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Re: How would you feel if your child's diagnosis was removed?

Quote:
Originally Posted by jen_batten View Post
Yes but now you cannot get, or will have a harder time getting support and therapies for his needs. I know that the diagnosis does not define the child, but sometimes it does help people understand behavior and react appropriately when dealing with a special needs child. For example, let's say your child has servere autism. To me it would be easier to understand the behavior if you knew what was going on. If they removed the diagnosis, not only do you have a harder time getting the help you need, but people would have a a harder time understanding. I think, anyway. So how would you feel?
I can relate to this only in the respect that my son has NEVER gotten a formal diagnosis. He has symptoms all over the place (feeding issues, heart issues, airway issues, urinary issues, OCD/behavioral issues, sensory issues) but NO one has been able to put any pieces together. And at this point a label wouldn't change anything about him, but unfortunately without that label we are struggling hard to get any support from our insurance company for his therapies and from the school. Every time they do a test to diagnose him and it comes back negative, I feel like I should be happy like everyone else is but instead I'm just....frustrated. The geneticists were almost positive my son had DiGeorge/22q Deletion Syndrome (as was I) and everything I read about it I found myself nodding along to. Well, he was cleared by genetics as not having it and I was honestly disappointed. I actually feel guilty about it, but I just need the closure. I need to know what we're dealing with, I need to know if he has a broad genetic thing that he can pass to his kids, I want him to be able to tell people "I have XYZ" when they ask, instead of saying "well I struggle with this, and this is hard, and I had surgery for this...etc...etc...".

If he HAD a diagnosis that seemed off or didn't seem like it "fit", I would be disappointed but glad to be on a new path to the correct diagnosis. If he had diagnosis that seemed to fit and then it were taken away and I was left in nowhereland? Frustrating would be an understatement. I'm sorry you are there right now.
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