Originally Posted by JJPlaycare:
I honestly feel like they just don't know. Its not a question of being honest or not. I have done my research on the heart condition as well as the syndrome. They have not and were honest that they havent researched about the syndrome because they wanted to get a diagnosis first before looking into the syndrome. After talking to the cardiologist myself I think she is the one making them feel and talking about it like its no big deal, because she made me feel that way because she said "they are treating him now to prevent adulthood issues" however I research online on medical worthy pages, his heart has worsened and now I am feeling that she isn't making it seem or sound like a big deal, but indeed it is. I am unsure why she is being so mild about it with the parents as well as me, but I think that is why the parents are acting the way they are and its not a question of being honest.
I don't know JJ
I got a feeling that their downplaying this is because they want him enrolled as a regular child not a special needs child. If it's "no big deal" then you have no more liability than any other kid.
It just feels wrong to me. It feels like they are trying to get you to take care of him with the knowledge that he is a special needs child but when the actual care of him comes into play they want you to just charge as a regular kid.
I will be totally honest with you and tell you that my first discussion with the cardiologist would be this worse case scenario: Can his heart withstand
long bouts of
extreme crying? The doctor needs to understand that he won't have an adult to regulate by action his crying.