Growing up in the deep south, we were taught manners at an early age. I have always tried to be mindful of other people's feelings and consider myself to be a tactful person. Unfortunately, I have found that this is not true with all people. Maybe I have become more sensitive to Noah's diagnosis or maybe I just notice it more but I have found that a lot of people need to use more restraint and better manners when discussing special needs.
When Noah was in the hospital before getting a diagnosis, we saw so many doctors and professionals. One of these was a geneticist who was suppose to be an expert in his field. I will never forget the day we got a call from the hospital telling us the geneticist would be there to meet with us. The call came only an hour beforehand so there was not much time to plan. Chris rushed home from work, we had no time for a sitter so we loaded the girls in the car and headed to the NICU. Because of the swine flu epidemic, the girls were not allowed in the NICU so we had to make them wait in the waiting room. Chris and I were sent to a small conference room to wait. After about 15 minutes, the NICU doctor and the geneticist entered the room. They proceeded to ramble on about the tests they had performed and informed us that all of them were normal. The geneticist looked us straight in the eyes and said "Can I tell you I feel good about Noah? No, I cannot." Now how in the world were we suppose to process this information? We took it to mean he was at death's door. As they looked at us with pity, we were devastated. After he told us this, they ended the meeting by telling us that "we could always hope for the outcome that we wanted as long as we had no answers". What??? Basically, they gave us no hope whatsoever.
Not long after, we were visiting Noah in the NICU when the other doctor came over to us. She explained that they were testing for a rare disorder of CCHS. She then informed us that he would be in an institution the rest of his life, handed us a short, uninformative page from a medical journal, told us she would allow us to "process this information" and then walked off.
We were left with the thought that Noah was close to dying and if he did survive, he would never live with us and wold be in an institution the rest of his life. There was no more hope. The despair was overwhelming.
Looking back, I realize that these so called doctors had no tact. There is a right and wrong way to give information like this. In retrospect, they should have started by telling us the good news. For instance, they could have told us things he did not have and explain that other than the unexplained desats that he was healthy. Apparently, they saw being on the vent as a death sentence.
Not only do the doctors/specialists have no tact when dealing with CCHS but other special needs parents can also. There was a mother recently who I met on one of the special needs facebook pages. Her daughter was undiagnosed but had many of the same symptoms of CCHS. Several of us CCHS parents had tried to help her. She constantly asked questions and when we answered them, she would ignore the answers. One day, she posted on our CCHS page that she had gotten the CCHS test results back. To paraphrase her post, she basically said "thank God my kid doesn't have what your kid has". Then she proceeded to ask us why we thought her child had apnea. Seriously, who gets on a page where people have done their best to help you and then act so thankful that your child doesn't have the same diagnosis. Plus, have the nerve to ask us what we thought was wrong. Thankfully, she was removed from the page. Another mother in the same situation was also asking questions. We kept telling her that it was important for her daughter to be on the vent until the diagnosis was made and she kept making excuses like "we don't have a battery so we aren't taking the vent on vacation". We kept urging her to get second opinions and all we heard were excuses and things like "I'm planning on" or "I'm going to" ask such and such doctor when we go back. Eventually, we stopped answering her altogether. It is beyond my understanding how people can act this way.
When dealing with a diagnosis like CCHS, it is important to be positive and encouraging. Parents are dealing with enough worries and do not need to hear negative comments. One can be supportive without being tactless.