Hopefully when you received the diagnosis, you were told in a sensitive, supportive manner. Perhaps the professionals helped you understand what to do next. As you can see from some of the quotes above, not all parents have a positive experience. If yours was not a positive one, you have the chance to turn a negative experience into an opportunity to educate the professional.
In an effort to convey information accurately to parents, professionals sometimes forget that they are dealing with parents who are receiving news that they were not prepared to hear.
Most professionals strive to provide the best possible services for our children, and input from parents can be very helpful to them.
Letting them know how this affected you, and suggestions on how they might better present information to parents may well make a difference for parents who follow you.
Often the very first information parents receive from a professional is information that may rock their world.
How this information is presented and interpreted often sets the stage for all future interactions between the parent and the professionals who will serve their child for many years to come.
I think everyone was very cautious in what they told me. One day I was talking on the phone with a professional and I must have been totally clueless. She said, "Hannah is deaf…I mean deaf." That was the first time I heard that term! I appreciated the previous cautiousness, but I especially appreciated the boldness of that professional – it was what I needed to hear.
We were told by the audiologist in a very professional and caring environment. She cried with us!
While the ABR was being done the technician talked to her assistant about my daughter as if she was a research subject. When they finished, they told me the results in very technical terms that were foreign to me. After about five minutes I stopped them and asked if this meant that my child could not hear, and they looked at me like they couldn't believe I'd even asked that question. I left not understanding the results. Fortunately, my daughter's Pediatrician cared enough to call me that afternoon after he received the results. He explained everything clearly, asked how I was doing, and told me what we needed to do next.
The Ear, Nose and Throat specialist told us that our daughter was profoundly deaf. He was mildly sympathetic, but offered little in the way of further assistance. He simply made the diagnosis and that was it. We had to go home and deal with the rest ourselves.
We were told over the phone by our Pediatrician nearly one month after the test was done. Fortunately, the Pediatrician was very sensitive.