Cyler has seen a geneticist every year since his birth. She "followed" him in the NICU and performed genetic tests and such while he was there and continues this even now. Her big thing is that she wants to find a syndrome for him. I can't wrap my head around this. All of the test have proven that he does not have a syndrome and yet she continues this "research". Well during the last appointment I was completely dumbfounded by her. She claimed that he has Echolalia because he repeats what we say. I am not saying that it's not a possible because I have found in life that ANYTHING is possible. However, the day after the appointment Cyler began answering questions appropriately instead of just repeating what we say. She also let us know that we should be working more with him on his communication skills. This totally threw me for a loop because I personally work with him all day, EVERYDAY! I reminded her that he just had his trach removed in January and that he was unable to verbally communicate for 3 years. Personally I feel that he is learning by leaps and bounds. I find it absolutely amazing that this child that could not speak for 3 years is now putting 2 and 3 words together, can count to 10, and sing the alphabet song in less than one year. He also continues to use his "signs" to communicate.
She also informed me that his "dancing" is inappropriate and must be stopped. I can't believe this! When Cyler is excited he dances a little, I think it's great and at times have even joined him. The last comment she made before we left really made me cringe. She said that my husband and I were making excuses for Cyler. Excuses for not talking, not eating, etc.
My son has overcome so much in the time that he has been here and these are valid reasons for not reciting the dictionary and eating seven course meals in one sitting. My son spent 7 months in a NICU ,1 year hooked up to a ventilator, and 3 years with a trach because he couldn't breathe. He is still tube fed because he developed an oral aversion from being intubated and unable to eat for such a long time. We are extremely grateful that he CAN dance, CAN eat, and CAN talk!
