Sullivan will be 4 years old this November. This past August he was diagnosed with PDD-NOS. This was not shocking for my family and myself, we have been labeled as "at risk" for sometime by various agencies, but this is the first time anyone has said, "yes, you have a problem". In few short months, I have learned a lot about PDD-NOS and have also learned that many other people do not know what PDD-NOS is or have never heard of it. In short, it is a form of Autism, more accurately, an Autism Spectrum Disorder. Basically, to be diagnosed with PDD-NOS, you have some components of autism, but not enough to fit neatly into the category so you end up here. This makes sense to me, we have massive tantrums, we are obsessive, we are unable to play with others...the list goes on but you get the gist.
My real issue lies not with the diagnosis, but with the lack of support from the medical community. My family and friends supported us thru everything, being asked to leave our "typical program" preschool, our out bursts and breakdowns, they stuck with us thru all of that. They also were right beside us when one of the leading medical institutions (which I will not name) treated my son, myself and my husband like a bother that would not go away. I believe their exact words when I asked for testing was "I can tell you wont be happy unless we do this so lets just do this". In the end their report revealed (surprisingly) that my son was accustomed to throwing tantrums and getting what he wanted and that my husband and I needed to take parenting courses. Another example, my sons pediatrician, who I love, said to me when I raised my concerns, that "he makes eye contact and I am sure he draw a circle, he is just shy). This list of dead ends goes on and on, but on the other end, from people who have spent time with him, the list of those people goes on and on. The reviews from his previous preschool, the results of behavior analysis, the sensory OT, the public preschool, my friends and family, and my self, all of these people kept me pushing. I realized, I could keep going and find someone to help us, or I could give up and accept that this was it. So I had him evaluated again, by a neurologist, and here we are today.
The point I am trying make with this jumbled, poorly organized thought, is that I knew something was different. I saw it everyday. I felt it at parties, out at stores, at bath time. And had I stopped when strangers that only knew my son for hours, not even enough to equal a day, told me to stop, my son would be lost. We would have none of the opportunity we have now, this proverbial door that opens to you when you have a medical diagnosis is amazing. We now have at our fingertips the names of multiple supports with in the ASD community. The lesson I take away from this journey, is that is not easy, they do not make it easy for you. Even with all of the "Early Intervention" promotion, I had to struggle and doubt myself daily. You know when something is wrong, no one "wants" to have to prove something is wrong, but you may have to.
Why all the Spidermen you ask, it's Sullivan's thing;)
