Developmental Pediatrician

We had our appointment with the developmental pediatrician on 3/5. I have very mixed feeling about it. The dr that evaluated him says he is only 4 months behind developmentally. No one including his pediatrician believes that. When he is around children that are 18 months or older it is in your face how far behind he is. The dr did not see him interact independently. Every test he did was with Connor sitting on Joe's lap. Any one who works with him knows that what you see when he is "contained" in a chair or lap is not what you see when he is on the floor on his own. (it is now believed that this is because of all of his sensory problems). He did not watch Connor play & see how he doesn't really play. He paces, stops looks at a toy for a few minutes and then starts pacing again. Anyway, even with all he didn't do, he has diagnosed him with PDD-NOS. Which means Pervasive Developmental Disorder No Origin Specified. So, the long and the short of it is that Connor does fall into the autism spectrum. There is a great web site Autism Speaks that explains PDD-NOS if anyone wants a better understanding of this. http://www.autismspeaks.org/navigating/pdd_nos.php .

Connor has started Occupational therapy. He has so many sensory problems that they are going to try a special music program. It works with the brain to try and make some of the connections that are either not connected or broken. He is stimming so bad lately that I don't know what to do. He is also getting more and more violent. I getting so that I don't know how to handle him anymore. I am covered in bruises. He will be slamming his head into you one minute and hugging you the next. He paces around the living room in a circle humming the whole time for an hour or more at a time. Julia is becoming afraid of him because you never know what is going to set him off and he will start hurting you or himself. Because he doesn't feel pain like a "normal" kid we have to be very careful when he does start to flip out. Walking away from him when he is like that doesn't work because he just turns the violence on himself. I am really at a loss.

We are trying to get him in with a Neuro Doctor outside of CHOP for a second opinion and to see about another round of IVIG for him. Unfortunately we are not having any luck. I have called DuPont Children's hospital and Bristol Myer's Squid Children's Hospital (Robert Wood) and neither one is taking any new neuro cases. I don't know if they really aren't taking new cases or they heard we were looking for a second opinion and decided they weren't interested. Our pediatrician is now trying to talk to some dr's and get us in somewhere.

Connor will be ageing out of the Early Intervention program in September. They only take kids until they are 3 then they have to go to a special needs preschool. I am NOT OK with that at all. He will have to be on a bus because I can't drive him due to my disabilities and I don't even know how I will get him to the bus. I don't want him in a school so young. I know people do it all the time and I have nothing against it if it is right for them. It is not right for me. I didn't send any of my kids to preschool or day care. I know I need to send him so that he can have the best chance of a "normal" life someday but I am not OK with it and don't know how I am going to handle it when the time comes to actually put him on the bus scared to death. (he doesn't handle being away from me very well at all and doesn't handle new situations at all well). I just wish that our state did it more like NY. From what I understand they have early intervention till 3 yrs and then another program pick them up in the home until 5yrs of age & then they go to special needs school. I would be much better with that kind of program.

I will write again as soon as I know when and where we have a new neuro appointment. I am hoping it will be soon and not months away. Thank you all for caring and following Connor's story.