Sunday, October 24, 2010

The Latest and Not Necessarily Greatest News

After a tough couple months with our little Noah, we decided to make yet another attempt to find a diagnosis and get some treatment advice. Noah is still a happy and charming little guy, but his skill acquisition seems stagnant. Most directly effecting our day to day has been his behavior issues. He is out of control and difficult to manage pretty much anywhere outside our door. So, once again we head to the hospital for some answers.

For nearly four hours Friday morning we were at Doernbecher Children's Hospital. There a Psychiatrist and Developmental Pediatrician examined him and watched him play. The hope being that some sort of pattern would emerge in his behavior that would clue them in to what is really going on. So, once again Geoff and I retell his medical history, explain his behavior, diagram his skills. All the while wondering why this isn't recorded from the 120 other times we have had to tell some medical person all of this.

At the end of the appointment we were left with little more than shoulder shrugs. The developmental pediatrician is referring us to the Autism Diagnostic Team so we can retell our story again. She felt however, like us, some of Noah's behavior may fit with that diagnosis, but some of his behavior does not. Most significantly, I don't think you can receive an Autism diagnosis if you are engaged with people which Noah very much is, he just doesn't understand how to communicate appropriately.

The Pediatrician also called Noah "mentally retarded", which outside of the juvenile urge to say "no, you are" was no surprise. Obviously, that is an ugly phrase, the doctor even seemed hesitant to say it. However, over the last year Geoff and I have been quietly coming to terms with the likelihood that Noah is "intellectually disabled" and no longer just a child with delays. Again though, we are left with a blanket term, like Epilepsy, that is describing a symptom of something, but not a diagnosis on it's own.

When talking about treatments to help him we got more of the same. I don't know if it's a testament to our awesomeness, but we have been doing all of their suggestions since Noah was a year old. He is in Early Intervention, enrolled in CDRC (Childhood Development and Research Clinic) at Doernbecher, we have paid ungodly sums for private therapy, and I work with him constantly at home.

So, where do we go from here? We will meet with the Autism Team only because that diagnosis would open doors for more services at school. And then I think we will be taking a big break from the pursuit of a diagnosis. I think Geoff and I both walked away thinking the medical community just hasn't caught up to Noah yet. --Amy


  1. I can't imagine how madding it must be to go to the doc's over and over again and tell your story over an over again. I have had my recent bout with the doc's and it has been for 2 months. You have been through this for years. You are strong wonderful people and I admire all you do for your family. We are always here for you if you should ever need it or want it!

  2. Amy and Geoff my heart goes out to both of you. You are wonderful parents to both Noah and Owen. I am very proud of both of you. I wish I knew how to make things easy for you. You are in my prayers. Love, Aunt Doris