The Diagnosis

Grace with her sisters - the summer before kindergarten.

The summer before kindergarten I knew that we were at a point where we needed a “real” diagnosis for Grace.  Based on previous experience I had no idea how Grace would perform in school.  Would she have a kind and supportive teacher who understood her needs or would she be expected to conform to rigid and unreasonable standards?  Would she retreat to her corner in the room and refuse to participate or would she fit right in?  Furthermore, Sensory Processing Disorder, while recognized by the medical community and especially occupational therapists is not recognized by insurance companies not necessarily a viable reason for a child to be placed on a 504 or an IEP in a school setting.  In addition, I did not think that SPD was the only issue that Grace was fighting. Over the past year her doctor (Dr. G.) and I had become more and more confident that Grace did, in fact, have Obsessive Compulsive Disorder.  The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-4) has specific criteria for diagnosing OCD.  

Here is a link to a webpage about the diagnostic criteria for OCD  www.healthyplace.com/anxiety-panic/ocd-center/obsessive-compulsive-disorder-in-children-and-adolescents/menu-id-60/

Grace clearly fit the criteria.  In mid June of 2009 we met and she officially diagnosed Grace with OCD.  Grace was 5 years old.  While not common for children as young as 5 to be diagnosed with OCD, it is not unusual.  Children as young as 2 can (and do, as we saw with Grace) exhibit full blown OCD.  

This may be difficult to understand, but I was happy.  In fact, I was more than happy.  I called my family and friends to share the good news and was met with, “I’m so sorry”, and “Well at least now you can move on”.  I wanted to shake everyone to make them see how I felt.  Our 2 1/2 year battle for a diagnosis was over.  All this time I had questioned myself, wondered if I was going crazy, waited for that final, official word so that I could begin to find the correct treatment.  Finally we had the answer we were waiting for, but really nobody to share our joy with.  How do you tell someone you are happy that your child has OCD?  In the end I simply felt alone again.

A week later I met with the 504 coordinator, the kindergarten teacher, and one person from the supported education department at the elementary school where I worked at the time, and where she was scheduled to attend in the fall.  I shared with them many details about Grace and we reviewed the report from Doernbecher as well as from Dr. G.  We arranged for her to have a picture schedule, and a daily sensory pull out time.   I also made allowances for her to have extra transition time and work time as needed.  At the end of the meeting I felt confident that Grace would be in good hands and that everyone on board cared deeply about her well being.  I felt that we had a solid plan in place for her to start kindergarten and I was looking forward to teaching part time and volunteering in her class.  Little did I know how much things would change in the next two months!