Tuesday, June 9, 2015

Joseph's Diagnosis - Or Lack There Of

   The other week, after sending several emails inquiring about it, we received Joseph's diagnosis from CHOP. When I read it I could have cried. He as diagnosed with ADD but was not diagnosed with FASD as he does not meet the criteria specified in the DSM. However they said they may diagnosis him with FASD in the future if his behaviors continue. What????? 
    At first I was speechless. One mom said her daughter's facial abnormality's (one of Joseph's missing criteria) were more noticeable as she grew older. So perhaps there is something to waiting until the child is older and then testing again.
   I honestly do not think Joseph has ADD. I feel his spaciness is a result of the alcohol damage. We were advised to push for a diagnosis of ARND (Alcohol Related Neurodevelopmental Disorder). We debated forfeiting our search for a diagnosis but Dean brought up a point I hadn't considered. Did you know it is considered child abuse to withhold a child from normal childhood activities? That can cause a very sticky situation, one we experienced first hand with Braden and CYS. If we have a diagnosis and are questioned about Joseph's activities or lack thereof, we will have a diagnosis to use in our favor. I realize that having a diagnosis won't automatically dismiss us if we ever faced such a situation but hopefully it would eliminate some of the possible problems.
   The next step was contacting a doctor on the Jersey Shore who diagnoses FASD. Thankfully I had the opportunity to speak with someone before we submitted all the paper work and got Joseph registered. She said that if Joseph didn't meet the criteria at CHOP, they won't diagnose him either. She spent a long time explaining why not etc.
    FASD is a spectrum disorder so while Joseph may not have the full blown disorder, he does fall within the spectrum. 
   I called the Kennedy Kreiger Institute in Baltimore to see what they had to say and I feel very optimistic. She said they can diagnose anything with in the FASD spectrum. YES!!!! I spent half an hour getting Joseph registered and answering questions. Now we need to get all of the insurance issue's resolved before we can actually schedule an appointment. 
     Joseph is steadily moving down the path of behaviors typical of FASD and we are going to need help sometime in the very near future. With that in mind I am slowly learning to voice my opinion when speaking with doctors in regards to Joseph's disabilities. 
    I am working out another insurance/referral issue with Schreiber and hope to get that resolved soon so Joseph can begin OT. He will be happy to go back to Schreiber as he always enjoyed the activities, even though he was worn out till the end of his appointment.

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