Oh Happy Day.....

One happy young man with his new learn-through -coloring book on birds.

This afternoon I am celebrating the straight FAS diagnosis that Kudu received at the UM clinic.   It's been 11 years of trying to untangle and interpret the strange behavior and reactions of this hunky fellow - issues that surfaced when he was six weeks old and have continued to perplex and confuse our medical community ever since.

For years the best interpretation we could come up with was autistic, or autistic type behaviors but the diagnosis never quite fit. (Ok - it was a bad enough match to have our GP ask if I was sure it was his report and not another child's.)

Because of our Gp's questions I followed up with the autism specialists and was told that I was 'seeing my child as I chose to' (dr speak for being in denial) because I questioned their assessments of him as moderately to severely autistic and tried to explain where the label didn't fit.

It was hinted at that I was 'diagnosis shopping'  when I asked for a referral to the FASD specialists to have him evaluated. (grr....like I was supposed to blindly accept this totally wrong autism diagnosis from a team that spent one day with him?)

It was a huge relief today to have Dr Boys at the UM say that everything I have been pointing out for years - the FAS facial characteristics (he has all three), flattened pinna edges on his ears (not to mention bent pinkies and other secondary indicators :), growth patterns below the 10th percentiles (prior to puberty),  unusual behavior patterns, sensory seeking actions, executive function challenges, reasoning and memory issues - were not just a strange unrelated pile of issues.  Nope - they all have one basic name and that is FAS.  Not that I am happy he has FAS - I'm just thrilled that we finally have the right name and diagnosis for the constellation of issues which have been with him since birth.

The affirmation of my long-held but not confirmed diagnosis doesn't change much in our world.  But it does give us a better framework to understand his strengths and weaknesses and the opportunity to help him be the very best he can be.  Because most of the damage isn't on the outside where we can see it but behind that strong forehead - in the frontal lobe of his brain.