Sunday, February 26, 2012

A diagnosis isn't always good news...

Over the next few years I explored various areas of concern always coming back to Fetal Alcohol Syndrome.  Though my formal education was minimal in this area I had read enough about FAS to consider it. At different times I took K to see two very well respected pediatricians in the city and inquired about this specific disorder.  Their responses greatly saddened me, one straight out said, "She can't have fetal alcohol syndrome because she's not Native American" WHAT?! I honestly tuned out after he said that.  That was the most unprofessional (not to mention racist) opinion I'd ever heard.  The other specialist gave her a very thorough look over in his office and confidently said, "She isn't Autistic and she doesn't have ADD or ADHD.." he scratched his head a little and said "but I can prescribe her something for her aggression."  Oh thank you wise doctor you just told me you have no idea what is wrong with this child but you would like to drug her. Thanks but no thanks I think we will pass. 
Over the next few years we watched as T caught up and quickly passed her older sister, first to read, first to do everything.  It is not a problem when you are 5 years old and your 4 year old sister can read you stories.  When you are 8 years old you start to catch on to the fact that as the bigger sister you should be doing more than the younger sister.  K began to be very aware of her needs in comparison to her little sister.  We choose to homeschool K & T because there was still no explanation for K’s slower development and we hoped that more one on one attention would help. At the time it didn’t seem to do much more than give T an excellent start while every day was a battle with K, because, according to the professionals, she was simply playing me and being lazy.  Looking back I think if nothing else these early years where she was read to everyday and encouraged in her abilities contributed to her current love of reading.  
It took eight years to meet the man who would change our lives and give us an understanding of K's behaviors and lack of age appropriate development.  We met Dr. Ted Rosales from Newfoundland online and as timing would have it there was soon to be a conference on FASD being held on Prince Edward Island.  So we packed up the family and headed for the island. Dr. Rosales was a speaker at the conference and very graciously took time from his schedule to consult with us in our hotel room and give us his opinion on K.  He was so wonderful, he sat back and watched her for a while, she was on her very best behavior.  We have always said K could live “happily ever after” in hotels.  Dr. Rosales approached her slowly after he saw she was comfortable with him and it was so encouraging to see a professional who knew how to interact with K.  During his consult he looked at photos of K from birth to current age of 8. The facial features of FASD become less evident with age, so younger photos are helpful with diagnosis. He also measured her cranium and looked at her hands & fingers. He was unequivocally certain of her FAS diagnosis, though he said he would rate K as having fetal alcohol effects, because she has an IQ in the very low normal range and her physical features have lessened significantly over time.  He warned us that FAE is more difficult to advocate for than full blown FAS because she will “appear” to be more capable than she is but her brain is equally as damaged as a child with FAS. He asked me many questions about our previous consults with other physicians.  He was surprised they could not reach this diagnosis.  

K age 8 photo taken prior to FAE diagnosis
Here is one of my favorite informative charts about FASD - it isn’t the exact one I was looking for but it gives a good idea of what it “appears” K can do and what her “ability age” is and forever will be.  Now at 17 she has reached her maturity and ability level.  Our sweet girl will be eight years old forever and you will never catch me saying, “I wish they could stay small forever..,” because one of ours will and it hurts to know the dreams we had for her and the dreams she has for herself died the day we got that formal diagnosis.

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