Saturday, September 4, 2010


My son is 13 years old as of a few weeks ago.  It means something, I know, but birthdays just aren't the big celebration to him that they are to others -- like, say, my daughter, who pretty much demands that the world revolve around her for that one day!

I tried to blog about his birthday, but not much came of it from a neurotypical standpoint.  What has really been on my mind the last month or so is that we're in Year 10 of the diagnosis:
  • In March 2000, he stopped eating.  Everything.  Anything.  Post-traumatic feeding disorder with sensory food aversions, according to the doctor at the Feeding Disorder Clinic at Children's National Medical Center in Washington, D.C.
  • Over the summer of 2000, he had Occupational Therapy to address the above.
  • On September 13, 2000, the Feeding Disorder Clinic doctor told us at our follow-up appointment to stay the course with our interventions, but she really couldn't help us more because, by the way, he has High Functioning Autism or Asperger's, she wasn't sure because it's not her area and here's the phone number for the Autism Clinic here at Children's.  I will be forever grateful.
  • On September 13, 2000, I entered a post-diagnosis reaction state.  Crying any minute.  Sobbing on the shower floor.  Spiraling thoughts that couldn't be held.  Speculations about the future of this beautiful little boy -- how bleak they were.
  • On September 20, 2000, I realized that he was the same boy on September 13th at 2:17 p.m. as he was on September 13th at 2:16 p.m.  His diagnosis didn't change him.  His diagnosis armed us with the information we needed to make his future bright.
  • Late September 2000, my son entered the world of Special Education.
  • December 2000 - January 2001, he was tested at CNMC with the result of High Functioning Autism, later changed to Asperger's after retesting. 
    • January 2, 2001, at the age of three, he started school -- two years before he was supposed to.  I watched my three-year-old in his Cookie Monster jacket climb onto the yellow school bus and disappear around the corner.  I entrusted my child to the care of people with big hearts who worked in a system that functioned under the philosophy that he could have what they had available, and he couldn't have what they didn't.  In a system that limits the communication a parent can have with members of the school team to only the case manager.  In a system where little is given without parents' requests, demands, fights.  But I didn't know that then.  I thought that the people with the big hearts made the decisions.  And I held my arms wide when he got off that yellow school bus that afternoon.
    Since those early days, we've tried a lot of interventions, from music therapy to OT/PT/Speech by way of Adapted Aquatics, Social Skills groups, and medications.  We've fought with insurance, with school, and sometimes, with each other.  We've seen him grow, we've seen him regress, and we've seen him overcome.  These days, I see his mustache, I hear his deep voice, and I see that he's taller than the refrigerator.

    He has so far to go still.  But look at how far he has come.  He'll get there.


      Confessions of a Mother, Lawyer & Crazy Woman said...

      What a good mom you are! Your love for your son shines through in this post. He is lucky to have you! Hugs, J

      Lori said...

      He's amazing...just like his mom!!!!