Saturday, December 12, 2015

Children's Healthcare of Atlanta Celebrates 100 Years

Last month I was contacted by a public relations employee at Children's Healthcare of Atlanta to share our experiences at CHOA to celebrate their 100 years in business.  I was happy to oblige.  This piece is featured on their website here.  

At 18-months-old in December 2013, my daughter, Harper-Lynn was speaking about a 100 words or phrases, lovable and joyful.  Between that time and 21-months of age she changed.  There were small things at first.  I can remember her starting to point to things instead of saying things like "juice" or "milk". Eventually she wasn't even saying "dada" anymore.  Harper-Lynn started wanting to play alone.  She seemed withdrawn and didn't really smile much. She also started developing odd behaviors.  I can remember putting Harper-Lynn to bed one evening in March 2014 and walking upstairs to my parents living room.  I sat on the couch and told them something was terribly wrong with Harper-Lynn.  I cried so hard.  My parents agreed with me.  She was no longer referring to them by "gramps" and "grammie" either.  The next day I called her pediatrician.  We started with hearing tests.  

Harper-Lynn had a sedated ABR at Scottish Rite.  The test was normal.  Our lives pretty much changed after that.  Harper-Lynn's pediatrician suspected Autism.  He wasted no time referring her for speech, occupational therapy and Autism testing at the Marcus Autism Center.  Our first appointment with MAC was in September 2014.  By that time, Harper-Lynn had started speech and occupational therapies.  She was making progress, but it was slow.  It was determined at that Sept. appointment that the pediatrician's thought on Autism was in line with the symptoms she was experiencing.  The doctor told us this as Harper-Lynn was lining up every children's book in the exam room.  My heart sank.  

Fast forward to January 2015.  Harper-Lynn was exhibiting extreme behavior by this point.  She would kick, bite and push me and my mom.  She would have meltdowns that would last for 30 minutes for reasons I couldn't understand.  We were referred to the Community Autism Program to work on behavior. I was definitely skeptical of the entire thing. The program is intense.  It's a 2-hour session once a week for 12 weeks.  It requires a LOT of work by the caregiver.  There's homework that basically is using all of the tools and strategies your taught during the sessions.  I was determined to help Harper-Lynn so I pushed through it for both of us! By the 3rd week I noticed a big changed in my daughter.  She was responding to 3-step compliance, excelling at "pairing" and other things we were learning.  While her meltdowns didn't stop, by the time the 12-weeks were up, Harper-Lynn was so much calmer and compliant.  For the first time in a long time, she wanted to please me.  It strengthened our relationship so much.

Harper-Lynn continued to make progress in behavior, speech, occupational, hippo and physical therapies that I was so confident our June 2015 for a complete psych evaluation would be a piece of cake and MAC would consider her not Autistic. 

On June 8, 2015, after a 3-hour evaluation I heard the words I never wanted to hear.  The psychologist said, "Harper-Lynn does have Autism Spectrum Disorder." I felt like I'd been sucker punched.  She took her time explaining to me her findings.  I couldn't disagree with any of them.  While I was so caught up in my daughter speaking again and progressing, I didn't notice she wasn't making eye contact and she still had many odd behaviors and sensory issues. 

Today we are still on this Autism journey and always will be.  Harper-Lynn continues to progress, but her odd behaviors and sensory issues remain.  I'm forever grateful for Children's Healthcare of Atlanta, the Marcus Autism Center and the amazing staff who has always made us feel like my daughter is their "only" patient.  I've met so many parents and caregivers the past year with concerns of Autism in their children and I always tell them to contact the Marcus Autism Center.