Friday, January 3, 2014

Gracie's Story

I realize many of my new readers don't know Gracie's Autism story so I have included below:

Let me first point out that the regression that I am about to describe is rare and is only estimated to happen in 1 in 70,000 children with Autism.

Gracie was born at 35 weeks via c-section on August 25th, 2008. It was the end of a pregnancy that had been wonderfully normal until 34 weeks when it was discovered that she had almost no amboitoic fluid and an emergency c-section was performed. Gracie was absurdly healthy despite her early appearance, she never spent a moment in the NICU, roomed in with me and went home with me.

Gracie hit all of her milestones on time and by the time she was 6 months old she was about a month ahead of her age. She babbled and cooed, around 10 months she started saying simple words, like ball, ma, and da. She walked at 12 months.

Gracie was a typical toddler in every way, she loved Elmo, puppies and babies, she watched Sprout, showed me everything she could see, and loved to play with her cousins. In 2010 we had two major changes to our family, we decided to give her a little brother or sister and we also decided move to the state where her brothers from her fathers first marriage lived.

In May 2010 we made the move and in October 2010 we welcomed her little sister Elizabeth. Gracie was 26 months old. The first sign that anything was different with Gracie happened when I brought Elizabeth home. I expected Gracie to either love the baby or to be intensely jealous, perhaps both. Instead I was surprised when Gracie had no reaction at all to her sister. I to include Gracie but she acted as if her sister simple didn't exist. I would be nursing Elizabeth and Gracie would try to sit on top of her, if I put the baby down Gracie never even looked at her. I was puzzled and asked other friends and no one had experienced such a thing, but we decided as long as she didn't hurt the baby or show aggression then we shouldn't worry too much.
For the next year or so Gracie stagnated in her development, I brought it up to her pediatrician, and he dismissed by concerns as that she was still on the spectrum of normal toddler behavior and adjusting to a cross country move and a baby sister. For the most part she was still a typical toddler, she loved her Elmo blanket, she preferred pink, and

I noticed that her tantrums were intense and that she needed routine and sameness. She had a hard time falling asleep and at times wouldn't answer to her name. I researched some symptoms and felt that ADHD was likely due to family history her symptoms.

We went back to our hometown for vacation right before Gracie's 3rd birthday and for the first time I noticed how different Gracie was from her cousins. They didn't have huge meltdowns over new shoes, or scream for hours over changes in the routine. I meet up with a childhood friend with a child with Autism and for the first time it crossed my mind my daughter might be on the spectrum.

I brought up my concerns to Gracie's pediatrician and he wrote the referral to see a developmental pediatrician for an Autism evaluation but it was a 6 month waiting list to see him. Right after Gracie turned 3 I noticed she was talking less, then within a few months not at all. Over the next 6 months she stopped identifying shapes, colors, and numbers.

By the time we got to her medical evaluation she was diagnosed with severe Autism and that she was functioning at about 12 to 15 months old.

Gracie is now 5 years old and sadly still functioning at the level of 12 to 15 months old, but as we enter 2014 we have new plans and some things coming up that we hope will help. I refuse to believe that all the skills, language and bright intelligence is lost. I have to hope that somehow we will be able to recover from the regression.

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