Perfectly Paisley { The Journey of Autism }

Perfectly Paisley { The Journey of Autism }

After several miscarriages my husband and I gave birth to a beautiful little girl we named Paisley Opal in 2008. Paisley was born early due to complications and spent the first week in the NICU. Upon bringing her home it was followed by weeks of intensive care to monitor her heart and oxygen levels . But none of that mattered. We were thrilled and considered her life a blessing.

Paisley was a unique baby girl, she hardly ever cried and preferred to sleep in her crib from the start, she was quite. It was about 15 months into being her parents that we noticed a significant change in the progress of her development. You all know those signs as parents when your child is to meet the basic mile stones of development, our little Paisley stopped progressing, stopped making eye contact and even wouldn't eat certain things.

I was concerned that something was wrong so I took her to her pediatrician, but to no conclusion I was dismissed as an overly concerned mom, who was anxious due to past miscarriages and complications. Her decline was not slow, in fact it was abrupt and what I would consider violent. Our sweet Paisley went from being content and interactive to no interaction what so ever, to starring off into nothing, to banging her head on the walls and scrapping her nails past the wick to the point of bleeding with no registry of pain. She began to choke on her food and instead of swallowing she would play with the food in her mouth.

We took Paisley back to her pediatrician and explained what was happening to our little girl and my concerns were just increasing. Again I was dismissed and told that every child develops differently. Our problems increased daily and leaving the house as a family became tremendously difficult. We noticed that most things we did with Paisley as simple as activities of daily living had to be done in sequences of three.  We had to sing certain song to calm her extreme melt downs. She stopped making sounds all together. I felt hopeless, I knew that something was happening with my little girl but could not get any help. Thus began my husbands and my mission to unravel the mystery of our Paisley.

Because I couldn't get the attention of her pediatrician I kept a three week journal of everything Paisley, from the foods she was given there times, our daily routines, house moods, behaviors she displayed and the way we tried to redirect them and how many times we tried, melt downs, what was happening prior to them and how we calmed her down. Things she tended to enjoy and her overall cognitive functions. During this time we started to research how to put a name on what Paisley and our family was experiencing. After 3 weeks of doing this I made another appointment and the pediatrician would not look at my journal and I was frustrated. So I asked to see a different pediatrician who echoed the first. So I continued what I was doing. It was when Paisley was nearly 2 that I finally got her pediatrician to believe me. I had taken her to the doctor again and by the mercy of God Paisley began to demonstrate self mutilation tendency's and I didn't try to stop her. Her behavior became disruptive for the doctor, so when the doctor tried to stop the behavior with out success, she gave me a referral to a Washington program called Birth to Three.

During this time my husband and I had discovered that we were experiencing what most parents of children with Autism would describe. We also discovered the many hardships these families faced, and the difficulties children, people with Autism Spectrum disorder experience. We had our first evaluation, but because Paisley was to young to receive a diagnosis we were forced to settle with possible Interactive Sensory Integration Disorder.  In short Paisley wasn't able to process basic sensory functions. We were assigned two wonderful therapist who would later become part of our family is a huge way.

Here are some of the things we were dealing with before her official diagnosis.
Screaming for hours
Hitting her self
Hitting her head against the wall
Biting her self
Not eating
Loss of ability to swallow
Staring into nothing
Would not look at faces but past them
Would not respond to voices
Decline in mobility from walking to crawling to scooting along the floor
Would sleep for hours on end
Couldn't take her anywhere without screaming to the point of vomiting
Melt down triggered by certain songs / tones / smells / lights

She responded well to the following things.
Light touch in certain places
Heavy or weighted objects laying on her
Covering her eyes and putting her in a blanket to swing her
Singing certain songs
In sink breathing
Pattern lights
Door bells

More to come on the next blog: