Our Autism Story

On August 8, 2008 when The Princess was 25 months old. A speech therapist, child psychologist and occupational therapist had visited our home and made their diagnosis PDD-NOS. Pervasive Developmental Delays- Not Otherwise Specified. The Princess had severe delays in language, fine motor skills and major sensory issues. She did not make eye contact and had stranger fear far beyond what was expected for her age. The Princess had tantrums that were legendary. We were expecting this diagnosis,  but at the same time, it hit hard.

Our journey with autism began sometime before that day though. When The Princess was just two months old, The King had received his first job in the education field as a para-educator in an elementary school working with severely autistic children. He would come home with admiration for the parents of his students. He couldn’t fathom how they managed things like grocery store runs. A year later, we were trying to manage them…

Scientists claim that no one is “born” with autism, but I believe the Princess was. The Princess, from the day she was born, exhibited unusual signs. I didn’t realize it because she was my first child. She never once looked us in the face the way our sons later would. She was a super-voracious breastfeeder. She had to be swaddled long past the age most babies are. She was particular to swinging and bouncing much more than a normal child. She was more interested in objects than people. She would stare for hours up at our ceiling fans. If she saw or heard something she didn’t like, she screamed incessantly. And there were other signs that started as young as 2 months.

Any of these things by themselves are not necessarily indicative of autism, but together, in hind sight, they were pointing us that way. At twelve months I asked The King if he thought The Princess had autism. He immediately said no. But later that day wrote me  a note of things he had observed that bothered him. We knew she was still too young to definitively diagnose. At 18 months, her persistant language delays led our pediatrician to refer us to the state agency for developmental services. At that time, The Princess was showing receptive language delays but not expressive and she was not significantly delayed in any other area. Six months later, it was clear.

We began with CBRS (Community Based Rehabilitative Services) therapy, Speech and occupational therapies. After a year, the school system took over The Princess’s care and she was put in a preschool that served children with developmental delays along side normally developing peers. After 2 years there, she is entered into kindergarten in a classroom setting with only other autistic children. Her teacher has been trained to work with autistic children. She loves school. She rides the bus. She eats lunch from the cafeteria and she works hard on her IEP goals. She is currently a first grader in this same classroom and has expanded her range to field trips with Special Olympics and resource classes with typically developing peers.

Our story continues. We have been blessed to know so many wonderful friends, teachers and therapists thus far and are at a point in our lives where we know autism as a blessing. We struggled to become pregnant and our prayer was always the same, not for a boy or a girl, or even for a healthy baby. All that mattered to us was that God gave us the child we were meant to have. And He did just that. We would never want The Princess to be anyone other than who she is. Our on-going IEP goal is for her to be “the best Princess she can be.” Would life be easier with out autism? Yes, it would. But we were never promised it would be easy, only that it would be worth it. And it has been. Every step of the way.

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