This post is second of a series of three posts written by Sarah Simons, Doula and mother of 7 about her experience having a special needs child with autism

I was relieved. I finally found a group of people who would “get me.” I listened to them share their stories of parenting children with disabilities, the stress it brought to their relationships, the exhaustion of relentless appointments and treatments, and the exhilaration of small gains achieved. I shared my own story of uncertainty, grief, and the joy of my boy who had to stroke my cheeks and say certain words at regular intervals to move cautiously through his day. It was here that both Garret and I felt welcomed and understood. Where he was just a child, not an enigma, not a behavior problem, not a case number, and I was just his mom, not an advocate, not an educator, not a threat.

When he turned three, he started preschool at Fraser, a time-tested, inclusive, progressive school for both typical and non-typical children. It was during this time that Garret was referred for a more extensive evaluation. I answered questions while he played in a room behind a one way mirror, fascinated by the electrical outlet on the wall. Then it was his turn to make accommodations in his world for a testing situation.

A few weeks later the psychologist presented the results of her assessments. She drew a graph on a whiteboard, marking points along the x-axis with developmental skills. She then drew a line that resembled a roller-coaster with its hills and valleys. She went through all the machinations of diagnoses and settled on one: Pervasive Developmental Disorder-Not Otherwise Specified, or PDD-NOS for its place in the alphabet soup of acronyms. It is one of five on the autism spectrum. It took some time to incorporate this information and make decisions about what would happen next in terms of therapies, schools, family dynamics, and community involvement. We finally had a name for it. Little did I know where this journey of personal growth and development for our whole family would take us.

Do you have a story of a child or parent experiencing a similar journey? Please pass this along to them so they can add to the discussion below.

Book Covers from the award winning Bur Bur and Friend’s children’s book series: Bur Bur and Friends is a cast of multicultural characters who educate kids about sports, outdoor exploration and active play though their experiences.

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This entry was posted on Monday, April 13th, 2009 at 6:43 pm and is filed under Community Board. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.