Searching for Answers

It was January 2009. I was 8months pregnant with our third child and Stephen had made little progress in 8months of Early Intervention Therapy. I questioned the therapist again....couldn't it be Autism? Why isn't he learning? Why does he line up his cars instead of playing with other toys. Why does he chew his blanket? Why does he run around and bounce off of things? She repeatedly brushed me off and reassured me that it could NOT be Autism because he gave such good eye contact. Given he did not initiate contact with anybody, never ran up to me and said I love you or gave me a hug. I wanted to believe her but a deep sense of unease began to build inside of me.

March 2009...in conversation with a friend about another boy with a delay I realized it was possible to have autistic tendencies and not be full-blown autistic. I went online and took a questionnaire and Stephen scored very high for Pervasive Developmental Disorder. I showed it to the therapist but she brushed me off again and pointed out the weakness of online tools. Stephen's diet continued to be limited and his vocabulary was less than 13 words. He didn't say hi or ask for anything unprompted. He did not understand questions, especially not yes or no. His main words were juice, cookie, truck and car.

At this point Dave and I felt like we were going crazy. We were desperate to find answers, to point out a reason for his unusual behavior and lack of communication besides poor parenting skills. From what I have read this is very common with parents of high-functioning autism children. Because they don't 'appear' to have a problem people often offer parenting advice and think the child is just out of control.

With my experience as a Special Education teacher I saw signs that I couldn't ignore....random fears and sudden cries or temper outbursts for no reason...I saw the autistic tendencies that I had overlooked for so long. I became desperate to find a professional who would agree with me so that I could get him help.

May 2009. We had Stephen's hearing tested and they found no problem. I left that appointment with a sick feeling in my stomach. If it wasn't his hearing there was something definitely wrong psychologically but how I could find someone to help me? Stephen went to the IU for his Evaluation and they assured me he could not have Autism...he was way too 'interactive' and high functioning. They brushed me off again. I was furious when I got a phone call saying he qualified for one 3hr class a week and no speech therapy!!! At this point his vocabulary had not improved and he was barely at a 12month level.

I learned that parents are entitled to request an Independent Evaluation at any time if they do not agree with the school district. Parents have so much more authority and rights then the school district tells them. I called Keystone and scheduled an eval for Stephen in June. Meanwhile I began to pour over websites and books searching for answers, searching for hope.

It was hard to connect with Stephen...he didn't have much of an emotional affect and seemed happier playing by himself. With a 2yr old with asthma problems and a nursing infant it was tough to give him attention when he didn't seem to care either way. I struggled with guilt and exhaustion constantly but pushed down all the feelings and would not allow myself to believe he was autistic until I found a way to 'fix' him. His behavior worsened and was unpredictable around other people. I began to fear for the girls safety and could not leave them alone for more than 15seconds. My emotions began a downward spiral as life seemed impossible and hopeless. Instead of trusting God and waiting on His timing I begged Him for help, for a solution. Now looking back I can see God's provision and love in every step—it was meant to be a journey of growth and faith, not desperation and discouragement.