the diagnosis

So after years of struggling with school, it was recommended that we have Big tested by a Pediatric Neuropsychologist to make sure there weren’t any learning disabilities or disorders that had been hidden all these years. The first time I met the Doc was in December when Big and I went in for an intake interview. She talked to both of us together and then sent Big out to fill out a survey about himself. As soon as he left the room she turned to me and asked, “Is it common for him to avoid eye contact?” I knew immediately what she was asking and every question that came after that made it only clearer. I taught in a special- ed inclusive classroom when I was a teacher. I taught children with autism and asperger’s. I knew where she was going and I refused to go there.

The questions about his social strengths and weaknesses, the obsessions, the tics and other “quirky” behaviors, all pointed at one thing. I tried my best to be honest, but it’s often a mother’s prerogative to under report  especially when someone is trying to tell her that the baby she’s raised for the last 10 years and 7 months isn’t “normal.” She sent me away with bundles of surveys for me and the Mr. and for Big’s teacher. I was uncomfortable with what she said and what she didn’t say, but I heard. But, everyone I talked to thought she was obviously just as crazy as I did. I put it away. I tried to put it away, but in those quiet moments when my mind wasn’t busy with something else, it popped in to visit. It got too comfortable for my liking. For every “but there’s this…” there was also a “yeah, but there’s that too.”

Big underwent two three hour sessions of testing with the Doc. Last week the Mr. and I nervously sat next to each other on her velvet love seat while she sat across from us with a thick folder of documents and said, “it’s complicated.” As the weeks had gone by, the autism piece kept creeping back in to my thoughts. I tried to shake it away every time, but as I sat there next to Mr. the room was stuffed full of the anxiety I had been carrying around. I was waiting to hear those words and hoping and praying they wouldn’t come.

He could have a nonverbal learning disorder, she said, but all the pieces aren’t there. He’s this, but not this. His scores on this are off the chart, his scores on this are significantly lower. It’s complicated. But let’s talk about my observations.

That’s when it began, the truth began to pour out of her mouth and those papers stacked on her lap held the evidence. She went over the surveys we filled out. She asked Mr. the questions that she had asked me that December day. With each answer he gave and each excuse I prepared, I knew I was wrong.

Autism. High functioning Autism. It was there on the paper. The criteria were scientifically checked off and mathematically added up. The tears came then as they still do now. Why? We had an answer, he was still the same child (as everyone under the sun feels like they need to remind me of.) Why?

So, I’m a planner. My anxiety is of the anticipatory variety. It thrives when I don’t know what comes next. In those moments that the evidence was presented, the documents shown, the direct quotes shared, my expectations for the life I had imagined for my son were thrown into disarray. His quirks had been things that we were sure he would outgrow. He would learn to make more friends, he would take up other more diverse interests. He would grow into a normal guy that functioned in the world just like everyone else. With that label the evidence said now belonged to him, “normal” faded away to a once upon a time thing. This was going to be forever. This was a battle we would always be fighting. Selfishly, it wasn’t a battle I ever wanted to care about. But, life doesn’t care about what you want, selfishly. And the truth is, I love this boy so hard it hurts. His difficulties are mine. His successes light me up. This is a battle that though I never imagined for myself, I can’t ever imagine not fighting for my son. 

The other battle I fight daily is with myself. The blame and the guilt. With everything I knew about autism and asperger’s how did I not see it? How did I ignore it for so long? What damage have I done by not seeing? He could have been getting the support he needed years ago, but he wasn’t. He wasn’t getting the help he needed because I didn’t see it. My therapist, his teachers, my family and friends all say I didn’t miss anything. I did okay. No one saw it until now. I’m told that’s normal, the average age for a diagnosis for asperger’s is 11. Each time I hear someone new tell me it’s not my fault, it chips away just a little at the guilt, but it will be a long road for me.

So this is it. The new reality. The books by experts, the meetings with support teams. The fights to get him the help he needs. At the same time that I’m torn up about this news, there’s a part of me that feels a little bit of relief. Can we help make his life better? Can we take some of the pressure off of him at school? Can we better understand what makes him tick? These are the goals. It’s time for me to crawl out of my selfish hole and get to work. I’ve started fighting, but the tears still come. When I’m faced with the immensity of this new paradigm, I’m tempted to take a few steps backward into my hole and wallow. But, Big doesn’t have time for wallowing. The tears may still come, but I’ve got to take those steps forward. I’ve got to fight for my son.


5 Responses to “the diagnosis”

  1. 1 Susan
    February 23, 2013 at 6:25 pm

    Beautifully said.

  2. February 23, 2013 at 9:18 pm

    Knowledge is power–especially for a mom with such amazing skills like you. Once you find your footing, I know you guys are going to find your way.

    • 3 susan f kirch-thibado
      February 24, 2013 at 7:53 am

      As you and Tom raise this wonderful family of boys, know that you are held up and supported by a network of family and friends. Parenting is not an exact science, but an art…you two have become great artists!!
      Aunt Sue

  3. 4 susan f kirch-thibado
    February 24, 2013 at 7:50 am

    As you and Tom combine you love and caring to raise your wonderful household of boys, know that you are supported and held up by a network of family and friends. Parenting is not an exact science but an art…
    Love Aunt Sue

  4. July 7, 2014 at 10:29 pm

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    really enjoyed surfing around your blog posts.
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now what’s that now?

what’s done is done


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