Our New Reality, Yet Keeping Our Old One

We weren’t on the waiting list long for an appointment with the Developmental Pediatrician; probably no more than a couple of months, which was quite surprising, seeing how we had heard that it could be up to 6 months to schedule an appointment. Estimated a year for an actual visit. However, 2 months can seem like a lifetime when you’re anticipating what the doctor will say. The morning of Callie’s evaluation, I felt sick. It’s like I already knew the diagnosis would not be favorable. The fact that we were going to a Developmental Pediatrician in the first place was a true sign. My husband was pretty much quiet. I think in his gut he knew something was wrong but was hoping by not admitting to it, there would be a slight chance Callie was ok and we were overreacting. We met the pediatrician. She did some floor/toy exercises with Callie alone while we sat outside the door filling out paperwork. My hands were shaking and my heart sunk to new levels. I was petrified with my son being by himself with someone I had just met. I was nervous that I was answering questions about my son, our family. . . .personal stuff that did not, in my opinion, seem relevant. I could feel myself going into panic mode, scared that I may write something that would further label my son for the rest of his life and it would be my fault. Nothing about being in that office building gave me any comfort.

The Developmental Pediatrician asked us to reconvene into the room. A sigh of relief as I grabbed my son, checking him over to make sure he was ok. (To say the least, I was a nervous wreck!) Callie left me to go back to the middle of the floor. He was checking out the blocks as if it was a new science experiment that he had to observe before using them to build something. The doctor told us that Callie had some form of autism but was trying to narrow it down to either Asperger’s , high-functioning Autism or Auditory Processing Disorder. She was spitting out words that were beyond my understanding. But quite frankly, all I heard was autism. It didn’t matter if it was Asperger’s or high-functioning. It was autism. I was stunned as if I had heard this for the very first time. I can’t remember if we asked any questions. I knew she had to be somewhat correct in her diagnosis but her lack of “narrowing it down” left me totally uneasy. However, I couldn’t think. I saw Callie. I heard autism and I drew a blank. My husband may have asked a question or two but he had a expressionless face. She gave us A LOT of papers. . .none that pin point exactly what Callie’s diagnosis was. . . . .so driving away a hush of disbelief, confusion & fear fell over us. . . .much like we came.

Our second visit to the Developmental Pediatrician office was 7 months later. It was with someone new and I was relieved. She was not personable. Not warm. Just straight forward. The other doctor couldn’t determine where my son was on the autism spectrum, and looking back, she herself seemed indecisive, juggling with what it could be but not ever landing. How to help us or even how to embrace us with the proper information or hope of some kind escaped her totally. This new specialist read Callie’s file. She evaluated him while we were in the room. She said with no compassion in her voice, “Mr. & Mrs. Dawson, your son is autistic. He is on the high-functioning end of the spectrum, which means he can learn and will be able to function on a higher level.” High-functioning. I had heard that before. It was more like a confirmation of everything I kind of felt. If my heart could have high-fived her, it would have. She was blunt and did not make us feel like this journey would be an easy one. She explained the challenges that Callie could possibly have and how we would have to educate ourselves in order to really help him. The diagnosis was a relief and at the same time, it wasn’t. I knew there was a long road ahead and not just because the doctor had informed us it would be. Instinctively, I just knew. My husband asked one question. “Will he get better?” She said “With a lot of therapy and support, he can progress, but he will need a lot of therapy and support.” I mentioned that Callie was not potty-trained and how difficult this process was. She looked at me and even though her voice was monotone that lacked care, something in her words brought good news. “He’s high-functioning. He can be potty-trained. I will venture to say by the end of this year, he will be.” Exhale. This was great but my heart wouldn’t let me rejoice. Above me, in the sky were the words “Your son is autistic.” I couldn’t process anything much after that.”

The ride home was long again as I knew it would be. My husband returned calls and I looked out the window. I didn’t cry, even though I wanted to. I glanced back at Callie. He sat in his car seat quietly, staring out the window, as if he could see the same thing I was looking at.

The sun was shining as it had been before the visit. The same buildings stood. Traffic continued to be heavy, and even the cool breeze had not moved a degree at all as it seeped through my cracked window. A diagnosis with no road map had been placed in our hands. . . .and I noticed that the outside remained the same. This was ironic to me because for some reason, I thought everything would change in an instant. All the challenges and problems would begin pouring on our head, but it didn’t. My son remained the same, at least for that moment. I figured rough days were coming, but the breaking news did not suddenly make things worse where meltdowns were any more unbearable than usual, neither did it cause immediate improvement where words started flowing out of Callie’s mouth. My life’s tempo came to a halt but my son changed not. He was the same little boy with social, communication and sensory problems. He was also the same little boy whose eyes I could dwell in and whose heart I held close. He was a boy who needed love prior to his journey being given a proper name. . . .and now without knowing the days ahead, he would need the same love even more. A bolt of lightning flashed before me. There stood an introduction to autism and there stood my son. Face to face. Autism hadn’t deleted who he was. He was still there, defined by his heart. . .not by a diagnosis. And I honestly believe those words will stand true, no matter what the future holds — Callie is “defined by his heart, not by a diagnosis.”

Thanks for listening,

Portia

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