Reality, Loss ...and Acceptance?

Two years ago our daughter was diagnosed with PDD-NOS/Aspergers, SPD, Receptive/Expressive Language Disorder, Anxiety and ADHD. Understandably, I was more relieved at the diagnosis than disappointed. Finally, I had some answers and validation on why she seemed to be so high maintenance on the one hand and oddly docile on the other. I came home from that appointment on fire and ready to pursue whatever means it was going to take to help her.

I did some crying and mourning over what would not be with our daughter, but I chose to put my energy into hours of research on the Internet and reading books. I took her to therapy sessions, I worked with her at home, I observed her in the classroom and worked with her teacher. After all, I couldn’t change what I had been given, but I could try to make the most of what I had.

That rationalization carried me only so far. When I saw her cousin, just 3 months older than her, that Christmas holiday, I was unprepared for how dysfunctional our daughter really was. I was blindsided and my ground was cut out from under me. I wept. I wept for how unable our daughter functioned in the world. I wept for how hard it made my life. I wept at her future and how she’d never marry or have children and I wept at the loss of that for her, but mostly for me. I wept at how embarrassed her actions made me feel and how totally defeated I felt as a mother and how mad I was that I couldn’t rise above it. All of that monumental effort the past six months yielded such miniscule results. Sobbing into my husband’s shoulder, the dam broke.

This moment wasn’t a total surprise. I had been waiting for it. I knew I couldn’t hide behind her therapy sessions, school and the books forever but I didn’t know when it was going to happen. I didn’t know what the trigger would be. I was a little surprised at the intensity, though. I thought that I had been feeling and dealing. What I realized was that no matter how much I prepared myself, there would be times in her development where her shortcomings would hit me and I would have to grieve the loss.

When we adopted the diet and began seeing improvement I was hopeful. Practical, and somewhat pessimistic, person that I am, I was afraid to hope too much. But, we started to see progress. She was adapting better in her classroom, her language was improving, her night-wakings were ending and she was finally sleeping through the night. She was beginning to have a little more conversation. Our daughter was starting to emerge. Finally! Some of that effort was starting to pay off.

Then, six months after we started, something changed. She started stumbling more. Nothing terribly obvious, but, she hadn’t stubbed her toes before and now she was doing it once or twice a day. Then, a couple of days later, right there, while I was sipping my morning coffee at the breakfast table, she changed. She started stimming. I could barely breathe when I saw it. She started drawing wildly active stick figures all over the paper, holding her breath and stimming with her arms; rocking and bouncing. I grabbed the camera and documented this dramatic change. Where did she go? A week later, again I sobbed, this time on the phone to my mother. I didn’t realize how scared I was until I heard the familiar comforting voice.

What I have come to realize, as I mentioned before, is that her development comes in waves - in peaks and valleys. Perhaps all children do this, but I wouldn’t know. I just know that when she shows regression I panic and fall apart. I counsel others that this is a sign of an infraction or a new intolerance; that it’s the beginning of an improvement and should be rejoiced, but I can’t seem to believe it for myself. Maybe one day I’ll get used to it, but probably not. How can one ever get used watching his or her child disappear? I wonder if I’ll ever be able to breathe a sigh of relief and let her go. Does anyone really do that?