My middle daughter turns 8 years old in just a few days. She’s in second grade, and it’s a been quite a journey for her to get there. Every year she’s progressed further than she did the year before. Every year, she has new challenges. She has Asperger’s Disorder, as I’ve discussed at length before. This is a form of Autism.
But this post isn’t really about her this time. I’m proud of my daughter. I love her with all of my heart. But that doesn’t mean that I don’t get frustrated with her, or that I don’t get angry with her. Yes, with her. Because sometimes her behavior is age-appropriate and situationally appropriate. Sometimes there are even misleading moments and periods of downright averageness. Our house has it’s own normal, probably different than your normal, so I try to refrain from using “typically normal” except when referring to what is “typically normal” for my own children specifically.
For a long time, friends and family have described how I’m handling Princess #2 with various descriptors. Strong. Bravely. Well. Loving. Caring. Gently. Patiently. Courageously. Inspirational. A great advocate. Self educated. Encouraging. Helpful. Understanding. Open-minded. Firm. So many positive words, so many more than I can think of now. My best friend gave me a wonderful compliment the other day, saying that of all of us in our group of friends, the one of us who has handled motherhood the best and therefore would be the best mother for a special needs daughter would have to be me. Considering I try to model my mothering after her, and that I believe she’s the best mother I know, I took that as a great and undeserved compliment.
But what people don’t seem to see or maybe refuse to acknowledge are the other adjectives that can be used to describe me as a mother to a child with special needs. Sometimes sad. Tired. Swimming. In over my head. Unprepared. Afraid. Worried. Anxious.
Angry. I’ve been living through it since her diagnosis, and not allowing myself to acknowledge that emotion, but I’ve been angry that it happened to my daughter and by extension to my dearest heart. Autism has happened to our family. Everything that Autism makes more difficult, more pronounced, more MORE, has happened to my family. And I’ve been asking, without acknowledging that angry question, why?
And why haven’t I been able… or feeling like I’m allowed… to acknowledge those negative adjectives and feelings? Why does the world expect parents with special needs children to put on a special happy face? We can’t admit to anyone who isn’t actually living it that some days, we’re just plodding through, that we’re just existing and faking it simply to get through the day until the day is over. That our patience isn’t infinite, that we don’t always like our kids as much as we love them, and that we don’t always know what to do.
I didn’t even realize until recently that I had that Why stuck in my head. But it’s been there. It’s been persistent. In fact, it’s been the driving force behind my anger. I didn’t plan to have a child with special needs. When she was small and we weren’t sure what was going on and it was before we had even an inkling that she was special needs I distinctly remember saying a brief prayer, “Please God, let this be something we can fix with her diet or medicine. Don’t let her have Autism.” I think maybe I knew even then before I really even knew what Autism was and that there were different types and severities. I didn’t even know why the word Autism flitted through my head in that prayer and I remember that it surprised me that my brain jumped to it. At the time I had no clue. I just had no clue. I wonder if God answered my own prayer as I was praying it. That thought has crossed my mind more than once.
I quickly reached a point where I desired answers more than I desired “don’t let her have Autism.”
Of course I never once wanted her to have Autism. Her diagnosis was devastating even though it gave us answers, and even though it gave us a starting place and a map on how to proceed. It opened doors for us with her education in getting her a proper PPT and IEP. But it also opened doors for feelings I didn’t expect.
I’m not angry with her for having Autism. It’s not her fault. None of it is her fault. I parent her as I do my other children keeping in mind her strengths and her needs, disciplining her as best as fits her personality and the situations. I give her as much love as she ever needs and encourage her to learn and laugh. Life isn’t easy for her to navigate so there are many times that she’s not happy. There are many things that are difficult for her to grasp that seem easy for other children her age and younger, that when she realizes it make her sad. She knows she’s different and sometimes that makes her sad or angry while other times it doesn’t bother her at all. She knows that either way she’s loved and she’s special. She’s learning the language of Autism so that she can ask for things that she needs when she needs them, and that makes me happy that she understands and is figuring those things out, but it’s made me angry that she HAS TO.
And all of this leads me to ask WHY? Why her? Why us? WHY ME? Why me and my child? Why would God do this to us? Why would he allow it? These are questions I haven’t allowed myself to vocalize or even acknowledge but have been there in the back of my mind unformed nevertheless. And I know that I haven’t been to Church as much as I should since we received this diagnosis because I’ve felt betrayed by that prayer. That prayer was the turning point, even before I heard the words, “Your daughter has Asperger’s Disorder. Yes, it is Autism. She has PDD-NOS. Your suspicions were correct and the evaluation shows this is an accurate diagnosis”
Now there’s a conflict that I’m having a lot of trouble with right now. I had a spiritual purging over the weekend at an event called Women of Faith. It was amazing. I’ve never had a questioning of God during all of these years. If anything, my faith has grown stronger. It’s been my anger getting in the way, my disappointment getting in the way, of properly worshiping even though I pray for help and pray for thanks. My heart hasn’t been in it quite the same way. At this convention, I was forced to acknowledge this entire mishmash of thoughts and emotions in a short period of time and kept coming back to WHY?
And then near the end of the second day, the answer came from one of the inspirational speakers, answering the question I’d finally put a voice to in my own head the night before while listening to their music and their stories. WHY? and then… Why not?
Why not indeed. My daughter is still my daughter. I love her. I’m proud of every accomplishment she makes because I know how difficult they can be for her. I take pride in the things that she finds easy. I take pride in her talents. She’s smart, she’s beautiful, she’s funny, she’s sensitive. We need each other. She wouldn’t be who she is without the Autism, and I wouldn’t be who I am now without her. So why not her and why not me? Maybe there are some lessons in there I should be looking at more closely, and maybe even being thankful for.