About a month ago, I took the girls to a birthday party on a Saturday morning.
When we got home, I texted my mom the exciting news about what had happened at the party and what had happened afterwards.
For one of the few times in the last year…we were in a large, unstructured social setting and my daughter could identify and communicate what she needed. She didn’t lash out, didn’t scream, didn’t get overwhelmed, didn’t get physically aggressive. She didn’t cry on the way home. She didn’t collapse or melt down when we walked back in the door at home. Instead, she sat down and played with her party favors.
I didn’t have any new scratch marks. I wasn’t on the verge of tears. I wasn’t discouraged or frustrated or confused. Instead, I was bursting with pride and amazement.
It was mid-June of last year when I determined that my daughter was not developing the way that I expected to see and began to make appointments for her. I have spent this year trying to understand who my daughter is, what she needs, and how I can help her be comfortable and successful.
It hasn’t been a continuous process—there have been starts and stops and “wait and see”s and “try this” and “keep trying this.”
For months, I saw limited-to-no improvement, which was tough, because I was WORKING. I have never questioned whether I would keep going—because she is my daughter and so there isn’t a question—but I have wondered whether I COULD.
It has been intense. It has taken more than I ever thought I could give. The hardest part for me has not been the work, or the way that her behavior makes me feel, or the way that I sometimes worry that it reflects on me and my parenting.
The hardest part has been that her behavior, and her feelings that drive it, are distressing to her.
Seeing my child in distress—and feeling powerless to understand and protect her from it, even though I am trying—and fighting to keep my joy in parenting intact instead of letting circumstances slowly mute it—these have been my particular burdens and challenges in the last year. I know that many people carry much heavier burdens, and I am not complaining as I share this. I didn’t expect that parenting—and particularly parenting a child who wasn’t given the best environment in utero—would be easy. I just imagined that with lots of effort, you’d get answers or progress or incremental change or insight or acceptance or something. Hitting a wall—but not knowing how to get over it—was maddening.
This spring, a failed hearing screening led us to our pediatrician’s office, which led us to an audiology appointment, which led us to an occupational therapist’s office, which led us—finally—to something.
It has led us to an explanation that, regardless of its loose fit, has helped me understand and help her. To therapy that has built her skills. To charts on my wall. To a visual calendar. To an arsenal of physical coping instruments. And to birthday parties in which my child—who wants to attend, and wants to have fun—is able to make a plan ahead of time for success, communicate her needs, ask for a break, and rejoin the party.
There are still skills to be built on her end and on mine. But my almost-daily “8 pm: cry tears of frustration” appointment has been moved to a less regular time slot.
One of my favorite writers wrote something a while ago that has challenged me:
I’m still learning those last sentences. For so long in this process, I think I labored under the lie that if I could just do something different, it would make all the difference for her. I’m learning that the thing I can do to make all the difference for her is to accept and unconditionally love the child that I have been given, and to accept the parenting journey that I am on with her.
The lie was tricky to identify, because it didn’t come from a selfish place. I didn’t want her to be different for my benefit; I wanted her to be different so her life will be easier. But no amount of work on my end can take who she is and turn her into something that she isn’t, and no amount of work on my end can take away the struggles that she has been assigned. In my attempts to help her change, I was accidentally standing in her way.
A week or two before we got the diagnosis, David told me (during my 8 pm cry): “the reason that you don’t have any hobbies is because your hobby is trying to solve Zoe’s problems.” I cringed, because he was right and because I knew it wasn’t healthy. A diagnosis has helped me so much, not just in understanding her, but in accepting that she needs some help outside of me.
When I see strange behaviors now, I still feel sad or frustrated on her behalf, but I’m learning to observe her behavior without feeling like I have to solve it. Instead, I make a mental note to share with her therapist, or decide I can just observe it and add it to my internal files without necessarily needing to process it and respond.
I’m learning to remind myself of “the village:” the amazing OTs who love her. The preschool that has met with us to prepare to welcome her. Our family that has tried to learn along with us, and who communicate love and support to her every time they talk with her. The buddies who love her and who she feels safe with, and whose parents keep inviting her over even if we have to leave a play date early sometimes. Her sister, who surrenders the parental attention when needed without being sad about it, and who goes to the other room to get her sister’s teether and blanket for her without being asked. We are so blessed.
I recently made a photo book of her adoption story. She has enjoyed looking at the photos and listening to me read the simple text. Interestingly, her main questions haven’t been about her birth mom or why people she doesn’t know visited her in the hospital. Her repeated question is some variation of the following: “were you happy I was born? Were you happy I was your daughter?”
Our faces in the photo book answer her question; we are quite literally glowing with delight. My hope is that she still feels that delight every day. I am SO happy she was born and I am SO happy she is my daughter.
Our world needs this gem of a human being. And I do too.
(This is Zoe after a birthday party where she chose to bravely face her fears of unstructured settings, loud noises, an unfamiliar environment, and—the shocker to me—getting her face painted by the artist at the party.
I could tell that she thought that the other kids’ face painting was cool, but she was nervous about it due to her sensory sensitivities. I wound up sitting down in “the chair” and letting her pick a design for my hand so she could observe what body painting was and maybe feel more comfortable getting something done next time. At the end of my hand painting session, she decided that she wanted to get her hand painted. I could tell she was anxious, but she used her coping skills and was thrilled with our matching mermaid hands. After about 30 minutes of staring at her hand, she asked to return to the chair to get her whole face painted. She was glowing with pride and accomplishment afterwards, so naturally, we had to take some photos when we got home…and leave the face paint on for church the next morning! Nothing says “I am fearfully and wonderfully made” like some Elsa face paint!!)