Her cries and screams which occurred without warning and often over a dozen times each day expressed an inability to connect and her fathomless grief. My daughter was trying, but her sensory processing system was not integrated. I didn’t know how to help her, other than to snuggle her up as close to me as I possibly could, often skin-to-skin in an attempt to absorb the demons that chased her.

Years later I would understand the magnitude of the cards she’d been dealt by losing her birth mother and by being adopted. I, mother to this precious soul, was ripped open.  My daughter’s sensory integration disorder (SID) and grief connected us on the deepest level imaginable. She felt safe with me and shared every bit of what she felt. Her disorder made me look deeper at another aspect of adoption—loss.

My daughter joined us at thirteen months, broken in spirit and disconnected. I could sense this in her referral pictures and felt it as soon as she arrived in the large meeting room at the Ministry’s office in China. I stepped forward to take her when her name was called. She didn’t cry; she smiled (this would be the only one for several days). Her smile was unexpected and although it registered somewhere in the back of my mind, I ignored that warning of things to come.

She scooted up on my shoulder. Dark hair grew out of the shaved head, bug bites covered her pale face and the stink of polluted water permeated faded ratty orphanage clothing. She promptly stuck her thumb in her mouth and fell asleep. I had to bat one official’s hand away when she tried to take my daughter’s thumb out of her mouth.

“Bu (no),” I said. She was comforted by her thumb. Let it be.

My girl was a sad baby those first days in China. She would sit folded in half, her chest flat against the short-piled carpet of the hotel room and in between her splayed-out legs and suck her thumb—one, two three, four, rest… one, two three, four, rest…  The rhythm soothed her and in the months and years to come I would find myself putting her thumb into her mouth to settle her.

My husband and I were rewarded with another smile two days later and a few days after that she began to sit up unassisted. Within the second week she was walking while holding onto our hands. We were thrilled with her progress and believed that love and attention were working to bring this gorgeous baby girl around.

Upon arriving home we warned our other kids not to take anything from her. In China we had noticed that she ate off the outside of her closed chubby fists—grinding them into her food and then carefully sucking the food off the her right one. When she cleaned it off, she would carefully open her fingers to suck what food had made it into the crevices between her fingers. She kept her left hand tucked behind her, hiding what little food there was in that hand. We had made the mistake in China of cleaning the left hand before giving her more food to hold in her right. Never again. She was still in survival mode.

Her adjustment seemed to be going well. She enjoyed being with her brother and sister. She smiled and coed a lot, but still, something seemed off. Within months, I began to notice other things. She was content to be still—not the normal activity for a toddler. My daughter could hear me, but she wouldn’t respond. She would fall and not react. I received blank looks when trying to engage her in “follow me” games. She was a late walker and her gait was “odd.” We had her x-rayed. The results were normal.

Everything looked fine and it didn’t. I asked for another assessment. The findings were that she was slightly delayed and would catch up soon.

My niggling feeling grew into fear and then panic when it all began to escalate—the screams, the crying, throwing herself on the hardest surfaces (like concrete) without any warnings or triggers. As I held her rung-out-from-her-tantrum sleeping body one afternoon, I began to cry. She was so beautiful and in peace as she slept. I wanted her to feel peaceful all of the time. I ached with her pain. While she slept I made phone calls and found an assessment group that could see us the next day.

The hour-long assessment turned into three and a half. Multiple therapists went over her with a fine-tooth comb and then met with me and went over my notes. She was given a diagnosis, something I had never heard of and it required a lot of therapy—sensory integration disorder (also known as sensory processing disorder).

Sensory integration disorder is a spectrum disorder which can affect all of the far and near senses. SID can affect children who have been institutionalized, like my daughter. Proper sensory integration involves the neurological processing of information that is received by an individual’s body and their environment. SID occurs when the brain cannot modulate the reciprocal process of intake/organization/output flow of the sensory information that it is receiving and therefore, the body’s activity level. 

My daughter exhibited difficulties with the tactile, vestibular (movement), and proprioceptive (positioning) senses and was responding with a combination of hyper- and hyposensitivity. Her prognosis was good because she was healthy and young. The recommendation was that she begin occupational, speech, and physical therapy as soon as possible.

The improvements that occurred within a matter of weeks were miraculous. She began talking and processing. Her tantrums decreased. The “splats” disappeared. Her gait became normal. She attended a developmental preschool program and graduated in a year.

As my daughter “healed” from her SID, she began to process and grieve openly for her losses—of her birthmother, being given up, not loved enough by her birthmother, of not growing up in China. Her grief was triggered annually by her birthday. I began to understand that her SID was not only tied to being in the orphanage, but to her losses as well. Her neurological system, severely stressed by being separated from her birthmother, continued to shut down as she lived in the welfare institute with little stimulation and nurturing.

We’ve made a great deal of headway over the past years. My daughter calls on her coping skills when she feels out-of-sync. She grieves less about what she sees as the injustice of adoption, of her being our daughter. She knows there is nothing she can do to make me stop loving her. Knowing that I will love her no matter what has given her the permission she needed to open up, talk about adoption, and find some resolution.

And that thumb? Well, it’s painted wild funky colors. 

Bio:
Judy M. Miller lives in the Midwest with her husband and four children. She writes essays and articles for adoption and parenting magazines. Her stories are included in A Cup of Comfort for Adoptive Families: Stories That Celebrate a Special Gift of Love, Pieces of Me: Who Do I Want to Be? and Chicken Soup for the Soul: Thanks Mom. She is an editor for Story Circle Network Book Reviews and recently was a presenter for “Finding Our Stories Online” at the Stories from the Heart conference in Austin, Texas. Judy is a columnist for the adoption network, Grown in My Heart, writes at The International Mom’s Blog, and facilitates classes through Parenting Your Adopted Child: Tweens, Teens & Beyond at http://JudyMMiller.com/.