In the world of special needs adoption, not all “special needs” are known or expected. Sometimes a perfect, healthy child turns out to be more complicated than anticipated. And some of the most difficult special needs can not be seen or touched or scanned with an MRI. My oldest daughter, DanDan, is the one who introduced me to the world of hidden special needs.
DanDan was our first child. When we began the adoption process we looked in to special needs adoption, but we were still recovering from the wounds of infertility and felt like we just couldn’t handle any serious special needs at that point. We requested an infant, as young and healthy as possible. And when her referral came, DanDan was just that.
I am a reader and researcher by nature, so I read everything I possibly could about adoption and attachment before we flew to China. I wanted to be an informed, prepared parent. When Gotcha Day finally arrived, we were handed a gorgeous 9 month old baby, who looked up at us and smiled. DanDan was obviously underweight and delayed in her motor skills, but healthy and happy. She ate well, slept well, and bonded to us very quickly. By the time we arrived home, she was so attached to us that she did not want to be out of our sight. I breathed a sigh of relief.
DanDan was an easy baby, laid-back and content. She quickly caught up on motor skills and hit her infant and toddler milestones right on time. DanDan grew into happy toddler and then a bright, inquisitive toddler. She was bright and verbal and loved to learn.
As she grew, DanDan showed signs of some social difficulties. She avoided other children, preferring to relate to adults. She was afraid to be away from us, even to play alone in her room or our backyard. She would not join other kids, even friends, on playground equipment or fast food climbing structures without me following right behind her. She cried for long periods of time when we left her in the church nursery or at preschool. She worried about everything and had to have a rundown of every day’s schedule. I often felt a sort of nagging in the back of my mind about these behaviors. Were they a big problem or just a developmental phase? Was this adoption related or just DanDan’s personality? Many of the behaviors had plausible excuses. Maybe DanDan preferred adults because she was an only child. Or she was so precocious, maybe she just couldn’t relate to kids her age. Or she was just sensitive. Or she had a few separation anxieties. Or she really liked structure. I saw the problems, but I didn’t know if my worries were justified.
When DanDan was two, we started the process to adopt again. After watching the wait times increase exponentially, we decided to switch to the special needs program. We felt confident in our abilities to parent and were sure that we could manage a special needs child. Finally, after years of waiting, we were matched with MeiMei, who had a relatively minor limb difference. It was during the time that we were waiting to travel for MeiMei that DanDan’s special needs truly surfaced.
We waited a long 4 ½ months to travel, most of it over the summer when we had nothing to do other than think of the toddler waiting for us in China. We were all stressed, anxious, and on edge. But DanDan, at age 5, was the worst. She started having problems going to sleep. She couldn’t concentrate on books or toys. She worried so much and so often that I joked that she was Worst Case Scenario Girl. When her grandparents went on a trip and when her dad went to a week long out of state class, she had full-blown panic attacks. She was unusually cranky. She cried every day. We did what we could to get through it all, but were alarmed at DanDan’s escalating behaviors. So we counted down the days until we left for China and hoped the trip and the arrival of her sister would some how calm our DanDan.
When MeiMei was handed to us, she was almost two years old and screaming in terror and rage. DanDan watched her in my arms and suddenly launched into a tantrum so full of fear and anxiety it would have to be described as primal. Her dad and I stood, each with a screaming child in our arms, and wondered what we had gotten ourselves into. MeiMei soon calmed down and proved to be busy, funny, happy little girl whose limb difference didn’t interfere with her zest for life. Within days she was attached to us and acted as if she had always been a part of our family. DanDan, on the other hand, was falling apart more every day.
While we were in China DanDan refused almost all food. She barely slept. She threw tantrums and cried many times a day. She was horribly jealous of MeiMei and the attention she received. She developed motor tics that interfered with everyday activities. She was an emotional wreck and incredibly difficult to deal with. My husband and I were horrified and frustrated and had no idea what was happening or how we should react. It was obvious that the China trip had been hard, terribly hard, on DanDan. We could only pray that she would settle down once we were home.
And some things did improve once we were home. DanDan began eating and sleeping normally again. Her motor tics lessened and gradually disappeared. She started kindergarten and thrived there, soaking up knowledge and interacting with other kids more than she ever had before. In public, she was a terrific kid. But at home, she was falling apart.
DanDan had a hard time adjusting to sisterhood. She was jealous of MeiMei and mourned her old life as an only child. She fought and whined whenever she was near MeiMei, but she also was obsessed with her. DanDan wanted to take care of all MeiMei’s needs, to be her mother. She had to know where MeiMei was at all times and worried constantly if she was out of sight.
DanDan’s need for structure increased. She had to know exactly what we were going to do every minute of the day. If we went somewhere, she had to know who would be there, what we’d do, how long we’d stay. She spent huge amounts of time worrying about anything and everything. Worst Case Scenario Girl was constantly with us. She continued having anxiety attacks, some of them severe.
And then the anger started. DanDan would be playing happily and then suddenly, without warning, she would be in a sudden rage. She hit and pinched and shoved her sister. She was physically aggressive with us. She muttered angry words under her breath. She slammed doors, stomped her feet, threw things. She repeatedly told me that she hated me. The anger was intense and explosive and without any obvious cause. Talking calmly to her didn’t help. Time out didn’t help. Restructuring our routine didn’t help. Soon, we were walking on eggshells trying to keep DanDan happy. In public, DanDan was well behaved and sweet. No one but us ever saw these tantrums and no one seriously believed they even happened. My husband and I were watching our beloved daughter disintegrate before our eyes and we were all alone.
By the time we had been home from China for nine months, we could no longer ignore or excuse DanDan’s behaviors. Her anxiety and anger were interfering with her everyday life. She needed help. I pulled out all of the adoption and attachment books and re-read them. I read about children with attachment disorders, children with perfectionist tendencies, children with sensory processing disorders. None of them sounded like DanDan. Not knowing where to go next, we called our adoption agency’s social worker. She did some checking around and referred us to a therapist called K.
K. was an experienced therapist who specialized in attachment and adoption. We liked her immediately. K. met with us and asked questions about DanDan’s behaviors and her past history. I filled out many detailed forms, some of them tests to see what it was that was so deeply affecting my child. Within a few weeks, K. had test results for us. DanDan was diagnosed with an anxiety disorder, which was what we had expected. To our great surprise, she was also diagnosed with post-traumatic stress disorder. I had never really thought about kids getting PTSD. Wasn’t that something that soldiers and people who had lived through horrible acts of violence got? DanDan had a sheltered life, she had never witnessed any sort of violence, even on TV or movies. What in the world caused PTSD in my daughter?
K. carefully explained that DanDan’s early months in the orphanage and her transition to our family were probably the cause. DanDan’s orphanage was clean and bright and the nannies did their best. But there were too many babies and not enough adults. DanDan didn’t get us much to eat as she should have. She wasn’t held or cuddled often enough. During feedings, her bottle was propped and she was left to eat alone. If she cried, there was no one available to pick her up and comfort her. All of these things are traumatic for infants. And leaving the orphanage, with all it’s sights and sounds and smells and comforting routine , to be handed over to us, complete strangers and foreign in every way, was a huge trauma. The arrival of MeiMei and the return trip to China had triggered memories of those traumas. DanDan didn’t consciously remember them, and certainly couldn’t put them into words, but those memories were there. And they were huge.
And so began an amazing year of therapy. Once a week DanDan and I would drive into the city for an evening of shopping, or running errands, or just playing in a park. We went out for dinner, visiting a different restaurant every week. And then we went to see K. We soon began to look forward to these nights. DanDan loved the time with just me and I loved being around her when she wasn’t angry or worrying. The whole evening became a part of therapy.
K. talked with DanDan and played games with her and tapped into DanDan’s love of drawing. I began to see that PTSD did make sense for my girl. DanDan was overly anxious and deeply in need of control. She was hyper vigilant, not of herself but of her sister. Her anger was explosive and all-consuming. She was restless and “on guard” most of the time. In her own way, she really was like a war-stressed soldier. And once I saw the PTSD in my child, I began to wonder about other kids I knew. We had several adoptive family friends who had children with tantrums or anxieties similar to DanDan’s. Did this diagnosis fit them, too? I was learning to observe through new eyes. And I was pretty sure that DanDan’s diagnosis was far from uncommon.
DanDan liked visiting K. and little by little, she worked her way through her fears. She didn’t much like talking about them, but she was happy to draw them all out. And together, K. and I pieced together the hurts and talked her through them. DanDan was afraid of many things, the biggest and most overwhelming was that we would leave her. She woke up every day afraid that we would just give her away. And that, of course, was terrifying. As the months passed, we worked through the fears. DanDan heard over and over and over that her dad and I would never leave her. That we would never let anyone, not even her birth mother, take her away. That we would never let anyone take MeiMei away. That adoption meant forever, no matter what. And slowly, slowly, DanDan began to believe it.
There never was any huge breakthrough moment. DanDan just slowly became less anxious. And less angry. She got through whole days without tantrums. She no longer needed a minute-by-minute schedule of the day. She stopped wondering what MeiMei was doing at every moment. Our happy, beloved girl was back.
DanDan is 7 now. We all made the decision to stop therapy a couple of months back. Seeing K. was still fun, but we didn’t need her anymore. DanDan now scores out as perfectly average on the testing scales that measure anxiety and PTSD. She is a happy, confident 2nd grader. Now that she doesn’t spend all of her time worrying or raging she has time to do and experience so many things. She happily skips off the day camp and cooking class and school. She plays (okay bosses around) with her sister. She has never been so “normal”. She amazes me.
DanDan was not considered a special needs child when we adopted her. And she is not considered a special needs child now. But in between, she had some serious, life-altering special needs. I am so glad that we sought help for DanDan, despite the fear and stigmas associated with mental health issues. DanDan’s special needs couldn’t be seen, but they were very real. And, it turned out, very treatable. Therapy was a blessing for our whole family. DanDan has taught me so much about fear and pain, memory and courage. And I am forever grateful.