Dani's Story: A Journey From Neglect to Love (8 page)

Chapter 9

Truth and Consequences

The termination of parental rights had legally freed Danielle from her mother on her eighth birthday, but this didn’t mean that Danielle would ever be free of the heart-wrenching consequences of being under that woman’s control for the first seven years of her life.

The next part of the
Child Study
was titled “Medical & Developmental Information.” I felt my stomach turn and my throat tighten again; we were about to hear the hard facts about Danielle’s physical and intellectual state from the time she was taken into custody up until the present. We had already witnessed some of her behavioral and developmental issues that day.

The first people to test Danielle were members of the Child Protection Team at Tampa General Hospital shortly after she was removed from her home. As big a step as it was toward getting her well physically, she must have been so frightened. After being taken from the only environment she had ever known, surrounded by the only people she had ever known, where she had been left alone in a dim and dirty room, day and night, Danielle was transported to the brightly lit, ultrasanitized, loud, bustling environment of a children’s hospital. She was being bathed, changed, and examined by complete strangers, eating unfamiliar food, and sleeping in an unfamiliar bed. Garet told us that she had been placed in an oversized crib, with bars that reached higher than she could climb. I thought she must have been, at the least, confused and disoriented, if not terrified, and I felt so sad for her.

Whether Danielle knew it or could express it, all that she probably wanted was to be held on someone’s lap like a child with her mother, safe, secure, and loved. Instead, she was being poked, prodded, and tested. I hoped that during the testing and the observation, someone took a moment to give her a hug, stroke her hair, kiss her forehead, hold her hand, and whisper reassurances in her ear.

She certainly needed them. “Aggressive, self-mutilating and repetitive behaviors were noted by staff.” She had reduced eye contact. She was not potty-trained, although she was six years and nine months old. Her lungs, heart, hands, feet, and nails were normal. There was no scoliosis. There were bruises and insect bites on her extremities. The doctor noted subtle dysmorphia, as well as macrocephaly with a broad forehead and apparent hypertolorism. I wasn’t sure how to pronounce those terms, much less what they meant.

But Garet had done her homework and had made notes on her copy of the
Child Study.
I did the same on mine, though I intended to look the terms up on the Internet when we were back home.

Dysmorphia is an unrealistic body image, like when thin girls truly see themselves as fat and starve themselves over it. We didn’t know how Danielle could express anything like that to a doctor, but Garet thought maybe it meant that Danielle perceived herself to be smaller than she was.

Macrocephaly occurs when the head is abnormally large, and hypertolorism is an abnormal distance between two organs or body parts, frequently the eyes. Maybe I hadn’t been looking closely enough at Danielle’s head when we were with her, but it didn’t seem very big to me, and although her eyes were wide set, they did not seem abnormally so. On our way to meet Garet at the restaurant, Bernie and I talked about how pretty Danielle was, much more than we anticipated from the original picture we had seen through the Heart Gallery.

The doctor requested more testing—chromosomal, fragile X DNA, and genetic. He noted that although Danielle’s developmental and behavioral difficulties appeared to have some familial basis, he believed that much of her delay was based on environmental neglect. Developmental pediatricians also assessed Danielle and felt that her development on a physical level—gross and fine motor skills—as well as her speech and socialization, was delayed to approximately the four- to six-month level.

That was a blow. I tried to remember what a four-month-old does, but it had been years since I’d had one, and a child’s first year goes so fast, you barely have time to write one milestone in the Baby’s First Year book before another one happens. There had been few milestones to mark in Danielle’s life, and I’m sure no one would find a Baby’s First Year journal in her house.

The mother was also questioned by the same team. She told them that Danielle had never talked, could not feed herself, and had never been to see a doctor. Never? I couldn’t fathom it. I had always been so compulsive about checkups and immunizations. I kept all of the boys’ medical reports in folders, along with notes on sick visits and the occasional trip to the ER that is as much a part of raising kids as coloring on the walls and juice stains on the sofa.

Our boys were healthy and reached developmental markers at the appropriate ages. How could this woman not take her daughter to a doctor when she wasn’t speaking at two years old? Didn’t Danielle ever once get sick? Have a sore throat, an ear infection, or an upset stomach? Yet the mother told the examiner that she had no concerns about her daughter’s health.

The mother admitted that she kept the child inside because she was afraid that she—the mother—would get in trouble because the child was not ready for school. She said that Danielle walked at one and a half years and could say three to four words, including
mom
,
love
, and
bro.

Garet looked at us and shook her head. It seemed to me that if Danielle had been speaking, she would have spoken to Garet, Mr. O’Keefe, or Ms. Perez, and so far, she had not.

The mother later contradicted her earlier statements and said that Danielle could feed herself, although her diet consisted mainly of finger foods, canned pasta such as ravioli (which I assumed she picked up with her fingers), and anything she was able to drink from her sippy cup.

In late July, while still in the hospital, Danielle was also evaluated by Dr. Kathleen Armstrong, the director of the Health Pediatric Psychology Program at the University of South Florida (USF). It was Garet who took Danielle to those appointments. Garet told us that normally they would get an assessment from a myriad of doctors, but Dr. Armstrong is a nationally recognized expert in severe trauma, and she was recommended by Tampa General.

Garet drove Danielle to USF and walked with her to Dr. Armstrong’s building, holding her hand so that she wouldn’t bolt, which was one of her favorite things to do. It was easy to gain access to the break area from the waiting room, so Danielle went in there and walked around banging on soda machines, rearranging chairs, and was just constantly moving. One of Dr. Armstrong’s staff was eating lunch in the break room, and she had some cold chicken on a plate. Danielle walked over to her, grabbed a chicken leg, put it in her mouth, and looked at Garet, then at the lady. The lady got so mad. She told Garet, “Get your daughter away from my lunch.” The thing with Danielle, Garet explained, was that unless you looked really closely or she was having a fit, she didn’t appear to be obviously handicapped. Although she was on medication that caused her to drool and her tongue to hang out the side of her mouth when she was tired, she didn’t look like a Down syndrome child, and she wasn’t in a wheelchair. She could be mistaken for a very ill-behaved little girl—which is probably what this woman assumed. You wouldn’t think the lady would want the chicken after it was in Danielle’s mouth, but she did. So Garet tugged the chicken leg out of Danielle’s mouth, washed it off, and laid it back on the woman’s plate.

Bernie was laughing so hard at the story that he nearly choked, and I think I smiled for the first time since we had sat down with the report. We could both visualize Danielle with a chicken leg in her mouth, probably looking like one of our dogs when it takes something it knows it is not supposed to have.

The moment of humor was brief, because the information on the next few pages was devastating.

Dr. Armstrong’s report included observations from the hospital, as well as input from Garet. Danielle was reported to be eating like an infant, tolerating a bottle with milk and some table foods, which had to be fed to her. Her sleep habits were often disrupted, although she napped two times a day for thirty to sixty minutes. That sounded like a plus to me. My kids’ naps were my favorite time of the day, and my boys stopped taking them long before I was ready to give up this quiet break.

Danielle was described to Dr. Armstrong as a little girl who kept to herself and did not initiate contact. In the hospital, she initially exhibited self-stimulatory behaviors, including head banging, head shaking from side to side, hand flapping, aversion of gaze, and rocking and pulling away from attempts at contact. After several days, the hospital staff said that she was making brief eye contact and would allow hugs. But “she roams about the hospital floor or playroom without purpose. She does not use a crayon or a spoon. She does not stack blocks. She does not help with dressing or use a cup.

“Danielle laughs and occasionally uses babbling sounds, but is usually silent. She does not follow one step commands.”

The next section was a combination of two different testing methods to measure where Danielle was in certain abilities and functions. It was eye-opening, to say the least.

I wondered whether my face looked like Bernie’s—a combination of shock, sadness, and anger. I felt like we were being pummeled, and the blows kept coming.

Danielle’s next evaluation was done nearly a year after she had been removed from custody. She had been living in the Medical Foster Home for nine months, had been in Mr. O’Keefe’s classroom for about seven months, and was nearly eight years old. Even so, it was more of the same. “She will start crying and screaming for no reason. She is not able to feed herself. She is not able to speak. She walks on her tippy toes. Her cognitive function, communication, social and emotional interaction and self-help skills are severely delayed. She moves about the room with her own stimuli. She makes sounds that are similar to an airplane.”

And yet—I knew I was desperately seeking just a shard of hope—“Danielle will briefly focus on faces and does seem to discriminate against strangers. It appears she is beginning to show some object permanence. She typically puts toys in her mouth but makes no attempt to eat them. There was what appears to be some autism, though no active hallucinations or delusions. She does not appear to be psychotic. She is not verbal in any domain and does not appear to have the skills necessary to speak, although her caseworker did note that she is able to say a few words.” That sounded positive to me, and I could see Bernie’s face relaxing a tiny bit.

And in the next section, which was educational information dated November 2006—the start of Danielle’s second year in Mr. O’Keefe’s room—she was described as a “happy, active and affectionate child.” I could tell after spending even just a little time with Mr. O’Keefe that those were his words. I sensed that he was a man of great faith and empathy, who believed that anything was possible. He explained her limitations and challenges, but he did it in a positive and loving way.

“She enjoys repetitive movements with toys and other objects found in the classroom. She also likes to use voice output devices and vocal toys to make noises. Danielle is unable to stay seated during mealtime but she will stay seated in a chair with very close adult proximity and verbal encouragement. She can run and climb. . . . Danielle has infrequent crying episodes where she becomes very agitated. . . . Socially, she smiles often, makes fleeting eye contact and shows recognition of caregivers. . . . She seems to feel comfortable among her peers in most of the school environments she is exposed to. . . . She indicates her feelings through vocalizations such as crying and laughing.”

That was the good news, and I was very grateful for any tiny morsel of hope.

“As a result of Danielle’s disability, her cognitive skills are below what is required for success in the general curriculum with modifications. She requires continuous supervision to prevent her from getting into a dangerous situation, such as climbing or running toward danger. . . . She requires assistance for participation in all classroom activities, social skills and daily living skills. . . . Danielle’s expressive and receptive communication skills are severely delayed. She has limited understanding of basic vocabulary. She has difficulty carrying out directions from others, attending to an activity and indicating choices.”