Next Step Therapy Blog: ‘Bad’ or Broken

Tracy 1Tracy Cowles, CEO and owner of Next Step Therapy, submitted the following article on behavioral disorders:

“BAD” or BROKEN?

I had a project that needed done, so I hired a crew through a reputable company to do it. A group of four women arrived, none of whom I’d met. As the job was progressing, some of the women and I started to chitchat. I explained what I “did.” One of the ladies told me that she had six children, ranging in age from two years to eighteen years. Daycare to college. I said that it must be hard to work and take care of her family. She said, “Well, maybe you will understand. I don’t have to work for the money. My husband has a great job. I work so that I don’t kill my six-year-old. I shouldn’t say that out loud.”

I was intrigued, so I gave her encouragement to tell me about it. The story basically went like this: After having four perfectly normal, healthy children, spread quite far apart so that each would have individual time with parents, the fifth child was born. She was different from the day they brought her home. She didn’t want held. She didn’t want attention. She was fussy in a room full of people, content in her crib by herself. (Ding, Ding, Ding – Autism Spectrum?)

She hit all of her developmental milestones early (holding her own bottle, crawling, walking) so she did not trigger developmental delay with the pediatrician. (Advanced? Gifted? Autism Spectrum – developing early to be independent and away from people?) Her pediatrician ignored the parents’ concerns about her less than one-year-old attitude. She was just different from their other four, she was independent, she was an “easy” baby.

By eighteen months she was eating only a limited amount of foods. She had not progressed like the other kids through baby foods, soft foods, and now adult foods. She ate very little. She was at the bottom of the growth chart, and now the pediatrician was concerned. But not with the child. With the parents. “Make her eat.” “Make her sit in her chair until she finishes.” “Try high calorie drinks that you buy at the pharmacy.” Mom and dad leave the doctor’s office frustrated, and a little angry. Doesn’t the doctor remember that they have four other healthy, normal children? Doesn’t he think at this point they know how to get a child to eat? You can’t force another human to eat, without being abusive. (Eating disorder? Swallowing disorder? Sensory issues? Gastrointestinal issues?) No referral to a specialist.

By two years, this child refused to be a part of the family. She took herself off to quiet places. She could talk in full sentences. She didn’t follow any directions. The word “no” meant nothing to her. Punishment didn’t faze her. Praise and rewards did not produce duplicate behaviors. At this point, when a parent tried to make her do anything, from eating to going to bed, she kicked, bit, scratched and howled like a feral animal. She did get potty trained, though. Wanting more independence, less interaction with people?

Another baby gets born. Baby number six. The baby can never, never be left alone with the other child.

Fast forward. Now she’s six. She’s been expelled from two daycares. The grandparents will take any of the other five kids at any time, but not her. They are afraid of her. They have a small dog that she might very easily torture and kill. She is now in kindergarten. In the six weeks that she had been there, she has injured two other children and herself, and reduced her teacher to tears multiple times. Earlier in the week, she had actually completed a work sheet for the first time and got 100%. The teacher praised her for her good work. She went berserk. Punched the teacher and the kid next to her, started throwing furniture while screaming like a banshee. Was physically removed from the classroom by three adults and taken to the principal’s office, where she systematically destroyed everything in the room. All the papers off the desk. Pictures smashed to the floor.

The child has, over the years, changed pediatricians. Been seen by a neurologist. Been evaluated by two psychologists. She still does not have a diagnosis. (Reactive-Attachment Disorder? Probably not, as it is typically seen only in adopted children who were neglected at an orphanage in foreign countries or in terribly neglectful home situations prior to removal). Oppositional-Defiant Disorder? Probably closer. However, according to mom, in each and every one of these evaluations, once the child was evaluated and the examiner couldn’t quite put their finger on a diagnosis, the focus switched to the family. What did you do to this kid? Has she been molested? Did you not want this one?

The vast majority of normally developing tots not only want, but seek out, a loving, close relationship with their caregivers. They want cuddled. As they become toddlers, they wander fifteen feet away, but keep looking back to make sure mom is still there. As they get older, they imitate their parents, talking on a phone, doing housework – they want to be just like them. The average child will follow directions both to get smiles and praise from an adult, and to avoid punishment. This child that we have been describing did none of those things, ever.

She never became attached to anything, like a blanket or stuffed animal, so there was never anything to take away as punishment. She simply didn’t care. Time out for her was a God-send. She wanted to be left alone. Praising her resulted in a tantrum. Since she cared about nothing, there was nothing she wanted as a reward. You can get most kids to do something with a food reward, like candy. This one barely ate, so wasn’t tempted by food. The few times they spanked her, out of desperation, she turned back to them, laughed and told them they should hit harder. Oh wait, Ding, Ding, Ding…. does this child not feel pain? She did not feel pain like other people. Injuries that left her bloody did not produce tears, or in fact, any acknowledgement of the injury at all.

RED FLAG – When you see a child who does not respond to pain, I think it is reasonable to assume that you are looking at a child who is neurologically different from most. To think that this is the one and only symptom of neurological difference, would be a mistake.

After the mom and I talked, I went to the computer and printed out a “Sensory Profile.” This was a parent questionnaire that asked the parent to check off approximately 120 things related to the senses that their child did or did not do. Questions about the child’s reactions to textures of foods, smells of foods, temperature of foods. Questions about the child’s reactions to hot versus cold water, reactions to noise and lights, reactions to their clothing. Mom checked of FIFTY things right off the bat, as I suspected she would.

I explained at this point that I certainly couldn’t make a diagnosis without seeing the child, and that sensory issues are typically the purview of Occupational Therapists, but that her description of her child certainly indicated that a Sensory Processing Disorder needed to be explored. I explained the evaluation process, and sent her on her way with a new idea to try, but also with the task of trying to find someone in the area that knew about Sensory Processing Disorder. Whether she followed through and found someone, I’ll never know.

If this family lived in a big city, like Los Angeles, this child might be able to have a daylong evaluation at a University Hospital, where she would be looked at by five to seven professionals, plus their students. In the rural areas in which I have lived, getting a child in to see a psychiatrist (who probably doesn’t specialize in children) usually takes three months. The child is seen for an hour, is maybe given a prescription, and either goes back for bi-weekly appointments with a psychologist or doesn’t see the psychiatrist for another three months. The diagnosis is tentative. The medication either helps or it doesn’t.

Many readers might think that this little girl is an anomaly. In fact, what she “has” is relatively rare in the general population, but she is certainly not the only one. I would guess that every elementary school in this country has at least one.

The first point that I am making with today’s article is that getting meaningful services that truly work in rural America is beyond difficult.

The second point that I am making today is that some children in our society are so far out of the behavioral norm that even a group of medical, psych, educational, and therapeutic professionals cannot make a diagnosis, agree on a diagnosis, or even come to the logical conclusion that the child might have multiple diagnoses.

The third point that I am making is that regardless of what diagnoses this child ends up with, all of our medical technology, all of our research, all of our “best practice” techniques and all of our medications will not “fix” this child. In some way, she has been neurologically “wired” differently than most of us. The part of her brain that wants praise and affection doesn’t work. The part of her brain that we would call a “conscience” does not seem to work. Her ability to care for other people and understand their feelings is limited at best.

We don’t know what to do with a child like this.

The fourth point that I am making today is that the parents of this child have been vilified. They have been questioned, they have been disbelieved, they have been blamed – by the very people they sought help from.

I cannot tell you how sorry I felt for this desperate mom, who would have done anything, spent any amount of money, religiously would have attended any type of therapy – if someone would just tell her what would work. But, nobody can.

What I can tell you is that the original pediatrician should have listened to the parents’ concerns, and referred them to their local Early Intervention program. The child/family should have been assigned an infant/toddler mental health behavioral therapist. A qualified Early Interventionist in the home would have recognized the sensory and eating disorders, and would have requested additional therapists. Some of these symptoms could have been treated early, and the family would have had a support network. By three years old, these specialists would have determined that the behavioral/emotional component was so far outside of the norm that she needed an evaluation by a top-notch child psychiatrist. They would have helped get that evaluation scheduled.

What I said before was true. We can’t “fix” this child, most likely, but we could have dealt with each symptom as it arose, and worked her into a better comfort level with those food and sensory issues so that the behavior wasn’t as extreme. Going into school, this family would have had an entire chart to show that they had been dealing with the issues for years, with a whole host of specialists. We could have done so much better by this child and her family.

Bad, or broken? This little girl’s behavior is really bad, but it is because she is, in some way, broken.

~Tracy


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