24 Oct We Tried Normal – 2e Family Stories: Chapter 6
Daniel is nine years old, profoundly gifted, and diagnosed with sensory processing disorder and ADHD. He was misdiagnosed with autism when he was six. His mother, Dawn, explained, “Our pediatrician referred us to a neurologist and she referred us to a psychiatrist. Within the first five minutes of the appointment Daniel crawled under the chair and started doing stimming kind of stuff because he was stressed out. The psychiatrist took one look at him and told me it looked like autism. His eventual diagnosis concurred with his initial impression.”
Dawn accepted the autism diagnosis and diligently followed the advised protocol. Daniel went to autism communication classes and did autism summer camp, but both were a disaster for him. “It took eight therapists to figure out what was going on with him because it turns out he has all these sensory issues and he was in situations that were triggering him. He was screaming when the kids were too noisy and in his face, and then he got aggressive. We had never seen him like that. We’ve learned that you have to try a lot of doctors until you find one who gets it. It makes all the difference in how you and your child are treated.”
Dawn’s frustration with doctors started when Daniel was a baby. Daniel was born five weeks premature and cried almost non-stop for the first three months of his life. He was an agitated baby and she had trouble getting him to nurse or sleep. He startled at the slightest sounds and appeared to be sensitive to bright lights. Dawn recounted that she was so sleep deprived that she developed an irregular heartbeat.
When Daniel was five months old he began to point to his stomach and say, “Ow.” It took about four times before she realized what he was doing. When it dawned on her that he was speaking, she was a little freaked out. But since he was a fussy eater who often threw up, she decided to take him to the doctor for a check up. While she described Daniel’s symptoms the doctor listened and nodded until she described how he told her his stomach hurt.
At that point the doctor smiled and told her that babies his age could not talk. She tried to coax Daniel to tell the doctor that his stomach hurt, but the more she tried, the more disapproving the doctor seemed. Finally, Dawn gave up, mumbling that he really did do it at home.
She blushed at the memory. “The doctor was sort of condescending, like he knew I was a new mom with little experience, so he could just dismiss what I was saying. He warned me about pushing my child to do things he was not cable of doing. I felt both angry and intimidated. You know it made me feel humiliated and ignored.”
Things did not improve for Daniel. In fact, he continued to have trouble keeping food down and continued to tell her his stomach hurt. But Dawn felt like she couldn’t talk to her pediatrician without fear of judgment.
When Daniel was eight months old, Dawn finally decided to switch pediatricians and took Daniel to a new doctor. Dawn told the new doctor about his vomiting and crying, but decided to leave out his verbal complaints, since her former doctor had not believed her. As the doctor was palpitating Daniel’s abdomen, Daniel pushed his hand away and blurted, “That hurts!”
The doctor nearly dropped his stethoscope and looked at Dawn with surprise, “How many words can he say?”
Dawn worked up her courage and told the doctor that her son spoke his first words at five month’s old and was now saying simple two or three word sentences. “The doctor told me that was unusual, but he couldn’t dismiss me, because he heard it for himself.” The new doctor also seemed determined to find the root of Daniel’s problems and eventually ascertained that he had severe food allergies.
Despite his health problems, Daniel continued to reach intellectual developmental milestones far ahead of his age peers. His father, Theo, read to Daniel from the time he was a baby, pointing out letters and saying the sounds they made. At eighteen months, Daniel started reading simple words without help and within six months was burning through early reader children’s books. His reading ability and vocabulary continued to grow exponentially; by age five he was reading chapter books with ease. Dawn signed him up for kindergarten at their local school and talked to the principal about Daniel’s advanced reading abilities and food allergies. The principal assured her that she would be able to handle both issues satisfactorily.
Daniel went to kindergarten with many of the apprehensions shared by other new students. Unfortunately, things did not get easier for Daniel as school progressed. While his classmates were settling into the routines and expectations of school, the constant noise, movement, and transitions that are part of a normal kindergarten day overwhelmed Daniel. He had trouble sitting still during quiet times, blurted out the answers to every question, and refused to read kindergarten books or do any worksheets. His teacher reported to Dawn that he constantly fidgeted, looked around the room, avoided eye contact, and had to be prompted, two or three times, to follow directions. To make matters worse, his fine motor skills were extremely weak and he often had difficulty with the writing, drawing, and cutting projects. At recess he sat in the corner of the small kindergarten playground with his sweatshirt pulled over his head.
After the first month of school, the teacher called Dawn in for a conference. She was concerned with Daniel’s poor motor skills, lack of social interaction, and hyperactivity during class time. The teacher told Dawn that she didn’t see any evidence of advanced abilities. In fact, she was concerned that he might be developmentally delayed and recommended that the school psychologist see him as soon as possible.
Dawn exclaimed, “So here is this kindergarten kid who can read Harry Potter and do multiplication and division and the teachers are telling me they are concerned because he can’t cut with scissors or sit still in circle time. There was just no recognition of his assets.”
Despite her frustration with their assumptions about Daniel, Dawn agreed to have him assessed and an appointment was made. When the psychologist returned with the results of the test, she told Dawn that Daniel tested quite high in the verbal abstract reasoning subscale, but overall he didn’t score in the gifted range. She did comment that talking to Daniel was like talking to a miniature adult, but advised this didn’t determine giftedness, as some children are just good conversationalists with adults.
Theo and Dawn felt that the school psychologist hadn’t understood their son’s abilities and decided to have him tested privately by a psychologist who specialized in assessing gifted children. Those results showed that Daniel was profoundly gifted. Dawn shared the private psychologist’s results with Daniel’s principal and teacher and asked them to acknowledge his needs and differentiate his curriculum.
Dawn offered to come in and volunteer in the classroom, to help with Daniel any way she could, but the teacher refused her help. Despite assurances from the principal, that they would accommodate Daniel, Dawn and Theo saw no significant changes in the curriculum. Two months later, they made an appointment with the principal and insisted that something be done to accommodate Daniel. The principal offered to accelerate Daniel to a first grade class and place him in a weekly social skills session with the school psychologist.
The change of classroom was difficult for Daniel. He didn’t adjust well to a new teacher and classmates, so continued to be an outsider. The first grade teacher felt he should be able to keep up with his classmates without any special accommodations. Dawn noticed that being labeled as “gifted” by the private psychologist immediately put school expectations on Daniel that he was not capable of performing.
For instance, the poor handwriting became an immediate issue, as did his refusal to read aloud in class. Dawn offered to volunteer in the classroom and the teacher agreed to have her come and help with the reading groups. On her appointed day, Dawn arrived early and was entering Daniel’s class when she saw his teacher holding up his paper and saying to Daniel, “I would think a gifted student could do better work than this.”
Dawn was upset and went to the principal’s office to discuss her concerns. The principal assured her that he had placed Daniel with one of his best teachers and there had never been a complaint against her. He also suggested that the teacher was probably trying to help Daniel improve his work, and that children need to be able to take criticism.
Dawn complained, “I’m sure he thinks I am overprotective. He actually told me, ‘Well, he needs to develop a thicker skin.’ That mentality makes me feel like I have to be vigilant just to keep our son from being broken down.” Daniel refused to talk about the incident, but told Dawn he didn’t want her to say anything to his teacher.
Dawn continued to work in the classroom and tried to help her son succeed at school. She kept a low profile, didn’t raise any issues with the teacher, and generally attempted to smooth Daniel’s path in subtle ways. Dawn felt the teacher resented her and disliked having to do extra work with Daniel.
Dawn sighed, “The biggest roadblock was the teacher. She was just completely insensitive and resentful. When I tried to work with her, she wasn’t willing to work with me. She dismissed me, and anything that I tried to share with her about my own son. The worst thing for Daniel was that he was bored out of his mind and yet he couldn’t do a lot of the work. He didn’t get help with either the thing he was great at, or the thing he was weak at.”
Daniel continued to struggle at school; he was reluctant to do his assignments and spent much of his time staring out the window.
At home it was a different story. Daniel’s weekly trips to the library resulted in selecting stacks of books so large they could barely be lugged home. His interests were wide and varied, each week found him reading another set of books on any number of subjects.
At this time, Daniel began to have difficulty sleeping at night. Dawn tried all sorts of bedtime routines to get him to settle in, including taking away all the books and staying in his room with him to try to get him to sleep. But nothing helped. He would lay awake thinking and talking to Dawn about all the things he had been learning that day. “It was like he just couldn’t shut off his brain.”
The lack of sleep was taking its toll on Dawn, so she finally decided to let him read books as late as he wanted.
“I finally acceded to the fact that he is just wired this way. I suspect he will always be a night owl, so I decided to ignore everyone’s judging me as a bad parent and just let him stay up late.”
While his erratic sleep schedule was exhausting for them, Theo joked that Daniel was going to “night school,” since he spent so many late nights reading and researching topics of interest. He often quizzed his parents about things he was reading, to see how much they knew. Theo called it “playing mental catch” with Daniel because they were “throwing ideas, instead of a ball, around.” Daniel loved doing it.
Dawn proclaimed, “At home he was on fire! He had the flexibility to work how, when, and where he liked. He had the autonomy to work on what he loves in the way he works best.”
Daniel also elicited his parents’ help in using the computer to look up information. For example, after seeing a place value chart that showed numbers to the millions, he wanted to know how high place value went. When Theo told him it went to infinity, Daniel wanted to know all the names of the numbers from zero to infinity. Daniel and Theo spent many hours conducting research on the Internet to make a place value list from the ones to the centillions. When Daniel’s interest was sparked about a particular topic, he would work on that topic for weeks, sometimes even months. When he was in his “math phase” he loved to watch math videos and look at websites that taught him about math. He studied math through diverse sites, like Math Cats, Mathemagician, and Kahn Academy. He taught himself how to do mental speed calculations, which he delighted in demonstrating to anyone who would listen. As he cycled through various phases, he was able to retain his newfound knowledge, and take up where he left off when he cycled back to each phase.
As Daniel became more adept at navigating the Internet, he began to want to spend more and more time on the computer. Dawn and Theo wrestled with this quite a bit. Theo mused, “You are given so many warnings about letting your kids use the Internet and limiting their time on the computer, but Daniel wasn’t playing games or surfing inappropriate stuff, he was researching black holes and calculus. We were so exhausted trying to keep up with his need for intellectual stimulation, that frankly, the computer was a godsend!”
They decided to let Daniel have supervised, but unrestricted, computer time. There was only one small incident that resulted from Daniel’s newfound freedom. One evening, Daniel overheard Dawn and Theo talking about lowering their bills and decided to find a way to help. Late that night, he sneaked onto the computer, went on a debt consolidation website, and filled in all the necessary information. The following day, Dawn got a phone call from a loan officer at a refinance company. He was not amused when Dawn tried to explain that her five-year old son had been the person contacting them and they actually were not looking to refinance. Theo and Dawn had to sit Daniel down and reiterate, in stronger terms, why he should never reveal personal information online.
Despite that issue, they decided to continue to give Daniel unrestricted time on the computer. “We finally decided that if he had been a piano prodigy, no one would have told us to limit his time on the piano; so we just acknowledged that this was his tool to develop his own form of genius and decided not to limit his computer use,” Theo stated.
The rapidly accelerating, high-level learning continued at home, yet he received failing report cards from school. Finally, the school year ended and Daniel managed to finish first grade. “The contrast was so sharp. His teacher wrote on his report card that she believed he was capable of much more than he was doing, that he needed to be more focused on his work, and should practice his penmanship.” Dawn wondered how a boy, who could be such an incredible learner at home, could receive unsatisfactory marks on a first grade report card.
Over the summer, Dawn met with a district official to find out what other options were available for Daniel. It was obvious he was not thriving in school, intellectually, or socially. They agreed to have the school psychologist give him an achievement test, to see where he was academically. The testing showed this second grade boy had a twelfth grade reading comprehension level and a sixth grade math level. The district agreed to accelerate Daniel to a fourth grade class part-time and provide one-on-one instruction through private part-time tutoring. He would also continue to see the school psychologist to help him deal with any social issues that came up due to academic acceleration. Dawn felt he probably wouldn’t learn anything during his time in public school, but hoped it would give him a place for social interactions with his classmates.
Despite her concerns, Dawn shuttled Daniel between school and tutoring. At his public school, he continued to be frustrated with the pacing and rigidity of his assignments, which led to increased behavior problems. As the year progressed, he continued to struggle. He had issues with staying focused and sitting still, his motor skills were slow to improve, and he was a social outcast.
Yet, with his one-on-one tutor, he began to thrive. They rapidly moved through extremely high level work: learning to read and speak Greek, accelerating from middle to high school math curriculum, and exploring the social and economical implications of world history. His tutor found Daniel to be a socially pleasant companion, a voracious learner, and a dedicated student who spent every minute of their time together seeking information. There were no behavior problems while Daniel worked with the private tutor.
At his second grade mid-year parent-teacher conference, Dawn was told that her son was disrespectful to the teacher (because he corrected her in front of the other students), was too immature to be in a fourth grade classroom (because he liked to hug the other students and cried if he saw someone else in pain), and was lazy (because he didn’t do his homework or class room worksheets). The teacher also told Dawn that it was extremely difficult to create special assignments for Daniel, as she had 31 other students to whom she must attend.
Dawn was disheartened by the teacher’s comments and sad to see that Daniel’s desk had been placed near the door, away from the other students who were grouped at tables. The teacher told her she had done so because she thought it would be less disruptive as he came and went to his tutoring. Dawn understood the teacher’s reason for placing Daniel near the door, but she worried that it would make Daniel feel even more isolated.
Dawn did what she could to maintain Daniel’s educational plan as they limped along through the second half of the year. It was in the early spring that Dawn noticed something was definitely going on with Daniel. He wasn’t interested in trips to the library or on-line research and wanted to spend most of his day playing video games. She finally got him to talk about what was bothering him, “He told me he didn’t want to get any smarter, because the smarter he got, the worse it was for him at school.”
Dawn confided she didn’t know how to reply to this, because it was obviously true. “Daniel experienced a lot of stress in school. The stress of trying to deal with the things that are too hard, linked to the stress of managing boredom most of the time. As long as he worked really hard to be average, to stay in the middle, they were fine. The minute he expressed needs on either extreme end of the spectrum, we found that there wasn’t anything for him at all.”
A few weeks after the winter break, Daniel began to complain of stomach and headaches. Then his grandfather died and Daniel began to have debilitating anxiety attacks whenever anything he felt attached to was lost.
“His grandfather’s death was a pretty big crisis. Our son just looked into the great void of existence and he was so depressed. For a month he was crying and trying to come to terms with it. It was just so terrible, nothing I tried worked; I couldn’t help him through that,” Dawn lamented.
His anxiety even began to spill over into hoarding items, to prevent them from being thrown away. Dawn was afraid that things would just get worse if she left Daniel in his public school much longer.
As the school year was winding down, Dawn applied to a private school that was renowned for its academic rigor and its individualized education. Daniel was granted conditional acceptance, pending the results of a shadow day and assessment by the school psychologist. Daniel was so excited to try a day at the new school that he insisted they arrive early. He rushed to his shadow classroom and introduced himself to the teacher. They chatted amiably until the other students arrived.
At the beginning of class, the teacher passed out a math worksheet and asked the students to complete it. As they were working, the teacher came to Daniel’s table and began to verbally quiz him on increasingly difficult math questions he read from a sheet, then looked at the sheet to check each answer. Daniel was uncomfortable with being singled out, as he was trying to fit in with the other students, but dutifully answered each question. Finally, he made an error and the teacher exclaimed, “Ah, see, there is something I can teach you after all.”
From that point onward, the day began to unravel for Daniel. He joined a game of baseball during recess and did not play well, as he is physically uncoordinated. He loved baseball, and desperately wanted to be good at it, so his lack of prowess was extremely frustrating to both Daniel and his teammates. After several failed attempts, Daniel pulled himself out of the game and watched from the sidelines.
After recess, Daniel was tested by the school psychologist and rejoined the class in time to do partner reading with kindergarten students. Daniel was placed with one of his shadow classmates and that boy’s kindergarten partner. Initially, Daniel sat quietly as his classmate read to his little partner. The boy was not a strong reader so Daniel corrected him whenever he made an error. The boy began to get angry and told Daniel to stop correcting him, but as the reading continued, Daniel did not stop. Finally, his classmate shoved the book at Daniel and told him to read it since he seemed to think he was so smart.
At lunchtime, the school psychologist called Dawn and told her she could come and pick up Daniel; they didn’t think he was a good match for the school. When Dawn asked them why, she was told he was too advanced intellectually, but too immature socially, to fit in with their student body. When Dawn picked up Daniel, his whole body sagged with defeat. She hugged him and told him it didn’t look like the school was going to work out. He looked at her with tears in his eyes and whispered, “They don’t want me, do they?”
Dawn confessed she didn’t know where else to turn for help in educating her son. She was distraught to think that there didn’t seem to be any place where Daniel fit in and she knew that he was beginning to internalize this rejection and see himself as a failure.
“He used to be such an emotionally healthy child. Just so centered and aware of himself in terms of his place in the universe, but then as he began to be more and more exposed to the world outside our home, he started to feel different and wrong, somehow. It has really damaged his self-esteem,” Dawn mused sadly.
 IQ of 175 and above according to the WISC-V, a widely used IQ test
 A disorder in which multisensory integration is not adequately processed in order to provide appropriate responses to the demands of the environment
 A chronic condition marked by persistent inattention, hyperactivity, and sometimes impulsivity
 Repetitive body movement that self-stimulates one or more senses in a regulated manner.