Puzzle Pieces
In the beginning our school district tried to meet Travis’s needs. The problem was that they were convinced that his issues were only emotionally based. And I did agree at the time that he had an emotional disorder of some type. But I also felt that there was more to his story.
I felt certain that he had some type of learning disability.
By this time Travis had a new diagnosis. Originally his pediatrician diagnosed him with ADHD. But the medications were not helping and his behavior was explosive. He had started to see a psychiatrist and was diagnosed with Bipolar disorder.
Travis was very easily frustrated. Many times when he was presented with work at school he would become verbally and physically assaultive.
As the district continued to assess him it was noted that his scores were very significant for poor attention, poor impulse control, poor anger control and excessive resistance.
In third grade he was placed in a self-contained classroom with two other students.
By this time he had been on several medications. Dexedrine for the ADHD diagnosis. And when it didn’t appear to be working the doctor increased the dosage. Five mg, then ten, fifteen, twenty. During this time Travis lost twelve pounds, over twenty percent of his body weight. The pediatrician then prescribed Adderall.
When he received the Bipolar diagnosis Travis was weaned off the previous prescriptions and started taking Depakote and Seroquel. Travis continued to struggle. The psychiatrist added Paxil to his medication cocktail.
We immediately had concerns. Travis became paranoid. He thought the aliens were coming for him. One time I found him hiding under clothes in my closet.
The psychiatrist stopped the Paxil and prescribed Zyprexa.
And when that didn’t work: Ritalin, Clonidine, Risperdal, Trileptal….
All by the age of nine.
We began to worry that the prescriptions may be aggravating his behavior instead of helping him.
The school district’s patience was wearing thin. The school began to suspend Travis for his behavior. Again and again. I argued that they could not suspend him for behavior as it was a manifestation of his illness.
One day Travis came home and told me that the special education director told him that when he got to ten suspensions he was out of there. Wow. Just wow.
That was the first day that Travis began to purr. He made this purring sound all day every day. Except when he was talking or eating. He made it to his ten suspensions in no time.
The school told us to take the week off before the two week Christmas break while they came up with a plan.
With a three week break from school, we decided this would be a good time to wean him off all of his medications. I had researched a vitamin/mineral supplement program that was developed to help people struggling with Bipolar disorder and were not responding well to prescription medications.
We met with the school district after Christmas break. We were anxious to hear about the changes they were making to help Travis. And we were excited to see if he did better now that he was no longer taking prescription medications.
The school was not at all interested to hear about the supplement program that Travis had started. Over the break they had decided that they could no longer serve Travis’s needs. They had seen enough and told us that he needed to be in a setting that was better able to handle his behaviors.
We were desperate to find the missing pieces in Travis’s diagnosis puzzle.
During this time I received a phone call from an acquaintance. He was actually the father of a child that had been on Travis’s T-Ball team over a year before. He felt awkward calling me. But he wanted to tell me that he had just seen a special on Asperger’s Syndrome. He thought Travis fit the description.
I thanked him for calling and immediately began researching Asperger’s Syndrome.
One of the most informative and easy to read books that I came across was “The ADHD Autism Connection” written by Diane M. Kennedy.
Diane is the mother of three boys. The oldest was diagnosed ADHD. Her middle boy was also diagnosed ADHD but he did not respond to medications and treatments like her oldest child. She was often told that her middle boy was the worst case of ADHD that his teachers and therapists had encountered. She knew there was more to his diagnosis and conducted research until she found the correct diagnosis. Asperger’s Syndrome. Her third son was diagnosed ADD.
Her middle son would have numerous temper tantrums, disrupt class and refuse to go to gym if he could not be the line leader for the twelfth week in a row, Although his behavior looked like that of a strong willed child who challenged authority, Diane knew that something just did not fit his diagnosis. Her son actually got along better with adults than his peers.
After carefully examining his behavior she concluded that her son’s tantrums were not in response to being told what to do; they occurred in response to some change in his environment or routine.
She also noticed he had an extreme sensitivity to sensory stimuli. (Sounding familiar?)
All of the ADHD research left her more confused. Impulsivity, hyperactivity and inattentiveness did not begin to address the complexity of her middle son’s behavior. The medications were having little effect on him. The medications worked wonders on her other two boys.
Diane met a mother who steered her in the direction of researching autism. The autism checklist described her son’s behavior completely.
She knew that something was not right when her son failed to outgrow the tantrums, the rages, the learning difficulties, the advanced vocabulary, the speech delays, the auditory processing problems, the repetitive play and the problems with playmates.
In the book Dr. Lorna Wing states, “A diagnosis of Asperger’s disorder often comes after a child starts school, especially if there has been no significant delay in language. This is because in a school setting, the impairments of social interaction along with the inability to engage in reciprocal conversation emerge readily.
In other words, a child’s inability to take turns in conversation, read another’s body language, and understand the unspoken rules for behavior and play appear quite readily in a classroom environment.”
Diane states that ADHD researchers frequently regard the social difficulties of ADHD children as willful, conscious behaviors. There is the view that the ADHD child has the capacity to learn social behaviors and to interpret social cues but chooses to ignore the appropriate responses in lieu of immediate gratification.
This approach implies that the behavior is a result of choice.
Diane questions how researchers can claim that a social behavior emerges from a biological impairment and at the same time assert that the behavior is willful and selfish?
In her book Diane acknowledges that parents of these children have tried everything.
Positive reinforcement, charts, time-outs, holding, calm communication.
Parents (including me) are tired of being judged by society.
In other words, parents have approached their child’s oppositional behavior as something that can be modified by teaching appropriate behavioral responses through punishment and reward rather than seeing the behavior as “an attempt to navigate in a world that they are not equipped to fathom.”
Diane argues that the belief that children with these disorders can learn to diffuse the explosive behavior by applying the time and consequence theory assumes that the child can create goal-directed behavior, shift attention easily, regulate impulsive responses and use reasoning, foresight and premeditation to solve problems.
Researchers in autism assert that children with impairments in executive function have: the inability to plan and prioritize; the inability to assign attention to competing stimuli; poor judgement; and weak organization skills.
The following excerpts are from the book “Asperger’s Syndrome” by Tony Attwood. This list describes an individual on the autism spectrum:
Lack of social skills.
Limited ability to have a reciprocal conversation.
Intense interest in a particular subject - animals, science, transport.
Cannot read body language.
Make comments that are true but potentially embarrassing.
Exceptional concentration when engaged in their special interest.
Original method of problem solving.
Lack of motivation and attention for activities that would enthrall others.
Assessments that indicate specific learning disabilities.
Less aware of personal space.
Dominates social interaction.
Self centered.
Prefer to be with much younger or older children and adults.
Social contact is tolerated as long as the other children play their game according to their rules.
Inappropriate laughter, giggling for no apparent reason.
Difficulty not interrupting.
Pedantic speech - they are not bins they are wicker baskets; the word is gasoline not petrol.
Not good with indecision, parents and teachers need to avoid ambiguity.
Auditory processing issues, unable to tune out background noise.
Routine must be completed.
Computers are appealing, you do not have to socialize with them, they are logical and consistent, they are not prone to moods.
Not motivated by desire to please teachers, parents or friends.
Chaos and uncertainty are intolerable. Routines are means of coping with anxiety.
Motor clumsiness - difficulty tying shoelaces, poor handwriting, lack of aptitude in sports, rapid blinking.
Difficulty with cognitive flexibility - one track mind. Rigidity in thinking affects behavior, if child decides something needs to be done there is nothing that can deter them.
Less able to learn from mistakes.
Hyperlexia - highly developed word recognition but very poor comprehension of the words or storyline.
Considerable difficulty cracking the code of reading.
Signs of dyslexia, difficulty learning to spell.
Conspicuous fear of failure, criticism or imperfection.
Sensitive to particular sounds and forms of touch. Noisy gatherings, telephone ringing, chairs scraping the floor, someone coughing. To empathize with these children, liken the noise to fingernails scratching a blackboard.
One of the features of the acute sound sensitivity is the degree of variation in sensitivity. On some days the sounds are perceived as unbearably intense, while on others they are annoying but tolerable.
Tactile sensitivity - reluctance to wear a variety of clothing.
Difficulty understanding the thoughts of others.
This list described Travis to a T. The school district was reluctant to modify Travis’s IEP (Individual Education Plan) to add an autism diagnosis. I believe the reason they were reluctant is because autism is a medical diagnosis. With a medical diagnosis they would need to make changes to his IEP that may cost the district more money to put into place.
We were at an impasse with the district. We agreed to an out of district placement because we thought it would be short term. We couldn’t be more wrong.
We believed that we were close to getting the puzzle pieces in the right place.
I am grateful to the parent that called because he cared.
And I am grateful to the parents that researched possible diagnoses for their own children and then wrote a book to help other parents find their way.
“You are now in a secret world. You’ll see things you never imagined: ignorance, rudeness, and discrimination. But you’ll also witness so many everyday miracles, and you’ll know it. You won’t think a milestone is just a milestone, you’ll know it’s a miracle. You’ll treasure things most wouldn’t think twice about. You’ll become an advocate, an educator, a specialist, and a therapist, but most of all, you’ll be a parent to the most wonderful child.” — Geraldine Renton