Once parents have completed the What To Do About Your Brain-Injured Child Course, they face a variety of options, ranging from designing their own home program to attending the Lecture Series to applying for the Intensive Treatment Program.
If the parents wish to join the Intensive Treatment Program, a successful Home Consultation will qualify them for the Aspirant Program and their child's initial visit to The Institutes. This is the first step towards acceptance into the Intensive Treatment Program.
During the Home Program Consultation, a senior staff member outlines what, if any, revisions are needed in the daily program. If it is decided that the family is ready for an appointment, they are given one after the Home Consultation.
The family first brings their brain-injured child to The Institutes for a two-day visit, the Initial Aspirant Appointment. While both parents have met the staff when they attended the five-day What To Do About Your Brain-Injured Child Course, this is the first time that the staff will personally see their child, so preparation is important.
Just what is involved in those intensive first two days? To answer that question we followed a family during its Initial Aspirant Appointment, so that their experiences could help families to be better prepared for these important two days.
Gonzalo and Andrea Larraguibel, both natives of Chile, first heard of The Institutes through friends in Mexico who knew a child on the program. They read the book What To Do About Your Brain-Injured Child and felt that it made sense. After attending the course they knew that they wanted to try the Intensive Treatment Program with their young daughter, Camila, and were accepted for an Initial Aspirant Appointment.
–DAY ONE–
#1:CHECK-IN
At 8 a.m. Monday morning, the Larraguibels checked in with the clinic coordinator in the Veras Building. Although they had arrived the night before from New York City, Camila had become ill overnight and none of them had gotten much sleep. The coordinator made a note to have the medical director examine Camila sometime that day. Also, although they are natives of Chile, Mrs. Larraguibel understood a good amount of English, and Mr. Larraguibel was confident enough in English that they did not require translation. This would save them a significant amount of time during their visit.
#2: INITIAL DEVELOPMENTAL HISTORY
The Larraguibels first met with a senior staff member of The Institute for the Achievement of Intellectual Excellence. The parents had filled out the detailed history form for Camila, and the staff member's job was to go over it in great detail to make sure it was completed accurately.
During this time, she learned that Camila appeared healthy at her birth on May 28, 1994, but at age of two and a half months she contracted a bacterial infection. She quickly went into "septic shock" and all of her functions began to shut down, including the transport of blood to her brain. Because the intensive care doctors were intently fighting for her life, they were unable to sort out the cause of the infection. Camila survived, but as a result of the illness her right arm was tight and fisted, her speech and vision seriously impaired, and she began to seizure often each day.
#3: NEUROLOGICAL EVALUATION
The Larraguibels next met the director of The Institute for the Achievement of Physiological Excellence. She meticulously performed a neurological evaluation of Camila, checking each level of the six columns on The Institutes Developmental Profile. She compared the Profile completed by the parents during the course with one done later by the parents at home. She then created a new Profile based on her evaluation that day. Camila's illness made this process somewhat difficult, but eventually it was completed.
The staff member next went over the details of Camila's home program so far, noting which programs were being carried out, the number of times per day, and days per week. The Larraguibels had begun homolateral patterning, the Floor and Inclined Plane programs, and a visual stimulation program. In addition they had tried to improve Camila's nutrition by removing dairy products from her diet and adding more grains and vegetables. The result was that in eight months of home program, Camila had grown nearly three months neurologically, rather than remaining the same.
The parents had learned how to complete the home history and evaluation more accurately. They had not been specific in their tactility assessment in terms of each shoulder, leg, arm, hand, etc., but now understood how to evaluate their daughter precisely.
#4: MEDICAL HISTORY AND EXAMINATION
The medical director was able to see Camila that morning. The previous night her fever had reached 103.5û and she had been vomiting. The doctor noted that the fever had lessened and recommended a light diet until Camila was well.
#5: LUNCH
Camila and her parents were sent up to Clarke Hall for a hot lunch. The kitchen staff is available to accommodate any special dietary needs, including blending food for a child.
#6: DEVELOPMENTAL PROFILE
The family returned to the clinic to go over Camila's Developmental Profile. The physiological director wanted to make sure that the parents understood all of the forty-two blocks on the Profile. She also went over the Profile horizontally, so that the parents could understand the relationship of various functions at different brain levels. They discussed the changes that they had made with Camila, and her neurological growth was calculated.
#7: DIAGNOSIS IN GENERAL
The Larraguibels were next seen by the director of The Institute for the Achievement of Physical Excellence. He reviewed with them how the staff arrives at its clinical diagnosis.
This includes the degree of brain injury (based on the rate of growth before the onset of program as compared to normal), the extent of injury (how many functions were affected), the laterality of the injury (the side affected, and, if both, which more significantly), and the brain level of the injury (the area of the brain injured). He answered all of their questions until they understood this clearly.
#8: CLINICAL DIAGNOSIS
The next stop was the office of the vice director of The Institutes. He explained the many steps that led to the clinical diagnosis: the developmental history, the etiology of the injury (a list of probable causes of the injury), the neurological evaluation, and the Developmental Profile (where she was and where she should be in each column). Based on the information that had been gathered throughout the morning, the vice director explained the staff's clinical diagnosis of Camila. She had a profound, diffuse, bilateral midbrain and cortical injury.
He explained that Camila's neurological growth rate during the eight months of home program was 223% of her growth rate before the program.
The Larraguibels' long first day had ended. They clearly understood Camila's brain injury and the work that lay ahead. They were tired but very excited. The first day is very much a day about "the past" but the second day is about the future. Tomorrow they would learn the details of her daily home program.
–DAY TWO–
The second day of the Aspirant Visit is devoted to teaching the parents the home program of neurological organization. During the day, each family meets with a director for an overview, then meets a staff member from each institute, including physical excellence, intellectual excellence, and physiological excellence.
#1: MEASUREMENT
The Larraguibels first met with a staff member who took anthropological measurements of Camila. This step is done on either the first or second day and provides important information about growth rates both before and during the program. These measurements, which are taken at each revisit, include weight, length, and head and chest circumference.
#2: PRE-OVERVIEW
The Larraguibels again met with the physiological director, who had been named as Camila's advocate. An advocate is the child's champion, the person who will oversee the child's program and the most important contact person for the family.
She outlined Camila's goals, in order, as: physiological growth, physical growth, and intellectual growth. The programs she would receive, in order of importance were the: Respiratory Masking Program, Sensory Stimulation Program, Patterning Program, Floor Program, Nutrition, and Liquid Balance.
#3: PHYSIOLOGICAL PROGRAM
They continued to meet with their advocate in order to receive the details of the physiological programs. This was the parents' first experience with masking, so both mother and father tried a one-minute masking session. This provided firsthand experience with what they would be doing with their child many times each day.
Camila's parents were also taught how to cross-pattern their daughter through firsthand experience. This would allow them to resolve any questions or problems before returning home.
#4: NUTRITION PROGRAM
The next stop was the office of the staff member who would lay out Camila's nutritional program in great detail. She first outlined Camila's daily requirement of protein. She then gave specific amounts of vitamin supplements that Camila should receive each day.
Since weight gain was an important issue, she gave the Larraguibels ideas concerning feeding times and amounts. They also discussed Liquid Balance, in which daily liquid intake is balanced to prevent swelling of brain tissue.
#5: LUNCH
Camila and her parents went up to Clarke Hall for lunch, provided by the kitchen staff. They were getting a clearer picture of how to carry out a full program at home, and were relieved that Camila was feeling better.
#6: PHYSICAL PROGRAM
After lunch the family met with a member of the physical staff, who went over the details of the physical program. He explained that Camila's very poor vision may cause her to fear moving through space, therefore a loving and encouraging environment was of the utmost importance.
In the Mobility Room they put Camila on an inclined plane to determine which surface and degree of inclination would make her move forward with the slightest movement. Their primary goal was to create in Camila a need to move. They received important information on how to make their inclined plane sessions more successful.
#7: INTELLIGENCE PROGRAM
Their final visit was with a member of the intelligence staff. Because Camila had very poor vision, hearing, and tactility, she was given the Sensory Stimulation Program, which would reinforce the abilities she already had while giving opportunity for the next level.
He set out Camila's visual, auditory, and tactile objectives and taught her parents how to carry out these programs of stimulation and opportunity. They visited the Sensory Stimulation Room, where the Larraguibels saw the visual and auditory environment that they would duplicate at home. They also learned that both the Floor Program and Patterning Program would provide important tactile information.
#8: OVERVIEW
Finally, they returned to their advocate, who went over the policies of the Intensive Treatment Program:
•One parent must always be present doing the program.
•To be effective, the program must be done everyday.
•Both parents are needed at each revisit.
•To contact one's advocate if a question or problem arises.
Finally their advocate announced the date for Camila and her parents to return for a reevaluation, lectures, and programming. While this usually occurs six months later, that would have coincided with the due date of their expected baby. An earlier revisit date was set to insure that the program would be updated and operating smoothly by the time the newborn arrived.
With minds full of information and their days full of challenge, the Larraguibels returned home with a specific daily program, renewed enthusiasm, and the knowledge that they alone were Camila's best chance to live a normal life.
UPDATE:
A year later, the Larraguibels had created substantial improvement in Camila's awareness, vision, mobility, and physiology. She could easily move down the inclined plane, understand one hundred words and simple sentences, feel and grab clothing, and show a preference for reading words over pictures.
In addition, Mr. and Mrs. Larraguibel had become the parents of a healthy baby girl, who would certainly benefit from their growing knowledge of child brain development.
Mr. Larraguibel says that because they now know what to expect during the revisit weeks, they can be much more relaxed. He particularly praises the respiratory programs for Camila, because this allows her to be free of seizures, to sleep better, and to take advantage of the physical programs.
Mrs. Larraguibel adds that the schedule required to do the program has made their life more organized. In addition, the masking program stopped Camila's seizures immediately, giving them more time to do the entire program.
by Janet Gauger
