problems with hypoglycemia or with recurrent hemiplegia!
CHAPTER 5
Developing A Bad Reputation Too
Among Special Ed Teachers
Dr. Frank Martin, by word of mouth, slowly, over the years, had become well known for good care, much dedication even at odd hours, and much empathy and understanding of severely handicapped kids like those with cerebral palsy, autism, and other serious neurological impairments. His great reputation soon expanded into older adults severely disadvantaged, many of whom lived in protected environments -like the ‘state schools’ no longer in existence as of this writing- especially now in ‘group homes’ located all over the community – often to the dislike of the next-door neighbors. In cases of difficult transportation he even did house calls.
When seizures were the main management problem he was held by some as being the best in the area; when agitation and disruptive behavior were the main issue, whether at home or in school, he’d become according to some colleagues, wanted and unique, his practice then taking strong overtones of neuropsychiatry. This was so much so, that he soon -and for years- became the regular child neurology consultant in the local and private psych hospital. He was highly regarded there by the nursing, by the attending staff, and -through word of mouth- by the kids’ parents as well. When one day, after more than 30 years -against the state disciplinarians- he would need expert psychiatry colleagues to vouch for him as for his knowledge, skill, empathy and especially of sound mind, these were there for him without reservations, [but against the state’s ‘experts,’ the only ones that counted, the opinion of his own psychiatry colleagues was ignored and suppressed by OPC, by The Wolves].
Caring for young kids with neuro-developmental disorders also entailed dealing with special educational resources for them. As such, delayed kids at various ages go through all sorts of needs, exposures and modifying programs nearly from the time they are born through adulthood. If they are not crawling or sitting, standing, walking or talking when expected, these days, Early Intervention (E.I.) is started as soon as the concern is raised by the parent(s) or by the pediatrician. That usually means the three T’s: Physical, Occupational and Speech Therapy. Before they turn five often some form of Pre-K is started in school with daily public transportation – often in a special, small-bus-with-driver-plus-attendant. And through age 20 commonly, Special Education is usually available and often enforced by schools.
When basic and medium-to-advanced academic learning seems in many kids stuck at some point with little progress demonstrated or foreseen, often Special Education is continued well beyond Middle School, even if reactive disruptive behaviors and school skipping appear. Alternative vocational school and practical apprenticeships are to this day offered to struggling students not early enough, and much too late in Dr. Martin’s opinion…
[As I will describe in the following cases, Dr. Martin had his own thinking about all this, and -being very outspoken about it- he would tell the parents, the referring pediatrician and the school how he would tackle each particular situation. His down-to-earth practical way(s) of handling them (by holding kids back, by apprenticeships with an early quitting of academia as early as age 15) often clashed with the establishment. It would eventually lead to his ruin with the State:]
5-A: Jane Luisins was a severely autistic, non-verbal girl, about 4 years old, from a town some 30 miles away. Mom was desperate that no progress was shown by her girl in spite of the intensive 3 T’s that were provided to her daughter by the local school, some sessions given at home, others in school. The father was beginning to feel overwhelmed by his wife’s demands that he contribute more of his time to the therapies provided (the school therapists insisted that they keep up with at home with their own physical participation). Dad was skeptical about much of that -which he saw as nonsense- and was a reluctant helper.
Dr. Martin told both parents of his own skepticism too about such massive intervention to make a difference, meeting of course with the approval of dad and the denial and hostility of mom.
Mom heard of a special center that specialized nearly exclusively in ‘massive stimulation of autistics’ -stimulation ‘always aimed at excellence’- center located at a good four hours drive from their home. So she made an appointment on her own -they did not require a doctor's referral or prescription- and instead of a the long drive, she flew there willing to pay out of her own pocket whatever the cost; medical insurance did not cover their service. Dad did not go, but unhappy, at least was willing to pay for their first trip and visit.
They saw mother and daughter at the center, happy with one more customer, receiving them nearly with a royal carpet treatment with a limo right from the airport. They were there early one morning, and after the initial paperwork formalities they got right into their 3 T’s evaluations by three (PT, OT and ST) specialists which led without interruption into their intensive therapeutic stimulation sessions -with their goal ‘towards excellence’- even before lunch.
They bombarded the girl with colorful images, film, much direct talk, forced guided walks, even with touch-and-feel, and particularly with intermittent startling sounds that had the intensity of loudness of a gong in a boxing ring. That went on as well all afternoon. Convenient accommodations were next door. The same ‘stimulation’ went on from the very beginning the next morning till two hours before the return flight was due. In the last half hour mom was given detailed instructions to carry out the same at home, specified hour by hour, by which point she already had made extensive notes about what she was going to embark herself into -and her husband plus volunteer neighbors!- through the time of their next appointment when they would reevaluate the girl and assess her progress, again (and for a total of 6 similar visits) ‘always towards excellence.’
The issue of mom’s intensive efforts became well known in town and soon even caught the attention of the press, all praising mom for such ‘faith, dedication, hard work and endurance’ in spite of the little progress seen. Within two weeks after their return from the big city, tired of the demands, volunteer neighbors coming in and out of their house all day long, mutual marital alienation -‘and of the loud gong!’- dad had disappeared. Sad! Seemingly impervious to the massive demands of their time and their broken marriage, mom continued with it all as if nothing had happened. She acted as a happy martyr.
Dr. Martin got to see the family’s misfortune and demise two more times over the next 8 months. Over that time, he saw no perceptible progress in the girl’s communication as she remained non verbal, distant and aloof without eye contact. And his ‘non-supportive’ position to all that extraordinary intervention for the poor autistic girl was reported by a local teacher to the State Health Department, The Wolves: He does not believe in helping these kids! Dr. Martin is dangerous! He has to go!…
5-B: Harry Jamison was a developmentally delayed preschooler. He was 4&1/2 years old that winter and due for regular kindergarten the next fall. But mom knew he was not ready for school by a long shot though he was making steady progress. He was altogether about 1 to 1&1/2 years behind other kids of his age, still not interested in learning his colors, letters or numbers and not having yet started to pedal a tricycle. [Dr. Martin tells this writer with a chuckle that HIS KIDS were beginning to read by 2…]. When his mother tried to read stories to Harry out of toddlers’ books he’d look the other way. If she forcefully kept him at her side sitting on the couch as she was showing the pages identifying for him the animal pictures, he simply fidgeted, uninterested. He was just not ready though he was starting to become calmer and interested in watching the TV screen, especially if it had fast moving scenes.
Mom told all that to Dr. Martin. She also told him that he had been enrolled since age 3 in an Early Intervention program (where he was getting the 3-T’s) but that whenever she attended his sessions (‘just to take a look and learn myself what to do at home’) she did not see what was ‘the purpose of all that.’ Much of the so called ‘Intervention’ was just baby sitting, there was no interaction with other kids, no group activities that would engage him -he rather wandered by himself around the classroom or in the school yard when all were outside- and he was not paying attention when 1-to-1 ‘teaching’ or ‘therapy’ was attempted.
Yet