For the better part of this school year my son has been struggling in school with episodes of falling asleep. Although not every day, the sleeping would occur about two times a day. The episodes began in October. The month of October is a pivotal month. Typically it is when the school stops reviewing last year’s material, and begins getting "serious" about school.
As luck would have it October was also the month that my son’s VP shunt failed. A shunt very simply is a surgically placed drain, in this case to arrest his hydrocephalus which were among the residual effects of his prematurity; the most prominent effect was cerebral palsy. Many people have shunts which require revisions (a/k/a surgery to correct defects or infection). In his case, the shunt had never previously failed. As a result, we had no data to know what he looked like during a shunt failure, or what to expect post- surgery. What we subsequently experienced were GI issues, edema for a time and a general malaise. All followup tests–EEG, CT, x-rays came back negative so we have been in a quandary. The doctors were singularly not helpful, acting as if this might be his new baseline; he does have CP after all.
The effects on his school work were immediate and profound. He worked more slowly. He had a loss of appetite. He grimaced at times before nodding off to sleep for upwards of 45 minutes at a time. His tone increased which made sitting hard and other motor functions more difficult. School work went undone and teacher expectations declined.
The answers from the school people came quickly and with a vehemence. Not
surprisingly the simple answer to this complex problem was to conclude
that his sleeping was a behavioral response to the demands of Junior
High School. His math teacher concluded on his report card that he "was
not working to his abilities;" a euphamism for behavior.
As a family, we could not accept either the medical "dunno," or the simplistic answer of the school personnel that he was acting out. The school’s data sheets instead of being objective instruments were replete with statements that implied subjective judgment, rather than objective information gathering. The guiding principles for my wife and me were that there was a medical answer and we could not accept the new lower functioning version of our son.
Over time the school moved from blaming behaviors to an equally pernicious and simplistic answer–move him out of inclusion and into all self-contained programming with a commensurate lowering of expectations. This placement change would have in all likelihood been the death knell for our collective desire to see him go on to college after public school, and killed his self image and self esteem that he had derived from inclusion over many years. The school personnel in their head long desire to "solve the problem" did not at all take into account either the short term or long term consequences of this proposed move.
Recently we had an appointment for a second opinion which finally revealed the probable medical basis for his malaise over these several months–the shunt has been overdraining and his seizure medication has been overdosed; which also coincided with the shunt surgery in October.
He will be taking summer school to make up work undone from months of medical difficulties. Instead of reducing curricular expectations, we will be stretching the work out so it all gets done albeit over more time. Repairing expectations, however, among the teachers may be more difficult.
Reflecting on these several difficult months reaffirms several core truths that I hold dear:
- Dreams and expectations die hard and should not be lightly given up without a struggle and much reflection;
- School people too often want to solve problems NOW without regard or consideration for long or short term consequences;
- The complex problems of children with special needs are not usually simply or easily answered, but school personnel often can not grapple with the multi-faceted nature of such issues;
- Schools offer behavioral explanations as simple answers to complex problems;
- Search out second opinions for medical, dental, psychological, surgical or psychiatric answers when the conclusions being offered do not square up with the child that you know;
- Find solutions that respect the needs of the school (e.g. work completion) and the needs of your child (e.g. to maintain inclusion). You as the parent will undoubtedly need to take the lead in this problem solving.
Complexity is messy. The issues of children with special needs are messy. Educating children with special needs is messy. Schools do not do messy well; they do simple, tidy and predictable. Therein lies one of the inherent tensions in the relationship between parents and schools.