Complex Problems, No Simple Solutions

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.

 

Comments

[Kath Hybl]

One of the points that you you unknowingly raise is how little school personnel know about bio-medical causes of student's behavior. Why would teachers know anything about this topic? They are offered little training but in this day and age probably should be so that their observations are more accurate. With more adn objective observations, parents could follow up with their child's doctor.

On a related note,
My son has severe sensitivies being autistic and allergic to many things. If he gets an offending item, his behavior becomes very unpredictable. If someone gives him a gluestick, instead of a glue bottle, he can get aggressive because of gluten in gluesticks. Children's diet is often noted to be a causal factor in children with disabilites. I know that certain students will have their earlobes turn bright red after eatting brightly colored fruits and vegetables. I see many children not getting the protein they need and therefore, these children have a lack of iron which may impact their ability to concentrate or be alert.

[Rachel Herman]

Thank you for this article; it reflects my experiences as well. It is always reassuring to find specific stories that speak to the same issues I am dealing with. My son is 7, in first grade, visually impaired, and folllowed from infancy for this by the Perkins school for the blind. He has complex learning needs due to this and due to his sensory integration problems, and all are very well docuemented and were addressed in his IEP. However, upon moving to a new town last summer, though we got smiles and promises from the school, they did not follow the IEP. For the first time in his life, he has not been followed by a Teacher of the Visually Impaired and Orientation and Mobility Specialist.
This has resulted in devastating educational problems for him, since the staff do not know about
vision loss and have never taught a child with this disability. Entering the first grade is the worst possible time to withdraw the services and accommodations needed to succeed (as if there is any good time). Only through determined and sustained (since they ignored me at first) advocacy have I got
the school finally (now April!!!) to put the correct services for vision impairments on the new IEP. They are still not following the old one (stay put) and I am taking them to a hearing to make my son whole by obtaining tutoring services so he can be ready for second grade. Likewise on the accommodations....it has been an incredible battle against entrenched habits to get them to enlarge materials,
or allow him to use a felt tip (bold) pen...many accommodations he needs are still not provided. I am unable to afford a lawyer and am essentially a single parent, but that is not an excuse I can use to sit back and allow the school to abuse my son's civil rights and educational rights.
The problems caused by the school go beyond educational issues: failure to accommodate, to provide appropriate services and supports per the IEP, and plain old negligence led to
my son being forced out of his after school program.
The school had a BIP that they devised without my permission or input that was primarily being implemented by a very nice and well meaning but untrained aide. Last winter I requested an FBA to determine the actual causes of his being removed from class so often (listed by the aide in such descriptions as "defiance" and "inattention", since I knew that the problems were related to not having
an appropriate BSP that was informed by his visual impairments and lack of involvment of TVI's and other vision professionals, along with a poor understanding of sensory integration.
Sure enough, the FBA revealed that it was the school behaving badly.
The FBA and the vision evaluations were just reported on last week at the
IEP meeting, and the school made the
decision to blame the whole mess on my son in spite of overwhelming evidence that they had not done their job (provided by their own evaluators as well as mine). So now they are recommending he be removed from the public school. He has always been in the'mainstream (since 2001) and is perfectly able to perform at or above grade level if given the supports and
services he requires. The conclusion of your article seems to also apply here, that the school is reluctant to do "messy" things, to change anything, even very simple things that would permit effective progress.
I am very proud of my son; he has shown great courage and determination in attempting to do all the work even without the appropriate cooperation of the school. I seek to emulate his courage by doing my part, even if I am alone against a top law firm, I owe it to him to use the process of the law, which is
on his side.

[Peggy Lou Morgan]

I have experienced that frustration with Billy Ray many times in his life. It is what forced me to create advocacy and documentation systems to work both with medical and educational professionals.

Complexities are messy as you say. This is especially true when there are multiple situations where one thing masks the other so diagnosis is extremely difficult.

I am glad you have come up with the reason behind your son's issues and can work toward solutions.

My best to you and Lori,
Peggy Lou

[Sherry Hollis]

To Rachel Herman,IDEA law states that the school is suppose to give you 'prior written notice' stating in writing what they are wanting to do (have him removed from school) and WHY they are wanting to do this. They are suppose to give you this automatically without the parent asking for it, but parents always have to ask for this (in writing!) Schools know that their reasons on paper better be 'legal'. I would love to see their 'legal' reason for this one.