School Experiences: Sometimes Nobody is at Fault (Guest Voice)

School Experiences: Sometimes Nobody is at Fault
Guest Columnist Robert P. Coutinho

My children have had difficult experiences in school due to unforeseen and difficult-to-solve problems. We live in an affluent suburb in Massachusetts. During the time that we have lived here, we have never regretted our choice of community.

Some background: I was a Chemical Officer in the Army. I later became a pharmaceutical analytical chemist. I became sick with Chronic Fatigue Immune Dysfunction Syndrome at the age of thirty-four. My lawyer was amazed when the Social Security Department accepted my second submission for disability (he was certain we would have to go to hearing). My disability was that obvious. At least I got to complete some of my life goals before getting sick.

My oldest child became sick with CFIDS when she was fifteen! She was an over-achiever in school right up until she could no longer attend classes. She was the captain of the Color Guard squad. She loved (s) writing. The school administration was less than helpful in trying to get her tutors. They also never found a means of educating her that she could physically tolerate (after she got CFIDS).

My second child (also a girl) had undiagnosed bipolar. She was very difficult to raise. One time she stood above her sleeping sister with a knife. She threatened suicide several times. She also threatened to kill her mother. She was in and out (mostly in) of private (I assume Charter) schools. Each time that the regular school tried to transition her back into the standard classroom they failed.

My third child (first son) came down with CFIDS when he was 13.

My fourth child began his school career at the ripe, old age of two when it was discovered that he had water in his ears and had thus lost the critical 6-month-old time period for language development. A later study (independent from my son, I found it in a medical journal) found that children who lose this critical learning time never catch up with their peers. He attended first grade twice, he just could not pass the first time. Keep in mind that this was in spite of the fact that he was in early childhood intervention classes from ages 2-5! When he was in 10th grade he came down with chronic lyme disease.

The problem: the school system did not want to believe that 1, 3, and 4 were sick when they got sick.

They even got my oldest son taken away from us via the courts (for about 3 weeks–during that time he did not attend any school–go figure). We had a judge who kept telling us that doctors can not tell students that they do not have to go to school. Actually, the law is much more accommodating. The law, more or less, states that the school system can not tell the students that they are not going to educate them because they are sick. When it came to our third child (after he had been temporarily taken away from us and then returned), we discovered a form entitled, “Doctor’s statement for hospital and home education.” That is correct; the judge was wrong in her interpretation. The school system was supposed to bend over backward to educate my children—they did not do so. In short, a doctor is most definitely allowed to tell a child that he or she does not have to attend school. The doctor, however, is not allowed to tell the child that he or she need not get educated.

The teachers we met were all very good teachers. They were hard-working, dedicated people who asked only what they could do to help. The administration–I would rather not go further into that rant.

One of the schools that Child 2 attended had a policy (I guess) of making the students feel good about themselves by ‘ensuring’ that the students would do well on tests. They gave them the answers to the test before the test! My daughter demanded a more challenging environment.

So far, Children 1 and 3 will not complete high school (pretty much a done deal given their ages of 21 and 26). They will attempt to go to college (community college to start), provided, of course, that the medical community comes up with some means of alleviating some or all of the symptoms of this extremely debilitating disease.

Child 2 just graduated from college with a degree in psychology.

Child 4 is 19 years old and in his final year of HS (at the same school–charter–that his sister graduated from). He is great in math and doing well in the rest of his subjects. He also completed his Eagle Scout requirements while still suffering from lyme disease. He is planning to attend college after he graduates from high school.

I do not (fully) fault the school for being unable to help my first and third children in order for them to complete their secondary school education. When it came to my son, they actually offered to send him to a school designed for medically fragile children. I would have cost a quarter of a million dollars each year. He was not admitted into the school because they could not handle his disability. The school system simply could not find a school that could accommodate for their illness. Most children who contract the syndrome end up being home-schooled.

I would attempt to complete my children’s educations as their primary instructor, but I am unable to do so because—well, because if I could do that, then I could work! My wife has her hands full with three people in the house who are disabled (we generally can clean ourselves and move around the house, but need help getting food and drink.) Astoundingly enough, the most serious obstacle to Children 1 and 3 getting through classes is the timing of the classes. Most people with CFIDS end up with a seriously messed up circadian rhythm. Many of them (my children included) become ‘night people’.

So…if the school had offered a tutor a high salary to simply show up and teach my son (or earlier my daughter) whenever he was capable of learning, he could likely have completed his secondary education. It would likely cost less than the quarter of a million dollars they offered to spend to send him to the school for medically fragile children. The reason that they never offered such a deal is that the teachers’ union contract forbids it.

Robert Coutinho is a disabled pharmaceutical chemist living in Massachusetts. He has been learning about life, the universe, and everything since he was born in 1963. He has had little else to do since his disability began in 1997. He has written a fictional novel, Their Last Best Hope, which is currently available at Tate Publishing and will be available commercially on September 6, 2012.

  

Author: Guest Voice

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1 Comment

  1. Wow. What a difficult situation for all of you. It appears the Individuals with Disabilities Education Act is not working very well, at least for your family.

    Looking at the Mass. Education Assn. website they have an area called Educational Support Professionals which they support. That would include tutors, I’d assume. Perhaps you can query them about how they can help.

    http://www.massteacher.org/mem.....uide12.pdf

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