KAREN I. WRITES: 

I wanted to let you know how something turned out thanks to your advice and that of your blog contributors. 

You may recall that earlier in the school year, I wrote and asked what to do about my son’s difficulties in school. He had received three C’s and we were both upset. I was at a loss on what to do and asked you. You were kind enough to respond with some excellent advice, even though my son is a public school student and I know you are not a fan of public schools. 

I took your advice to minimize the impact of the public school on our home life and it worked wonders. My son seemed to sense the pressure was off and he started doing very well, bringing his C grades up to A grades. Yesterday, he was presented an award in front of his entire school for “academics, awesome effort, and for being an excellent role model for his peers of respect, helpfulness, kindness and courtesy.” It was signed by his teacher and the principal. 

Sadly, as we were celebrating my son’s award with visitors, I got a phone call from my sister. Her little son had just been diagnosed with “sensory integration disorder,” the very same label my own son had in his early years. It is a label I don’t have belief in because to me, it is just means a boy is acting like a boy. I told my son about his cousin’s diagnosis and I loved his response, which was “Great, that means he will be getting awards and high honors too!”

Laura writes:

Congratulations to your son, who sounds perfectly normal and intelligent.

Sensory Integration Disorder?

That sounds like code for, “He’s a boy who has lots of energy and dislikes school. We don’t know what to do with him.”

                                                           — Comments —

A. writes:

Regarding Sensory Integration Disorder, I have no idea whether, in the case of Karen I.’s nephew, it is being used as code for something else, but I have a sister who was diagnosed with Sensory Integration Disorder in her early years. What I recall is that in her case it wasn’t a behavior or over-active issue, but was an issue of inappropriate responses to various physical stimuli. Sensations that might be interpreted as “tickle” or “itch” to most people appeared to illicit a response more appropriate to painful stimuli. For example, she would stand there and cry and refuse to walk on the nice, soft lawn when barefoot; With physical therapy, she improved.

Laura writes:

Why label this as a disorder? Why not simply say, “This child is sensitive to physical stimuli. Let’s try to help her adapt.”

The problem with the label is that it can be used recklessly and without scientific criteria. What one person considers hypersensitive to physical stimuli, another might consider within the range of normal. It is wrong to label children as sick when they really are simply individuals with different characteristics. The focus should be on the characteristics of the child, not on an “illness” or disorder. I’m not talking about children who have profound organic abnormalities, but the many who show individual variations on the norm.

Lisa writes:

A. wrote: What I recall is that in her case it wasn’t a behavior or over-active issue, but was an issue of inappropriate responses to various physical stimuli. Sensations that might be interpreted as “tickle” or “itch” to most people appeared to illicit a response more appropriate to painful stimuli. For example, she would stand there and cry and refuse to walk on the nice, soft lawn when barefoot; With physical therapy, she improved.

This was my son’s case a decade ago, and it can also be caused by nutritional deficiencies nearly unrecognized in the US today. In my son’s case, a malabsorption problem had resulted in “mild rickets” which include the neurological symptoms described here (extreme nervous sensitivity on a physical and emotional level) as well as physical symptoms. After clearing up the absorption problem in his intestines in two weeks we increased Vitamin D, sunshine, cod liver oil, fresh squeezed orange juice, added fresh raw goat milk, removed all fluoride from water and tooth care, and the neurological symptoms went away. Even the physical abnormalities (crowded teeth, small jaw, slow growth, shallow chest) cleared up over a few years.

It is so grievous that our children are being psychiatrically diagnosed as a result of depleted soil and food, and lack of knowledge as to what is necessary nutritionally for good health. Our doctors are no longer taught this in medical schools.

Hannon writes:

Karen I.’s anguish over a “C” student in the family seems a little puzzling to me. A long time ago I had heard that, statistically speaking, C students are more successful in life overall than the highest scholastic achievers. Here is a very brief article that makes the same point. I had not heard this before (from the link): “A common adage in the entrepreneurial world tells us that “A” students teach “B” students to work for “C” students.”

Of course an academic career and certain other endeavors, like engineering or law, demand high performance by way of grades. I have always felt there is a sot of balanced achievement in the C level grade, which may be due to many factors. It can be the result of boredom in school or more compelling activities like sports or some avocation outside the school environment. Some are naturally suited to the school environment while others are not and this is reflected in grades to a certain extent. However, the development of principle and volition seem to have little correlation with grades in the C to A range.

Lisa’s comment about knowledge of nutrition and its near absence in medical training is cogent. It has tremendous bearing on the health of Americans and has been a concern for decades. But to what end? Many billions of dollars in profit in the medical-pharmaceutical industry are dependent each year on our ignorance of food and nutrition. Intensive coursework in this area should be at least equivalent to hours spent in “P.E.” classes in K-12. We spend a lifetime eating; few of us are running the 50 yard dash after high school.

Kathy D. writes:

When our middle boy was first diagnosed with SID, my husband and I had the same concern: is this just more of the feminization of little boys? He needs to move and bump, so there must be something wrong with him? I am writing to implore you not to assume that is what is at work here. This is one of many “hidden” disorders in which most people judge families because the child looks normal. No Down Syndrome, no Cerebral Palsy. He looks like a normal child; therefore he must be a normal child. The frustration of parents like me who have to hear over and over again insinuations of us looking for something wrong, or worse, even causing the problem because, well, “he looks normal” is not something I would wish on any parent. 

Sensory Integration Disorder is a very real, very misunderstood, and sometimes very painful disorder. Can it be misdiagnosed? Absolutely, as can anything. However, to want to say SID is just “a sensitivity to physical stimuli” completely misses the heart of SID. I will save the whole lecture for those who would be interested, but a person with a regular sensory system and a person with an out of whack sensory system are in two different worlds. Someone combing your hair may be a minor nuisance. To a child with SID (if this is his/her area of oversensitivity) it feels like iron spikes being scraped brutally over your skull. The two experiences have no comparison. 

Our youngest has severe SID. One of his worst sensitivity areas is auditory. Lest you think he is just annoyed by self-flushing toilets, let me give you a brief look into our little boy’s life. (To answer the question that several people have asked me, no he is not autistic, nor is he on the spectrum.) As the music portion of our church service starts, I quickly put on his protective headphones (the type you would use at a gun range). Even with the sounds muffled greatly, he still is completely overwhelmed by the music and singing. Because of the physical pain this brings on, he begins to hit himself quite franticly, and will quickly dissolve into stimming (flapping his hand directly in front of his eyes). This is an attempt to disengage his brain from the pounding it is taking. The moment the music ends, he is fine. If the pastor is preaching something especially passionately, the same thing happens. This is a direct, and not uncommon, result of Sensory Integration Disorder as it affects a child dealing with severe auditory hypersensitivity. We are currently praising the Lord for the blessing therapy has been to our child. Recently, a major breakthrough has been made, and he is no longer in such pain during these times. 

While my examples so far are of an oversensitivity issue, just the opposite can be true. Severe undersensitivity can be present as well. Some children bring great harm to themselves because they have a very hyposensitive vestibular system. One symptom of this is that they cannot, physically, get dizzy and yet they crave that movement like a dehydrated man in the desert craves water. They will spin, and spin, and spin to the detriment of their brain. 

This is considered a “disorder” because it interferes greatly with their ability to function in everyday life. If you look at childhood development as a pyramid, the sensory system is the base of the pyramid. Everything is built from it. This is why most children with SID are academically delayed. Our middle boy was the exception to that rule, although the true measure of his academic ability has come to light post therapy. The moment you clear up the sensory problems, many other things click into place. 

I thank you for giving me the opportunity to share this information with those who, blessedly, have not needed to learn it through the suffering of their own children. Just a few decades ago, mothers of autistic children were called “refrigerator moms”. They were blamed for causing this “disorder” in their children. Let’s not bring on any more agony parents are already facing with their children by suggesting this is a pseudo-disorder simply because it isn’t as fashionable as autism.

Laura writes:

Thank you for writing. The symptoms you describe sound like a serious physical condition. I obviously don’t know much about it and hope your sons do well in life.

What Karen mentioned regarding her son was not in the same category. There is a problem with children being diagnosed with illnesses and treated with medication for developmental problems that clear up with time or for unusual personality traits. There also are labels that cover serious and permanent organic abnormalties. Obviously anyone in your situation would do everything to make sure any underlying physical problems were addressed. If there is nothing more parents can do to clear up or find a physical condition, they are left with treating the symptoms as best they can.

Children exhibit a wide range of developmental idiosyncracies. Some are unusually shy or active or obsessive or distracted. I know a little girl who was diagnosed with Selective Mutism Syndrome because she did not talk to her nursery school teacher. It was just a brief period of shyness. We have very high expectations of normalcy. And, many children who appear to function perfectly have hidden difficulties. Childhood is often difficult and very bizarre, with bursts of development and periods of delay.

Leaving aside the illness you describe, I struggle to understand why, given the wide variation in children, we can’t more often speak in terms of symptoms and personality traits when it comes to development, instead of disorders. Why can’t we say, “he is a very obsessive child,” instead of “he has Obsessive Compulsive Disorder,” or “he has a hard time concentrating and does not listen,” instead of “he has Attention Deficit Disorder.” It can be very serious when a child is obsessive or when he has trouble concentrating. Talking of symptoms does not diminish the issue. But these aren’t necessarily illnesses. If we spoke in terms of symptoms, that would not keep anyone from confronting symptoms and behaviors that are making life difficult for a child and keeping him from learning or making friends, but it would prevent parents and schools from labeling children with developmental abnormalities or learning difficulties as ill.

Lisa writes:

Kathy D, it is frustrating when others do not grasp that there IS “something else” going on with the child. We were looked upon as having “severe lack of discipline” concerning our “hyperactive” son. The nutritional steps we took helped immensely, but he is, as a grown married young man, still happiest in the quiet, natural wilderness of the Colorado mountains away from many people, towns, and technological “noise.” There is so much we do not know. He also had the meningitis-type reaction (high-pitched, inconsolable crying) after a six-month MMR vaccine, and we wonder what unknown long-term effects that engendered, in relation to the hypersensitivity and neurological/behavioral issues.

Kathy D. writes:

Karen’s experience with her son was indeed in a different category, and I greatly appreciated your advice to her in the original post. In fact, one of the reasons we began homeschooling was our houseful of boys. Schools tend to think there is something very wrong with a child who does not behave like a little girl. My concern was the way the conversation was taking a turn into complete misunderstanding of Sensory Integration Disorder. 

Although I agree our culture is too “disorder” focused, I would have to respectfully disagree that we shouldn’t label certain things a disorder. In a perfect world we could talk of symptoms and have them handled appropriately. However, this is far from a perfect world. If I speak to someone about a symptom impacting one of my sons, I get blank stares. People, unfortunately, are unable to imagine an oversensitivity to something as anything worse than they, themselves, would experience. I would point you back to my hair brushing example earlier. That was a real-life example from my middle son. When I tried to explain the symptom to people, I received much advice from well meaning parents who failed to understand the severity of the situation. No amount of explaining would get me anything more than “if you just give him a toy or something he would be distracted and able to control himself”. When I am able to explain that this is a disorder I get a deeper level of understanding. For some, even when a child is rightfully diagnosed with a disorder, if it is not an obvious disorder as I stated before, people still diminish the issue. Sadly, I think the mere fact that SID is not treated by medication, many people see the symptoms as controllable by the child, thus making him a “bad child” when he is unable to control it. 

Our middle child that I spoke of before is doing quite well. He has Sensory Integration Disorder, but through therapy we have learned how to help him. He is a “normal” active, boisterous, inquisitive, highly intelligent little boy. If I completely forgo the things that help him, however, he will quickly become more severe. When I can explain to people that he has a disorder that makes him unable to control these things, people tend to be more patient and accepting of his symptoms, although I get strange looks because I did not describe any condition well known to them. Perhaps someone more brilliant than I could come up with a better word than disorder to convey the severity of symptoms without labeling someone as ill.

Laura writes:

You make a good case for the judicious use of the word “disorder.”

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