Kickin’ It Old School, Special Edition

This is the first in a series of posts about an n of 1 experiment. I will attempt to educate my son according to the strictures of a special education guide published in 1866.

At a ceremony celebrating the commencement of building the first school in this country devoted to those with severe and profound intellectual and developmental disabilities, in Syracuse, NY in 1854, the Rev. Samuel J. May said the following:

Twenty-five years ago, or more, in the early days of my ministry, I encountered, as every man who thinks at all must sooner or later encounter, the great problem of the existence of evil – the question, how the Good God, the Heavenly Father, could permit his children of earth to be so tempted, tried, and afflicted as they are. I was unable to avoid this perplexing subject; so I met it as best I could, in full faith that the wisdom and goodness of God will be justified in all his works, and in all his ways, whenever they shall be fully understood.

I endeavored to lead my audience to see what, in almost every direction, was very apparent to myself, that evil is a means to some higher good; never an end; never permitted for its own sake, certainly not for the sake of vengeance. I was able easily to trace out the good effects of many evils; to show how they had stimulated mankind to exertion and contrivance, physical and mental; to tell of the discoveries, inventions, and improvements that were the consequences. In particular, I dwelt upon the sad privations those individuals are subjected to who were born deaf or blind. The institution of the Asylum for the Deaf and Dumb, at Hartford, was then of recent date, and a school for the blind was said to have been opened in Paris. These institutions were then of great interest to the philanthropist; and I found no difficulty in showing that the philosophy of mind, and the science and art of education in general, had been much improved by the earnest and successful endeavors which benevolent persons had made to open communications with the minds and hearts of persons deprived of, one or more of the most important senses.

But there was idiocy – idiocy so appalling in its appearance, so hopeless in its nature; what could be the use of such an evil? It were not enough to point to it as a consequence of the violation of some of the essential laws of generation. If that were all, its end would be punishment. I ventured, therefore, to declare with an emphasis enhanced, somewhat, perhaps, by a lurking distrust of the prediction, that the time would come when access would be found to the idiotic brain; the light of intelligence admitted into its dark chambers, and the whole race be benefited by some new discovery on the nature of mind. It seems to some of my hearers, more than to myself, a daring conjecture.

Two or three years afterwards I read a brief announcement that in Paris they had succeeded in educating idiots. I flew to her who would be most likely to sympathize in my joy, shouting, ‘Wife, my prophecy is fulfilled! Idiots have been educated!’ – the Rev. Samuel J. May, 1854.

I disagree with the Rev. May that the problem of evil has been answered satisfactorily. And obviously, “idiocy” is not my preferred nom de quotient intellectuel. However, I find the above quote almost unbearably moving. I feel the uplift of the faith and the passion and the action of those in the nineteenth century who believed that education was possible for everyone and a right for everyone. Everyone. Especially the group of people in whose interests I’ve become lately interested: those whom were called in the 19th century “idiots.” Whom in the 20th century were called “ineducable.”

I have three sons. My middle son would be considered an “idiot” in the 19th century, “ineducable” or “untrainable” for most of the 20th. A clarification on nomenclature. “Idiocy,” back in the day, referred not all forms of intellectual and developmental delay (I/DD), but specifically those whom we would call today people with severe or profound I/DD (“morons” and “imbeciles” were higher-functioning). People with IQs of 35 or under (I would guess my son’s to be somewhere around 35, although that might change). “Idiots” are people who are often non-verbal or can speak in very short sentences. They may or may not be non-ambulatory. They have relatively few self-care skills.

I have written before about Edouard Seguin, a nineteenth century pioneer who taught idiots. I will use the term “idiot” when writing about what Seguin did because it is the word he used, and it flows better. I apologize if that offends anyone. However, despite the fact that his tone is paternalistic by today’s standards and his language is dated, he obviously he saw people with I/DD as having dignity — and indeed, was one of the first that we know about who did so.

His success was apparently phenomenal. Here is how he reports it:

…[I]diots have been improved, educated, and even cured; not one in a thousand has been entirely refractory to treatment; not one in a hundred who has not been made more happy and healthy; more than thirty per cent, have been taught to conform to social and moral law and rendered capable of order, of good feeling, and of working like the third of a man; more than forty per cent, have become capable of the ordinary transactions of life under friendly control, of understanding moral and social abstractions, of working like two-thirds of a man; and twenty-five to thirty percent come nearer and nearer to the standard of manhood, till some of them will defy the scrutiny of good judges when compared with ordinary young women and men.

Contemporary sources verify his success with more specific numbers. They gush about the improvements he made in idiots. Others replicated his success.

So I read his 1866 book that is a guide to his system of special education, Idiocy: And Its Treatment by the Physiological Method. I will describe his methods in more detail in the next post. For now, it suffices to say that his methods are quite shockingly modern. They are not drastically different from mainstream thinking in modern day special education. It is all the more tragic that there were so many years after his book was written, and his methods proven effective, that people wasted away in institutions. It also makes me less hesitant to try it out on him.

Seguin’s understanding of the specific deficits involved in idiocy are very much in tune with how I see them. This is surprising, as his understanding of cognition is different. He tends to assume a Lockean/Humean sort of empiricism wherein we are born a tabula rasa, and ideas may only ever enter the brain through the senses. I think concepts may be innate. But Seguin is dead on about what, exactly, is the difference between an idiot and someone typical. I will also describe that in the next post. His ideas of how to educate also seem (usually) intuitively correct to me.

As for modern special education, there simply isn’t enough long term data to show which educational ideas work with idiots. So many were institutionalized until 30 or so years ago. We know home-rearing (as opposed to institutionalization) makes an enormous difference. We know that receiving therapies (physical, occupational, speech, etc.) helps.  But we don’t really know how often the therapies are needed, or which are the most effective. In special education, the most data are amassed about autism and Down syndrome. Seguin actually has longer term data about idiocy than do most modern methods.

So here is what I decided to do. For the next three months, my middle son (whom I will call James) will be off from school. I will be off from teaching. Although I still have my philosophical writing to do, I have more extra time than usual on my hands. I have decided to try an experiment. I will try, as best I can, to educate my son according to Seguin’s methods. I will see where he is now and see if he improves. I thought I could keep a little diary of the experience and the outcome on this blog. I hope to blog about other things in the meantime, but this will be an ongoing project. I’m not sure it’s interesting to anyone besides, well, me. But what the hey.

So for this post, I thought I’d document where James is now developmentally before we begin. He has a unique variant of a Ridiculously Rare chromosomal syndrome. He is missing a gene that produces a protein that is necessary for dendrite formation in neurons. This protein, interestingly, is also underproduced by people with Alzheimer’s. But his syndrome is not degenerative like Alzheimer’s. People with his syndrome develop, albeit slowly. For example, the average age for beginning to walk is age 5. They usually end up moderately to profoundly intellectually disabled, with a developmental age range of 6 months to 6 years old. The specifics of my son’s genetics indicate that he should be among the lowest-functioning of those with Ridiculously Rare syndrome. On genetics alone, we can expect an adulthood developmental age of 2 years or younger. He will be 4 in September. A recent developmental test has pegged him at a developmental age of 12-24 months. So we have some cautious hope that he may exceed his prognosis.

Here is his development in various areas that we will work on with Seguin’s methods:

Mobility: He can commando crawl with reasonable quickness. He crawls to people with whom he wants to play. A recent school report noted that he will “crawl over people and obstacles to get to a desired toy.” He does not crawl up on hands and knees. He can sit up independently, but not for a very long time. He usually plays with toys lying down. He can pull himself up to a kneel, and with relatively little help, pull himself up to stand. Once up, we can let go for a minute or two while he stands holding on to something. With considerable help, he can cruise. With a gait trainer he walks independently, although he often needs significant coaxing. He also has issues navigating obstacles. He is developing a fairly serious case of scoliosis.

Dexterity: He is quite ready to pick up and play with toys. He can isolate his index finger to point or press a button. He can use his hands together if they are doing roughly the same thing (e.g., clapping or holding an object), but not for doing two different things (e.g., holding a box while pulling off a lid). His grasp can be quite strong and quick. He can reach out and grab something (usually my hair!) lickety-split. However, it is rarely long-lasting. He only throws things occasionally. He seems to get the idea behind writing implements, but needs constant supervision to prevent him from chewing on them.

Communication: He can answer yes/no questions gesturally. He greets people with a lifted hand or pointing at them with a huge smile. Sometimes he says a breathy “haaaaaaa” which is supposed, I think, to be “hi.” For several words, he will say one of the lingual consonants in the word. So for night-night he says “T-T,” for “sit” he says “sssss.” He can make signs requesting songs. He can request to be lifted up, he knows the sign for “more.” He is surprisingly communicative through facial expression and pointing. He is able to understand much more than he can say, which we gather from his accurate yes/no answers to questions and from his pointing to objects when we name them. He also performs certain actions on request, such as “kiss” and “sit up.”

Social/behavioral: He is generally a cheerful social butterfly. He almost always wants to play and wants attention. He almost never has temper tantrums. He lets you know when he’s mad and doesn’t want to do something – usually by an evil glare. He has a few behavioral issues. He is starting to pinch to get attention. He pulls other people’s hair. Not aggressively, that’s just how he gets them over to him. Sometimes he bites his own arm and pulls his own hair. By the standards of his syndrome, these are very minor, but obviously we’d still like that to stop. He has many many non-violent stereotyped behaviors. These are functionless repetitive behaviors such as rocking, tapping his head or chin, and mouthing objects. He remembers everyone’s name, has no problems with eye contact, makes reciprocal smiles, laughs. He is really very loving and affectionate.

Sensory: His optic nerves are 1/4 the diameter they should be. His vision is affected, but we do not know to what degree. He can make eye contact from across the room and he can use the gait trainer, so it’s far more functional than we were originally led to expect. He cannot bear almost any food taste in his mouth (he is fed by feeding tube). He has a visual aversion to strong sunlight. He is extremely startled by sudden loud noises (alas, his mother is a native New Yorker). He withdraws and starts rocking and head-tapping for sustained loud noises. He is averse to touching many textures, and will gag when touching, say, cold metal. His vestibular sense is also seriously off. He has mild hearing loss. He adores music and when we sing to him.

Attention: you can pretty much always get his attention by calling his name. His visual attention is much less than typical, although once he is engaged with a person/toy, he is fully focused on that person/toy. I may be mis-reading him. But while he sometimes has a blank withdrawn stare, he is often also bright-eyed and focused. He likes books, but tends to chew them, and lose interest by the end.

Cognitive: He recognizes himself in a mirror and himself in his own baby pictures. He still does not get how to put objects in containers. Inconsistently, he can point to objects in a field of four pictures.

The next post will be an outline of the method.

Rose Woodhouse

Elizabeth Picciuto was born and reared on Long Island, and, as was the custom for the time and place, got a PhD in philosophy. She freelances, mainly about disability, but once in a while about yeti. Mother to three children, one of whom is disabled, two of whom have brown eyes, three of whom are reasonable cute, you do not want to get her started talking about gardening.

9 Comments

  1. On the one hand, your detailed description of the effects of Ridiculously Rare Syndrome is devastatingly heartbreaking; I know you aren’t looking for sympathy but still.

    On the other and much bigger hand, this is going to be a very very interesting series of posts to follow indeed, one which already inspires hope and joy.

    • Thanks, Burt.

      My husband and I were talking about James the other day, and we were saying that it seems much easier for us to deal with because he is that way genetically. There is no James who is not like him. Perhaps if his disabilities had resulted from, say, a hypoxic event or birth or whatever, we’d feel differently. That there was something he was supposed to be, and got derailed. But this is just who James is, and he’s pretty awesome to be around. I know it doesn’t sound like it from the above description. But he is infectiously happy and loving (as I type this, I hear he and his baby brother yapping non-verbally at each other and cracking each other up when they are supposed to be sleeping, and it really is pretty cute), and that really goes a hell of a long way. Not to say that this is what we’d choose for him. But you know. Could be worse.

      Although as my husband always reminds me, wait till we’re changing diapers on a 12-year-old, and we may not be so nonchalant. Which is part of why I’m doing this project!

      • My wife was pointed to this story recently — it’s probably old hat, but I figured I’d mention it just in case. We thought it was a nice way to look at things.

        • Oh… I guess you’ve seen it, considering that you mentioned it in an earlier post….

          • Yes. When you get the diagnosis, a bunch of people send it to you. When I first got it, I thought it was BS, but it’s totally how I feel now.

  2. Stunning, Rose. I cannot begin to comprehend how you can manage this level of objectivity combined with love.

    I look forward to this; for the meeting of James as he blossoms. And the meeting of you.

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