by Christine Faltz
Editor�s Note: The genesis for this particular article was a conversation thread on the NOPBC-sponsored Internet listserv, BlindKid. In a dialog that began with a new parent asking for advice, a comment was made about tactile defensiveness. That comment really struck a nerve! One of the parents�Christine Faltz, secretary of the National Organization of Parents of Blind Children�was so motivated by the discussion that she dashed off the following article for Future Reflections. For those who are curious about the listserv dialog that started it all, some of the edited remarks appear at the conclusion of this article. Here, now, is what Christine Faltz has to say:
In February, 1999, my husband, 3 � -year-old daughter Samantha, and I boarded a plane in Phoenix to fly home to New York after visiting with my in-laws. As I headed up the ramp into the plane, cane ahead of me and Samantha behind, holding my hand, my daughter hesitated.
�Come on, honey; we�re going to sit down in a minute,� I said.
A fellow passenger offered her explanation for Sammi�s reluctance: �She probably doesn�t like the feel of the carpet or the noise.�
�Actually, she has a terrible stomach virus and doesn�t feel well,� I replied, inwardly bristling that this stranger automatically assumed that my daughter�s blindness was the likely explanation for her worry. What would her explanation have been if Sammi weren�t blind? Fear of flying or fear of the unknown, some similar, mundane explanation is my bet. This was, in fact, Sammi�s twelfth flight.
Early this spring, after his eighth ear infection, I took my son, Braden, to an ear, nose, and throat specialist. He looked in his ears, nose, mouth, and throat and the audiologist administered an involved hearing test. Braden was mostly congenial and cooperative. Both the ENT and audiologist, on separate occasions and without knowledge of the other�s comments, exclaimed over my well-behaved son. �Visually impaired babies are usually irritable and fussy,� they said. My guess is, given the nature of the examinations, that the majority of the babies seen are irritable and fussy. I wonder if they ever noticed how irritable and fussy Latino, Asian, or African-American babies can be when their personal space is invaded? If so, I doubt very much that the parents of well-behaved babies in such groups were told about it.
Last summer, Samantha attended summer camp three days a week at her preschool. Because it was quite clear to me that the director was uncomfortable with Sammi participating in such a �rough atmosphere, nothing like school during the year� I hired two teen-aged cousins to take turns attending camp with Sammi during the summer. By the end of the summer, the head counselor realized this had been a mistake, but I was the one who was living with the consequences. It took weeks for my daughter to gain back her wonderful, age-appropriate independence, and to this day, she quits too easily, thinking that she needs help in a challenging situation. Sammi is attending the camp again this summer, five days a week, without a personal guardian. But the notion that her blindness made her necessarily a greater risk or supervision problem has already been instilled in her, and it has created difficulties for me I have to overcome. (For example, when Sammi fell and scraped her knee, she blamed it on the fact that she could not see. I had to convince her that virtually every kid I know injures herself with reasonable frequency without raising anyone�s concern beyond that required to care for the injury.)
Then there is the omnipresent, much-discussed� nightmare of early intervention: tactile defensiveness. I must confess, I did not lose sleep when my daughter refused to play with cornmeal or Play Doh, though it seemed rather important to her teacher of the vision-impaired that she get over this petty phobia. (I ignored suggestions to try to get her to accept mushy materials; somehow, during preschool, she became a big fan of messy, gooey items.) There were the dire opinions that my daughter�s unwillingness to eat solids, especially gooey, pureed foods, was an even more serious form of this dread trait of disabled children. (My daughter eats like a trooper and likes what is available when she is hungry, otherwise, she doesn�t. Sounds like every toddler or preschooler you know, doesn�t it?)
Despite the Great Tactile Defensiveness Scare with my daughter, I did not throw a party or even sigh with relief when my son, Braden, delighted in walking barefoot on grass and concrete alike, and devoured virtually any solid food offered to him.
Frankly, given my observations and inquiries of parents with non-disabled children, I have concluded that, for the most part, tactile defensiveness is nothing more than a disabled child expressing an opinion: �I don�t like that.� Why doesn�t a disabled child have the right to have preferences, prejudices, and even some irrational fears like the rest of us? I have a feeling most of my daughter�s peers� parents whip out the monster spray every now and again to neutralize the nasty beasts lurking in the corners of the house.
Let me be very clear. I am not talking about the child for whom the sense of touch is a continual source of distress. I am talking about children who, for one reason or another, do not like to touch a particular texture, food, shape, temperature, etc. I have news for all of the experts who believe tactile defensiveness is an epidemic among blind children and for the parents they have terrified: many babies, disabled or not, simply DO NOT LIKE CERTAIN THINGS.
My son Braden does not appreciate noise. He does not like crowds. As I write this, I am worrying about his first plane trip and how he will fare at the NFB annual convention. My daughter, at his age, loved to be surrounded by activity. Both are blind from birth. Both were exclusively nursed for at least six months; both were home with me 99 percent of the time (the only times they were away from me were several occasions when they were left with my parents for a few hours). Yet�Gasp!�they are different in temperament, preferences, activity level, sociability, and so on. Dare I suggest that they remind me of nothing so much as�other boys and girls?
Most of the experts who evaluate and diagnose our children will never personally face the frustration of a parent whose child�s developmental milestones in every category are placed beneath magnifying glasses, where every little nuance, every quirk of his forming personality is viewed within the context �disabled child.� Forget about The Phase Explanation: �Oh, he�ll grow out of it,� or The Baby Explanation: �She�s a baby; it�s a new experience,� or The Toddler Explanation: �She�s just testing the waters of autonomy.� Apparently, these are the relaxed, cavalier pearls of wisdom pediatricians and early childhood educators save for the �normal� children; those boys and girls who fit neatly into the mid-ranges of normal across the board on �the charts.�
Yes, I know that the �average child� is just a statistical ghost of growth and developmental charts. I also know that every reputable pediatrician and every worthwhile childcare book cautions parents not to worry too much if children are a bit delayed in one or two areas. I know that they tell us that genetics, environmental factors, pre-maturity, and so on can work for or against a growing child, and that as long as development is progressing at about the same rate in most areas, one should not be concerned.
So why is it that blindness seems to be the reason/excuse/explanation of choice for specialists, friends, family members, teachers, and even parents? Our society is too interested in the quick explanation, the scapegoat, the ready answer. Does it really help a child to attribute her fear of separation from parents or familiar objects to blindness, rather than to the same old separation anxiety which haunts almost all children? No, and in fact, it hurts, both her present and future opportunities and those of other blind children.
It is too easy for blindness to become a crutch for all sorts of things. If tired parents do not want to spend the extra time teaching her how to make her bed, clean her room, or set the table it is okay. After all, it is harder for her; she has never seen it done. In school it is automatically assumed that she requires more time to complete tests; why hold the same expectations for her as for her sighted peers? She begins to pick up on the �blindness as explanation for all actual or perceived personal shortcomings� and starts using it herself, but what is worse is that she starts to believe it.
When your child�s pediatrician, early intervention specialist, teacher of the vision impaired, or anyone else makes an issue of a specific behavior, observe non-disabled children in his or her age group carefully, and talk to their parents. Consult a child development book. (For example, my son loves to bounce, rock, and bang his head from time to time. I had always been told these were �blindisms.� Then I read that at a certain age and up until a certain point these are actually quite common, and that most of the time blind children simply are not aware that their peers have stopped indulging in such behaviors.)
If the behavior is a danger to health or safety, it must be stopped. If it is a habit which is unbecoming in public, divert him or remove him from the scene. If he is old enough, explain why the behavior is unacceptable. If it is an idiosyncrasy (she hates soft foods or does not like to play with gooey, cold, or furry items) wait a few weeks, and then try again. Keep it relaxed. If she or he refuses or becomes upset, do not insist or cajole, �Look, your big sister isn�t afraid to touch it,� or berate, �Don�t be a baby,� or bribe, �Just play with it for a little while, and I�ll give you a cookie.� Always use this rule to guide you: �What would I do if this child wasn�t blind?�
Blindness, by itself, does not predispose babies to any more fussiness, irritability, sensitivity, fear, stubbornness, accidents, or aloofness. The simplest, and almost always the most accurate, explanation for all of these traits is: this is a child. Your child is no more wholly defined by his blindness than by any one of the many other characteristics which make him who he is. Focus on the real issues: confidence, mobility, literacy, and most importantly, acceptance; acceptance from you, his parents, and self-acceptance.
�
Editor�s Note: The following dialog is made up of comments posted in April, 2000, to the BlindKid listserv, an NFB listserv sponsored by the National Organization of Parents of Blind Children, a Division of the National Federation of the Blind.
From B: �S.� also ate just a few different types of crackers and biscuits initially. Now he eats all sorts of solids. This was not tactual defensiveness but more like the typical picky eating of a two-year-old. In fact, S. had a �diagnosis� of tactual defensiveness, which was complete absurdity. I�m familiar with a child with sensory integration problems, and it�s quite serious, effecting speech, muscle-tone, motor skills, and balance severely. [For] example: S.�s first reaction to sand at the beach was surprise, and therefore he didn�t like it. So, we sat down and played a little bit, putting it on his hands and feet. A few minutes later, no problem with sand. In my opinion, too many teachers in this field throw this term around, labeling every child who isn�t compliant �tactually defensive.�(My apologies. You can see I�m getting annoyed). S. received this description twice, and both times were ridiculous. The first time was after the teacher had seen S. for all of two seconds (he had just answered �No� to the question, �Do you want to touch the toad?�). So, I�d advise you not to accept this label or any other label with a negative connotation without some skepticism. A negative label could lead the parent to� reduce subtly his or her expectations, and that�s far worse than the actual or imagined diagnosis.
From M: �N. is mainstreamed in regular education and is in the 2nd grade. At P.�s age she wasn�t very fond of gooey stuff or sand; things the V.I. teacher thought were important, she just didn�t like. She now loves the sand and Play Doh, but was �tactually defensive� until about four. I really think it is more an individual thing than a vision thing.
From L: Yes, I know what you mean. H. �failed� at Play Doh when she was about one year old. However, when she was four we couldn�t keep enough of it in the house.
From C: When I ask parents of sighted children (and I often do, as a way to glean some info for my theories about the relative normalcy of a good bit of �disabled� children�s behavior) they tell me that many of their children hate certain textures to play with and/or eat.
From LB: Yes, my totally normal, sighted child absolutely hated her hands in anything mushy. She would spend her time flicking her fingers to get the stuff off. This even went as far as toast crumbs!
From Deborah Kent Stein� (Editor�s Note: Deborah is First Vice President of the NFB of Illinois, an author of children�s books, and a long-time advocate for blind children): Dr. Lilli Nielsen, who spoke at the NFB Convention last summer, has very strong feelings about tactile defensiveness. She believes that most of it develops when a child is not allowed to control tactile input. The case of the child being force-fed new foods and resisting, then accepting the foods when allowed to touch them freely, is a perfect example. According to Dr. Nielsen, kids become tactually defensive to resist having their hands forcibly stuck into unfamiliar and startling substances, such as fingerpaints or gooey clay, or having their hands manipulated or controlled by others in general. She advocates encouraging the child to explore on his or her own by providing interesting objects and opportunities; letting the child learn by doing.
Editor�s Note: Dr. Lilli Nielsen�s publications are available from Vision Associates, 7512 Dr. Phillips Boulevard, #50-316, Orlando, Florida 32819. Phone: (407) 352-1200.
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