Sensory Integration Disorders

By Lisa Edelsward

My son Joshua had obvious developmental delays when we adopted him from Thailand. His medical report suggested "normal" development, but also almost constant illness and frequent hospitalization during infancy. By looking at him, he seemed to be about a year old, toddling but not yet talking, yet his chronological age was almost two. Our pediatrician (though reputed to be "good with developmental issues") seemed to be of the wait-and-see school of thought. I was not yet experienced enough to know better; I’ve learned a lot since then.

Institutions are terrible places for babies. Children from orphanages, even "good" ones, are typically behind family-raised children, and kids from "bad" orphanages or kids with other, medical challenges often do not develop normally. Appropriate interventions need to be started immediately. I’ve also learned that although these problems may be more difficult to diagnose in post-institutionalized children, they are not unique to kids from this background. Sensory integration problems are found much more widely (one Website claimed up to 20% of the population may have auditory integration problems). The problem is most commonly diagnosed in autistic children and treatment methods are also used for "normal" children with unexplained learning disabilities.

Auditory Integration Disorder

Joshua did not speak at all during our first year together, although his babbling was so complex that you would have sworn he was really speaking a foreign language (he wasn’t). He wasn’t repeating, or even trying to speak, but was quite effective in expressing himself non-verbally and very aware of his surroundings and our expectations of him. After a year with us, it became very clear that he wanted to talk, but couldn’t. By his third birthday, he had five words (mommy, daddy, baby, puppy and car-car), but was unable to consistently repeat back new words. His speech comprehension was likewise inconsistent.

I had his hearing tested twice, and was told his hearing was normal, but I had real doubts. I remember telling my mother, "I know he can hear, but I don’t think he can hear clearly." I took him to a speech therapist who tried out different labels on him, each of which I researched myself, but none of them seemed to fit. Unfortunately, regular therapy was not covered by our insurance, and I believed that we couldn’t afford on-going visits, so I brought him in for occasional evaluations and suggestions for home interactions.

I expected delays when we adopted Joshua. What I was unprepared for was the extent to which our medical system is unprepared for these children. When I took my child to the doctor, I assumed that because pediatricians understand child development, they would know (and tell me) when and what kind of interventions were necessary. Fortunately for our society, but unfortunately for our kids adopted from institutions, the specific problems of institutionalized children are so rare that this specialized knowledge is not common, even among professionals.

As it became increasingly clear to me that the professionals we consulted did not understand my son’s problems, I began an intensive search for answers. Then I discovered the Parents’ Network for Post-Institutionalized Children, started by adoptive mothers desperate to find appropriate information and therapies for their developmentally delayed children. Their primary objective is to help other parents get information, so that we can make appropriate decisions to benefit our children. I ordered several of their publications and their newsletter. I also immediately signed up for one of their conferences, held several times a year around the U.S., and flew from Canada to Boston to attend. It was one of the best investments I ever made for my son!

At that conference, listening to professionals with the appropriate expertise, for the first time I could recognize my son and his problems from their descriptions of diverse developmental disorders. And for the first time I recognized the source of my son’s speech difficulties. I heard about how understimulated children from Romanian orphanages -- a long way from Thailand, yet the same kind of environment -- often suffer from an auditory integration disorder characterized by hypersensitive hearing. The tell-tale signs were all there: poor speech development, no evidence of deafness, but a lot of odd behaviors that seem to be linked to sounds.

For example, Joshua was terrified of the flushing of institutional toilets (the kind with a really strong flush). He had no objections to using them, but could not bear to hear them flushed. Home toilets were not problem at all -- he loved to flush those. Some sounds made him run away; other sounds filled his eyes with fright and made him cover his ears. The loud drums of a Chinese New Year celebration we attended created a total panic in him, we had to leave, immediately. Yet he loved and was fascinated by music and musical sounds of all kinds. At the conference, I saw videos of Romanian children with exactly these strange reactions to specific sounds -- like the little girl who was frighted of some bells, but not others.

Hypersensitive hearing is a serious hearing disorder which is rarely recognized, in part because it is not tested for by conventional hearing tests. In this disorder, most sound frequencies are heard normally, but some specific frequencies are heard at extremely -- painfully -- sensitive levels. Sounds heard in the "normal" frequencies cause no problems and evoke no strange behaviours. But sounds emitted in the hypersensitive frequencies are at best disturbing, at worst acutely painful, and the child reacts accordingly.

In addition, there are typically more generalized behavioural problems due to the constant assault of sounds, such as frequent temper tantrums or withdrawal, rage episodes, even learned deafness as the child adapts by "turning off" their hearing. Hypersensitive hearing also distorts sounds, because some frequencies, experienced in a booming, painful loudness, can completely overshadow other, more normally heard frequencies. And to make the situation even more complex, typically both ears hear differently! No wonder my poor little boy couldn’t learn to talk! He heard speech sounds totally distorted, differently if spoken from the right, left or in front, and often in pain! Understanding the immense challenges he faced in the world of sound gave me an incredible respect for the efforts that little child was making to fit into the world of speech around him. (I’m sure I would have given up!)

It was a tremendous relief to finally understand my son’s problem; it was even better to learn that there is a simple therapy to correct it. Fortunately for us, one of the founders of Auditory Integration Therapy lived in Montreal, within (a long but manageable) commuting distance of our home. I immediately called Dr. Binet and discussed Joshua’s case with him. I was able to make arrangements to have Joshua’s hearing tested yet again, this time with Dr. Binet’s specific instructions and with audiologists familiar with the method. When Dr. Binet received the results, he confirmed the diagnosis and set up an appointment to begin therapy.

Auditory Integration Therapy (or Training), or AIT, (sometimes known as the Berard method, after the French co-founder of the therapy) consists of two weeks of twice-daily sessions of listening to sounds through headphones. The sounds are created for each patient according to their particular sensitivities, by electronically filtering music to those frequencies which will stimulate the mind to recalibrate itself. The brain relearns to hear sounds correctly, and eventually the patient’s hearing is completely normalized. The sessions last only for two weeks, but the relearning process continues for months afterwards.

It did not take long to convince me of the benefits: on our second day, driving into Montreal, my son -- who until that point had never been able to pronounce an "L" except at the beginnings of words -- suddenly corrected his younger sister’s speech, saying "No, Leah, it’s not ‘hewmet,’ it’s ‘helmet.’" My jaw nearly dropped off my face! A few days later, Joshua suddenly became fascinated with an electronic toy that he had owned for many months, but never shown any interest in. It was one of those play computers that ask a child questions and they have to push the correct buttons. Until that day, his only interest in it was in the musical keys, but then suddenly he discovered that it was talking to him! He could understand the words for the first time! He played with it for hours.

After AIT, Joshua’s language began to take off. He began to understand speech, even if he wasn’t watching the speaker’s face (and lips). Suddenly I could call after him as he zoomed away on his bicycle and know that he heard me! He began learning new words at a rapid rate. Until AIT, I was almost the only person who could understand his speech. By the time he began kindergarten, 2 months later, his teacher, who had been informed that he had special needs, couldn’t immediately tell what they were, and had to ask. Also at this time, I found a speech therapy program that was covered by our medical insurance, and so Joshua finally received regular speech assistance. By first grade, he was considered to be "within normal limits" of speech development, and discharged from speech therapy.

An interesting postscript to this experience happened a short while after he began kindergarten. After waiting nearly a year, we finally got an appointment for a developmental assessment at a large children’s hospital. I was delighted to know that the assessment included a hearing test, as it was time for his 6-month AIT follow-up test. This is the test which evaluates how effective the therapy has been. (Some people require two sessions to normalize all frequencies.)

I went to the appointment prepared with the specific requirements of the AIT hearing test. When I presented this information to the audiologist, she initially refused to follow the protocol (which involves testing hearing sensitivity above the normal levels, instead of merely below), because "We don’t believe in that here." I could hardly believe my ears! But I explained that I believe in it, because I’ve seen the difference it has made in my son, and I would appreciate if she would nevertheless do the appropriate testing because otherwise I would have to pay to have it done privately. She did it, eventually, and the testing showed Joshua to have almost perfect hearing, with only one frequency in one ear remaining slightly hypersensitive.

Sensory Integration Disorder

The developmental assessment at the children’s hospital was intended to be a comprehensive evaluation of Joshua’s needs and achievements, but it was a disappointment. After a half-day battery of tests, I was merely told that Joshua had language delays (which was already known) and was "probably ADHD, although he is too young for a definitive diagnosis." Still, I was told to start preparing myself for eventually putting him on Ritalin! I was unconvinced. Was there anyone specialized in treating Sensory Integration Disorders, I asked. But no, the only occupational therapist at the center had no training or knowledge of this problem. I left the hospital, knowing two things: first, that I had no intention of drugging my son with Ritalin on the basis of this cloudy diagnosis, and second, that I would not return to that center.

Fortunately, it was at this time that Joshua began speech therapy at a small regional hospital’s child development center. I inquired there about sensory integration therapy -- and to my surprise, their only occupational therapist specialized in Sensory Integration Disorders! It meant another waiting list, but Joshua was soon booked for double therapy sessions, speech and occupational therapy, conveniently located in adjoining rooms. And he loved the OT exercises, which were all presented as wonderful games with a lot of swinging, bouncing and great massages. His speech therapist even teamed up with his OT therapist, using his sensory exercises to motivate hime to work harder on his speech exercises.

Sensory Integration Disorder is another problem of sensory processing, in which certain senses are hypersensitive while others are underreactive. For example, Joshua was extremely hypersensitive to slight touch or specific textures: clothing tags made him frantic and panicky, he refused many types of fabrics, was delighted by certain others, and so on. This can be extremely disturbing to a child, and distracting to the point of being unable to cope with normal life or focus on activities. Other types of sensory problems my involve proprioceptic feedback, inner ear feedback, and other internal senses. Poor proprioceptic feedback, which involves knowing what your own body (especially limbs) are doing, can result in excessive clumsiness, and other symptoms of poor coordination and gross motor skills. Another area that was problematic for Joshua was the development of sensory nerves in the mouth: like an infant, everything went into my five-year-olds mouth, and he was constantly chewing his clothing, his toys, whatever was handy.

There are behavioral clues to this disorder, too, such as bizarre reactions to touches and textures. One of the confusing signs is when a child seeks out hard touch -- squeezing, thumping, getting knocked around, bouncing off walls and people, being swaddled or tied -- and hates gentle touches like caresses, soft hugs, kisses, and so on. This is a sign that the sensory system is malfunctioning, and is demanding excessive stimulation while reacting painfully to otherwise pleasurable touch.

A child that is excessively accident-prone might be unaware of where his/her feet and hands are in space. Some children might be reacting fearfully to others approaching within their personal space, or being extremely defensive about touch -- even lashing out violently to gentle or minor touch, since these may be experienced painfully. But sometimes the signs are more subtle and easy to misinterpret: SID is often misdiagnosed as ADHD. There are also emotional repercussions to sensory problems, with children being at risk for labeling as a behavioural problem -- even as violent sociopaths! -- because of their inability to appropriately respond to their environment or to normal personal interactions.

Sensory integration problems can affect any of the senses. I myself am hypersensitive to certain kinds of light (and have been all my life), which can be extremely distracting. For example, the first time I entered the university library, I felt that I could hardly see at all because of the flourescent lighting. I manage easily enough with tinted glasses as required, but then I’m an adult. Small children are typically not able to express what is bothering them; sometimes we have to be detectives to determine if there is an environmental/sensory component to our children’s problems.

Does one kid study better in certain kinds of light but become distracted or even disabled in other kinds? Can another study effectively until you start cleaning, and then seem hyperactive and distracted when the chemical fumes (or perfumes or any other scent) reaches his/her nose? Does a child seem unusually sensitive or insensitive to pain? If you have a child who is extremely fussy about the kinds of clothes he/she will wear, it may not be from a desire for fashion control, but because of sensory problems that cause unpleasant sensations from certain fabrics or styles that are too constricting or too loose or rubbing in particularly distracting ways.

If our kids have behavioural or emotional problems, it may be due to past emotional trauma, but it may also be due to purely physical causes -- causes which can be treated and healed with appropriate therapies. If a child is labeled ADHD, before running to the pharmacy -- or especially if drugs have been tried and didn’t work -- it could be worth investigating alternative hypotheses from other health professionals.

And above all, we parents need to remember that every health professional doesn’t know everything; sometimes we have to know what’s best for our kids, and go find it, ourselves.

Postscript: Joshua has recently turned eight years old. His sensory skills are now within the normal range, although he is still a "sensitive" little boy. He is fussy about his clothes (loves cotton, dislikes synthetic, refuses wool absolutely), but his reactions are now manageable. He is quite well-coordinated, loves sports, but occasionally finds a particular activity more challenging than average. He is often a little chatterbox, and although not the most advanced speaker for his age, he is clearly speaking like a normal eight year old. (He still has a few bad habits, like not always responding to others when he should, but it’s clearly just a bad habit now.)

He has no obvious disabilities anymore, but because his language learning was very delayed, occurring mostly during his kindergarten year, we are now struggling with a different kind of developmental problem: learning disabilities. He struggles still with abstract thought, memory problems, following verbal instructions, and (more concretely) reading, writing, and arithmetic. This I consider to be a normal outcome of his experience, and a problem that he will overcome with time and effort, as he has overcome so much else. But now as a family we are again struggling to find sympathetic and knowledgeable professionals, in education just as before we sought health appropriate professionals. Overcoming an infancy of illness and deprivation is a long term struggle!

Resources: There is help out there! Here are some starting places:

Books

About AIT:

Stehli, Annabel, The Sound of a Miracle, The Georgiana Institute, Westport CT, 1997

Stehli, Annabel (editor), Dancing in the Rain, Stories of Exceptional Progress by Parents of Children with Special Needs, The Georgiana Institute, Westport CT, 1995

Berard, Dr. Guy, Hearing Equals Behaviour, Keats Publishing, New Canaan, CT, 1993

About Post-Institutionalized Children:

Thais Tepper, Lois Hannon, and Dorothy Sandstrom (editors), International Adoption: Challenges and Opportunities, PNPIC, 1999 (see address below)

Adair Renning, The Ultimate Treasure Hunt: Finding the Child Inside. (Published by the author, available from Adair Renning, PO BOX 187,Milan, MI 48160-0187; web site: www.adairsbooks.com)

About Sensory Integration:

Sensory Integration International (see below) lists many titles of books, videos, audiotapes, and other resources.

Jean Ayres, Sensory Integration and the Child, Western Psychological Services, 1979

Carol Stock Kranowitz, The Out-Of-Sync Child : Recognizing and Coping With Sensory Integration Dysfunction, Berkley Publishing Group, 1998
 

Organizations

The Georgiana Institute (for info on AIT, books, and a directory of practitioners)
P.O. Box 10, Roxbury, CT 06783 USA
telephone: 203-454-1221
fax: 203-454-3788

Parent Network for Post-Institutionalized Children
Box 613
Meadowlands, PA 15347 USA
www.pnpic.org

Sensory Integration International
1514 Cabrillo Avenue
Torrance, CA 90501 USA
phone: 310-320-2335
fax: 310-320-9982
e-mail: info@sensoryint.com