My Trial by Fire with Sensory Defensiveness
Editor's note: This article first appeared in the Feb. 26 edition of the newsletter The Romanian Children's Connection, published nationally by Mary Thomas, the mother of an adopted child. It is reprinted here with the author's permission and has been edited for content and space.
By Carolyn White
Our family has experienced a miracle. And we were ready for one.
We had adopted a child age 22 months, who had been institutionalized since birth. She arrived home with the same characteristics of so many children adopted from Eastern European and former Soviet countries--that is, with autistic-like non-responses yet high energy. She had been walking for about two months before she came to us.
She settled into her new life quickly and started talking after about three weeks. Continuing to remind ourselves that she was really 12 months "younger" in development helped us keep our expectations realistic.
Our little Ancutza had her personal idiosyncrasies, but so did our three older children. For a year or so, Ancutza demanded to be pushed in a swing an hour or more each day. She would jump on a rebounder some 800 times at a turn.
At two years old she could run great distances. She acquired and solved big problems and little ones, but her actions were always very intense.
During this time I read with interest articles written by adoptive parents, as well as Sensory Integration and the Child, by A. Jean Ayres. All of this information made sense, but I could find very little else on the subject.
We consulted with a pediatrician, a speech therapist, an education diagnostician, a play therapist (for frustration and anger), a neuropsychologist, two occupational therapists (one SIPT-certified) and anyone else who would listen. Everyone's opinion was similar:
* Ancutza had come far since her arrival.
* Her dad and I were on the right track.
* Time plus intervention would solve each new problem.
Everyone thought she was simply a high-energy child, but no one thought she was truly hyperactive. Ancutza's pre-school teachers had said she was "as immature as all the other kids in her class." In class she was distractible and had trouble staying on task. However, with gentle reminders she would complete her assignments.
By age six and a half, she was doing fine academically in first grade, but then the crisis came.
She suddenly became intolerant to a few particular articles of necessary clothing, and this time, no one could meet her needs. These pieces of clothing seemed to cause severe agony to her neurological system and caused her to rage and beat against the wall. There was no relief.
No homemade therapy worked this time. So I contacted another mother of a Romanian adoptee for the address of Sensory Integration International.
Through SII, I learned about AVANTI, a summer camp for children with sensory defensiveness (see ADVANCE July 31, 1995). We eventually flew to Denver from the Dallas area to meet Pat Wilbarger, MEd, OTR, FAOTA, and Lisa Waterford, OTR, at the outpatient clinic of Children's Hospital.
Pat and her daughter, Julia Wilbarger, MS, OTR, founded AVANTI, and travel around the world training others in the Wilbarger Protocol for Sensory Defensiveness. Pat had spent several months in Videle Orphanage in Romania in 1990, setting up a therapy program there. She and Lisa taught our family the three-step plan, which begins with tactile deep pressure along with joint compression, using a brush Pat designed to work with no tickle, no itch and no scratch. A parent can do it in five minutes, but the effect will last only two hours, so the procedure must be repeated throughout the day.
Back at home, Michael Brown, OTR, a pediatric specialist at West Texas Rehabilitation Center, and Kim Lane, OTR, worked with me on implementing the protocol.
After only eight hours and four brushing treatments, our daughter was completely symptom free. It was amazing. We continued the brushing on a daily basis for the next six months.
The second part of the protocol involves a daily sensory "diet" in the morning to "wake up" the neurological system. Examples are swinging the child by arms and legs from side to side then head to toe; jumping on the bed and splatting on the mattress.
Third comes professional intervention by an OT. Lisa used cranio-sacral/myofascial therapy and orthobionomy techniques, with great results.
She identified structural and postural imbalances in Ancutza that we had never noticed.
In two months, Ancutza had become 95-percent cured of her tactile defensiveness and had not had a rage since her first brushing.
Instinctively, I now believe, my daughter created her own therapy program.
Not being trained in child development, my husband and I learned about it from Ancutza's selected sensory "diet" and from reading selected pieces on the subject.
I now realize that children will seek the sensorimotor input that their systems need.
So after a year of swinging, Ancutza no longer needs to swing, and she has given it up. She needed heavy joint input, ergo the jumping marathons on the rebounder.
All post-institutionalized children will have some of these characteristics. So for readers who are not trained in the Wilbarger Protocol and would like more information, here are some resources:
* The outpatient department of Children's hospital in Denver, CO, (303) 861-6633, or Camp AVANTI, (303) 782-5117.
* Sensory Integration International, Torrance, CA, (310) 320-9934.
* Professional Development Programs, Hugo, MN, (612) 439-8865.
Finding Pat and Lisa was our "miracle"--like the parting of the Red Sea--but the journey is not over. It has just been more clearly mapped.
* About the author: Carolyn White and her husband, Fred, an endocrinologist, live in Abilene, Texas. At the time of this writing, Ancutza has not required treatment for sensory defensiveness for two full months.