Down Syndrome Today Fall 1992, Vol. 1, No. 4, p. 22-3 Darlynne A. Devenny, Ph.D.

Printed with the permission of Darlynne A. Devenny, Ph.D. New York State Institute for Basic Research in Developmental Disabilities 1050 Forest Hill Road Staten Island, NY 10314

Sincerely,
S. H.
Richmond, VA

Dear S.,

     Thank you for sharing your experiences. Clearly, mastery of toileting skills represents a developmental milestone which every parent and child face. As every parent will testify, no two children are alike in how they achieve bowel and bladder control. Although it may seem hard to believe right now, I am pleased to tell you that almost all individuals with Down syndrome do become independent in toileting.
     There is no magic age for toilet training. Depending on the developmental level of the child, toilet training can begin as early as 2½ years. By 6 or 7 years of age most children with Down syndrome are trained.
     Rather than providing a series of steps which would be prescriptive (and perhaps not helpful) I will give you some ways of thinking about toilet training. I asked Dr. Al Pfadt, a behavioral consultant with extensive professional experience in this area at the Institute for Basic Research, to provide the information for this reply to your letter.
     Dr. Pfadt believes that in order to facilitate toilet training, change must occur not only in the individual but in the social and physical contexts of the toilet training experience.

Individual Readiness
     Since chronological age is, in general, a poor predictor of functioning in children with mental retardation, it may not be easy to gauge when toilet training should begin. Some indications of a child's readiness for toilet training are the development of abilities: 1) to communicate intentionally, either verbally or with specific gestures or signs (eg., can indicate that a diaper is wet); 2) to manipulate clothing (eg., pulling down pants); 3) to move on and off of toilet; 4) to interpret social approval for actions.
     The control of elimination is a complex activity involving several muscle groups and sphincters. Bowel control usually precedes bladder control. In infancy there is reflexive emptying of the bladder. Before toilet training can begin there has to be some evidence that the child can counteract this reflex and withhold urine.
     With regard to bladder control, finding the child dry after a nap is an early sign of training readiness. The child should then be encouraged to indicate a wet diaper, and finally to verbalize or indicate with a specific gesture toilet needs. Achieving each of these steps should be cause for encouragement for both parents and child. Setting intermediate goals that can be attained and maintained, however small the steps may seem, will result in better progress than attempting full bowel or bladder control and failing.
     Bed wetting, particularly in boys, may persist several years after successful daytime bladder control is attained. Some nighttime wetting or enuresis may be related to temporary anxiety or stress, particularly if the child is away from home. Enuresis has also been related to sleep cycles. When the child is in deep sleep the infantile, reflexive emptying of the bladder can return. Therefore, toilet training for daytime control can begin before nighttime dryness has been established.

Social Context
     Children with Down syndrome are generally very aware of their social surroundings. They may also be aware of demands placed upon them which they have difficulty in fulfilling. To a child, giving up wearing a diaper may mean the giving up infancy and a protected all-accepting existence. Perhaps the push to be "big" may not be unconditionally appealing to a child.
     At the time that toilet training is begun, all the other expectations placed on a child should be examined. Because the beginning of schooling tends to be based primarily on chronological age, a child with Down syndrome may be less socially mature when entering a formal school setting than children who are not mentally retarded. Teacher demands to sit and attend and learn manual control for writing may all occur at the time of toilet training for a child with Down syndrome, making it difficult for the child to focus on body functions.
     If it can be arranged, the summer vacation is a good time to focus on toilet training. Other demands on the child for more mature behavior can be relaxed. However, it is important in this relaxed setting for the demands around toileting to be consistent and, if possible, that training be directed by a single caretaker.
     Toilet training occurs at a time when the child has gained some self-awareness and an awareness of the expectations of others. Probably because of this awareness, toilet training can be a time filled with anxiety for everyone concerned. For self-initiation of toileting, the child also has to be aware of internal body cues. Depending on the developmental level of the child, the alternative approach of training to a schedule may be more realistic. In this approach the parent needs to be aware of when eliminations are most likely to occur and it is the parent, not the child who is "trained".

Physical Context
     For most families with young children the physical environment needed for toilet training is available. First, the bathroom should be easily accessible to the child. Second, the child should be able to reach the toilet, independently, by a step, or use a separate potty. Third, the child needs to be dressed in clothing which the child can remove with ease.
     The bathroom should be a place that does not frighten a child. Initially, the child should not be expected to spend time alone in the bathroom on the toilet. A familiar picture or book in the bathroom which can be talked about may alleviate some anxiety about toileting activity.

Clarification of the Activity
     No list of suggestions will address the needs of all parents in toilet training their child. Instead, Dr. Pfadt recommends that parents examine the many factors which are part of the complicated activity of toilet training and how they are interrelated. Parents know best the developmental level and temperament of their child and their family circumstances. Parents should assess the best time to initiate the activity based on their perception of their child and their own needs.
     It is important to understand when a child is ready for training, and to set short term, realistic, goals. Next, the social demands on the child which come from various contexts such as school and the child's relationship to other family members should be examined. Finally, the physical environment should be modified to facilitate the independence of the child.
     A technique which you tried (and which failed) a few months ago may be successful at some later time. It is a question of finding the right structure or words at the right time for each child. If initial attempts are unsuccessful then it is recommended that active training be suspended and resumed at a later time. And, remember, although there is a lot of trial and error and frustration, the odds of eventual success are definitely in your favor.