Adorable, well mostly. Loved, absolutely. Frustrating, of course. Social, usually, but not always appropriately. Communicative, but not always easy to understand. Can be compliant, but “no” is a favorite word. Not quite “my way or the highway.” Flops and drops. Likes to throw. Runs away. No sense of danger. Too cautious.
What about the teeth grinding, the dangling, the self-talk, the questions asked over and over?
Like all children, children with Down syndrome (DS) are going to present caregivers with challenging behaviors, and they require both clear expectations about “good” behavior and appropriate limit-setting on unacceptable behavior. However, at times even the best behavior management strategies that work with most kids don’t seem to help or don’t seem appropriate for your child with DS.
Children with DS have neurodevelopmental differences that can interfere with learning appropriate behavior and which increase behavioral difficulty. Moreover, each child is unique, with his or her own array of strengths and weaknesses. Your approach will depend on your child’s age, ability, temperament and where the challenging behaviors occur: at home, at school or in the community.
Behavior intervention becomes imperative when that behavior leads to social isolation or interferes with your child’s ability to develop loving, mutually satisfying relationships within the family and community. Intervention also needs to be considered when the behavior interferes with learning or when it poses a threat to the safety of your child or others. Sometimes troubleshooting problem behavior requires a team of experts who understand principles of both positive behavioral support and behavioral analysis working directly with you at home and with teachers and aides at school. Remember, no two children are exactly alike, and each deserves individualized consideration.
The areas we have found that help explain many of the behavioral challenges facing parents include sensory processing, development, cognitive processing, communication, and social and emotional functioning. This article will focus on sensory considerations. The other areas will be covered in future articles.
Sensory input — vision, hearing, touch, smell, taste and proprioception (our sense of where our body is in space) — surrounds us. Our brain interprets these sensations as neutral, pleasurable, comforting, annoying or painful. Sensory processing varies greatly across individuals. Smelling of Brussels sprouts, feeling of a needle prick, seeing a spider, wearing silky clothing, hearing a siren, spinning in circles, tasting mushy food, laying on firm pillows, tasting coffee.
Some people strongly react, positively or negatively, while others under-react: “what smell?” “what noise?” Some may be so attracted to certain sensations that they seek them out, sometimes spending an unhealthy amount of time on them. Children with DS are no different in this regard, but it can be confusing because things that they find pleasurable and seek out may be things we find boring or annoying, such as teeth grinding or sock dangling. Things that we find ordinary, they may process as aversive, such as the noise of a lunchroom.
When children seek out sensory input, we refer to this as sensory-seeking behavior or “self-stim.” When this sensory-seeking behavior interferes with other aspects of life, we recommend limiting the behavior to a certain place and time. Generally, just telling the child “no” (as in “no throwing, no spitting, no jumping, no spinning, no dangling”) doesn’t help in the long run, and may even turn that behavior into an attention-seeking, as well as a sensory-seeking, behavior. The better strategy seems to be to ignore and redirect. This means very deliberately not paying attention to the sensory-seeking behavior at all, or if necessary, simply blocking it, and then leading the child to another activity. (For example, singing a favorite song or providing another activity: “Let’s color.”)
For some children, sensory-seeking behaviors are their way of calming down and relieving stress, so allowing access to self-stim as needed can help children regulate their stress and emotion. For example, a child may be offered access to their iPad when upset, if music input helps them self soothe. Self-stim behaviors may also be helpful in keeping children well regulated and focused, so allowing access to sensory input on a regular basis may allow them to be more focused or help maintain an even keel (sometimes referred to as a “sensory diet”).
If a sensory-seeking behavior is an unacceptable public activity, then matter-of-factly redirecting the child to a private space would be appropriate. Included in these private activities are the obvious ones, such as masturbation or nose picking, but also (especially for school-age children) activities that look “weird” or different to others and could increase social isolation among peers. Rules about such behaviors should be made by labeling the behavior and designating their private spaces (at home and, if needed, at school or in the community).
The other consideration on handling sensory-seeking behaviors relates to how well, or not, a child can organize his or her own activities. Many children with DS have a difficult time finding constructive things to do during their free time, and then may engage in sensory-seeking behaviors — not because they find these behaviors particularly enthralling, but because they are otherwise bored. They may need more adult facilitation for activities that most children can do on their own. They also may need more organized play spaces than other children (for example, a designated rug or desk) and only a few toys that relate to that activity out at once. Sometimes a visual schedule can be useful in keeping children with DS occupied.
What we find sensorily aversive in part depends on our previous exposure and associations with aversive sensation. For example, if we get sick after eating Brussels sprouts, the smell of Brussels sprouts may cause a feeling of nausea for quite some time.
Children with DS may quite strongly tie an aversive sensation like pain with a place, an activity or even a person, causing that activity, place or person to generate negative feelings far into the future. These associations can be solely based on time and place, not direct causation. They don’t always make logical sense. Thus the flop and drop going into the doctor’s office, even when there won’t be any shots; the fear of a particular room a child happened to be in when the fire alarm went off; or the tantrum with meals even after painful reflux has been treated. Breaking that association may take some time. It may be necessary to deliberately pair particular activities, places or people with pleasurable sensory input in order to help the child lose the negative associations.
Whenever we experience aversive sensory input continually, we become stressed and don’t function as well. It is no different for our children with DS. However, children with DS may not be able to effectively communicate their distress, nor make the connection between the negative stimuli and their distress. “I have a stomach ache, please leave me alone” would explain a lot, but an irritable mood and annoyingly noncompliant behavior does not. When you suspect that challenging behavior is related to pain or discomfort, you should bring this to the attention of your child’s healthcare providers.
Sometimes there really is no rhyme or reason for the particular sensations children (or us for that matter) find aversive. We just don’t like it. When such input is easily avoided, we do. (We don’t ever buy Brussels sprouts.) We may also impose such restrictions on family or friends: avoiding beach vacations because “sand gets everywhere.”
However, for children who have little control over their environment, avoidance may also not be an easily obtainable choice. Children cannot just leave the classroom or transfer themselves into another class if they are disturbed by another child’s yelling. They may also not be able to clearly communicate what sensory input they find aversive, and caregivers may attribute their behavior to other reasons (for example, assuming the child’s attempts to leave the class are related to wanting to avoid work or just to be disruptive). For aversive input that is inevitably encountered in everyday life and cannot be avoided, we need to help our children eventually get used to it through gradual desensitization. Occupational therapists and counselors who help children deal with anxiety can be helpful in devising a program to guide you and your child through this process.
Sensory processing likely begins in the womb and continues throughout life. In our everyday lives, it is ubiquitous, to the point that we often don’t consciously pay attention to it. We also have the advantage of good communication and logic that helps us regulate our own sensory-seeking behaviors and minimize the effects of sensory-averse behaviors. Through gaining an understanding of your children’s sensory processing, you can better see the world from their perspective, and help them develop optimally, in what for them can be a very challenging world.
Reprinted with permission from: Down Syndrome News, newsletter of the National Down Syndrome Congress, 30 Mansell Court, Suite 108, Roswell, GA 30076, http://www.ndsccenter.org/