Resources

Behaviors

You will likely hear from others that “people with Down syndrome are always happy.”  We know, as family members, that is not the case! People with Down syndrome have the same emotions and feelings as all humans.  But, when you factor in speech difficulties, sensory issues, cognitive delays and other issues, behaviors emerge that can be difficult to manage. Behavior is a form of communication so it is important to analyze what happened before the behavior occurred in order to help overcome it. Consider using visuals to help manage behaviors related to communication. Visuals can help your child understand requests, tasks and/or a daily schedule, and can help them to make choices. Social stories are also a helpful tool to present information that may help address a specific situation and help the child learn how to respond appropriately.

When you find it too difficult to manage behaviors on your own at home or at school, consider applying for wrap-around services, intensive behavioral health support for youths between the ages of 3 and 18 who have serious emotional or behavioral issues.  These services are funded by Medical Assistance.

Often behaviors in kids with intellectual disabilities can be surprising or may cause alarm. One of the scariest behaviors in kids with intellectual disability is elopement (or wandering) — when a child leaves a safe area or a responsible caregiver. Elopement is an important safety issue that affects some people with disabilities, their families, and the community.

According the CDC, there are several measures we can take to ensure the child’s safety.

What Can We Do to Keep Children Safe Who Might Wander?

Parents, Teachers, and Other Caregivers

Plan

• Watch the child’s behaviors
• Have an emergency plan to respond
• Keep information about the child up-to-date (picture, description)
• Secure your home (fences, door locks)
• Keep identification on the child (ID bracelet or information card)

Prevent

• Notice signs that the child may wander off before it happens (for example, child makes a certain sound or looks towards the door)
  
• Be alert about the child’s location
  
• Provide a safe location
  
• Inform neighbors and school workers
  
• Alert first responders

Teach Safety Skills

• Responding to safety commands (“stop”)
• Stating name and phone number (or showing ID)
• Swimming, crossing the street

First Responders

First responders are vital for maintaining the health and safety of members of our communities. They are likely to be called upon in the event of a missing child or youth.  It is important for first responders to be prepared by knowing which children in the community might wander, having family contact information, and having a plan to respond.  Tools and training materials are available through the AWAARE organization and through the National Center for Missing and Exploited Children.

Behavior Resources:

• “Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method” by David Stein
• Managing Behavior in Children with Down Syndrome: Part 1. How Understanding Leads to Intervention — Sensory Considerations
• Managing Behavior in Children With Down Syndrome: Part 2. How Understanding Leads to Intervention —Development and Cognitive Processing
• Complete Guide to Social Stories
• Visuals
• How to Request a One-to-One Paraprofessional for Your Child
• Magellan Behavioral Health of Pennsylvania
• Wrap Around Service Providers in Montgomery County