Behavior
Implementing effective behavior strategies is key to fostering positive development and enhancing quality of life. With tailored strategies, we can support unique needs and abilities to promote independence and positive interactions.
Behavior strategies for people with Down syndrome often involve creating structured environments, utilizing visual supports, and employing consistent routines. These strategies not only help manage challenging behaviors but also build on strengths and encourage skill development. Understanding an individual’s specific needs and preferences is crucial, as these strategies should be adapted to suit personal learning styles.
By integrating approaches such as positive reinforcement, clear communication, and social skills training, caregivers and educators can effectively address behavioral challenges and promote growth. Ultimately, these strategies aim to empower individuals with Down syndrome, enhancing their ability to navigate daily life with confidence and success.
Behavior and Down Syndrome: A Practical Guide for Parents
David Stein, PsyD
Parenting can be a bit like setting off on a journey without a map. With each unexpected fork in the road, the caring parent uses intuition informed by prior experiences to choose a path. For some families, this works out just fine. For most of us, a little extra guidance to understanding our children’s behavior can make a huge difference.
While there are several very good books that address general child behavior, there is not much information available for families specifically designed to support positive behavior for children with Down syndrome. Dr. Stein’s guide fills this gap beautifully providing sound, practical advice for parents of children with Down syndrome. Recognizing that each child is unique but also that there are some common areas that can present challenges and also particular strategies that have proven successful, Dr. Stein gives advice that you can start using today. I am so pleased to recommend this guide to the families who come to the Down Syndrome Program at Children’s Hospital. I hope you find it sheds light on the road ahead for a more peaceful and fulfilling journey for your family.
Five Strategies for Dealing with Behavior Issues in Children with Down Syndrome
Kurt Reising
Are you looking for strategies to help improve the behavior of your loved one? Look no further! These five strategies tend to work well for individuals with Down syndrome.
1. Routine
Routine and structure are important for any child, but this is especially true for children with Down syndrome (DS). Individuals with DS often have trouble receiving and remembering verbal direction and remembering verbal directions if they are too complicated. Typically giving structure to small daily activities like getting dressed, bathroom activities, and meal times will help children learn these simple tasks. Sticking with the routine and talking through them in short statements of direction can be great for avoiding any negative behavior that may come from these situations. Many behavior experts, including Dr. David Stein, recommend visual schedules. These are explained in his book Supporting Positive Behavior in Children and Teens With Down Syndrome. Routine is also aided by prepping your child for the next thing they will need to do. Dr. Mary Pipan writes that transitioning between activities requires preparation, and can be eased by preparing your child verbally or visually for the coming transition. She also recommends visual schedules. Visual schedules are made of pictures of activities and places that explain the routine for the day.
2. Reward
Positively reinforcing good behavior is a powerful motivation for children, and especially for children with DS. Rewards can take many forms. One form is promising something in order to persuade a child to perform a certain behavior you would like them to perform. This reward can take the form of a treat or an activity that the child likes. These are spur of the moment bargains one might strike with a child, but many child behavior experts recommend a more structured reward system like a token economy. A token economy is a structured reward system normally consisting of a simple chart with pictures of positive behavior. The chart is check marked when good behaviors are exhibited, and then a reasonable reward is given to reinforce and encourage the behavior to continue. Dr Stein has a section in his book with recommendations for setting up a token economy.
Another form that can have lasting effects over time is simply praising good behavior. It is important and powerful because praise immediately gives a child a positive feeling they can associate with the behavior they just displayed. When the child displays a positive behavior, such as picking up toys when play is over or even eating their vegetables, it is important to let them know they have done a good job. High fives can go a long way!
3. Choice
Whenever possible, give your child a choice. This will help them feel empowered and it will also minimize negative behavior triggers. By allowing the child to choose between items you have already approved, you won’t have to force choices upon them. These can be simple choices, like what cereal to eat for breakfast or what shirt to wear to school.
Flexibility in discipline is also important. Children with DS (along with typically-developing children) will often misbehave simply for attention or a reaction, so it is important not to take the bait. Often any reaction, be it anger or laughter, is all they are looking to achieve. Ignoring minor inappropriate behavior is better than reacting. A reaction would positively reward the very inappropriate behavior you want to stop. Dr. Stein adds that when all else fails, preserve the relationship with your child. Yelling at your child for every little thing does not foster good behavior, and may do more harm than doing nothing at all.
4. Redirection
Children with DS can easily slip into the habit of sensory seeking. Sensory input are messages we receive from our five senses, and can be used by children to sooth themselves in times of stress or to act out when they are feeling frustrated or unhappy. Some of the things they may choose to fulfill their sensory seeking may be annoying or displeasing. Some behaviors may occur out of boredom and a need for attention. Examples of sensory seeking behaviors include jumping, frequently touching others/objects, and making loud noises.
Sometimes the best way to deal with sensory seeking is to help the child direct their free time activity by spending some time with them playing, reading a book, or coloring. These behaviors can often be anticipated. Once you know what may trigger the negative activity, you can be prepared with a replacement activity to redirect the child to a positive activity.
5. Consistency
Consistency is important for behavior modification. Children naturally test boundaries and make unconscious notes of how their behavior is dealt with and how that made them feel. It sounds simple to be consistent, and it seems simple to follow a plan of encouraging good behaviors and discouraging bad, but Dr. Stein warns that human nature has a tendency to notice the bad over the good. He also stresses the importance of presenting a united, consistent front. This means that siblings, teachers, and other caregivers must be on the same page regarding your strategies.
Behavior in School
Sometimes, behavior challenges in the school setting can interfere with the learning process for the individual with Down syndrome and their peers. It is important to understand the behavior and learn ways to prevent it or replace it.
Check out presentations prepared for DSAGC families from Gretchen Carroll, M.A., Education Coordinator for the Jane and Richard Thomas Center for Down Syndrome on the hot topic of behavior (understanding it, preventing it, replacing it and responding to it).
Behavior Tips for the Preschool Years
Behavior Tips for the Elementary Years
Functional Behavior Assessment
Behavioral Assessment:
If behaviors start to interfere with academics, workplace performance, or everyday living, it may be time to pursue a Functional Behavior Assessment (FBA) for your loved one. An FBA is a process that identifies a specific or target behavior that interferes with a person’s home, education or workplace responsibilities. The assessment attempts to designate the particular behavior, identify the factors that support the behavior, and determine the purpose of the behavior. From there, a behavioral plan can be created and implemented. This is beneficial in identifying the baseline data and for developing beneficial interventions.
Behavioral Management:
After gathering all the data from the FBA and other assessments, seek help from a developmental pediatrician, psychologist, qualified school personnel, or other service professional to help create a behavior support plan for your loved one. Make sure everyone from home to school to work is on the same page and understands the strategies to be used to help improve behavior.
Requesting/Implementing an FBA:
- Meet with your IEP team / work team to discuss the unwanted behaviors and what behaviors you’d rather have on a daily basis.
- Together decide on an assessment facilitator and schedule to ensure quality data collection and timely action.
- After all assessments, observations and data are collected reconvene to discuss findings and decide on strategies to help curb the unwanted behaviors. This plan is called the Behavioral Implementation Plan (BIP).
- Make sure everyone who works with your loved one is privy to the plan and its strategies so responses are consistent and clear to your loved one at school and/or at work.
- Reconvene after reasonable time has been dedicated to implementing the plan to change the behavior(s) to discuss progress. Be prepared to tweak, change or get more data to improve the plan if needed.
Personal Safety Tips for Individuals with Down syndrome Who May Be Independently Navigating Inside/Outside Their Home
When away from home:
- Be aware of your surroundings – look all around you and do not get distracted on your phone or in other ways
- Stay on well-lit paths. Do not go into dark alleys or wooded areas
- Avoid places that put you at risk whether alone, with friends or in a group
- If someone makes you feel uneasy tell a trusted person and remove yourself from the situation safely
- Carry a form of ID and medical insurance information
- Know your emergency contact’s contact information or carry it with you
- Do not wonder off alone when the expectation if for you to remain with someone or a group
When home:
- Keep doors locked
- If you open a window, be sure to close and lock it before bedtime or going out
- Instead of hiding a key outside, give one to a trusted neighbor
- Make sure all doors are well lit on the outside
- Do not answer the door to a stranger
- Turn off any appliances after use, i.e. oven, stove, hairdryer, heater, etc.
- Make sure your house number is clearly seen from the street for first responders
- Keep a list of important numbers handy
Community Safety Programs
Check to see if your county offers Smart 911 or Text 911. If they do not, start conversations about why these kinds of resources benefit not only your family, but the community at large. Make connections and advocate.
SMART 911 - With Smart911, you can provide 9-1-1 call takers and first responders critical information you want them to know in any kind of emergency.
When you call 9-1-1, your Smart911 Safety Profile displays on the 9-1-1 screen and the 9-1-1 call takers can view your addresses, medical information, home information, description of pets and vehicles, and emergency contacts. You can provide as much or as little information as you like.
Smart911 is a national service meaning your Smart911 Safety Profile travels with you and is visible to any participating 9-1-1 center nationwide.
https://safety.smart911.com/how-it-works#smart-solution
TEXT 911 - Text-to-911 is the ability to send a text message to reach 911 emergency call takers from your mobile phone or device. However, because voice calls to 911 provide more information to 911 call centers, you should always make a voice call to 911 during an emergency whenever possible. Some individuals with Down syndrome may get flustered or not articulate as well as they’d like to in crisis situations. Texting may be a better form of communicating for some. https://www.fcc.gov/consumers/guides/what-you-need-know-about-text-911
Resources for First Responders to Effectively Help
If you have applied for SMART 911, first responders will have that information. When arriving at a scene, other resources may help them to determine the best actions to take.
- Window Clings – on cars or homes
- Help Belts – stating that your loved one may not respond to verbal commands, etc.
- ID Cards – to identify family members in case they are not verbal or are scared to speak
- GPS for locating individuals
- Medical ID info
- Temporary Tattoos – can be used to ID a loved-one while on vacation or in a large park/crowd setting
Resources for Individuals with Down syndrome to Visually Communicate
Being able to communicate with first responders or others in all situations is essential. When stress levels are heightened, verbal communication may suffer. There are resources available to help both individuals and professionals. Many of these resources are free for download: https://widgit-health.com/easy-read-sheets/index.htm
- Paramedic and EMC Communication Boards
- Accident and Emergency Communication Board
- Police Symbol Boards
- Critical Care Encounter Board
- Medical Encounter Board
- And more
