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Early School Years — Ages 3-8 [2023 Conference Video]

Explore expert insights on social strategies, IEPs, and behavior management for children with PWS in their early school years with this video.

In this 1 hour and 52-minute video, Dr. Anastasia Dimitropoulos of the PRETEND Program, Staci Zimmerman, and Cindy Szapacs discuss social strategies, IEPs, and behavior in the early school years for children with PWS.

Click below to watch the video. If you're short on time, scroll down for timestamps to find the portions you're most interested in.

Presentation Summary With Timestamps

0:07 Dr. Anastasia Dimitropoulos, Staci Zimmerman, and Cindy Szapacs present Early School Years — Ages 3-8

  • The early school years are an important time in our children’s lives.
  • This expert panel will discuss how to set up children for success.
  • Dr. Anastasia Dimitropoulous will discuss social strategies based on the PRETEND study.
  • Staci Zimmerman provides tips on setting up an Individualized Education Plan (IEP).
  • Cindy Szapacs discusses behavior in the early school years.

0:43 Dr. Anastasia Dimitropoulos: PRETEND Study

  • Dr. Anastasia Dimitropoulos is a professor in the Department of Psychology Sciences at Case Western Reserve University.
  • She received her doctorate in psychology from Vanderbilt University and completed a postdoctoral fellowship at the Yale University Child Study Center.
  • She’s been engaged in research on PWS for more than 25 years.
  • Her research currently focuses on building and evaluating a play-based remote intervention program to enhance development.

2:21 The Importance of Pretend Play

  • There’s a lot of literature that suggests that pretend play predicts other social and cognitive functioning.
  • Things like social reciprocity, creativity, and emotional regulation are all increased in people who are better players, and so one of the ideas is working on pretend play may boost these skills.
  • We’ve seen this in the typically developing population and we hope to see it in PWS.
  • We know from the work in the lab that kids with PWS have some more challenges engaging in pretend play, but there is also a window of opportunity to strengthen the ability with a play partner.
  • In our work in developing new interventions, we have two main goals: boosting play so that we can work on some of these skills and using play as a platform so that we can work on skills that the child may individually be having difficulty with: difficulty with transitions, perseveration, anything the child struggles with.
  • Our program is designed as a 8-week remotely delivered program for school-aged children ages 6-9.
  • We have a play interventionist work with the child in a play session over Zoom for 8 weeks, and parent education is included for the parents of that group. 
  • Structure is 8-week remote program, twice weekly intervention systems, weekly 15-20 minutes of individual child play sessions, and alternating parent education and recorded parent-child play sessions.
  • Process is using specific story stems, direct modeling of play, positive reinforcement, prompts, and reflection and summary.
  • The content addressed 4 main goals:
    • Emotional understanding
    • Emotional regulation and problem-solving
    • Play complexity
    • Flexibility in play

1:52 Findings from the PRETEND Program

  • Increased organization and imagination in play related to cognitive skills, organization, and fluidity of ideas.
  • Greater affect expression and variety of emotions expressed.
  • More themes are generated, which relates to idea generation, creativity, cognitive flexibility, and problem-solving.
  • Kids become better players and they are generating more ideas in play by the end of the intervention.
  • Preliminary data shows that children who are doing better with pretend play are showing higher scores on divergent thinking tasks.

7:34 Strategies for Facilitating Pretend Play (bold are most effective)

  • Active watching
  • Summary and reflection
  • Following the child’s lead
  • Labeling feelings
  • Reinforcing
  • Questions
  • Modeling
  • Prompting
  • Subtle and nondirective intervention strategies may most effectively facilitate pretend play
  • More directive strategies such as questioning may be potentially intrusive, with the exception of prompts for emotions, which may help to elicit a child’s affect expression

9:20 General Play Session Guidelines:

  • Provide unstructured, open-ended toys like dolls, cars, stuffed animals, blocks, Legos.
  • Avoid themed toys, automated toys, and toys that make sounds; they don’t elicit pretend play in the same way as unstructured toys.
  • Use story stems. We always start interventions with a couple of standard story stems and go from there; for example, let’s have a birthday party or how about our friends go to the zoo. Children or adults can start them.
  • Remember: This is supposed to be fun, and quality is more important than quantity. Aim for 10-20 minutes.
  • You don’t have to introduce four story stems if everyone’s happy and done.

10:45 Key Strategy: Summary and Reflection

  • Describing the content the child produces during pretend play lets them know you’re engaged, you’re paying attention, you’re reinforcing what they’re doing, and you’re helping to organize that play story.
  • For example, with the birthday party, you’ll say, “I’m putting candles on the cake, I’m lighting the candles, blowing out the candles.” Reflecting that back helps the child organize and structure that play session.
  • Reflecting back also helps children label emotions. 

11:09 Key Strategy: Following the Child’s Lead

  • Following the child’s lead allows the child the freedom to lead the play session while still working on skills.
  • Naturally build in skills like taking turns and flexibility.
  • Find a balance between following the child's lead and working together to build skills.

11:40 Key Strategy: Modeling 

  •  Modeling has been shown to impact how much pretend play goes on during the session.
  • This can be demonstrating or describing a play skill, mirroring the child, or modeling peer behavior like taking turns or expressing preferences.
  • Examples: Transforming an object: “I’m going to use this block as a spaceship.”

12:40 Key Strategy: Prompting

  • Use “nudges” in the form of commanding statements or questions to encourage the child to use new skills in their play.
  • Examples: “Show me what’s next.” “Tell me how this story is going to end.” “I wonder how the girl might be feeling.” “What can we use as our pretend spaceship?”
  • Not as helpful: overly demanding or intrusive, questioning or dictating a child's choices, or grounding in reality. 

13:49 Summary: What Can Parents Do?

  • Creative positive opportunities for play.
  • Engage as a partner rather than as a director.
  • Follow the child’s lead.
  • Model, reflect and summarize, prompt when needed.
  • Have fun!
  • The team is in the process of finalizing an online platform to train other people to give the invention and to have our parent education component on that website.
  • Once that is done, we will be looking for volunteers for direct intervention for our preschool families, and will be checking in on previous volunteers.

16:57 Staci Zimmerman: Partnering for Successful IEPs

  • Staci has over 20 years of experience in special education, teaching and consulting in various school districts in Colorado. 
  • She supports private contracts and clients with several foundations.
  • She also collaborates with the PWS multidisciplinary clinic at Children’s Hospital Colorado, supporting patients, families, providers, and school districts. 
  • She is an adjunct professor in the Office of Clinical Experiences and Partnership School of Education at the Metropolitan State University of Denver.
  • She teaches undergraduate special education and supervises student teachers in various school districts.

18:19 Staci Zimmerman: Effective Tips for Setting up an IEP

  • It is important to build rapport with the school. That means,
    • Communicating a common purpose.
    • Letting everyone have a voice.
    • Assuming good intentions from everyone.
    • Valuing the team and members.
    • Trusting the process.
    • Practicing effective listening skills. 
  • Building positive relationships with schools grows parent and school collaboration, creating a meaningful partnership.
  • Parents/guardians need to be active participants and educate school teams about their children’s diagnoses and need for their child to succeed in school.
  • Provide medical documentation. This isn't just about basic food security or transitions. There’s a lot more to PWS, and it’s important to come up with documentation, with knowledge. 
  • Some providers have never worked with someone with PWS, so you might need to educate them. 
  • Schedule an informal meeting in August to touch base before the school year begins. This should be documented in the PWN.
  • Create collaboration between outside service providers and the school team. 
  • Effective daily communication is important. The easiest way may be a Google Doc, and I would suggest writing that into the IEP because it’s a single point of entry.
  • Every service provider should have access to the Google doc, so not just the special ed teacher and the paraprofessional. That includes speech/language therapists, PTs, OTs, etc.

22:42 Health Care Needs Plan

  • Create a Health Care Plan with the school nurse and special ed team. This should be updated every year.
  • Document dietary needs like meal modifications, creating a food secure environment.
  • Specify sleep needs. For example, if your child needs a break or a nap. Where will that be? When will that be?

25:25 Safeguards Packets and Meetings

  • When you receive a Safeguards Packet, read the fine print and ask questions for clarification.

  • Who is in attendance at the IEP meeting?
    • Parents/guardians
    • Student (if appropriate)
    • School IEP team
    • Outside service providers
    • Outside support resources
    • Paraprofessionals; make sure to request their presence.
    • Other
  • It’s important to get everyone on the same page, or in the same room.

29:02 Accommodations and Modifications 

  • Students with PWS have unique needs that schools need to understand. The team must accommodate these specific needs and address them in the accommodations/modifications section of the IEP.
    • Food restrictive environment
    • Direct supervision (ideally, a one-on-one paraprofessional) 
    • Rest during the day
    • Breaks
    • Supervision 
    • Modified academic instruction
    • Visual schedule and consistency
    • Noise at school (bells, alarms, etc.)
    • Cafeteria supervision to address food restrictions (pre-plating?) and trash cans
    • Schedule Parent/Teacher conferences with general education teachers as well as special education teachers

33:10 Social/Emotional Needs

  • Functional Behavior Analysis/Behavior Intervention Plan
  • Do you need to tweak it year to year?

33:39 Overall Tips

  • Parents/guardians who are involved in their children’s schools (PTOs, volunteering, getting to know classmates, etc.) will create positive partnerships with the school team and community.
  • If there is a difference in opinion, parents/guardians and schools are more able to discuss issues effectively if positive communication has been established from the start.
  • Teacher morale improves when families are involved and can appreciate each other’s challenges.
  • Parents/guardians are experts in their child’s diagnosis, and school team has expertise in their profession. 
  • Collaboration is going to support the best outcomes.
  • One last thing, a lot of times the IEP has parent input. Type out your own goals, dreams, wishes and have them entered into the IEP.
  • The parent input can help drive the IEP.
  • Shares successes of people with PWS and Down Syndrome.

1:03 Cindy Szapacs: Behavior in the Early Years

  • Cindy is a Certified Behavioral Analyst with a master’s in education from the University of Virginia.
  • She has been working in the field of special education, mostly using Applied Behavioral Analysis.
  • She currently works as a behavior analyst supporting classrooms run by the Bucks County Intermediate Unite.
  • She’s also the mother of two boys, one of whom has PWS.
  • Top advice: Start early with strong strict behavioral expectations.
  • It was easier to get more lax as her son got older.
  • Now they can be more flexible because they had lots of rules early on.
  • Her son has an individual who loves routine and has a hard time being flexible.
  • Be consistent. Whatever you choose to do, be consistent, have discussions with everyone who is caregiving the child: significant others, grandparents, sitters. 
  • Pick a few things you just can’t bend on and make sure everyone agrees you’re all on the same page; that’s the only way it’s going to work.
  • Focus on what you want them to do more of; don’t focus as much on what you want them to stop doing .
  • Aim for FUN, happy lives.
  • Definition of behavior: It is observable and measurable. Anxiety is not a behavior, anger is not a behavior. If they are anxious and bite their nails or are pacing, that's behavior. If they ask the same question 17 times, that's behavior. 
  • That’s what we’re going to observe and measure and try to get more or less of.
  • Words like “anxious” and “sad” describe emotions, not behaviors.
  • Behavior is actually a neutral term; it is just something somebody does that creates a change in the environment.
  • When we talk about behaviors we think of tantrums and kicking and throwing things and biting. Those are behaviors but so are appropriate behaviors like waiting, sitting quietly.
  • We are going to talk about principles you can use to increase more of what we want to see in children with PWS.
  • Want to focus on the positive: antecedent strategies.
  • Sometimes schools intervene at the end, but if they focus on the positive it’s more effective.

1:11 Antecedent>Behavior>Consequence

  • Applied Behavioral Analysis talks about the ABCs of behavior.
  • Behavior is a response to something in the environment; it could be a response to an internal thing, which happens a lot with PWS.
  • That’s when people will say in a meeting, “I don’t  know why you’re kid’s doing that.” Don’t take that answer. 
  • There is a reason. It may not be obvious because oftentimes it’s something internal, like anxiety.
  • So when we talk about behavior, there’s something immediately preceding it, and it could be a millisecond before the behavior, and it’s going to affect it. 
  • When we’re looking at teaching, it signals that reinforcement is available, so in a program we use a lot of reinforcement: “Hey, good job.” Kids will learn when a teacher talks to me after I do a good thing, there’s a consequence, so I’m going to keep trying to do more of the good thing.
  • That’s how we want our kids to think: “What do I need to do to keep the good stuff coming? Not what do I need to stop doing to avoid the bad stuff. That’s not effective and research really supports the use of positive reinforcement for changing and maintaining behavior over time.
  • So look at your behavior plans and the interventions. Timeout is a punishment procedure; if they’re using timeout in an IEP or a program, look really closely. There’s a time and place for it, but it is considered punishment.
  • Ultimately we want to focus on getting a behavior and then giving reinforcement so reinforcement increases the future likelihood of a behavior happening under the same condition. 
  • Examples of positive consequences are giving them a break if they’ve cooperated.
  • So anytime somebody says this behavior is happening you want to know what’s happening before and after.
  • We also want to look at what we call motivating operations, things like lack of sleep, hunger, thirst. 
  • Motivation to engage in appropriate behavior is weakened by illness/medical change.
  • Any time you have a sudden change in behavior that you’re surprised by, you want to rule out a medical cause first. 
  • Another thing is people, and people with PWS, will engage in negative behaviors to get attention. You want to remember that attention is attention; important to differentiate type of attention.
  • Occurs when a person does not have what they like and stops when give the item/activity/FOOD.
  • When we know WHY, we can make change.
  • Sensory stimulation (automatic reinforcement) : people jump to this conclusion rather quickly. Wait to try all other things first before saying that’s the reason. 

1:20 Prevention Strategies

  • When they do something right, let them know. Give lots of praise, attention, whatever the child likes when you “catch” the child doing something they should.
  • Say “yes” as much as possible. Examine why you’re saying “no.”
  • Schools and parents: Can I deliver what they’re asking for? 
  •  Offer an alternative. “We can’t do this right now, but we can do this instead.”
  • Make sure there’s lots of fun.
  • Teach tolerance and persistence first. If the puzzle is too hard, start with one piece in.
  • Keep things short; end the activity before the behavior begins.
  • If it’s for sensory stimulation, consider the skill level and ask why they are trying to escape it.
  • What do I need to teach? Offer safe ways to get input. 
  • Limit words and attention. Give space, Wait until calm (monitor for safety). 
  • Key is to wait, prompt the correct response.
  • It’s not about winning. 
  • If you hit a point where behavior is escalating, wait. There is no right or wrong answer to how long it takes.
  • As soon as the child starts engaging in expected behavior in place of a problem, start reinforcing!

1:28 Summary of Behavior Tips

  • Create good habits early! 
  • Use lots of positive reinforcement.
  • Minimize reaction to problem behavior.
  • Just wait.

1:29 Q&A

FPWR Enewsletter

Topics: ages: 4-7, Parents, Children 3-6, Children 6-12

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.