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Building Engagement with Distance Learning

DL #5: Reflections About Individualizing Supports for Children and Families: Olivia’s Story

TIES Center Distance Learning Series
Olivia and Jen with their dog Buster

This is a longer post than other Distance Learning posts. We chose to do this because of the important message it shares in terms of individualizing distance learning for students and the need to involve families in determining the best path for moving forward. The key takeaways for teachers can be found at the end of the article.

Jen is Olivia’s mom. She is a person who learns as much as she can about not only things that impact life within her own four walls, but also things that impact others in theirs. She is one that shows up, advocates, and influences. Jen is an MN LEND Fellow at the Institute on Community Integration, where she is actively involved with other people who are leaders within the disability field as well. Jen and Olivia agreed for us to share this reflective conversation so that we are able to offer specific suggestions and supports to families, children, and school teams based on this understanding.

Jen describes Olivia as a “13-year-old empathetic, creative adventurer, with a deep love of music, science, friends, and Disney. She is a strong emerging self-advocate and bold communicator.” Until the shelter in place was called for, Olivia was included in her neighborhood school. She is in 7th grade. This new norm has been very difficult for Olivia, and because Olivia has autism as an attribute, her mother is on a steep learning curve, living moment to moment, actively discovering a lot about what Olivia needs right now. New behaviors, as well as old ways of doing things, have resurfaced, symbolic of what Jen has termed ”a deep, deep level of stress and vulnerability as seen through regression back to times past”. The changes show how hard it is for Olivia to cope and regulate all the things right now. Jen is doing this learning and support, all the while trying to maintain her own health and well being.

What does distance learning look like for Olivia?

Jen detailed how the circumstances of quarantine life are overwhelming Olivia’s neurodiverse 13-year-old brain and affecting her coping skills. She thinks about how unnerving it is for Olivia right now to deal with constant changes, uncertainties, and responding in an age-appropriate manner. 

Jen has recently resumed the practice of sleeping when Olivia sleeps, claiming it is the only sensible option. Olivia slept from 5:30 pm to 1 am the day she described, so Jen went to sleep at 6 pm. She described how Olivia’s skin becomes so sensitive when she is overloaded in a sensory/emotional way that clothing is intolerable. She detailed how an incident with a full bottle of bleach and “cleaning up” the bathroom were similar to the coping skills she had as a much younger person. Jen has now made a spray bottle of water with essential oils, as well as some vinegar and baking soda so Olivia can clean the kitchen sink as often as needed, as cleaning helps Olivia feel in control. They have also discussed how other cleaning agents require adult assistance. 

Olivia has a ball of twine and a roll of tape that was given to her, so that she can tie and tape her stuffed animals and toys to her heart’s content, rather than cutting them into pieces as she had started doing with a pair of scissors. Sharpening pencils has been calming and purposeful as well. Other ideas considered have been use of styrofoam or peeling the paper off of crayons as that might soothe her sensory needs at this time, and help her regulate herself. Other ideas such as puzzles have not met her needs right now.

Stop and think about the new level of individualization Jen is doing for Olivia now during the period when schools are closed and routines are disrupted. Why? Because that is Olivia. That is what Olivia is telling us she needs right now to feel more whole and more herself.

Olivia is sitting on the couch in her family room wrapping stuffed animals with twine and tape.

This is where Jen’s words are so important to share. She described how she needs to remind herself to be flexible, patient and never lose sight that Olivia is communicating strongly and clearly. She described that routines are so important to Olivia and yet her routines are changing moment to moment these days because that is how her brain is organizing things. Families are trying to figure all of these things out right now. She said, “there is no break, no respite, it is all in, and trying to find the tools and supports that buy families just a bit of solid ground.”

They do this by driving past the places that Olivia longs to go to just so she can see them, know that they are closed, and have conversations about going there again, whenever that may be. Academics are fit in during times where they can be, such as watching her favorite videos with closed captioning on and having her read, then talk about what she read. Music therapy has been broken into 10 minute sessions online with her therapist, as that is all that Olivia can tolerate. Jen said, “(her) priorities right now are giving Olivia some agency, despite everything Olivia knows having vanished overnight”. It is “letting her regress with no shame or punishment...acknowledge accidents happen, as this is a stressful time.”  It is a balancing game of minimal demands, structure and some level of accountability. 

She said Olivia’s relationships and belonging is tricky right now. Others need to be aware that even small doses of friends can be too hard for kids, as they just miss them that much more. 

She explained that Olivia’s best friend is neurotypical and that she would shower Olivia with online visits, calls, texts and videos if Olivia were able to take that in right now. Instead, they have set a time where her friend can send a picture or videos a couple times a week or have a brief video chat (she also suggested using an app where people can have a video conversation recorded and can be watched over and over again when they are ready). When describing what school teams and families should consider, she said, “Patience, communication, and generosity are so important right now.” 

She said that this conversation was helpful, as it slowed her down long enough to think about what Olivia is struggling with, identifying the challenges so that in time she can find the supports and new ideas that “uncover a new patch of solid ground.” She also wanted to make a request, “I wish people wouldn’t call school at home - homeschooling. This is nothing like that...homeschooling still has regular known life attached - friends and activities. This is crisis learning.”

Key takeaways regarding individualization:

As teachers, we have tried and true things that work, tools, strategies, processes. All of those things are important, as discussed in the TIES DIstance Learning article on A Collaborative Start to Behavioral Supports. However, there are individuals that are going to need much more individualization, more designing, and more understanding based on their current experience and the unique way they have of dealing with all that is out of their control.  

To increase engagement and make academic learning more effective, we need to consider the following areas of individualization, and planfully assist families to be responsive to their children:

What to listen for when talking to parents?

  • Patterns, routines, and needs that are emergent and changing
  • Natural regression, gaps, or inconsistencies within and across skills that have previously been learned, maintained, and generalized. This may differ from day to day, person to person or within specific activities
  • Behavior is communication. Needs are being expressed through behavior at this moment in time. There may be supports that have worked historically that need to be revisited now.
  • Routines, while still very important, may be constantly in flux or needing to be changed frequently during this time.
  • Support parents by listening, not feeling like you need to “fix” issues as they arise, and maintaining dialogue with them about what is working or not by regularly checking in and moving forward together. Realize that families may be overwhelmed by a question such as “tell us what you need”.

How might education plans be further individualized?

  • Work with the parents to decide if prioritizing one to two overarching priorities versus specific academic goals is a better option for the moment, then build from there.
  • Academics may need to be embedded within and across daily activities, not as a stand-alone activity. For example,
    • Reading closed-captioning while watching favorite videos and discussing who, what, when, where and why questions
    • Creating a scavenger hunt as you go on a walk outside, that can be as general or specific/challenging as the child can tolerate (for example: find 3 wood ducks, one person riding a specialized brand bike, 4 signs that use the word “pedestrian”). If the child doesn’t know what a wood duck looks like, they could look it up, read about it, find images, etc. in preparation for the scavenger hunt
    • Making a game around one specific thing you are trying to increase independence or consistency with and have the other family members participate as well (for example, remembering to say please and thank you - put a penny in a jar each time that someone in the family remembers)
  • Activities will need to be “try, try again in nature”, not just attempted once. Come up with a number of trials that makes sense (teachers and families can confer about the number of trials that are appropriate for the individual child) before moving on to a different or replacement activity
  • Children may be having a difficult time processing the feeling of wanting to be with friends, but not being able to be. This may be overwhelming to some students and need to be problem-solved in an individual manner. We cannot assume that if a child is having a difficult time engaging online with peers that it means they don’t want to see or be with people. Creating and maintaining community and belonging is important and needs to be problem-solved.
    • Processing this new form of online communication with people, whether peers, teachers, therapists or family members will take time and may never serve a need like that of being in person with one another for some students, especially for those children who need intensive support to assist them socializing and communicating with people when they are face to face and have a difficult time interacting with screens in a meaningful way.
    • Consider the amount, schedule, and flexibility of access or exposure to peers, as it can increase strong feelings and emotions.
    • Consider ways that allow the individual to view or be a part of the community in their own way, on their own time. Create videos, messages, or other means of communicating that children can choose when, where, and how they want to interact.

Remember Jen’s words of wisdom: “Patience, communication, and generosity are so important right now”. Keep communicating. Keep collaborating. You got this.

TIES Center is supported through a cooperative agreement between the University of Minnesota  and the Research to Practice Division, Office of Special Education Programs, U.S. Department of Education (# H326Y170004). The Center is affiliated with the National Center on Educational Outcomes (NCEO) which is affiliated with the Institute on Community Integration (ICI) at the College of Education and Human Development, University of Minnesota. The contents of this report were developed under the Cooperative Agreement from the U.S. Department of Education, but do not necessarily represent the policy or opinions of the U.S. Department of Education or Offices within it. Readers should not assume endorsement by the federal government. Project Officer: Susan Weigert

The National Center on Educational Outcomes (NCEO) leads the TIES Center partnership.  Collaborating partners are: Arizona Department of Education, CAST, University of Cincinnati, University of Kentucky, University of North-Carolina–Charlotte, and University of North Carolina–Greensboro.

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