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.
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.
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.”
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:
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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