Engaging literature and students with CHARGE syndrome

This summer, I was asked by a parent whose child had attended our reading tutoring program in the spring, to work one-on-one with her daughter, a rising middle schooler with CHARGE syndrome. CHARGE syndrome involves a number of developmental and medical differences (see www.chargesyndrome.org to learn more), and for this particular child it means profound deafness in addition to other factors. Her signs could at times be challenging to understand, and it was not always clear when you asked her a question whether she understood the answer or whether she was repeating what you last said to her. So what was my approach in teaching reading with this student? Pull out all my favorite picture books, naturally.

When my undergraduate student who had been tutoring her in the previous semester pulled out The Red Book by Barbara Lehmann, she was at first confused and later delighted to find this rich story told entirely through pictures. Over the summer, in addition to many others, we have been reading a great deal of Mo Willems (the Knuffle Bunny books and the Elephant and Piggy books) and Jon Klassen (mostly of the hats-being-stolen-by-fish-and-rabbits genre). Halfway through Knuffle Bunny Too, she had the whole story figured out, excitedly signing to me, “Wrong rabbit, wrong rabbit!” The language and understanding that came through when presented with engaging literature was a delight to see.

lehman redbook 300x300 Engaging literature and students with CHARGE syndrome    willems knuffle bunny too Engaging literature and students with CHARGE syndrome    klassen thisisnotmyhat 414x300 Engaging literature and students with CHARGE syndrome

We do more than read picture books, of course. We work on building vocabulary, we develop American Sign Language (ASL) skills and compare how concepts are conveyed through both languages, and we even examine word order through mixed-up sentences. But these lessons are always underpinned with  marvelous books that are clever and engaging. It is through these books that her abilities come shining through. And although reading tutoring during the summer months would not be the favorite activity of most middle school students, her mother told me that she actually begins laughing and smiling as they approach my building. The joy of reading!

Has anyone out there worked with children with CHARGE syndrome or those with multiple disabilities? I would love to learn about strategies you have used to support their reading!

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Jessica Scott About Jessica Scott

Jessica Scott is an applied instructor in Deaf Education at the University of Tulsa and a previous high school teacher of deaf and hard of hearing students at the Alaska State School for the Deaf.

Comments

  1. Pamela Ryan says:

    HI Jessica…
    first , thank you so much for your work with this student with CHARGE. I have worked for many years with children of all ages, who have CHARGE syndrome and they are pretty amazing. I am also a Board member of the CHARGE syndrome Foundation. I would steer you toward the Foundation website: http://www.chargesyndrome.org for information that we have gathered and created. Also, between the CHARGE website and the Perkins School for the Blind website (www.perkins.org/resources, we have created many webcasts/training videos that you might enjoy. Thank you for your hard work….Pam Ryan, School Psychologist, Perkins School for the Blind/Deafblind Program, Watertown, MA

    • Jessica Scott says:

      Thank you Pam! I used to live in Massachusetts, and I taught at UMass Boston and had several students who were studying to work with the blind and worked as teacher’s assistants at Perkins! Thank you very much for these resources – I will absolutely check them out!

  2. Jillana Holt-Reuter says:

    Hi Jessica!
    My name is Jillana and I am the parent of 4 lovely, adult children of which one has CHARGE Syndrome. When I read your post, I was immediately mindful of Perkins.org and their absolutely wonderful we binary on CHARGE. Please take a look at them, if you haven’t already, so you might learn great insight into the world of CHARGE.
    I hope this helps. http://www.perkins.org/resources/webcasts/charge-syndrome.html

    Good luck!

    • Jessica Scott says:

      Jilliana,

      This is absolutely helpful! Thank you for taking the time to share these with me!

  3. Pamela Ryan says:

    Jessica…
    what a small world!! If I can help in
    any way let me know!
    pam

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