Out of My Mind – Chapters 3 & 4

Chapter 3 discusses how Melody figured out that she was different just a little at a time and the anger and frustration that came with those realizations. She talks about the sadness she saw in others, especially her mom and dad, as they came to terms with her perceived limitations. She expresses gratitude towards her father and her caregiver who lives next door, because they always spoke to her and treated her with a level of respect that others often didn’t.   Melody is highly intelligent but is unable to convey that to others due to limited communication which is a result of her physical disability.   She becomes angry because she can’t effectively communicate but it is seen as a tantrum and her attempt at communication is overlooked. As I read this chapter, I thought back to the many students I have had over the past 12 years of my career who appeared to have only pre-intentional communication. Could I have possibly missed underlying skills in a child similar to Melody? How often do others in our schools overlook communicative attempts in the students we serve, and what could we do to minimalize it?

Chapter 4 opens with Melody discussing her experience with a doctor who was performing intelligence testing since she was approaching school age and her mother was looking at enrollment options. She recounts her frustration at the tasks presented to her by the doctor most of which, did not take her physical limitations or other answer options into account. She was completely aware of the moment he began to give up on her. His perception was that Melody was severely limited but it was actually HIS limitations that didn’t allow him to see how incredibly intelligent she really was. Her mother knew better and fought for her daughter tirelessly. This chapter reminded me of a quote from Albert Einstein that says “Everyone is a genius. But if you judge a fish by its ability to climb a tree, it will spend its whole life believing that it is stupid”. How often do we see kids who are not accommodated properly and what can we do to help? Are we making sure that physical limitations do not negatively impact our communication assessments? What can we do to make sure we are seeing a child’s abilities from all possible angles?

–Aimee Burton

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10 thoughts on “Out of My Mind – Chapters 3 & 4

  1. Laura B Woodring says:

    I think this is a good reminder, when working with students presenting with multiple disabilities, to utilize methods of constant assessment of communication strengths. Our students would benefit from our diligence and awareness for signs of communication potential. It is also a good reminder to avoid “cookbook therapy”, where we follow the same “recipe” or treatment plan for our students requiring AAC. Each student deserves thorough and frequent reassessment to adapt our plans to evolving communication skills.

  2. Karen L Reynolds says:

    It was interesting to note that Melody recognized that her dad used real words with talking with her but that her mother did not. Too often I think society talks “down” to people with disabilities or talks louder as if the that will assist with understanding. It made me sad to realize that there are many with language trapped inside their heads, which can definitely lead to the “tornado explosion” when frustration with the inability to communicate persists. When Melody was assessed, how awful for a nonverbal child to be presented with verbal tasks. Her mother knew she was much smarter than she was able to show. The thought of placing her in a facility was appalling. She knew her child knew more than she could show.

  3. Rachel says:

    One of my favorite quotes, Aimee! Although I do not serve low incidence students at my school, reading this book makes me think of one of my graduate school rotations at the Wendell Foster Center, which is a residential facility for people of all ages with a variety of cognitive and/or physical disabilities. There were many times during my rotation where “fits” or “tantrums” would occur among residents, and it was not always perceived as a communication attempt. Looking back, I wish I would have taken more time to try and find the underlying antecedent or communication attempt for some of the behaviors that occurred.

  4. Kathleen Russell says:

    Reading these two chapters made ME angry. How could a doctor ask Melody to complete a task (stacking the blocks in order) that she physically couldn’t do? OR name colors when she doesn’t talk? When Melody hit every picture for ‘Which animal gives birth to a calf?, I had to chuckle to myself. How often have we told a child they were incorrect without giving them an opportunity to explain their way of thinking, Melody could not do this, so that is double the frustration.

  5. Lindsey Ludwig says:

    I’ve really enjoyed the book to this point, but I’m having some of the same feelings that Aimee mentioned, wondering if there have been children over the years whose communication skills were like Melody’s and I didn’t meet their needs. I think that we always need to keep lines of communication open with parents, teachers, assistants with these children, because since we typically only see them for an hour or less a week, these people are with them much more frequently and may see communicative behaviors and intents that we don’t. When Melody mentioned not being able to tell her mother that she loved the smell of her hair or her father that she loved the feel of his whiskers, it really broke my heart.

    And in the next chapter, I was so happy to see Melody’s mother stand up for her with the doctor. Some of our non- or minimally verbal children are lucky enough to have parents like Melody who will advocate for them til they’re blue in the face, but many others aren’t so lucky. There are also many who simply don’t seem to know what to do for their kids, so maybe this book would be a good recommended read for some of these parents. I know it’s already been eye opening for me, and maybe it could help parents as well, in terms of setting expectations, interacting with their children and the importance of using communication systems.

  6. Katie Cohen says:

    Chapter 4 evoked a lot of emotion for me. I was saddened by the way the Dr. interacted with Melody. I became angry with the way he spoke with her mother. The entire visit left me feeling frustrated. This situation could have looked much different if Melody was not blessed to have a mother who advocates for her. Makes me wonder what Dr.’s visits look like for our kiddos.

  7. Jecel Goyala says:

    It’s so sad that Dr. Hugely assumes that Melody’s physical disabilities mean she has mental disabilities as well, which is a prejudice Melody must deal. This chapter shows a medical professional conducting condescending and misguided tests of her intelligence, is meant to show the absurdity of the way in which many people (even doctors) treat disabled people. I also hate the way the doctor delivered the news. It only shows he needs to work on his counseling skills.
    As an SLP, I need to acquire counseling skills. Rather than just providing information, counseling skills allow me to provide information while demonstrating empathy at the same time. Sometimes the news we must share with our clients is not good; counseling can help clinicians provide bad news in a supportive way. As an SLP, I need to use specific counseling skills to help clients overcome roadblocks to success in treatment.
    Luckily, Melody’s mother has a special connection with her, and although she cannot speak, the mother understands Melody’s intelligence. The bond of family, in this case, is more useful than the advice of the doctor, who would have denied Melody the education she cherishes because of his prejudice.

  8. Amanda Piekarski says:

    Chapter 4 definitely made me think about how different limitations impact our assessments- hearing, vision, attention, motor, etc.
    I also thought about how Melody felt about adults talking about all her limitations in front of her. Something we need to be careful of, assuming everyone in our company does not understand.

  9. Pam says:

    This family was so fortunate to have that next door neighbor!! It is so telling to read this story from Melody’s perspective. How wonderful it would be to tap into her word bank and her photographic memory and her inferencing abilities (like knowing her dad was walking up the steps). She remembers the toll-free number from every commercial???? You can understand the “tornado explosions.” And I was glad her mom didn’t medicate her for the one described. And I was so proud of her mom standing up to the doctor who was evaluating her “intelligence.”
    Moms understand their children and I wish more moms would come to IEP meetings. Their input is so valuable.
    One of the presenters at KSHA shared that research says that a student who cannot communicate/needs AAC, who has normal intelligence, typically doesn’t ever read much higher than a second grade level. I don’t know how Melody’s story ends, but wouldn’t it be terrible if all those words and thoughts have to remain inside.

  10. Sarah Crady says:

    I felt similar to you Aimee. This chapter made me reflect on if I have somewhere doubted or missed the communication abilities of someone on my caseload. I think the most important way to avoid this is getting information from the families of our students. They know their child best and may be able to provide valuable insight.

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