Book Study: Preface and Introduction

Here’s to the first post of our new book study! The format of this post is a little different. I have pulled a few quotes from the preface and introduction sections of the book. I will share my thoughts. If you have comments, please leave them below!

The opening sentence of the book is:

“When I was small, I didn’t even know that I was a kid with special needs.”

This makes me wonder how often this is true for our kiddos and even their parents. In fact, many times parents who only have one child do not realize that something is “different” about their kiddo—possibly because they do not have another child to compare to. For me, this brings to mind the often-quoted statement from Theodore Roosevelt, “Comparison is the thief of joy.” Even the term “special needs” indicates comparison; that this child’s needs are different/special compared to the needs of other children.

 

“It’s like being a doll and spending your whole life in isolation.”

My only thought about this is how frightening it must be!

 

Should we listen to every single word you say?

“Please don’t assume that every single word we say is what we intended.”

I think that this is interesting in that we do need to strive to listen to everything. It seems to be a fine line. Which statements are truly what was intended, and which are not?

 

I’ll end with this post with the final sentence of the prefece:

“Can you imagine how your life would be if you couldn’t talk?”

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7 thoughts on “Book Study: Preface and Introduction

  1. Lindsay says:

    This quote you mentioned resignated with me — “When I was small, I didn’t even know that I was a kid with special needs”. I have thought about this multiple times since working in JCPS. I work with preschoolers, most of which have cognitive, physical and speech impairments. For my higher functioning kids, I am always curious do they realize they are different, especially when they see their typical peers? This also hits a personal note with having an older sibling with a disability. I asked him several years back (he is 37) when did he realize he had different needs and he looked at me like I was insane… and replied “I don’t, I work and live just like everyone else”. He also mentioned that as a teenager he felt like his was different, but as an adult he doesn’t have the same perspective and rarely thinks about it.

  2. Karen says:

    My initial thought when starting this book was “how can this be?” I have never known a nonverbal student with autism to communicate through verbal output. Thinking about the skill and time it takes Naoki to communicate just fascinates me. It made me think back to a nonverbal student with autism I had several years ago. One day after many failed trials at verbal speech and after PECs lost its interest, I was at my wits end, having used up my bag of tricks. He enjoyed and responded to the iPad so I started to use an articulation app on the iPad that showed a persons face producing individual speech sounds. My student was very interested in this and one day after a couple of weeks and lots of repeition, he said his first sound. His mom and I screamed. I have never been so happy to hear /p/ in isolation as I did that day. We then incorporated hand movements with vowels and well . . .while I know longer have this student on my caseload as he moved to a self-contained placement, I like to believe that was the day he first started talking. With patience and practice and hard work, it is amazing what we can achieve.

  3. Rachel Lacap says:

    Agree, Karen! I was also baffled that a non-verbal child would be able to communicate with an alphabet board!

    The introduction was a nice glimpse into the mind of parents with children on the spectrum. Never having been in that position, I have never taken into account the lack of resources available on perspectives of autism from a child’s point of view. It does seem that the autobiographies of people with Autism are written by the “higher functioning”, verbal members of the Autism community.

    I am looking forward to delving into his mind and his perspectives. I also would love to see him use his alphabet board in real time. Wonder if there is a video of him using it….obviously it would then need to be translated into English. Just reading what I have already, he has an astounding vocabulary!

  4. Candra Grether says:

    I mention this in my blog post for this week as well, but this book is reminding me of so many former and current students. I thought I would only be reminded of students with higher functioning ASD but this isn’t the case. I was also surprised to learn that Naoki is non-verbal but then I thought about it and was reminded of two individuals I know who are also non-verbal but have demonstrated some skills with writing on the keyboard of their dynamic AAC device. I’m trying not to read ahead like I did with our last book study book but I too am curious to learn more about him!

  5. Kim Carter- Campbell says:

    I am super impressed with Naoki’s ability to use the alphabet board to communicate so effectively. Using an alphabet board can be time consuming and frustrating. Immediately, I thought of a student that is currently on my caseload. He is using Proloquo -2- Go and instead of using the prepopulated icons, the student prefers to type his responses. He has functional receptive language skills and does a great job with letter identification; at times, he does need help with spelling. One of his biggest challenges is maintaining attention to complete a task. Reading this chapter, I questioned my approach with this particular student. Maybe, I should focus on using written text as his means of communication since that is a strength and preference versus forcing the use the prepopulated icons.

  6. allison forrester says:

    I liked how he described his experiences with conversation and how the “words just vanish.” He says that he may manage a few words, but even then, the message may be opposite of what was intended. He also talks about simple activities, such as shopping, being a challenge. This really allows insight into his world and everyday struggles.

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