I’m Not Weird, I Have SPD–Blog Tour with Author Chynna T. Laird
July 26, 2009 in Elementary Educators, Laird, Chynna T., Making Personal Connections, Picture Book Tags: Chynna T. Laird, I'm Not Weird I have SPD, sensory integration dysfunction, sensory processing disorder, SID, SPD
Book cover courtesy of Lily Wolf’s Words blog.
Today, I welcome author, Chynna T. Laird, to Read These Books and Use Them. Chynna has written a fiction book for children about Sensory Integration Dysfunction (SID) (also currently referred to as Sensory Processing Disorder or SPD). She discusses below what SID/SPD is and how her book can help children, parents, and family members understand this difficult condition. We can also look forward to her memoir about raising an SPD child coming out next month. She has also been asked to write a reference book on the Sensory Diet (that’s a holistic approach–OT, nutrition, and brain stimulating activities). Chynna is also a mother of four. To check out these cute kids, see pics on her website: Lily Wolf Words.
**And now the part we’ve all been waiting for. . .the interview with Chynna! For a chance to win a free copy of this fantastic book, please leave a comment or question below. If you know anyone who has a child with Sensory Integration Dysfunction (Sensory Processing Disorder), please refer them to this interview and site! Thanks!
Margo: What inspired you to write I’m Not Weird, I Have SID? Please also tell us what SID/SPD is.
Chynna: SID, or Sensory Integration Dysfunction (also currently referred to as Sensory Processing Disorder or SPD), is a neurological disorder that can interfere with the brain’s ability to effectively process sensory information. Basically the brain takes in information received from the sensory organs, but somehow, these messages get “scrambled,” which can result in confusion, sensory overload, and quite often, meltdowns.
The best way I’ve read to envision what SID/SPD feels like is picturing what it would be like to wear a shirt made of sandpaper; or how difficult it would be walking during an earthquake; or eating next to a garbage can; or even the feeling of thousands of caterpillars crawling on your skin that you can’t get off. These children’s sensory systems are so sensitive and disorganized– that’s sort of what their environments feel like to them. This can make doing the simplest things, things most of us don’t even pay attention to, difficult and even scary. And that’s what it was like for my Jaimie.
Until Jaimie was about 2 1/2 years old, when she got her SID/SPD diagnosis, we had no idea why she reacted so strongly to the world around her. Touches, smells, light, sounds and other sensory stimulation seemed to upset her so much that our entire day revolved on how to keep her calm. She was also clutzy, fearful of high places, and screamed whenever we picked her up. The most upsetting thing was watching her around other kids. Often, other children were simply hurt by Jaimie’s reactions to them as she’d usually scream and run away or just cried. A couple of times, children actually made fun of her because they just didn’t understand. And that’s why I wrote this book.
Initially, I wrote it to validate Jaimie’s feelings—to show her she wasn’t “weird,” alone, or the only one who felt the way she did. I also used it as a way to help explain her SID/SPD to her and to give her the words to use to explain it to others. It was a way to empower her to learn about it, understand it, accept it, and teach others. Then I met a mother in Jaimie’s preschool class whose son had just gotten diagnosed with SID/SPD. So, I gave her the book because I thought, maybe, it could help her and her family, too. She bought more copies from me and gave them out to people. From there, I thought, Hey! If it helped Jaimie and a few others, maybe I’ll try making it more of a publicly accessible book.
Now it’s in libraries, SPD resource clinics, a few OT clinics, and even in Jaimie’s school library! I never thought to share it with the world, but I guess, if it helps other families, it’s all worth it.
Margo: That is a very touching story, Chynna. I can’t imagine how it would feel to have a sensory “overload” like you explained above. Your examples of a sandpaper shirt or caterpillars on your skin really show how terribly hard it would be to live with this disorder, especially as a young child who has no idea what is going on with her or him. That’s why this book is so important! How difficult was it for you to write this book about Sensory Processing Disorder, and how did you face the challenges?
Chynna: Honestly, I was in tears while I wrote it as well as when I read the first hard copy of it. The pictures beautifully illustrated the story I tried telling with my words. It’s so hard to watch your child struggling with something and feeling you can’t do anything because your touch only makes things worse. This was the one way I could help Jaimie and comfort her. And the first time I read it to her, she teared up, too. “That girl is like me, Mama,” she said. Then made me read it over and over.
At first, the biggest challenges we faced were with trying to get someone to listen to our pleas that something was wrong with Jaimie. She didn’t fit neatly into any of the categories of Autism or Asperger’s or any of the other neurological, behavioral, or emotional disorders. I knew in my gut something was wrong; and I just researched, observed her, and fought until someone cared enough to listen. (That was Donna in the story. She was the person who recognized SID/SPD and helped steer us in the right direction to get Jaimie help.)
Until Donna came along, Jaimie was often too scared to leave our house because she didn’t know how something or someone was going to make her body feel. Jaimie’s form of SID/SPD is on the more severe end of things because all of her sensory systems are affected, including her proprioceptive and vestibular systems. (These systems have to do with balance, coordination, and being able to figure out where you are in relation to things in the environment. For example, Jaimie falls down a lot, has difficulty judging how high up she is, and bumps into things a lot.) Now that we understand that she just needs help organizing her little body so she can tackle what the world has in store for her, we just need to make sure to have both stimulating as well as calming activities for her—depending on what her sensory needs are at a particular time.
The most difficult thing for me as a mom has been not being able to express normal signs of affection with Jaimie. She isn’t able to handle hugs, kisses, cuddles or light touch most of the time, so that has hurt a lot. Imagine not being able to hug your child when she hurts or is scared because your touch makes her feel even worse! But she has been brave enough to hug me a few times, and I treasure those moments because I know how much courage it took her to share that with me.
Margo: You and your family are truly an inspiration! I so believe that parents have to be advocates for their children, and you are living proof of this. Thank you for sharing your story with us! What are two or three activities parents or teachers could do with their children after reading this book about Sensory Integration Dysfunction together?
Chynna:This is a fantastic question because Jaimie took the book to her school, so her teacher could read it; and I thought of a few ways to help the other kids understand the story a bit better. Here are a few things I’ve suggested when telling the story—and that I plan to include in the revised edition of the book:
(1) Have different feeling items from feathers, pompoms, and pipecleaners to sandpaper. Have the reader touch them while reading them, being sure to ask questions such as, “How does this feel to you?” “How do you think this might feel to Alexandra?”
(2) I did different things to get an idea of how Jaimie’s environment may have felt to her. That was the only way I could understand what she was going through. I put on an itchy, uncomfortable wooly sweater and tried doing my normal things; I tasted things that were too salty/sour/hot and different textures that I was sensitive to; I covered my eyes and tried walking around, climbing on things or even maneuvering around the house; I tried walking around with rocks in my shoes or with shoes too small or uncomfortable to walk in; I put weights on my wrists and ankles then tried maneuvering myself effectively, etc. Have children try some of these things or to walk outside of their comfort zones and discuss why this may feel “scary” or “different.”
(3) Have children write out a story about a time they felt frustrated trying to do something they wanted to do, but their bodies weren’t cooperating with them. (Some examples may be learning to ride a bike, conquering something on the playground, learning to write/read, or a similar activity.) How did it make them feel? What did they do to feel better? Then discuss why the same tasks may be more challenging for Alexandra. How can we help her feel better about the situation and herself?
These were all things Jaimie’s teacher did with her classmates both to educate as well as to help understand. It was wonderful and helped so much.
Children are amazing and so lovingly accepting if we give them the right tools. Teach them to understand because knowledge is an amazing tool.
Margo: Chynna, thank you so much for those awesome classroom/homeschool ideas. I am so glad you were able to share your story and your book with us today. Readers, don’t forget to leave questions or comments for Chynna. You are also entered into the contest for the free book! ***Drawing will be Tuesday, August 28, 3:00 pm CST