FeedI’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
July 26th, 2009 at 10:23 pm
I would love to win the book! My twins both have SPD, and this interview was wonderful. Thank you for sharing your thoughts!
July 27th, 2009 at 1:49 pm
Chynna:
I also posted this on Facebook and told people they could comment there, and I would transfer them here. The following two comments are from Facebook:
Hey Margo, thanks for the links. We’re looking into aspects of this, too.
Marta F.
July 27th, 2009 at 1:51 pm
From Facebook:
Amie M. said:
So nice to have light shined on this. Lucas has sensory processing issues and in learning about it Tony realized he has always had some too, and so has his dad. Sometimes I see kids in counseling who are misdiagnosed with other things b/c people don’t know enough about this disorder. Thanx again.
July 27th, 2009 at 1:59 pm
Wow. Thanks so much for sharing. My son is fron Russia, adopted when he was almost 8 months old. We’ve been struggling with behavior since he was around 2, first attachment, then realized it was more a processing issue. Currently he is in OT for SPD and we are seeing progress. But.. we have a ways to go…
Anyway, thanks so much for your insight. I look forward to reading this book to my son!!!
July 27th, 2009 at 2:39 pm
First of all, I’m so excited to be here! (Thanks for having me, Margo!)
Thank you for the comments so far too. It’s wonderful to see people wanting to talk about SPD and learn more about it. The more we talk about it, the less “unknown” it is. =) Amie, you are so right–children with SPD are often misdiagnosed because (a) the symptoms closely resemble other disorders, such as Autism or ADHD and (b) because it isn’t an “official” diagnosis, the other labels are given for funding purposes. The problems with this are that the child isn’t receiving the therapy he or she SHOULD be getting and, therefore, won’t thrive the way they should.
Jennifer, that’s such an inspirational story. HOw awesome of you to recognize your son had a deeper struggle. Hang in there…it takes time and patience but the SPD therapy really helps.
Thanks to everyone! I’ll drop in again later.
Chynna
July 27th, 2009 at 6:31 pm
Thank you so much for shining light on this topic. I am a counselor in private practice and also my son has SPD. In learning about the diagnosis, my husband realized he has had many symtoms his whole life, and probably his father also. It answered many questions.
Knowing about this has helped me help families of young children get the help they need. This book is very unusual because it is more for laypeople and kids need to be educated as well as parents. Best of luck with it and I will definitely recommend it to families I see.
Amie
July 27th, 2009 at 8:11 pm
Hi Amie. You know, it’s actually quite common for parents to have that “A-ha!” moment once their child is diagnosed with SPD and begin their therapy. The a-ha comes from remembering having similar experiences as a child but not having the words to explain. I went through that too.
I also had sensory issues as a child. I had difficulty with textures and my sense of touch (tactile) was incredibly sensitive. People used to say things like “You must have been a bloodhound in your last life,” because I smelled things differently and much more intensely and I heard those tiny noises no one else seems to. I have difficulty with certain pitches too. I had difficulty concentrating in school when too much was going on…etc. Of course, no one thought of anything because I got good grades, I played the piano very well and other things. So it didn’t matter if I freaked out in certain “touch” situations or had trouble with printing/writing.
Now we are so lucky to have a name for this “unknown” struggle and that wonderful people are researching it.
Thank you for your comments about my book—that really means alot to me. I wrote it most of all for children out there—to give them a voice and the words to explain their disorder to others.
Chynna
July 27th, 2009 at 9:40 pm
I am a teacher and I would love to read this book! Very Interesting!
Thanks,
Jill
July 28th, 2009 at 2:15 am
Thank you so much for sharing this book with me! We have struggling with the way one of my nieces acts and I am wondering if this is what is wrong. Now, we will have something to reference when she goes for her check-up this year.
Thanks again,
Vickie
July 28th, 2009 at 3:13 am
Hi Jill and Vickie! Thanks for stopping by!
Jill, this would be an awesome resource to include either in your classroom or the school library. We’ve been so lucky to have very open teachers and the principal at Jaimie’s school. Not only did her Kindergarten teacher ask for a copy for herself, she made sure to get it into the different sections of the school and in the library! There are many children who have sensory issues as the core issue of their struggles in school but they aren’t addressed because people look at the behavior instead of asking, “Okay…what’s causing him or her to act this way.”
Vickie, I think what an awesome aunt you are! Yes, do encourage your neices parents to bring it up with the pediatrician. Be sure to let them know to make details notes and lists of behaviors, reactions, and–if they remember–triggers. This is all vital information. Unfortunately, alot of doctors may only look at the behavior–which can be “fixed” or will be “outgrown.” This isn’t the case with SPD and parents who suspect it’s more than a spirited nature should definitely get it checked out.
The underlining message is to trust your gut. If you KNOW something is wrong…if the child isn’t thriving the way he or she should…listen to what your gut tells you.
Chynna
July 28th, 2009 at 12:39 pm
I just want to thank everybody for their comments and for this discussion on my blog. It has been so enlightning, Chynna. Besides the comments here, I have had a few people email me and say that they think their children might have a form of SPD and thanks for the post, and so on. Chynna, what you are doing by shedding light on this subject with your book is so important. And I can’t wait for your other books to come out. I think a lot of parents will be able to use the Sensory Diet book!
Thanks again for all your hard work, and thanks for the comments. I will be picking a winner around 3:00 pm today.
Margo