Sensory Processing Disorder: Not Just Spirited book giveaway and interview

Due to unexpected move and low entry count; this giveaway has been extended until JUNE 1st, 2010. Thanks for your understanding!




Today I'm delighted to bring an interview and giveaway from Chynna T. Laird, the author of "Not Just Spirited: A Mom's Sensational Journey With Sensory Processing Disorder". When I first found out about the book, I was interested, being as I myself have sensory issues and many on the autism spectrum do. Although my issues are related to Autism and Septo-Optic Dysplasia, I enjoyed reading the book. One thing I loved about it was it's 'real' but hopeful; and never suggests anything that could harm a kid. Anyways, on with the interview! (Giveaway details at end)

1) What inspired you to write "Not Just Spirited"?

Not Just Spirited started off as journal entries. I’ve always been someone who journals away anxieties or worries or simply to get thoughts down on paper. When you go through something where people around you either don’t ‘get’ what you’re saying or aren’t listening, you have to have a positive way to work through those emotions or they’ll eat you alive.

Whenever we hit a frustrating point I thought. “You know, there just have to be other parents out there going through this stuff. And that’s just not fair!” I swore that once we got over our major hurdles, I’d do what I could to help other parents get to the information they needed. That’s when I put the journal entries and stories into a book form. Our story isn’t the same as other peoples’ are—it’s our unique experience. But the emotions we felt as parents are fairly common—frustration, isolation, worry, stress, not understanding what was happening to our baby, etc.

If anything, the book can help validate those feelings and, at the very least, inspire parents to keep going on their path…to keep moving forward.

2) What were some of the signs of Sensory Processing Disorder you noticed?

As you know, there are many symptoms and no two children show the exact same ones. And it wasn’t until much later that we figured out what her odd behaviors meant. When we first brought her home from the hospital things weren’t as noticeable but she startled easily, cried a lot, turned her head away from us when we spoke to her and fussed when we held her in any way other than laying her on top of a pillow and walking around with her.

By the time she got to three months old, she cried most of her day. She was a terrible sleeper because every tiny noise woke her up. She needed to be in constant motion and not just gentle rocking. We had to go full force, almost like the motion where you’d be swinging them to toss them onto their bed or something soft, you know? As she got older, her signs got stronger:

she covered her ears all the time, even when noises weren’t that loud (eg: diaper tabs)
she gagged around new smells or actually smelled things that shouldn’t be smelled (eg: clothes, cooking utencils, etc.)
she fought us with every single hygiene task, like bathtime, getting dressed, brushing teeth or hair
she avoided playing with toys that were noisy, flashy, played music, popped out at her, felt funny or smelled.
She avoided playing with other children or people.
She was clutzy, held things too tightly, broke things easily (I can’t count the amount of crayons we went through!), or didn’t hold things tightly enough.
She often lost her balance or tripped on things that weren’t there.
She often scratched at her skin or eyes, pulled on her ears or nose, hit herself in the head, pulled out her hair, and actually tore clothing right off her body.

Later on, her need for routine was so rigid that she had to have everything in an exact place or she freaked out until it was. If we missed a step in a usual routine, she couldn’t go on until we re-did that task. Her sense of touch was so sensitive that it affected what she wore, who could come near her, what she ate and what she played with. She couldn’t seem to get her hands to do things the way she wanted them too (using a fork or spoon, doing fine detailed crafts, writing or games with tiny pieces.) And she needed visual cues or pictures when you taught her something new or explained something to her or she didn’t seem to ‘get’ what you were talking about.

It wasn’t the quirks she had that made us wonder. It was the severity of them, the duration of her fights when things bothered her and the fact that one day something that bugged her to the brink of a fit lasting hours one day didn’t even seem to phase her the next—some days it was hour to hour!

I was so relieved to finally figure out what it was so we could build from that understanding.

3) What were some solutions you found that worked?

It took a long time figuring this out but what finally worked was exposing her to things. Honestly! Now, I’m not saying we shoved her hands into pumpkin goo or made her touch shaving cream right off the bat! We learned that slowly exposing her to sensations then giving her the tools to cope with how those sensations made her body felt was the best solution for a girl with such a high sensitivity level and such a wide range of sensitivities.

Some days she still avoids things, which is fine. But we always encourage her ‘just to try’ then guiding her to a safe place to calm down.

Things that worked for Jaimie are frustration balls (we call them “squeezy balls), fidgets, chewy toys, hammock swings (we have three different kinds of swings to work with what her needs are at a given time), headphones, textured cushions, mini-tramps and deep pressure massage.

Another form of therapy that worked for Jaimie was Integrated Learning Systems, or iLs, incorporated into her SPD OT. Most importantly was sticking to a regular Sensory Diet, including balancing out her nutritional needs, and maintaining her routines.

We also have A LOT of calendars in our house that we use to work Jaimie through upcoming events, pictured charts to work her through new tasks and stickers for EVERYTHING to put up on calendars. It’s amazing how little things like that make such a huge difference. When she knows something is going to happen and understands the steps involved, she handles it so much better.

4) What did you try that didn't work?

Play Therapy worked with helping Jaimie learn to use play as a way to communicate because for the longest time, she wouldn’t communicate with us at all. She didn’t even try speaking until she was way over three. We realized later on that was because communicating with us meant we had to do it back to her and she wasn’t always able to handle that interaction. But after a year, it stopped working. It was because there was no focus on her SPD needs.

In home therapy was great with initial assessments and stuff but that wasn’t the right choice for Jaimie. There was no separation from her therapy and her safe place, you know? Once we chose therapy outside of our home she was much more receptive to practicing her Sensory Diet.

Psychiatric therapy and drug therapy were suggested right off the bat. Of course, they were just focusing on her behaviors, not the underlying causes of those behaviors. We were told to put Jaimie on anti-anxiety and anti-depressants when she was only three years old! We aren’t ‘anti-drug’ and know that it works with some kiddos who have additional problems but we refused to use drugs for a disorder when we had no idea how those drugs would affect her nervous system. We filed such treatments as a last resort after trying other holistic approaches.

‘Sterile’ therapies where Jaimie had to be in a hospital environment or ‘observed’ by several professionals all at the same time didn’t work either. Jaimie reacted best to one person in a warm environment working with what she was comfortable with then slowly introducing her to new things.

5) What were some reactions by doctors and professionals to the sensory problems?

This is a great question. In the beginning, all we wanted was for someone to just listen to our concerns, tell us what was going on then put us in the direction to figure out how to help Jaimie. But people weren’t understanding our concerns. We were told that she was ‘just spirited’ or ‘testing her boundaries’ and that everything would work out. It never did. It wasn’t until Jaimie had a sensory meltdown so severe that she injured herself, me and her baby sister at the time (not purposely but when you’re throwing yourself around with your eyes screwed shut and screaming, you don’t look around you.) that our pediatrician finally got on board with us. He’s an amazing doctor, very supportive (now) but it was a long, frustrating road.

After her initial assessment by an occupational therapist (OT), we were guided to a local community resource. At first she dealt mainly with a Play Therapist but the psychiatrist who headed Jaimie’s case was very “pro-drugs” and tried convincing us to consider drug therapy. We wouldn’t. She diagnosed Jaimie with severe anxiety (Separation, General, Social anxiety and obsessive-compulsive disorder, OCD) stressing that for a child with her level of anxiety, she needed help in order to focus on the therapy at hand. We kept refusing.

After a couple more years, we found out about a fantastic SPD clinic here in our city (YAY!) and decided we were going that route. The psychiatrist wasn’t happy about our choice. She felt that Jaimie’s anxiety hadn’t gone away the entire time she’d been at the clinic and that if we ignored her anxieties, she’d only end up getting worse. Her exact words to us were, “Jaimie has severe anxiety, Chynna. Yes, she has sensory issues and the anxiety and those issues seem to work hand-in-hand—each one affecting and intensifying the other. But those SPD OTs only see the child through sensory lenses—everything is because of SPD. At some point, you will both have to realize that your child has a mental illness and that you need to get her proper care. Just be open-minded to drug therapy.”

Let’s just say that was the last session we had there. The point of me sharing that with you is that parents need to see their child as a whole and be sure that whoever treats their child sees her as a whole. If you don’t meet every angle of your child, she isn’t going to thrive. Once we ‘got’ that Jaimie had SPD but also needed help with her nutritional needs and anxiety at the same time, we focused on all areas and she started doing much better.

6) What should somebody do if they think their kid or themselves have Sensory Processing Disorder?

The first thing to do is write down everything—symptoms, triggers, what calms the child (or themselves)…everything. Then research places in his area who deal specifically with people who have sensory sensitivities or SPD. If you have trouble finding someone in your area, visit the American Occupational Therapy Association (www.aota.org) or the Canadian Association of Occupational Therapists (www.caot.ca) or even the SPD Foundation (www.spdfoundation.net) to find someone. It’s very important to find an OT who is specifically trained, for years preferably, with people who have sensory issues. If you’re looking for your child, find a person who has experience dealing with children or focuses mainly on pediatric OT.

Once you figure out your child’s, or your own, specific needs things can start getting better.

7) Do you have any other tips that could make life easier on someone dealing with sensory processing issues?

Even with therapy and the Sensory Diet in place it can still be a trying time helping our child cope with SPD. Basically, patience is key. Go with what works at a given time then change things up a bit when you notice your child isn’t using the same tools or exercises. My good friend, Lori, tells me to watch Jaimie with ‘sensory glasses’ on. That’s how you can tell when something sensory is going on that needs action or when she’s just being a grumpy seven-year old testing her boundaries. Because above all else Jaimie is just a little girl.

Parents, or adults with sensory issues, would do great connecting with other parents. That helps ease feelings of isolation or frustration. Sometimes just talking to someone who understands what you’re going through—whether on the phone or online—can be enough to make you feel better.

You can find Chynna's blog at http://lilywolfwords.blogspot.com/

I received a copy of the book to review, but also one to giveaway!

To enter, tell me anything about sensory processing problems. (whether it be a tip, an experience with your own child/you, a statistic, quote from a site, etc...)

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Residents of U.S. and Canada are welcome; winner will be picked on noon March 1st, 2010.