Not Just Spirited: A Mom’s Sensational Journey with Sensory Processing Disorder

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[fbshare]Chynna Laird is a mother who documents her quest to solve the mystery of what is causing her baby daughter such distress. From birth, Chynna could tell that something was wrong with her new baby, Jaimie.

Unfortunately, since Jaimie was her first child, Chynna had no luck convincing the pediatrician that something was amiss. Even family and friends would say that Jaimie’s behavior was typical, but Chynna’s gut told her otherwise. In her book Not Just Spirited: A Mom’s Sensational Journey With Sensory Processing Disorder (SPD), Chynna reveals the process of uncovering that her child was more than just “spirited.”

The first three years of Jaimie’s life were fraught with fits, not tantrums, because as Chynna explained it “…’tantrums’ didn’t quite describe how serious they could be…” (p, 13).

Chynna put on her professional hat and realized that in order to get others to understand, she needed to keep track of Jaimie’s behavior. Record-keeping helped identify some troubling patterns in the areas of eating, eliminating, sleeping, playing, dressing, socializing, hurting herself, and communicating.

Chynna suspected something was wrong with Jaimie, but could not get anyone to listen. I asked Chynna what advice she would give to parents who suspect there is something going on with their child. She replied:

We had a tremendous amount of frustration in the beginning. All we wanted to do was understand what was going on with Jaimie but also know how to truly help her. That seems to be a common complaint with many caregivers starting out on their sensational journey.

I’m not sure that I can actually advise other caregivers on what to do because each of our situations is so different—that’s why it’s so important for us to share our individual stories. We can learn so much from one another. Here’s what I’ve learned:

• Watch your child. You can learn more about what’s going on with him than from any other source. Jaimie taught me a lot about how she felt, what she was afraid of and what she needed—even when she couldn’t verbally tell me.
• Make a record of everything. I talked about this in my book. Our physician wasn’t seeing what we were so I wrote down absolutely everything from Jaimie’s reactions to things to what triggered her most often to what seemed to calm her to what she ate/didn’t eat and more. Doing this not only helps caregivers figure things out but it gives doctors or therapists something to go with. Believe me, it can really help having all these things recorded and written down. For some reason it seems more ‘real’ that way.
• Stay calm. Before we understood what was going on with Jaimie, we found ourselves in a complete state of stress and anxiety. What’s so important is for caregivers to stay as calm as possible no matter what. I know how hard that can seem at times, especially when your child is in the throws of a sensory overload meltdown. I quickly figured out that Jaimie tended to absorb a lot of my own stress and anxiety. So things like taking deep breaths or doing some meditation or even leaving the room for a few minutes to pull back together are essential. OUR calmness can elicit THEIR calmness.
• Inform yourself. Learn everything you can about your child’s condition in general as well as your child’s specific form of it. Get the top books out there, tap into the fantastic online resources we have available to us now and, most importantly, listen to the pearls of wisdom your occupational therapist (OT) or other therapists give you. I didn’t truly understand Jaimie until she began therapy because not only was I learning about SPD but her OT was also teaching me what she was doing with Jaimie and why. What I also loved was how our OT talked to us about how a well-functioning nervous system worked (or specific sensory system) then what was going on in Jaimie’s body. This opened our eyes to understanding what input Jaimie needed, how much of it and at what times. Absorbing all this information is essential not only in being able to care for our kids but also so we can advocate for them (and teach them to advocate for themselves).
• Reach out. Let’s face it—raising a child with high needs can be very difficult at times. We can’t do it alone. In the beginning, I took care of Jaimie all by myself because it was easier for her. Her body was so out of whack that I was the only person she’d let do anything for her. That was tough! And it wasn’t good for any of us. Having a parent support group of some kind is so important. We can reach out to others who truly ‘get’ what we’re going through, you can bounce ideas/advice off one another and maybe get some new information you wouldn’t come across otherwise. Plus, if you find a support group close to you, you’ll have the added bonus of face-to-face chats and others you can reach out to for help. If there isn’t one close to you, why not create one?
• Get a complete diagnosis. Make sure that you find an OT or other therapist who can give your child a full assessment to rule out, or catch, other diagnoses if there are any. Otherwise you could end up only treating part of what’s going on. That happened to us with Jaimie when initially therapists were focusing only on her anxiety without digging for the true reasons for what was causing it.“

Chynna’s story documents her husband’s painful experience of having Jaimie reject him over and over again. Although it is easy to rationalize that Steve, her husband, should not take this behavior personally, it was obviously difficult to handle.

In the midst of all this chaos, Chynna discovered that she was pregnant for a second time. Having her new baby, Jordhan, confirmed to Chynna that something was definitely going on with Jaimie. Jordhan behaved exactly how Chynna knew a baby should and this refueled Chynna’s energy to get answers.

Chynna is eventually referred to early intervention and for the first time hears the words “Sensory Processing Disorder” from the occupational therapist (OT). The OT put a therapy program in place and in a few months positive changes were observed in Jaimie, such as  improved eye contact and an increased tolerance to some touch. Unfortunately, the progress was short-lived and Chynna was in search of help once again.

Jaimie was evaluated by a team of professionals including a psychiatrist, psychologist, social work, and OT. SPD was confirmed and at three-years of age, Jaimie started play therapy.

Chynna tried many therapies for Jaimie and I asked her what she thought was the most effective. Chynna provided:

Play Therapy and OT. We actually had to go a very specific route with Jaimie. Her nervous system was so out of whack that even us mentioning going somewhere or having someone over or her even thinking about it caused her tremendous anxiety. Again, we didn’t realize until we got her into OT how very affected she was! Every one of her sensory systems ranged from Moderate to Severe. No wonder she was always so upset, anxious and afraid of everything and everyone!

We started with having an OT come into our home to work with Jaimie. It took awhile but we found a wonderful lady she felt comfortable enough to work with her. They did a lot of sensory games and crafts, read books and other things. Unfortunately, we had to end sessions in our home because Jaimie had no ‘safe place’ anymore since therapy was done here. So we moved into Play Therapy. Her Play Therapist taught Jaimie how to communicate through play, toys and games and taught us how to as well. It was very profound in that Jaimie learned how to speak, say what she felt and what was on her mind. Once she achieved those things, we knew she’d feel safer interacting with an OT for sensory integration therapy. Again, we were so fortunate because Jaimie ‘clicked’ with her OT on the first day. And she worked with Jaimie using games and activities she loved as a way to tap into her sensory needs. For example, Jaimie’s most affected system is tactile. And what she really needed all of these years was deep pressure and weight to make her body feel calm. But her OT had to help Jaimie get past all the icky feelings she had about light touch to guide her to the heavier touch. I consider all of that time such a gift because she taught Jaimie to be more in tuned with her body, gave her methods to use when things made her body feel ‘bad’ and taught her the words to use to communicate what she needed to us.

It was a very long road but it’s what worked for Jaimie and it gave us a guiding light when our son, Xander, showed early signs of SPD too. Every step led to the next until we got where we needed to be. It just took one person to listen to us to put us on that first step.“

Jaimie eventually moved onto preschool and then kindergarten, both of which proved to be difficult. The school environment contained many components that added stress to Jaimie’s day. Chynna found herself having to pick Jaimie up early from school when she could not be calmed down enough to participate.

School continues to be tough, but Jaimie has made progress and continues to surprise everyone. I asked Chynna what continues to be Jaimie’s biggest obstacles and she shared:

You know, Jaimie is a miracle. She really is. This girl who not even a year ago was still afraid to face the unknown outside of our house is eating lunch at school, self-regulating, asking to try new things, teaching others about SPD and how it feels to her and she even went on her very first out-of-school field trip last month!

That being said, I’d say Jaimie still works a great deal on social interaction and her tactile issues. Her OT told us that the tactile system is usually the last one to become regulated, especially when they have been more severely affected such as in Jaimie’s case. But she’s coping so well. As for her social issues, I look at it this way: She spent her entire life focusing on what was going on her body, being afraid of those feelings and trying to control them. She literally avoided social situations because those were what always triggered her unpleasant reactions. But now that we’ve got a handle on those areas, she literally has to go back and learn the social stuff she’s always avoided. It’s cool though. I know she’ll be just fine.

There will be things she will always struggle with but I’ve taught her to use those things as a source of strength…to inspire her to move forward…rather than something that hinders her from trying.“

In conclusion, I asked Chynna what advice she would provide to parents of a child with SPD. Here is her response:

What’s funny is that I asked Dr. Lucy Miller this very same question last year (http://www.the-gift-blog.com/2010/08/transitional-tuesday-interview-with-dr.html). Of course, her advice to ‘sensational’ caregivers out there was much more powerful than any I could give. But from my own experience I’d say that aside from what I mentioned in the first question, do absolutely everything you can to get your child to where he needs to be. If you believe in your heart of hearts that something isn’t quite right, then do everything you can to get help—for you and for him. Don’t be afraid. The information you’ll be given will enable you to give your child everything is body needs to thrive. And you’ll be given the right tools to advocate for him and his needs so he’ll grow up being able to do it himself. That’s so powerful!

Finally what I always say is, ‘The Sensational Journey can be a long road with many hurdles to overcome. Be patient, stay strong, trust your heart and, most importantly, listen to your gut.’“

You can read more about SPD and Chynna at The Gift Blog. I want to give Chynna a big thank you for allowing me to review her book and participating in this interview!

Note: Chynna Laird provided me with a complimentary copy of her book in exchange for being featured on Help! S-O-S for Parents. The opinions expressed in this post are mine and have not been influenced in any way.