Sunday, February 19, 2012

Sensory Processing Disorder...My amazing girl has it!

I've struggled with blogging about my daughter's newly diagnosed sensory processing disorder (there's controversary in whether it's even a "diagnosis" because it's not in the DSM, but I'll discuss that another day). I've wondered if it's exploitation. I've wondered what she'll think about what I've shared when she grows older and she reads my blog. I've wondered if I would be doing more harm than good by blogging about SPD and how it affects our family. But, ultimately, helping people is who I am and what I'm all about. I'm a social worker. Not only is it what I do, it's who I am. When faced with blended family issues and divorce and depression as a teenager, I began volunteering and helping others in similar circumstances. That was what first got me hooked on social work. When Taylor was diagnosed with food allergies, I quickly joined Kids With Food Allergies to get support and before long, I regularly shared our experience as a way to help others through their journey with food allergies. So, it just seems logical to me that I would blog about SPD as a way to not only process and record what we experience, but also to help other parents and families trying to manage SPD.

So, What is SPD?

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.


Looking back, I see several SPD symptoms that were present with Taylor as an infant and toddler. She had horrible sleeping patterns as an infant. I could talk for ages about how she never slept more than 20 minutes in the first 3 wks of her life. When she *did* sleep, she was either in our arms, or in her swing. She absolutely adored being carried in a sling. She lived in her sling. I think I would have gone insane if I didn't know about babywearing. She finally started sleeping for an hr to 2 hrs at a time after we watched The Happiest Baby on the Block. And we swaddled her and put her in her swing to sleep. By 3 months, Taylor was diagnosed with reflux, so we chalked all of this up to reflux. Now, I think it was a combination of SPD and reflux. She nursed for comfort and everytime she nursed, she played with my hair, often getting her fingers caught in my hair.

Once Taylor started solids, she stuffed herself with food. When she began drinking from a cup, she "chugged" her drinks. It was as though she didn't know how to drink slowly (she still does this). As a toddler, she was much more active than her playmates. When I introduced her to messy art, she could never get enough. I remember telling people that she never watched TV, even if I put on Sesame Street, she'd never be engaged enough to focus on it. Her favorite past-time was jumping on the couch. When we went to the playground, I could never push her high enough on the swing.

While developing appropriately, at age 2, she was still not sleeping through the night. She was still nursing and still using a pacifier for comfort. We often had to tell her "gentle" when playing with us, our animals and other children. These reminders to be gentle had little impact, even with us modelling appropriate touch. She could destroy a tidy and well-organized room within minutes of being in it. Remember, she got the nick-name Tornado Taylor. By this age, she had also worn a bald spot on the right side of her head from twirling her hair constantly.

Picking her up from preschool was a nightmare (still is a lot of days). She would fight and argue and throw tantrums and run from me. I used to think the teachers must have wondered if I abuse her and that's why she hated going home. She loved being at school and all the teachers adored her (still do!).

At about 2 1/2, she was able to tell me that her jeans were "bad" and they should go in "time out" because they "hurt" her. I've only been able to get her to wear denim a handful of times since then. It was also around this age that I would notice she chewed and sucked on the bottom of her shirt or the cuffs of her sleeves. When she was 3 I was concerned about her tantrums. She would get sooo incredibly upset, she'd often become physically aggressive toward me, and she'd kick walls and doors. I'd have to physically restrain her to keep her safe. I've had some training in how to do this safely, since I've worked with children who become violent.

It was also around this time that I really had to engage her in structured activities at home on the weekends in order to keep her "well behaved". I started doing more messy art activities with her. At the time I had no idea these were sensory activities. I thought we might be on the road to a diagnosis of ADHD because she was so active and continued to run circles around her peers.

When she was almost 4 I remember thinking "Are kids still teething at four because, man this kid sucks and chews on everything!". We found ourselves saying "If it's not food it doesn't go in your mouth!" several times a day.

And then...someone suggested I read Raising Your Spirited Child. WOW! That was a game changer for me. In reading that book, I found a new understanding of my daughter. I realized not only is she spirited, she also displayed a lot of sensory seeking behaviors.

In the midst of all this, we were still dealing with reflux, a new diagnosis of asthma and a few bouts of pneumonia. Taylor was also coughing while eating (and still "chugging" her drinks) which can be an indicator of swallowing issues. So, after our GI ordered several tests and procedures, we landed ourselves in an Occupational therapist's office for a feeding evaluation. I will feel forever indebted to the OT, Stacy who finally saw the same child that I saw. Stacy determined that Taylor's feeding issues were related to sensory issues.

Stacy commented on how cute and playful and smart Taylor is (she is all of those things!). But, within minutes, Stacy had turned the discussion from feeding issues to the behaviors she was seeing Taylor display in her office. Taylor was crawling on the floor on her hands and knees and spinning herself. She was bouncing on the therapy ball and climbing to reach a bin full of dried beans. Stacy started asking if I was seeing any sensory seeking behaviors at home. I immediately felt relieved and validated. I left with a greater understanding of my daughter, a list of heavy work activities, and a recommendation to read The Out of Sync Child.

Taylor's "sensory issues" had been confirmed. But, as I wrote about in this post, I wasn't considering a diagnosis of Sensory Processing Disorder at that point. It wasn't until she entered kindergarten that I became more concerned about her sensory issues.

Stay tuned for part 2 of our SPD journey later this week.


Amanda T said...

Thank you for blogging about this. We are just starting down the diagnosis path, but have done a lot of research and feel that both of our children have SPD and they have their first OT evaluations soon. I find it easier to talk about the food allergies that our kiddo has than the SPD - when speaking to others, they just don't seem to understand SPD. Sometimes I just want to scream, "Yes, SPD is a real thing!" Then, when these same people see my kids engaging in sensory seeking/avoiding behaviors, they ask "why do your kids act like that?" Ugh.

Crafty Mom said...

Thank you, Amanda! I'm happy to be raising awareness about this issue. There are so many different faces of SPD, so I'm only speaking for our family, but with that I hope to raise awareness and help other families on their journey, too.

Amy said...

It was great to find your blog tonight. Your daughter sounds so much like mine! I think I could have written your last blog post!
My DD is starting K in the fall and I have my own share of anxiety about how we are going to work that all out and how much her teachers are going to be willing to work with her!
I will be sure to come back and check on how things are going! :-)

Hazzard said...
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