My Daughter’s Non-Disorder Sensory Processing Disorder
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Apparently, AJ has tactile Sensory Processing Disorder (SPD). This news is good and bad. The more I learn about SPD, I feel like finally we’re getting to what’s going on with AJ. But I’m mad, too — because she’s nine! How did the pediatricians and teachers miss this diagnosis for so long? (And, just to be clear, neither her teachers or her doctor finally got me to try Children’s Hospital in Denver to get AJ assessed — it was a social worker.)
SPD = THE NON-DISORDER DISORDER
But, the pediatricians and teachers aren’t to blame really. No one knows about SPD – and, according to Dr. Lucy Jane Miller, the nation’s leading SPD expert, it’s laughable to most doctors. (Remember Western doctor’s opinion of Post Traumatic Stress Disorder a decade ago? )
No one knows about SPD because technically, SPD doesn’t exist – at least not until the American Psychiatric Association puts it into the Diagnostic and Statistical Manual (The DSM) and says it’s an actual disorder.
Okay, so how do you get in the DSM?
Miller says, “It’s political. He who has the strength, gets his way,” about the process of acceptance into the DSM, and admits she isn’t sure if the years of research she’s submitted from well-respected universities like Harvard, Yale, and MIT will count for anything. “Oprah. If we could get on Oprah, we’d get in,” she adds. “I’ve been doing this for 35 years and it makes no sense.”
WHAT IS SENSORY PROCESSING DISORDER?
Sensory Processing Disorder (formerly called Sensory Integration Dysfunction) is an umbrella term which covers a variety of neurological disabilities related to “the inability to use information received through the senses in order to function smoothly in daily life.” (The Out-of-Sync Child, Kranowitz.)
In 1972, A. Jean Ayres, Ph.D. O.T.R., published a book suggesting that sensory issues in children weren’t symptoms of other disorders but in fact, their own unique and unrecognized disorder.
Miller explains that we now know that there are different subtypes of SPD. The one that applies to AJ is sensory over responsiveness particularly with tactile but also with auditory, taste, and smell.
“Children who are over-responsive to sensation exhibit “sensory defensiveness” – an aversion to touch, sound, light, or other sensory input. Many of these children are fussy babies who grow into toddlers and grade schoolers who are anxious, have trouble making transitions, have frequent tantrums or meltdowns, and/or have difficulty in social situations.” (S.T.A.R. website)
SO, SHE ACTS LIKE THIS BECAUSE OF SPD?
Even as a baby, AJ didn’t like being held, rocked or cuddled. She flinched when hugged up until recently. The only time she fell asleep in someone’s arms, my husband’s, she was sick. I never got to rock her to sleep. Ever.
She’d have screaming tantrums with hair brushing, nail clipping, going to the doctor, and getting in her car seat. I was always envious of the moms who could run more than one errand — I had a two errand limit before total meltdown would happen. There were no exceptions. (I even cut her hair off after threatening . . . if you throw a fit one more time . . . and when one more time arrived, chop, chop.)
One of the worst experiences of my life was AJ’s three-year-old well-care checkup. It also was the beginning of the pediatrician missing things and me feeling like a total failure as a mother. The first part of the visit required AJ to get on the doctor’s scale and get weighed. AJ refused –crying and screaming. We were in a common area, not in a room so we had a nice large audience for this whole interaction. JJ had just been born, I was still wearing my velour maternity sweatpants and matching jacket.
I started out with my best parenting techniques (“Look, this will be fun! Mommy will show you. See?”) and slowly deteriorated to bribing (“I’ll buy you an ice cream”) and then to inventing consequences (“You will not get an ice cream!”)– nothing worked. It was a ONLY a scale! All she had to do was step on it for a few seconds.
AJ was so out of control that she started biting her arm. At this point, I was profusely sweating and about to cry. I had no idea what to do. Eventually, I got weighed by myself and then weighed again holding a flailing AJ. After more screaming and crying, we were sent home without even the basics of the well-care visit. I bought everyone that helped us Starbucks gift cards and resigned myself to being a failure as a mother.
But, wouldn’t this be a great time to have given AJ some sort of screening?? — and give us both the help we needed? Instead, I believed that her behavior was because I wasn’t a good parent. Now I wonder if any of it was in her or my control when her senses were that overstimulated.
I could go on and on with stories that I now can see as behaviors that indicated AJ’s sensory processing disorder. (Even chewing on her clothes and hair is a common behavior! I only learned this a few weeks ago!)
UNTREATED SPD
I’m still learning but apparently, there are some predictable consequences that happen when a child has SPD:
- poor fine motor skills
- poor social skills
- inflexible thinking
- lack of creativity
- difficulty with motor planning
Read more about how we’ve discovered a connection between AJ’s SPD and her anxiety.
TREATING SPD
Occupational Therapy — activities to help with proprioception, vestibular, tactile, auditory, visual, smelling and feeding.
I’m “brushing” AJ’s entire body with a plastic bristle brush. Also, I do joint compressions to help with low tone. (I think?) Also, we’re playing more with textured things, doing lots of movements like pushing, swinging, jumping – things we already do.
When the meltdowns occur, and they do, I give AJ a huge bear hug – sometimes wrap her up like a burrito in a blanket and hold her tight. It seems counter-intuitive but it really works!
WHAT I’M READING
The Out-of-Sync Child by Carol Stock Kranowitz, M.A.
Sensational Kids by Lucy Jane Miller
Raising a Sensory Smart Child by Lindsey Biel and Nancy Peske
Hartley’s Life With 3 Boys
SPD Blogger Network
Lemon Lime Adventures
QUESTIONS FOR YOU
Have you experienced SPD in your life? How so?
Do you have any advice that will help me in this process?
You Might Also Like
Anxiety & It’s Connection to SPD
6/2013: SPD still not in the DSM.
Ideas for Kids Who Don’t Like Reading
my son is 7.5 and I think he has spd, too. I first heard of sensory defensiveness and knew that was me…then the more I learned I realized he has spd, just not the same version as what I have. We don’t complement each other well! He loves to touch and I don’t. Anyway, I’m reading some of the same books you are, and wanted to add Too Loud, Too Bright, Too Fast Too Tight by Sharon Heller – she got sensory defensiveness as an adult and happened to be a psychologist, so its very insightful. More for me than for my son, though. I have him on a waiting list for an occupational therapists so we can get an accurate diagnosis and start therapy. As you say, its a mixed bag – good to know I’m not just a bad parent but hard to know that its something he’ll have his whole life, to some degree.
The title of that book perfectly captures the sensory issues my daughter has, thanks for the recommendation. Therapy has really helped her, I hope you get in to the OT soon. Thanks for sharing your story.
p.s. The Out of Sync Child Has Fun is also a great book…it is full of all kinds of activities and is broken down into categories so you can easily find what your child needs.
great post! Good for you for finally figuring it out. my son has sensory processing disorder as well. Luckily, his was identified very early (at 18 months) during a speech evaluation. But that doesn’t make it any easier to explain to people. I just tell them that when he’s in sync he’s fairly normal…when he’s out of sync, his behavior is a cross between ADHD and autism. He’s a sensory seeker, which for him, means he has to touch everything. He also craves deep pressure…so it’s not at all uncommon for him to literally run and bounce off the walls.
Our daughter fits all the descriptions for SPD without an actual diagnosis. We call the hug the “anaconda squeeze”. At age 6 her sensitivities are always evolving and improving. We are homeschooling with a wonderful school that places a huge importance on perceptual motor activities. She has low tone as well. Vestibular and auditory are where we focus a lot of attention. We got her a spooner board and she loves it. Really increased her confidence about her balance. Nice to see all of this support and recognition. Been a challenge when folks have just categorized her as “difficult”. I wish you the best. All our efforts are beginning to show in a girl that is more comfortable and confident in the world and so will yours 🙂
As a teacher, I see students with different SPD problems quite often, and my brother suffered mild forms of it while growing up. Although the books recommended here are ones I definitely want to read, something else that I’ve found that helps is a group called Little Giant Steps. They specialize in working with kids who have learning challenges like SPD, ADD, ADHD, dyslexia, etc. I worked for them for a year and a half awhile back and thoroughly enjoyed it – my college conflicted with my work schedule so I had to find a new job. I watched children, young and old go through the different exercises they recommend (several have been mentioned on here) and I’ve seen DRASTIC progress, with my brother and other kids with whom I worked. For anyone who is searching for another resource and help, they are worth at least checking out. http://www.littlegiantsteps.com/
I’m also happy to report that my brother made it through college and happily employed at his dream job – so there is hope out there!
thanks for the recommendation, Rachel – I’ll check them out!