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!)
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.
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?
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Anxiety & It’s Connection to SPD
6/2013: SPD still not in the DSM.
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My 18 year old daughter was diagnosed at age 2. I had been told by the doctors that she was just active, and not to compare her to my other children, all children develop at their own pace, right?!?! I am thankful everyday that I did not listen. I had her tested on my own through my states parent infant program, and luckily there was a physical therapist on the panel. This is not a requirement, she just happened to be filling in. She met my husband and I in the hall and told us she could get in trouble for telling us, but that she thought our daughter had sensory integration disorder and that we should have her tested at the local children’s hospital. She had noticed that whenever someone approached my daughter she would flinch and draw back, as if she were preparing herself to be touched. Because of this persons courage to approach us, we were able to start therapy when she was still young, the younger you begin the brushing and physical therapy the more successful they will be. As I said my daughter is 18, and thanks to early intervention unless I told you, you would not know she had any issue at all. I hate to think of where we would be today without that therapist!
My (10 year old) daughter has some sensory disorders as well. She has an auditory processing disorder (she cannot hear if there is background noise and she misinterprets what she does hear a lot of the time). I think her feelings are the opposite of your daughter. She seems to be understimulated with touch and she seeks out thrills like rollercoasters and sticking her head out a car window. You can pick her up, squeeze her, maneuver her and she just ignores you. Her tastes are the same- she likes things insanely spicy. But too much noise and she freaks out. My daughter also has dyspraxia which is like SPD- nobody in the US knows what it is and doctors scoff at it because it cannot be medicated. You might want to look into Dyspraxia as well as it is connected to low muscle tone and poor motor skills and balance.
I have SPD, and didn’t discover it until my son was diagnosed with Autism along with SPD…and that’s when I learned all about it, and realized that I had been dealing with it my entire life too! Ugh – what a relief though, to FINALLY have a diagnosis that made sense. Love and prayers for your daughter!
“The Everything Guide to SPD” was extremely helpful to me. It breaks things down into small easy to read chunks – so you still get a lot of knowledge even if you have a lot of interruptions.
You may also look into ABA (Applied Behavior Analysis or Behavioral therapies) to deal with the behaviors, anxiety and emotions of SPD. Our ABA therapist has been a God-send.
I found these books to help me with my son. The out of sync child ( explains the disorder and gives tons of information and supportive advice/ resources) by Carol Kranowitz and the out of sync child had fun (contains activities that may help develop skills). They have made a world of difference. Occupational therapy has really helped him.