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.
Ideas for Kids Who Don’t Like Reading
Hi Melissa, I read what you wrote and felt like I may not be alone. My daughter is 6 she will be 7 next Friday. I have been struggling to figure out what is going on and still no answer. I had her tested at school and it came back she does not have a Sensory issue however; I am not sure they are right. Can you suggest who you had your daughter tested by? I am lost. I feel like I am doing circles. I did call the pediatrician and am waiting for a call back. My daughter will only wear one pair of pants, one pair of shoes and now these pants have two holes – we have sewn them and they reopened. I am about to cry I feel like I have failed but, now I am lost because the school things she is doing it for attention. I think she has something wrong – I am stuck between a rock and a hard place.
Oh, I’m so upset for you! II hope that you ignore what you know in your heart isn’t true — whether it’s comfort or control or whatever, it’s not the school’s job to judge, it’s their job to support! Sometimes it is hard to know, and that’s why we did therapy for 3 years before we figured it out.
My daughter was tested by an OT at our Children’s Hospital. They gave us a protocol of brushing and other things to do at home called a “sensory diet” — that’s one thing you can try because you might know if you see results. We saw a huge decrease in meltdowns, etc — although the clothing thing never got that much better honestly.
See if you can join a FB group or something online to get support from other parents — there are a lot of amazing people out there who are more than willing to help and share information.
Hang in there — keep taking it one day at a time. HUGS!
I really do understand your pain. My son is 20 now. I sensed the problem before even he is two. His Dr keeps telling me he is fine and passed her test. When he was three, I took him to the nearest school and they diagnosed and started to give him speech therapy. I didn’t know even the term or there is this kind of problem, but I described his great, and fine motor struggle, and his sensory issues. They told me he is fine. After a year, they told me he has a sensory deficiency and needs a therapy. He lost one year help. My point is, don’t take their words. Trust your gut and keep reading. You are his best therapist. My son still has issues, but what I did made a huge difference. Some of the things they said he will never able to do it, he is able to do it today.
I wish you and your daughter the best of all.
I work in the schools as an OT assistant and understand your frustration. Your doctor should be more help however it is often not the case. Even in school it is difficult to tell what is sensory processing and what is bad behavior (spoiled) and what lack of exposure to different environments. Therapists, doctors and psychologists hesitate to label children at such a young age and a lot of parents have difficulty accepting that there is a problem. If you feel there is a problem i would suggest you find a pediatric neurologist, as well as an Occupational therapist and get your child help with outside thearpy. Remember while in school, the school based O.T. Gives treatment for school related activities and rarely has a sensory gym that can benefit your child. Therapy inside school and outpatient therapy is ideal…keep in mind it is a long process.
I’m in tears. Sitting here reading as we travel this journey with our 8 year old. We’ve not yet seen a physician, but I need to figure out what to do. I’m planning to call a therapist tomorrow. We just had a major meltdown over dinner. Our mornings start with fighting over what to wear… it’s October, she can’t wear flip flops and her one comfortable pair of shorts much longer. Now I’m thinking back to my crying baby who didn’t like to be rocked, but relaxed once swaddled until she was ELEVEN months old. I knew it seemed so strange, but it worked for her, and I was thankful. Sweet baby girl. My heart is so heavy as I think back to all of the anxiety she’s felt over the past years and I was oblivious to help her.
It is SO hard — and some pediatricians won’t even know how to help so it requires a lot of work on our parts as parents. And patience. So much patience!
Sending you lots of love and hugs!
I’ve just started this journey with my 4 year old. Well, being diagnosed with SPD anyway. That moment on the scale…feeling like you suck as a mom. That’s been me for two years. I was brushed off by our primary doctor. One day he picked up a toy and threw it right at my face. That was it. I went to a child psychologist and in 5 mins of watching him interact she was confident it was SPD. We’re now in a path of waiting for referrals appointments to OT sessions can begin. My friends try but they have no idea how it feels, I tell them this or that happened, and they say they are sorry, but I need a friend so badly who understands. Someone to give tips and hints on what to try and do. I’m reading reading reading but I am feeling very overwhelmed and just want to help my baby. The glimpses we get of his loving, bright, personality are a reminder he’s in there…I just wish I could take away all his confusion and help him make it just one day without a huge blow up that often leaves us both in tears.
I can totally relate. And I think it’s hard to find the joy in parenting when your child behaves in ways that are challenging on top of the feelings of being lonely and misunderstood. The good thing is you’re not alone when you go online — there are many of us. We may not live next door to each other but we can be supportive from where ever we are in the world. Hugs to you, friend!!