My Daughter’s Non-Disorder Sensory Processing Disorder
This post may contain affiliate links.
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
Finally I have found what I need from you. I am going to get all the books on your list and sign up for your blog and all the others mentioned. My oldest was diagnosed this year with vestibular and auditory SPD. I thank God that his first grade teacher knew exactly what was happening and encouraged us to get him evaluated. I have searched the internet for every bit of info on SPD and I felt so alone. Thank you for giving all of us this great forum and blog. I needed this so much.
Lupe, my heart goes out to you. I am so glad you found this post and it helped you when you needed. HUGS!
Melissa
hi-
I’m sorry that it took you so long for the diagnosis, but you’re one of the few sites that refers to SPD and an older child! I suspect my 10 yr old, 5th grade daughter has ‘mild’ SPD…she doesn’t fit ALL the symptoms, but there are many. All the books/sites give advice for younger kids: any tips for what to do at home and in the classroom that are age appropriate for a 10 yr old?? Any leads on books that refer to the elementary school student and SPD?
THANKS and good luck!!!
Hannah,
Is your child homeschooled? I have a 10 year old with suspected Aspbergers with SPD and my 8 year old has SPD, APD, and VPD with Dyslexia.
If your child is in school you need to demand evaluation for an IEP because things like wiggle seats are not allowed in the classroom without one since they are considered a “medical device” (so stupid, but you have to play by their rules)
As for at home, can you get your kid into Martial Arts or Gymnastics? These are 2 sports that are good for SPD kids. They are more individual as opposed to team and they help the body center. It isn’t a sudden fix, but it does help so much. My 10 yr old has been in gymnastics for 2 years and my 8 year old for just as long. Their coach/sensai know their issues (possible issues in eldest’s case) and work with me to help my kids. There are good days and bad, but in conjunction with OT these 2 activities are a must IMO! You just need to figure out which would be best for your kid.
Also, I am not one to promote use of medication unless it is a last resort. However, we have days that are unbearable (last week was one such time). I rely on Rescue Remedy. It is homeopathic and helps take the edge of anxiety. I use only the Kid’s version (even or me). When we are having a bad sensory day we all take it because their out bursts effect all of us.
We also use the term “engine” It is a visualization technique for mood. If your engine is high you are anxious and out of control. If it is low you need energy. When I see the signs coming I will say “Your engine is getting high. We need to get it to normal” and we work on it. It doesn’t always work but the consistent term is very important and the visualization of an engine helps them see what is normal and what is not.
I hope I helped a little bit.
As a public school teacher – I’m not sure where you heard wiggle seats are not allowed because they are a “medical” device and will not be used without an IEP. I have several kids in my class who use a wiggle seat all the time, a few more who sit on ball chairs instead of regular classroom chairs, etc. None of this requires an IEP. I am fortunate to have an occupational therapist in our building who suggests these things when I ask (without an IEP – just as a conversation between colleagues who are both invested in our students!). I love having a variety of seating options in my classroom; it benefits all students, and some use the different options more than others; some use them all the time. The same goes for different lighting/sound options, etc.
Parents: I’d encourage parents to not immediately “demand an IEP” as the above commenter advised. Yes, please do advocate for your children. But, please don’t either knee-jerk react and demand from administration. Talk to your childrens’ teachers first. Ask questions. See what they have tried in the classroom already. Maybe they have suggestions for you at home. Maybe you have suggestions for them at school! They want to help your kids learn and be as successful as possible. If you immediately go to administration (as demanding an IEP will do) you will miss a valuable co-advocate for your child. Maybe your child does actually need an IEP. That’s not going to happen without the classroom teacher trying and documenting other interventions first, anyway. Be on their side.
Teachers: No, I don’t teach in a wealthy district. My district is urban and high-poverty. (The occupational therapist I mentioned is in our building one half-day per week, so that’s not unusual, either – I just have made it a point to form a relationship with her and have her get to know my students whenever possible – even just passing by her in the hallway.) I have gotten a lot of my different sensory options from donations, grants, and from programs like Donors Choose. Check those out! You don’t always have to pay out of pocket for what your students need!
You are referring to the program “How does your engine run?” In case people want to look up more info on it.
ditto what Andrea said – can you do the brushing and joint compressions for a few weeks 4-5 x / day? It really makes a huge difference!!
Books:
anything by Dr. Lucy Jane Miller
The Out of Sync Child
See if your OT can help give you ideas, too – even if it’s billed under something else. Hopefully one day SPD will get into the DSM and it will be easier for us.
Thank you for this wonderful post! I think many of us with kids that are a bit… more challenging, are left feeling like bad parents when things that should be so easy, (like a well visit, or a simple errand) are huge stressful undertakings. Hearing other parents experiences are always so encouraging. I’m glad you finally have an answer, and their is a treatment, hopefully that will make it easier. Best of luck to you!
Having spent over a decade at a private center serving children such as you have described, my heart goes out to you — for the long wait in finding a suitable diagnosis and intervention.
I think all too often the pediatricians attempt to shush the parents over concerns. I had so hoped this was an issue of the past.
Your reading material will support your new journey. Now to forgive yourself (and those that failed to help you find earlier support) and move ahead with greater insight.
You will continue to be your child’s first and best advocate. Squeaky wheels and all of that. The school district doesn’t always welcome a newly zealous parent on a mission. Be steadfast in your resolve to find methods and interventions that support your child’s unique capabilities.
Wishing you the greatest progress in this next phase.
Strength and courage.
Strength and courage.
Strength and courage.
We**** (all of us) have so much to learn. May you continue to find others who can support you now — that you might support others on down the road.
This is an important message, but one that has very little awareness amongst non-special ed teachers. Here is a book that I have found really helpful as it has a lot of suggested activities:
http://www.goodreads.com/book/show/144501.Building_Bridges_Through_Sensory_Integration
Best of luck with this challenging job of mommying.