My Daughter’s Non-Disorder Sensory Processing Disorder

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 finally got me to Children’s Hospital in Denver to get AJ assessed – someone else entirely!)

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 six sub types of SPD. The one that applies to AJ is the following, sensory defensiveness:

“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 check up. 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 and sill weighted about 200 pounds, with 60 more to lose. 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 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 and then weighed again holding a flayling 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 sucking as a mom.

But, wouldn’t this been a great time to have given AJ some sort of screening?? — and give us both the help we needed? Instead, I believed that I sucked as a mother. 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 defensiveness. (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

I wonder if AJ’s anxiety comes from SPD. I’m sure I’ll find out soon.

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
Time Magazine article “The Next Attention Deficit Disorder?”
Hartley’s Life With 3 Boys
SPD Blogger Network
from Simple Kids “Holistic Help for the Special Needs Child

QUESTIONS FOR YOU

Have you experienced SPD in your life? How so?

Do you have any advice that will help me in this process?

UPDATE

Yes, my daughter has SPD and it causes her anxiety. Read more here: Anxiety & It’s Connection to SPD

6/2013: SPD still not in the DSM.

  • http://www.brainhugger.com Brainhugger

    We didn’t figure out my daughter had SPD until 5th grade. But the good news is that OT and a ‘sensory diet’ at home made a huge difference for her. She’s much happier at home and at school.

    • http://imaginationsoup.net Melissa Taylor

      what’s a sensory diet?

  • http://kristiholmes.com Kristi

    There is another great book called “The Highly Sensitive Child” (I think). My son fits the SPD parameters but doesn’t have the diagnosis. I probably should have pursued that — but I didn’t, and at 15 he’s largely outgrown or compensated for most of the issues. Although he is still an extremely picky eater which drives me nuts some of the time! Best of luck in your journey with your daughter — I am sure you will find the best way to meet her needs!

    • http://imaginationsoup.net Melissa Taylor

      thanks, Kristi – I’ll look for that book. It’s encouraging to hear about your son finding strategies to do well in life! :)

  • http://bookdads.com Chris (@book_dads)

    Wow Melissa, thanks for sharing this. I feel for kids having issues related to sensory input. There’s clearly not enough information out there and definitely a lack of understanding about how debilitating this can be for kids. I wish you and your daughter the best in this struggle.

  • http://Www.laughingyogamam.blogspot.com Lisa

    My youngest also has spd. I was fortunate to have worked with many OTs so knew the symptoms. Even so, it’s been a long haul. Developmental changes and an unfortunate concussion cause symptoms to flare. And some things I think he can control, he really can’t and I can’t always figure out the difference.
    The sensory diet is the interventions you described doing with AJ. The thing to remember is that kids with spd will acclimate to a strategy and then it becomes ineffective. You have to rotate through or alternate them to keep them effective.
    The books you’re reading are great. There is also a monthly newsletter that is fabulous – S.I. Focus Magazine. Great insights and practical strategies.
    Please try to be gentle with yourself. We can only act on what we know and you didn’t know. Hang in there!

  • http://www.kidlutions.com/awards_winning_products.html Wendy Young, LMSW, BCD

    Melissa,

    Hugs! I had no idea. We have seen a number of kids in ECE settings with just this issue. Luckily, with an integrated team-approach, these kids be identified AND treated earlier.

    I do hope that you now know that your are NOT a sucky mother. And you also are not alone. Indeed!

    I know that you are daughter’s number one fan…and will also be her number one advocate. She’s lucky. You are seeking answers and, most importantly, HELP!

    Wendy @Kidlutions

    • http://imaginationsoup.net Melissa Taylor

      thanks, Wendy. I do have my sucky days though . . . :)

  • http://www.storybuildersbooks.com Carolyn Starks

    Thanks for sharing. My pediatrician gave us “Raising a High-Needs Baby” or something like that by Dr. Sears. Everything she told us about our 1-month old turned out to be essentially spot on. Our daughter is 8 now and we’re still having trouble in social situations. But this gives me hope and a kick in the butt to find out more about it.

  • http://PragmaticMom.com PragmaticMom

    Do you think something like yoga for kids would be good? Would it help to learn to relax? or biofeedback to relax? I don’t know if that helps at all… just thinking off the top of my head with no knowledge of this condition.

    • http://imaginationsoup.net Melissa Taylor

      theoretically – we have mats and a million dvds. Getting her to cooperate and try — not so much. She needs more movement anyway – so we have a trampoline and playset. I’m considering how to get a zipline in our backyard. Mostly because that just sound really fun for me. LOL.

    • Andrea Gardner

      I am an avid Yogi and I teach my kids meditation, but it is not always helpful for SPD kids. Many of them need active things (like the trampoline and zipline) They are seekers; looking to feel better and sometimes sitting still is literally painful for them.
      My son is getting better at using words with us (he is now 8) and he will say “BUT I can’t sit! i NEED to move or I will explode” This is not him being funny, but him being very serious in how e perceives his world and being.

      Thankfully I can get him to meditate on occasion. We are religious so incorporating Jesus into it helps him.

  • sarah Holdeman

    My oldest uses noise canceling headphones, a wiggle seat, and a foot block at school. We just wrote up a 504 plan to make sure these things continue as needed. She gets sensory breaks at school and I am going to push keyboarding this summer so she can use this next year to help with writing. We are 3 years in and the sensory issues come and go (I call it cycling). Feel free to call if you need any help or ideas.

    Sarah

    • http://imaginationsoup.net Melissa Taylor

      is the foot block for posture / handwriting? I’m going to call you b/c I need to come over and see what you’re already doing that works. Thanks, Sarah!

    • Andrea Gardner

      Ah! Noise Canceling headphones! They are a life saver for us!

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  • http://www.fortheloveofteaching.net Diane

    Wow Melissa. I’m glad you finally got an answer, just sorry it took so long. Thank you for sharing your story. I used to nanny a child with Rett Syndrome who had sensory processing disorder. I remember she was unable to calm herself down.
    You are an awesome parent…don’t ever doubt that. Get her on a 504 plan at school to make sure modifications stick if you need them.
    Take care,
    Diane

    • http://imaginationsoup.net Melissa Taylor

      thanks, you know how it is then!

  • Michelle

    Hi –just caught this post–I am an OT–I have worked mainly with rehab/neuro geriatrics and homecare but I will say I have a 2 year old with gross motor delays–mild but I picked up on them at around 8 months and had to convince the pediatrician at 15 months to get her assessed–I will say ALL the books you are reading are the best–I think the out of sync child has an activity book and may have a new book to come out. As far as Yoga goes I think it is great–I just started Yoga with Emmy—I see some issues–mild but I see them and just when I think I have a handle on her “sensitivites” she goes in a complete other direction with it ALL.I started yoga for overall balance, centering of self and she has mild postural insecurity–I did/do to start the yoga kids one–it has a white cover–my aplogies for not knowing the actual name but I got it from the library and it is the best I have found. I think the instructor is an OT–I have tried 6 different ones and I like her style and of her dvd’s the one with the white cover the best–I hope that helps. The best thing I can say is keep learning and help your child learn self awareness–that is my approach–keeping it simple–but I know EMmy is much younger. Best of luck– Michelle

    • http://imaginationsoup.net Melissa Taylor

      thanks, Michelle!!

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  • Linda

    Melissa,
    You are doing ALL the right things, there are no wrong things. It is a learning curve to find out what therapy helps, and where to invest your time & energy because having a SPD kid takes a lot of energy! I have done traditional and non-traditional interventions and you just have to follow your gut and your daughter. Some work and some don’t and you just keep doing what does. My daughter is 91/2 & I have been searching for answers since her PDD diagnosis (which I believe is SPD) almost 7 years ago. Best of luck & please FB me w/any questions.

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  • Deborah

    We’ve been there: And it’s so hard when you question yourself and everyone around you, including professionals makes you feel crazy. We are now in O/T and it is getting MUCH better. Although I started looking for help at her age 3, and didn’t get it ’til almost 7… Thanks for this post!!!

    • http://imaginationsoup.net Melissa Taylor

      thank YOU for commenting – and I’m so happy to hear things are much better. I really hope we can raise awareness of this so it doesn’t take other families so long to get help.

  • http://www.peanutsareevil.com Cara

    We’ve been there. My DS is 9 and we finally got a diagnosis in December after 4 long years. It’s a hard road, and glad we are finally getting help.

    Have you checked out the SPD Bloggers Network? It’s a wonderful resource http://www.spdbloggernetwork.com/

    • http://imaginationsoup.net Melissa Taylor

      oh, thank you, Cara – are you going to OT and doing things at home?

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  • http://getalonghome.com Cindy

    Totally with you on needing to raise awareness. I have a son with some SPD problems. However, I don’t thing the DSM is the place for it. This isn’t a psychiatric problem. It’s purely physical!

    • http://imaginationsoup.net Melissa Taylor

      I see what you’re saying but I think it’s neurological so it would apply to the DSM.
      Plus, I’m not sure how else our insurance system would begin to cover it. Right now, it’s the only way.

  • http://lastamericanchildhood.blogspot.com Rachel

    Wow–my friend Kristin Eno pointed me to your site because we (the three of us) have similar interests in reviving childhood play but I clicked first on this post. I can totally relate to the mystery of her behavior but can’t imagine the frustration of not having known for so long what was going on. We were baffled by our son but at age 2 had him evaluated only b/c my sister said we should get his hearing checked b/c he still didn’t answer to his name. His hearing was fine but he was pushed thru to all kinds of other evals and considered to have SPD but a different version — hypo-reactive rather than hyper-reactive like your daughter. But oddly I feel the same way – that I never got to snuggle him, or not until recently. It wasn’t that he couldn’t tolerate the touching but that he craved so much more input and couldn’t not move. I wrote about it a little on my blog here:
    http://lastamericanchildhood.blogspot.com/2010/06/here-are-bare-outlines-which-sound-at.html
    and here:
    http://lastamericanchildhood.blogspot.com/2010/07/in-many-ways-hes-very-low-maintenance.html

    Funny though people got annoyed w/ me for writing about it. Said I was making too big a deal about it.

  • Danielle N

    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.

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  • http://www.rainbowswithinreach.blogspot.com Debbie Clement

    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.

  • http://www.theintentionalparent.org Erin

    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!

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  • Hannah

    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!!!

    • Andrea Gardner

      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.

      • KB

        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!

    • http://imaginationsoup.net Melissa Taylor

      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.

  • Lupe Goodman

    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.

    • http://imaginationsoup.net Melissa Taylor

      Lupe, my heart goes out to you. I am so glad you found this post and it helped you when you needed. HUGS!

      Melissa

  • Rachel

    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!

    • http://imaginationsoup.net Melissa Taylor

      thanks for the recommendation, Rachel – I’ll check them out!

  • sarah

    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 :)

  • http://averageparent.com Rebeca @ The Average Parent

    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.

  • http://averageparent.com Rebeca @ The Average Parent

    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.

  • http://livinginkentucky.blogspot.com Laurke

    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.

    • http://imaginationsoup.net Melissa Taylor

      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.

  • Susan

    It is so frustrating that there is such a split of “believers” of SPD. I am a mother of two boys 8 & 9 . My 9 year old was diagnosed with SPD at 3 and received OT and I followed the suggestions in the Out of Sync Child. I did the brushing faithfully and am not sure it really made a difference for him. To this day he still has difficulty eating certain textures, but over all has made leaps and bounds of progress. Sadly his younger brother has been having a great deal of trouble with anger and mood swings. After pursuing bipolar disorder evaluations and anxiety issues, I finally tried the SPD route. He INSTANTLY responded in a HUGE positive way to brushing. He especially enjoys the joint compressions. He comes to me with his brush and asks me to brush him when he feels the need. I did a little research and found that they feel there may be a hereditary connection. I feel like a fool for not picking up on his needs sooner. I was so worried about the first child and helping him that I didn’t see the signs which manifested themselves a bit differently for child number 2. I know the sensory brushing and diet helped my first son and I see it helping the second child. Good luck to you and know how lucky your child is that you are looking into it!

  • http://www.onsgear.com Crystal

    I’m way behind in the times, because you wrote this over a year ago, but I clicked over from an SPD search and had to read through all the comments. Thanks for the book suggestions! I have an appointment to see an OT as I suspect SPD. Can’t believe I’m a newsletter subscriber of yours and had no idea the whole time I was reading your great ideas that we were both dealing with the same issues at home (my son is 5). Hope your daughter is doing well and that she has a great start to the new school year :)

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  • Jamie

    Hi, I saw a link to this on pinterest and I clicked on it because it sounded like how I feel, although I am 29. Have you heard of something like this in adults? I am just coming off anxiety meds (and feeling it all again) after being really sick in the spring. I have also wondered if childbirth was much higher sensory experience for me as I describe it in much stronger terms than other moms I have talked to.

    • http://imaginationsoup.net Melissa Taylor

      I’d guess that if it’s not treated in childhood, it would be with you as an adult. It sure sounds like it would be worth investigating, Jamie.

  • Franky

    Oh! I’m so happy to read this!! My daughter did the same thing with the scale for YEARS! It was a HUGE accomplishment when she finally was able to step on the scale without screeching. So few people seem to understand it and it can be quite embarrassing to the parent of a child who’s hysterical about standing on the scale in the waiting room. I have learned so much for her and am a much better advocate for her now. Also, I’ve learned not to worry what others think.

  • MamaMary

    I think she needs an animal – a sturdy animal to tolerate tantrums (a good dog) They are miracles for anyone with sensory issues… also – is there anyone who has investigated the difference between Autism and SPD?? This sounds SO much the same as high functioning Autism….

  • MamaMary

    One more suggestion – I’ve been reading a lot of mom blogs about cutting High fructose corn syrup out of their diets and seeing immediate change in disorders similar to your daughters… curious if that might make a difference for you… My good friend actually saw an almost complete reversal in her 8 yr old daughters terrets(sp) syndrome… she shows no symptoms now… worth a try anyways ;)

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  • Rachel

    Oh, I feel your pain. I am an occupational therapist and I have studied SPD since I started my career 18 years ago. Please feel free to contact me and let me give you some advice on how to proceed and what resources would might help. Benhen1@verizon.net

    • http://imaginationsoup.net Melissa Taylor

      thank you, so kind of you. We’re with a great OT and things are going very well.

  • Gigi

    As an educator, I can really relate to this article and appreciate you sharing your journey. I have observed students with the same types of behaviors and the parents are seeking answers. I love having this as a resource, thank you!

    • http://imaginationsoup.net Melissa Taylor

      thanks the the comment!

  • Mel25

    Wow what you just wrote was part of my life. As a child if things didnt feel right i would freak out i couldnt talk i just wanted it off of me. I hated hugs i hated being touched, only one person could my father. Now as a 26 year old adult i still hate hugs i have to give my self a pep talk for them, i live with someone that will just at any time hug me i use to fight it now i know it is better to block out the screaming from my body and asking nicely for them to stop. Its hard hugging my son, only one other person has been able to hug me but he knows the price it could mean getting hit or yelled at but like you he knew it was worth it. A few year ago i had to do that with my son or take a blanket and wrap him up and just hold him, i can still recall doing this to him as a baby he hated it from birth and would much rather just hang out. I was said to have ADD, my son is said to have ADHD i dont think its that for what you just wrote about is us. you have just opened so many door for my son and me. I hope you find answers to your many questions.

    • http://imaginationsoup.net Melissa Taylor

      those full body hugs / wrapping work for us, too! I wish you well on your journey. Hugs, Melissa

  • Fab4

    My child has/had SPD until we found Brain Balance. If you live in Colorado, I would highly recommend that you look into the program. It is truly the best thing we have ever done for our child.

    • http://imaginationsoup.net Melissa Taylor

      I have but we went with Children’s Hospital due to cost. Glad to hear it’s amazing!

  • Laura

    Thanks for this post. Talking about this can help other mothers. I believe my daughter has a light form of this. At her preschool I was given the name of a book your spirited child, which I didn’t read until she was older, when I couldn’t deal with her increasing fits. The book has helped a lot to finally understand that she can’t help it, she feel things at a higher level that we do. She was fussy as a child, hated certain types of clothing, is still a very picky eater, couldn’t transition easily, and smells and low noises would throw her off balance. I finally realized that it was a sensory problem when she was 9! Her issues have seriously undermined the relationship she and her brother could have had since he doesn’t “get” her and her behaviors drive him insane.

    The thing that helped me the most was with transitions, I give her plenty of warnings, I prepare her days before for any event that involves her.

    Thank you and good luck with your daughter. She is lucky to have you as a mother.

    • http://imaginationsoup.net Melissa Taylor

      thanks, Laura — right back at you. You’re a great mama!

  • Jennifer Fischer

    Sharing as I expect there are parents out there who could really appreciate this. Thanks for being so honest and open.

    • http://imaginationsoup.net Melissa Taylor

      I do hope it helps others!

  • Lenkaland

    Thank you for this article. We need to ask why? Why? Why? When a child has a behavior. As a society, we are quick to blame parenting instead of saying, “why?” It could have been a balance anxiety, too- those scales make me nervous because they wobble :). As a teacher, I know we tend to wait to see if maturity helps a child, which is why many children with invisible challenges are not diagnosed until 8-10. My big question as a mom and teacher is- “What can we do in the meantime? How can we hold this child so they don’t have baggage, and the family feels supported?” It is a big question! I look forward to more discussion :)

    • http://imaginationsoup.net Melissa Taylor

      brilliantly said!

  • Kate

    I can completely relate to everything in your article. My son is 9 and was diagnosed with ODD – oppositional deviance disorder at the age of 4. Then ADHD at aged 6. When a client told me about SPD and it sounded just like him. I took him to an OT who specializes in SPD. He really did improve and after 18 months the OT felt he was finished with OT. He is now in his 3rd grade at school and having extra reading lessons, extra writing lessons and has a full time tutor after school. I have just heard of a hearing treatment that helps to relax the tiniest muscle in the body which is in the ear. It is a series of faint sounds the child listens to via headphones once a day for two weeks. It sounds weird I know but I’ll try anything but hectic medication I don’t believe my son needs. Apparently after two weeks the muscle in the ear is able to ‘regulate’ the sounds the child hears and which before would cause a sensory overload. I’ll be finding out more and will post again. Teachers do not believe my son has ADHD and I know from watching him grow up and throw temper tantrum after temper tantrum and like you say ‘fall outs’ over normal things. I have often felt like the worst mother and felt very depressed over the whole situation. I don’t know what the answer is but I know this…there is no quick fix, and sadly no end to this. I feel that you constantly try to find something new to help your child along. Do what you can, do your best, forgive yourself and your child often.

  • Tania

    Thank you. We’re discovering very quickly in first grade my son has sensory processing issues. All through Kindergarten, he bit when overwhelmed. People and things. There are perfect rows of teeth marks on his blinds from being sent to his room. First grade is where it’s all hanging out though. The inability to sit at his desk and do seat work without a constant sensory input (A sea band! He presses his wrist against his desk, so the knob presses in.) from the commotion in the classroom. Putting him in a quieter area doesn’t help, either. For now, this works. It may change next month, it may change next year. We were fortunate enough to be blessed with a teacher for this year who recognized this in him, and knew how to help him.

    Reading about SPD explains so much. The delay in fine and gross motor skills, the speech delays, even his difficulty learning to read (blending sounds is awful for him). He is such a bright boy, and is so easily frustrated that he can’t just do it. It’s really hard trying to walk the fine line between having him feel like he fits in, but doing what has the most benefit to him while at school. Right now he thinks he’s super awesome because he gets iPad time for doing all his seat work in the time allotted. It’s the compromise we came up with with his teacher because he was feeling so left out when everyone else had free time because they were done.

    It’s small baby steps, but it’s so worth it in the end. You don’t suck as a mom. I don’t suck as a mom. We’re just doing the best we can with what we know.

    • http://imaginationsoup.net Melissa Taylor

      you’re right, we don’t suck! I’m glad you’re seeing baby steps of growth, that’s always encouraging. And that his teacher is so aware of his needs – that’s fantastic.
      Thanks, Tania!

  • Vanessa

    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.

  • http://www.organizewithjulie.blogspot.com/ juliebavi

    “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.

  • Evelyn

    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!

  • http://www.homeschool180.blogspot.com Christen

    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.

  • mommaof5

    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!

    • http://imaginationsoup.net Melissa Taylor

      that’s wonderful!

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  • Drowningmomma

    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.

    • http://imaginationsoup.net Melissa Taylor

      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!!