What SPD Feels Like: 20 Statements to Help You Understand the Discomfort

I wrote this article because so many people have asked me how the disorders of SPD manifest themselves.  It is a complex set of conditions, so it's almost impossible to summarize.  To have a complete understanding of it requires much more reading (which I am hoping to summarize on this blog in future posts). Sensory Processing Disorders (or Dysfunctional Sensory Integration) are not easily identified; this sometimes makes it even more difficult for the child experiencing them, as the adults in their lives expect them to behave the same way as any other child. 

It is easy to want to remain in denial about your child having any difficulties at all. Who wants anything to do with “special needs”?  We want our children to be “normal”.   It is especially hard to hear someone else gently suggest that you pursue any avenues of diagnosis or evaluations.  The good news: early evaluation and therapy can make your child's life easier and less likely to need any special support in later school years.  If you take nothing else from this blog today, consider this:

If you're having any concerns at all about how your child is learning, developing, or behaving - seek out an evaluation for sensory processing disorder by an occupational therapist immediately.   Get over yourself, and wait no longer!  If there is any possibility that your child is experiencing any of these disorders, he could be SUFFERING and UNCOMFORTABLE.  You would be doing him a great disservice by sticking your head in the sand, hoping he will grow out of it.

When we are babies through about 5 or 6 years old, our brains are still like putty; we can mold them and shape them and re-teach them to learn skills with much less effort.  Each year that passes, it becomes more difficult for the brain to un-learn what it has already decided, and to re-learn new behaviors.   This is why, I cannot stress enough – early intervention is the key to your child’s success.  But please understand, if your child is older than five, it is not too late for your child to get the support he needs.

A child with Sensory Processing Disorders does not go through the day easily performing the tasks that we take for granted.  Your preschooler is not necessarily resisting putting on her clothes because she’s difficult and doesn’t want to comply; rather, she could be afraid that the lines in the socks will hurt her toes like they did yesterday.  Remember, SPD is the inability for the senses to correctly report input to the brain; therefore the response or resulting feeling may be inappropriate to what most people feel. The sensory input is disorganized and cannot produce purposeful motor output.

It is almost impossible for a toddler or preschooler to articulate what certain sensations feel like, because they just don’t have the life experience and vocabulary to do so.  Not all children with SPDs experience things the same way; it is subjective to what their particular disorders are, and what senses are involved.  Even more complicated, is the degree of discomfort varies from one child to the next. Most children with SPDs experience the sensations inconsistently; being able to tolerate something one day, but not the next.

Below are 20 statements, paraphrased from various books on this topic, quotes from children I know with SPD, or others whom reportedly have had Dysfunctional Sensory Integration.  These may help you understand what your child (or a child you may know) may go through on a day-to-day basis, though he may appear to be just a “normal”, rambunctious, or disobedient kid.   I warn you, it is difficult to read.

• I don’t want to put my pants on, the dragon is scary and [zipper] hurts me when he bites.
• The water from the shower nozzle feels like needles.
• The ceiling shadows look like monsters about to pounce.
• Brushing my teeth hurts.
• All food tastes the same, so I like to eat really spicy chili.
• When mom or dad ask me questions or give me instructions, they are screaming at me.
• When grandma hugs, I will lose my balance and get dizzy, so I won’t hug her.
• I can’t zip my jacket because I can’t feel which finger is touching the handle.
• If I don’t bump into things, I might not be able to tell where they are and I’ll fall down.  I don’t see them until they are already there.
• I want to kiss my baby sister, but when I do, I crash my head into her and hurt her because I can’t feel how hard I’m pressing.
• The sunshine gives me a headache.
• When I’m on a baby swing, I feel like I’m going to throw up.
• I spill my milk every day because I can’t feel how hard my hands are grasping the cup.
• I talk really loud to cover up all the noise from lights in the library.
• I ate four bowls of cereal this morning because I couldn’t tell that I was already full.
• When I ride my bike, it feels like there are black walls coming up every time I pass an object and I’m afraid I’ll fall off because I’m startled.
• I cry when I hear another toddler cry because I think I got hurt but I can’t feel it.
• Making a mud pie looks like fun, but I won’t touch it because the mud will probably sting.
• I can’t look you in the eye because there are a hundred other things in here that I have to look at.
• I know how to write the letter “B”, but when I try to put in on the paper my hands don’t do it.

In a book written by Stanley Greenspan, called "The Challenging Child ", Mr. Greenspan describes in adult terms how SPD might feel to us.  Below is an excerpt from his book in which he is able to articulate  how having one or more SPDs may be like:

"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."

This all sounds horrifying, I know.  Can you imagine having those feelings every day? It was very difficult for me to read about this.  But there’s good news! You may find more, but your child can get better.  There is no “cure”, per se; but he will adapt, with adaptive behaviors, and re-learning sensory regulation - through therapy, love, and patient, non-punitive parenting.  He can, and will, be more comfortable in his environment – and not always feel threatened by everything that crosses his path.  He will feel better about himself and his environment – provided he gets the help he needs.

To my own dismay, I waited until my son’s second birthday before having a speech evaluation for my child, even after the pediatrician prompted me at 18 months.  I just assumed that because my son was second-born and bilingual French-English, that he would develop his speech a little later.  But having him evaluated was the best thing we ever did.  We were lucky.  After finally having our school occupational therapist evaluate our son six months into his speech therapy, we determined that while his disorders are real, they are mild; and he can be helped greatly because of his young age.

Even after discovering his speech delay, my pediatrician - who is a star in his field - never picked up on anything else.  He is just not trained to do so, nor does he spend enough time with him to even suspect anything. This is often the case with pediatricians; and the reason that many parents dismiss any concerns they may have. Thankfully, after our school occupational therapist requested a written prescription for therapies - our pediatrician has been supportive. This may not be the case for you, so it's your job as a parent to be an advocate for your child.  If you're not satisfied with the answers you are getting from your child's doctor, seek another opinion - quickly.  Naturally, it is an emotional time for you if it is determined that your child needs some help.

So whom do you consult for an evaluation?  Your best bet is a certified occupational therapist, to start.   More specifics on how to proceed with evaluation will be addressed in another post, but one place to start is through your state, county, or school district organization.  A neuropsychologist can do a complete evaluation.  Easter Seals is another wonderful resource.

If you are still hesitant to consult someone, do some reading to get a better understanding of the disorders.   Read my first article, “12 Ways to Identify a Potential SPD in Your Child”.  Get a copy of this book: “The Sensory Sensitive Child”, written by two PhDs with SPDs: Karen A. Smith & Karen R. Gouze.


If your pediatrician is dismissive about your concerns, he or she may simply not be aware of what to look for, so you may have to do your own homework.  Some pediatricians are just not trained to look for disorders such as this, and may not know the criteria for diagnosing them. 

It's easier just to “wait and see”.  But the faster you begin therapies, the more likely your child will be able to be fully functioning, happy, and will be able to regulate his senses more purposefully. If you have your child evaluated it's concluded he doesn’t need any therapies, what have you lost? Nothing. Listen carefully to your instincts – they are usually correct.

12 Ways to Identify a Potential Sensory Processing Disorder (SPD) in Your Child

I'm sometimes puzzled, or even embarrassed about my child's unusual behavior. Mostly, he seems "normal".  I don't think there's anything wrong with him, but I'm not sure what to do about it.  

Do you ever feel this way? Explore the possibility that your instincts are correct - that your child may need your help.

What is Sensory Processing Disorder (SPD)?

Sensory Processing Disorder is, essentially, what it is named: difficulty or inability of the brain to effectively process the information obtained through the senses.  The disability manifests itself in different ways; some individuals experiencing over (hyper) sensitivity to some sensations, and others experience under-responsivity to sensory experience.  Ms. Carol Stock Kranowitz, M.A., author of “The Out-of-Sync Child”, defines SPD as not being one specific disorder; rather, an umbrella term to cover a variety of neurological disabilities.  Other commonly used names for SPD are Dysfunction of Sensory Integration (DSI), Sensory Integration Dysfunction, and Sensory Integration Disorder.
 

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, Revised Edition

The sensory input a person receives is generally through our five main senses: touch, taste, smell, sight, sound.  But there are two additional senses the brain uses for information that are affected by SPD:  the proprioceptive, which tells us what position our body is (sitting, standing, arms bent), and the vestibular, which helps us to know our place in relation to surroundings (to avoid walking into a pole approaching, or duck under a branch).

A child with SPD may experience sensory input differently.  An under-responsive child, for instance, may often crash or bump into things, or seek foods with more intense flavors, because a light touch or taste is not as detectable. Conversely, an over-responsive child may seek foods that are bland, or avoid touch or eye contact with others altogether, because it is too stimulating.  And, in the most complicated cases, a child may experience both under and over responsivity,  in inconsistent areas. 

The checklist below is in no way a means to diagnose SPD (sensory processing disorder) in your child.  It is merely a starting point to determine if - based on how you feel about the next 10 statements – it would be a good idea to do some more research and possibly have your child evaluated.  As is true with many conditions, the key to success in your child’s life is early intervention, so the time to act is NOW!  The earlier your child receives the supports he needs for this complex condition, the more likely he is able to overcome his obstacles and be a successfully functioning, happy child and adult.

Consider these 12 Statements.  My Child:

1. Often avoids touch or being touched by objects or people, including things like tags on clothing, hugs or kisses, and/or certain textures of food.  
2. Is no longer a baby, but often chews or mouths inappropriate items or toys ; like jackets, legos,  playdoh,  matchbox cars, doll’s limbs, and/or occasionally bites objects or people
3. Appears disturbed by participating in movements other children enjoy   – such as a see-saw,  swing;  or conversely,  wants to spin wildy on a swing or merry-go-round like ride, seemingly with no dizziness
4. Wants to play alone rather than with other children; or conversely, interacts inappropriately with new children- i.e., hugging, attempting to kiss, banging into, etc.
5. Frequently walks into things, trips, or doesn’t seem to notice people or objects when on a mission for a task.
6. Doesn’t speak clearly, speaks too loudly, too softly, or has speech delays
7. Loves to be tickled, squeezed, hugged, or seeks vigorous contact or activities, heavy work and stimulation
8. Parents often find themselves making excuses for unusual or idiosyncratic behavior (i.e., “she’s second-born, so she’s not speaking as clearly yet because her sister talks so much”, or “he’s  overtired, that’s why he doesn’t want to be at the party”
9. Covers ears or eyes to block out certain noises or sights, sometimes that appear to be inexplicable to others.  Has poor eye contact with others, even parents and loved ones.
10. Frequently Falls, bumps into things, spills, drops things, or appears a bit clumsy compared to other children his age.
11. Describes a place to be scary – seemingly a place where other children are content.
12. Seems overwhelmed by new tasks – such as dressing, using utensils, trying a new sport, etc.

If you’ve read through this checklist and find yourself nodding your head, or getting a nervous feeling – don’t be alarmed quite yet.  One or a few of these may apply to any child with average sensory processing abilities.  Some of us, even as adults, don’t like crowds, or perhaps we talk louder than the average person.  However, if more than a few of the above statements apply to your child consistently, and are troublesome or interfere with daily life in any way- I would recommend you at least have him or her evaluated. 

As a parent, (myself included), you may want to stick your head in the sand, and think your child will grow out of any conditions that appear to be “different” than their peers or siblings.  But if your child is experiencing sensory processing disorder, she could be significantly more uncomfortable in daily situations than you may realize.  A child with SPD will benefit greatly from therapies that are often provided by programs through your county or state if she qualifies.  Parents that choose to ignore SPD in their children could be doing them a great disservice for themselves and their child, resulting in their child’s poor self-esteem and future learning disabilities and/or depression.


It's important to mention that SPD is sometimes an independent condition. But often, it  is present with  with other disorders,  such as autism, or ADD/ADHD.  Just because your child may have a sensory integration disorder, does not mean that your child has autism; nor does a child with ADD necessarily have SPD.  And, if your child has SPD, it does not mean that he will have learning disabilities. These disabilities are all independent conditions; but may sometimes overlap.  Differences will be discussed in future articles.

Many school districts, county and state programs provide FREE testing and evaluation by wonderful professionals who handle a large spectrum of difficulties in young children.  I urge you to pursue this, as difficult as it may be – perhaps beginning with any speech delays you may notice.  This is how I got started with my child, and it was the best thing I could have ever done for him.  Had I not made an initial phone call to the county health department for the early intervention program for 2-1/2 year olds, I may never have known about SPD.  I am so grateful having this knowledge – and can see significant positive results in my own child from his therapies.  Be brave, and be an advocate for your sensational child!