Friday, March 19, 2010

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.

1 comment:

  1. What a wonderful way to bring into words we can all understand, the challenges kids face every day when they live with SPD. Your son is lucky to have you on his team.