Seven Myths About Sensory Issues 9

By Bobbi Sheahan

I appreciate the opportunity to return to D.S. Walker’s site as a guest blogger! Today, I’m back to talk about Sensory Processing Disorder, which was formerly called Sensory Integration Dysfunction.

Our senses are what we humans use to perceive. In addition to our five senses of taste, touch, smell, hearing and vision, people also perceive temperature, balance, acceleration, proprioception/kinesthesis (where one’s body is in space), and pain. When any of these “senses” are calibrated differently from the norm, it is considered a sensory difference.  These differences can rise to the level of sensory dysfunction, which can be dangerous. For example, my child seemed, for years on end, to have no sense of smell and perception of pain. Before having my daughter, I’d never thought of pain as a good thing, but it is actually an extremely good thing; pain is a useful signal that tells us to stop doing something.

I recently had the privilege of speaking with Marla Roth-Fisch, author of Sensitive Sam and a Board Member of the Sensory Processing Disorder Foundation. She was very patient with my questions. I asked her all about sensory issues, and wow, did I learn a lot about sensory challenges! I’ll now share with you some basic misunderstandings about Sensory Processing Disorder that Marla and the SPD Foundation can help us to clear up.

Myth: Sensory issues are really discipline issues. 

Truth:   When a child is hypersensitive, you may think that he’s just being high-maintenance. If, on the other hand, your child is hyposensitive, you may feel as if you are parenting a human cannonball. Often, you may see a little of both. In either event, your child isn’t doing this on purpose to annoy you, even though it may feel that way. You may just think that Johnny is a picky eater, but the truth is, you can’t “solve” a sensitive child’s issue by continuing to irritate him further. His brain is processing information differently, and he needs some help to cope with that. As parents, we have to remember that we’re trying to help our kids to be able to function, not just trying to get them to be compliant in the moment. There are all sorts of things that we can do to help. For example, if a child has a sensitivity to certain types of clothing – maybe he doesn’t want to wear jeans or clothing with labels – there are clothing companies who make nothing but soft clothing, such as www.softclothing.netInstead of treating a sensory issue as a discipline issue, you might spend some time with a good Occupational Therapist, who can acquaint you with a sensory diet (it’s not about food – well, not JUST about food) and provide you with tools such as weighted blankets that can help your child to feel comfortable and adapt. These sorts of things can make a big difference, and I’ll bet you’ll see more pleasing  — and safe – behavior, too. As Marla Roth-Fisch explained to me, a child with SPD is special, not bad.

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Myth: For a sensory issue to be real, it should be consistent.
Truth:  Sensory issues can be very slippery!  Carol Kranowitz, in The Out of Sync Child, points out that kids can have sensory issues in one area (say, hearing or vestibular) but not another (auditory or smell for example). She also points out, “Sometimes the child will show characteristic of a dysfunction one day but not the next. For instance, the child with proprioceptive problems may trip over every bump in the pavement on Friday yet score every soccer goal on Saturday. Inconsistency is the hallmark of every neurological dysfunction.” At our house, we have a child who went from demanding dangerously-hot showers (she insisted that showers at a reasonable temperature were Cold Showers) to not really seeming to notice water temperature at all. She – and her mother — can also veer from agile to clumsy in a single bound.

Myth:  Sensory Processing Disorders are rare.
Truth:  According to the SPD Foundation, as many as one in twenty people deal with some sort of sensory integration issue. (This number may be even higher, and it appears to be on the rise.) Don’t like labels on clothes? Bugged by sounds that the person next to you doesn’t notice? Insensitive to pain? A bit of a klutz? Could be a sensory challenge. If it is, you aren’t alone. And you aren’t crazy or high-maintenance either. Sensory issues are real, and they are HUGE. Speaking for myself, I didn’t appreciate my own sensory processing differences until my daughter was diagnosed with autism. Like most kids with autism, she has a boatload of sensory differences –  although, interestingly enough, sensory issues aren’t part of the diagnostic criteria for autism. (I’ll restrain myself from digressing into that topic, but I’m tempted…)

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Myth:  There’s nothing you can do about sensory issues.
Truth:  There is more help available than you might realize! Good Occupational Therapy for SPD is fun, play-based, and family-centered. Another great jumping-off point is a lovely children’s book by Marla Roth-Fisch, called Sensitive Sam. I love this book for many reasons – the adorable illustrations, the great information, the fun rhyming format, the fact that my kid won’t give my copy back to me – but the thing that jumps out to me about the book is the fact that so many people – children and adults alike — can pick it up and have a lightbulb moment – “Hey, I do that! Thought I was the only one!” I think the word I’m looking for is accessible. It’s delightfully accessible. If we can be accepting and compassionate about our own sensory issues, we’re going to be in a much better position to help our kids understand theirs.

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Myth:  There’s nothing good about having sensory issues.
Truth:  There’s no doubt that having one’s senses calibrated differently is a challenge, but there is lots of help for the challenges, and there is an upside too. I call them Sensory Superpowers. My daughter and my husband, for example, have sensitive hearing, but it is coupled with an ability to hyperfocus, and I have seen them accomplish amazing things as a result. Find me a genius, and I’ll bet you’ve just found someone whose senses are very acute. 

Myth:  Kids will just outgrow their sensory issues.
Truth:  Maybe they will, and maybe they won’t. If a sensory issue rises to the level of interfering with daily enjoyment of life, this is where an Occupational Therapist can be a big help.

Myth:  I don’t have sensory issues.
Truth:  Okay, this one might be true. Maybe you do, and maybe you don’t. Gifted people, and those with autism and ADHD, are more frequently diagnosed with Sensory Processing Disorder. Lots and lots of people – including people with no other neurological or physical challenges or disabilities – have sensory sensitivities. For years, I’d say, “I have high pain tolerance,” or “I have a sense of smell like a dog,” and I did not realize that these were Sensory Superpowers.

More Resources:  Want to learn more about Sensory Processing Disorder? Lots of great resources are available at http://www.sensoryworld.com/ and Marla Roth-Fisch’s website is terrific:  http://www.sensitivesam.com/author/authorillustrator-marla-roth-fisch  Marla’s book, Sensitive Sam, and Dr. Lucy Jane Miller’s books, No More Secrets and Sensational Kids, are available from Future Horizons with a 15% discount plus free shipping when you use the checkout code BOBBI: . For a more in-depth look at the use of deep pressure, I also recommend to you an excellent article written almost twenty years ago by Temple Grandin, Ph.D., called Calming Effects of Deep Pressure in Children, College Students, and Animals, published in the Journal of Child and Adolescent Psychopharmacology, Volume 2, Number 1, 1992, Mary Ann Liebert, Inc., Publishers, which can be found here: http://www.grandin.com/inc/squeeze.html

Bobbi Sheahan is co-author of What I Wish I’d Known About Raising a Child With Autism; A Mom and a Therapist Offer Heartfelt Guidance for the First Five Years (Future Horizons, 2011). Portions of this article are excerpted from Chapter 3 of the book, which is available at www.fhautism.com and wherever books are sold. Bobbi is also the cohost of the internationally-broadcast Autism As They Grow radio show, which broadcasts live on Wednesday nights, 9:30 Eastern/6:30 Pacific/1:30 a.m. London/Dublin and is available in archives anytime at www.talkingspecialneeds.com.


Intriguing Last Minute Gift for the Booklover

Are you looking for a last-minute gift for the adventure lover, one that will arrive on time? How about an e-book?

I recently read Elise Stokes’ captivating YA novel, Cassidy Jones and the Secret Formula and fell in love with her family friendly characters. Think of Cassidy as a reserved, awkward, fourteen year old girl who is still trying to decide who she is and where she fits in the universe, while her outspoken friend, Miriam confronts bullies head-on causing Cassidy to fear for their lives.

When Cassidy tags along with her journalist father to interview a brilliant scientist, an accident gives Cassidy superpowers her comic fan, five-year-old brother would love, along with strength and speed her twin brother would admire. Yet, she finds herself unable to tell even her mom for fear of placing her family in danger after she learns that said scientist has vanished.

The story is only beginning as Cassidy soon figures out that she must learn to trust the scientist’s handsome, genius, teenage son and rely on him to help her find his mother so they can return her to normal. Oh, she also has to pretend nothing has changed while they conduct their investigation!

When I finished this short novel, I found I wanted to read more and luckily for me, Stokes completed her second novel in the series just in time for Christmas. Guess what I am giving myself for Christmas?

One last thing, those of you with children with sensory sensitivities will appreciate some of Cassidy’s superpowers like sensitive hearing, high pain tolerance, and an acute sense of smell.

If You Know About This Twitter Hashtag 4

#youmightbeanautismparentif, You might be an autism parent and even if you aren’t I hope you’ll keep reading and share the tweets on Twitter and share this post on Facebook, Google Plus, etc.

#youmightbeanautismparentif you miss those who decided to stop blogging.

#youmightbeanautismparentif your heart breaks for all the times your child has been misunderstood &/or mistreated.

#youmightbeanautismparentif you have been misunderstood too.

#youmightbeanautismparentif your wish for the future is a kinder, more understanding and supportive world.

#youmightbeanautismparentif you don’t have time for pettiness because you spend your time repairing damage done by misunderstandings & meanness.

#youmightbeanautismparentif your heart breaks because your child did not have support from family, friends or professionals until she was older.

#youmightbeanautismparentif your focus is on educating others so they avoid your mistakes.

#youmightbeanautismparent if you see sensory sensitivities and traits of autism in characters in novels and immediately recognize them as such.

#youmightbeanautismparentif you added more favorites to your Twitter profile in the last two weeks than in the last year including the following:

@spectrummymummy #youmightbeanautismparentif you’re doing the toughest, most rewarding job of your life- and you can never, ever go on #STRIKE.

@anne_barbano #youmightbeanautismparentif you have a beautiful singer in the house!

@spectrummymummy #youmightbeanautismparentif your child doesn’t just march to the beat of their own drum, they dance to their own symphony.

@fcsfinest #youmightbeanautismparentif you’ve felt like reciting this quote, “Autism is not a tragedy…ignorance is.”

@diaryofamom #youmightbeanautismparentif you know that autism is one word, but there is no one autism.

@diaryofamom #youmightbeanautismparentif the next person who tells you that God doesn’t give you more than you can handle might want to duck.

@bradsdad #youmightbeanautismparentif you think the world might be a better place if we all were more like our aspies!!

@AutisticSpeaks #youmightbeanautieif you wish people weren’t so hell-bent on curing you and would just let you be who you are!

@AutisticSpeaks #youmighbeanautieif “But you don’t look autistic” was old, like, the first time!

@outoutout #youmightbeanautieif You were frozen out of yet another ‘parent support group’ because you can’t fake NT if you tried. 😦

@SarahMPottratz @msoricel #youmightbeanaspieif #youmightbeanautismparentif you have learned the letters after the name don’t make them an expert.

@BobbiSheahan @manyhatsmommyMI @RaisingASDKids because they started the whole #youmightbeanautismparent thread and they deserve their own #ff for that! ❤

Join in the fun if you haven’t already! Those of you who are not parents of someone on the spectrum, but who still care to learn more can google all three.  People are continuing to add to them, so click on the links to learn more.

Mahalo to Jenny @manyhatsmommyMI who blogs at Many Hats Mommy for starting this and for creating a link for those who want to share the fun on their blogs and to Elise Ronan @RaisingASDKids who blogs at Raising Asperger’s Kids for creating the Twitter hashtag that has kept it going.

Does Special Needs Equal Medication Needs? 5

This post is part of Danette’s wonderful Best of the Best Series at S-O-S Research Blog where the topic this month is medication use related to those diagnosed with invisible special needs. I mentioned our bad experience with medications in my Therapy? What Therapy? in August, so you might assume I am totally against medication for this group. I am not.

Yet, I am against medications being the first choice especially for young children. First, you need a full workup to rule out alternative causes and to help assist in obtaining an accurate diagnosis. Yet, we have some psychiatrists who skip this step or who, if they do not completely skip it, still fail to order a complete evaluation prior to prescribing medication.

Unlike one of my fellow bloggers in this series, I do not believe the reason is for financial gain. Wonder why? I spent years working for various insurance companies, and even volunteering on legislative committees for case management organizations. I am also married to a physician. Doctors receive money as speakers, but they also go to extra training on medications and take time away from their practices to do this and most do not take prescribing new medications lightly either.

Remember it is their license on the line if a medication causes life threatening side effects. Doctors also pass on samples of medications to their patients who cannot afford them. I really want to write a post about when and why we stopped trusting any doctors, but that is a post for another day.

None of the medications prescribed for my child were samples, nor were they medications newly on the market, yet they still were unhelpful and inappropriate for her since they did not address the root of her problems, and in fact made things worse. Lack of understanding of her sensory sensitivities resulted in the wrong treatment.

I was given a check list to compare at one point to determine which diagnosis my daughter had, ADHD or Bipolar Disorder. I told both doctors that neither one really fit her, but they suggested I guess as to which one fit best. There is a reason I speak out about wrong diagnoses and especially wrong diagnoses in girls. No one even mentioned Asperger’s or autism at that point nor did they mention sensory sensitivities despite the fact that my daughter had text-book characteristics from the time she was a toddler, if the doctor listened and asked the right questions.

Once we had the correct diagnosis from a third doctor, who is a neuropsychologist and who did the complete evaluation, the psychiatrist asked me why I would want my child to have a diagnosis that no medication could treat. My reply, “Why would I want to treat her for something she does not have?”

Yes, medication can help some children as long as you have proper monitoring for side effects and as long as you have ruled out other medically researched options. Please note that many on the autism spectrum also have comorbidities that can be treated with medication. There are ongoing studies related to autism and sleep problems, so hopefully correct treatment options for this will be available too. I wrote about this in July on my Autism Myths, Legends, and Mysteries of Sleep post.

There are times when medication is appropriate, for instance when, there is a risk of harm to self or others. Even then it is important to monitor for side effects and to reevaluate once the patient is stable. Some medications can be safely weaned with medical supervision.