StorkNet interview with
Lindsey Biel, MA, OTR/L and Nancy Peske
Authors of
Raising a Sensory Smart Child
The Definitive Handbook for Helping Your Child with Sensory Integration Issues

Long thought to be a disorder that affects only autistic children, and a disorder that is often mistaken for ADHD, sensory integration dysfunction is finally being recognized as a separate condition. For parents of children with sensory integration issues, Lindsey Biel, M.A., OTR/L and Nancy Peske have written a groundbreaking book that will be an invaluable resource: RAISING A SENSORY SMART CHILD: The Definitive Handbook for Helping Your Child with Sensory Integration Issues (Penguin Original; on-sale date: February 22, 2005).

In just about any classroom, there's at least one child who is struggling with sensory issues. These are the kids that teachers and parents describe as "oversensitive," "picky," "clumsy," "spacy," "impulsive," "difficult," or even just "quirky." Children with SI dysfunction are those who have difficulty processing everyday sensations that most of us take for granted. Often, they're highly distractible and they tune out or act out when they're overstimulated. Their need for sensory input such as movement and touch can be so overpowering that they truly can't control their need to seek it out.

Each child has a unique experience with this confusing and sometimes exasperating condition. Raising a Sensory Smart Child helps parents understand what their child is going through--as well as how the seven (yes, seven!) senses work, and how to find an occupational therapist (OT) who is trained and experienced in helping kids with SI dysfunction who can help retrain the child's nervous system to work more adaptively.

The book addresses everyday behaviors from dealing with clothing and grooming sensitivities to getting children the sensory input they need to feel calm and organized. After reading Raising a Sensory Smart Child, parents and professionals will be able to spot common related developmental delays. Biel and Peske provide guidance on how to work together as a team with schools and therapists to help kids with sensory issues cope with the confusing sensations coming from within and outside of their bodies.

Some of the key topics covered in the book are:

  • Where to find an occupational therapist and how to get the best professional help
  • The importance of the "just right" challenge
  • "Sensory diet" activities that can be done every day to help
  • Practical solutions for everyday problems - from brushing hair to getting dressed or being in group situations
  • Why "sensory smarts" can be a huge help for children with learning and attention problems
  • Ways to advocate for your child at school and ways to make schools more "sensory smart"
  • How to empower your child and teen in the world
  • Complementary therapies, recommended resources, and helpful websites

Raising a Sensory Smart Child serves as an indispensable guide - as warm and accessible as it is authoritative and detailed.

ABOUT THE AUTHORS:
Lindsey Biel, MA, OTR/L is an occupational therapist specializing in pediatrics.

Nancy Peske is the coauthor of the Cinematherapy series. She lives in New York with her husband and son, who has sensory integration issues

We hope you will find our conversation with both authors helpful, supportive and interesting.

You are invited to visit their website: sensorysmarts.com

To Purchase online:

Authors Lindsey Biel, occupational therapist, and Nancy Peske, parent of a child with sensory integration dysfunction, have written the first practical, hands-on guide for parents of children with sensory problems and SI dysfunction: Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Integration Issues.

The authors explain:

Your brain uses information about sights, sounds, textures, smells, tastes, movement, and body position to help you form a complete, reliable picture of who you are, where you are, and what is happening around you.

For most of us, sensory integration occurs automatically. But for some children and adults, it happens inefficiently. They may have trouble figuring out what they are feeling, and how they should behave in response. A child may withdraw from distressing sensations—or seek out more of the sensation to find more about it. For example, a child who has difficulty tolerating certain tactile sensations may avoid experiences such as getting his hands and face messy while another may crave such sensory input and actively seek it out.

Sensory problems run from mild to severe. Some children simply have certain sensory preferences and intolerances--preferring the swings and avoiding the merry-go-round, needing to have clothing tags removed, disliking loud sounds, and so on. As a parent, you learn to tune in to and accommodate these likes and dislikes.

Raising a Sensory Smart Child offers loads of tips and techniques for meeting these needs while helping your child to become more sensory tolerant. The problem can be much more severe for other children, requiring much more in-depth help. The book will show you where to get the help you need, and what you can do to help your child at home, school, and in the community.

A warm welcome to Lindsey Biel, MA, OTR/L and Nancy Peske! And now to the questions and answers:

Alisa: My son has been diagnosed with SID. He has seen an OT for a fine motor delay and general sensory work. He is now in EI for a speech delay. What can I do to make schools more aware? He has a tremendous set of challenges, and the school system says he doesn't qualify for their services.

Nancy Peske: Dear Alisa, we have talked to many, many parents about this challenge, and really sympathize with you. It's very hard to see your child struggle with real issues and yet be told he doesn't qualify for services. You do have the option of appealing the school system's decision, and you would need to find out how this process works in your school system. Two great online resources about your legal rights are www.wrightslaw.com and www.copaa.org. You can also look into hiring therapists on a private basis, checking out your health insurance coverage for possible reimbursement.

Meanwhile you can start implementing some school-based sensory smart techniques like those you'll find in our book. Many schools are not aware of the concept of sensory issues and teachers may become defensive when they hear about it because they don't want a parent telling them how to do their job. In our book, we talk about the delicate art of approaching teachers to help them get over any defensiveness and work with you to find solutions. Often, they're not aware of how simple, cheap, and convenient these very effective accommodations can be. Of course, if you are already working with a sensory smart OT, we suggest you have her approach the teacher, professional to professional, to help the school accommodate your child's needs. Short breaks for movement, fidget toys such as Koosh balls to give input that helps kids stay focused, an inflatable, bumpy cushion to sit on, and so on are easy to implement.

Then too, if your child is getting OT and a sensory diet at this early age, you might be surprised at the progress he makes between now and kindergarten.

Best wishes,
Nancy Peske, Parent

Linda: I'm so excited to see this topic at StorkNet! I've done a bit of reading and it describes/explains some of the struggles I had as a child, particularly with food. There are some sensations I still struggle with now at 42. I have a 14-year-old son with an atrocious diet! Nothing I do makes any difference. He's just put off by so many foods that I don't even know where to start! I feel so lost, especially because I know how he feels. I've mentioned SID to both my family doctor and a psychiatrist. Neither knew what I was talking about! We're seeing a registered dietitian next week and I hope to gain some insight there. I'd be interested to know how much SID affects diet and eating habits. I'm wracked with guilt over this, but I really don't know what to do. Like I said, this is the only thing that's made sense to me so far, but I don't have nearly enough information. Thank you very much! Linda

PS: He was diagnosed as borderline ADHD when he was 7.

Nancy Peske: Linda, as a parent with her own set of sensory issues, you are the very best ally your son could have since you know firsthand just how much he is struggling. This is all "uncharted territory" and it's especially confusing when doctors have no idea of what you're talking about!

While our book discusses picky eating and nutrition, we think it's great that you're going to consult a registered dietitian about your teenager's eating habits. A good nutritionist or dietitian can give you insight and ideas tailored to the individual, so we think any time a child is a picky eater, it's wise to consult one. Keep in mind, though, that this professional may not be familiar with sensory issues. Make sure that she or he is respectful of your child's very real aversions to certain tastes, smells, and textures, and will help you and your child to find foods that don't offend his senses.

Eating is such a sensory experience that it's no wonder it's a challenge for so many kids with SI dysfunction. You may need to consider not only the taste and texture of the food, but also how it smells - a child may need to eat in a room far away from the cooking smells, for instance. Foods of certain colors or shapes may repulse them. If you can look at what he does eat, and what those foods have in common, it'll be easier to find foods that he's willing to try.

At age 14, eating issues can start to cramp his style socially, so he may be willing to work on his eating, as long as he has a sense of control over it. A great way to expand his diet might be to involve him in the food preparation, from picking fruit to growing vegetables and herbs to cooking.

Best of luck!
Nancy Peske, Parent

Kay: Lindsey and Nancy, I wish your book had been available 20 years ago. My son, who is older now, tore out all of his tags in his clothing when he was little. He refused to wear certain shirts and pants because they "felt funny." He hated being "buckled in" on rides at amusement parks. We just went with it and assumed that this was part of his ADD. I'll pick up your book so that I can reflect and better understand what this was about. I had no idea that this was so common!

Nancy Peske: Kay, so many people are averse to tags in their clothing that Hanes now makes tag-free underwear! It's a shame that while sensory integration dysfunction was first identified in the early 1970's by A. Jean Ayres, it is only now starting to be recognized by the medical community, schools, and the general public.

Please note that sensory issues often go hand in hand with ADHD, or sometimes are even mistaken for ADHD because the symptoms can be so similar. In our book, we talk about learning and organizational issues, which children with SI dysfunction, just like children with ADHD, commonly struggle with.

We hope you'll enjoy the book and get even more insights into your son!

Nancy Peske, Parent

Heather: My daughter just passed her one-year speech evaluation. She is no longer receiving speech therapy. How do I keep her development going on the right path?

Also, my daughter with sensory problems is just not doing well with the toilet. I have tried everything in your book at one time or another. She will change her own diapers, though. I am not kidding - wiping and everything. She will be three in July and moving into a preschool class with children who are mostly potty trained. She is scared of the regular toilet and I got her a little one with a favorite cartoon character. The daycare will not allow one to be brought; they have normal size but lower to the ground toilets. So, two questions:

1) I have had her sit on her potty many times. I have even had her sit when her big sister was going so she saw what to do. She thinks you just sit and wipe when you get sick of sitting there. What do I do?

2) How is it possible to potty train her when the daycare will not let me bring in what she needs and only has a big potty she is scared of? They know of her issues and still refuse. By the way, this is a Head Start which reserves 10% of their spots for special needs children.

Nancy and Lindsey: Heather, children with sensory issues quite frequently experience developmental delays, and you are wise to be on the look-out for them. Watch how she is developing in relation to her peers, and if you are at all concerned, do not hesitate to ask for a re-evaluation. In the best of all possible worlds, your Head Start Program will be watching her development very carefully. Meanwhile, our website, www.sensorysmarts.com has links to great books, toys, and developmental resources that you may find very helpful.

Now for the potty issue. Children with sensory issues are often late to train, even the girls, because they easily miss the signals that they have to go, or they are upset by some sensory aspect of peeing on the potty. Of course, some lucky parents have toddlers who are so averse to diapers that they will train early just to get out of them!

At home, you might focus on getting her to drink lots of water and juice and continue to seat her on the potty regularly. Also, introduce her to the concepts of "wet" and "dry". Have her wipe up spilled water, touch wet laundry and dry laundry, and talk about wet and dry. If you can hover over her and are willing to clean the rug if necessary, it might be good to take the diapers off and let her have accidents. (My own son poop trained after two poop accidents that upset him - he did not like that icky poop on his skin!) Also consider putting her in looser clothing, like little boxer shorts (they sell them at the Gap in small sizes) because sometimes the tight sensation of fitted underpants distracts the child from the sensation of having to go. Always try to avoid power struggles. Kids like to be in charge of their toileting, so encourage her as much as you can by using rewards and positive reinforcement.

It disturbs us that any preschool program, especially one that includes children with special needs, would not work with a parent on potty training. Don't give up on getting them to cooperate. Point out to them the section in our book on potty training, and approach the director with the attitude of, "We have a mutual problem we need to discuss, and I am hoping you can help me come up with some ideas," and you may meet with less resistance.

Good luck with this!
Nancy Peske, Parent and Lindsey Biel, OTR/L

Kimber: My son was a micro preemie who exhibits sensory integration dysfunction. He has been treated for it through occupational therapy but has not received an official diagnosis. When I talk to his pediatrician about it, he doesn't seem to understand it, therefore he won't diagnose it. I have taken him to a developmental specialist and when I said he had this issue, it literally went in one ear and out another. How important is it that I get an official diagnosis?

Lindsey Biel, OTR/L: Kimber, it can be unbelievably frustrating to get a response of incomprehension from someone you expect to be knowledgeable about your child. When all is said and done though, you're the true expert on your son. SI dysfunction isn't something a pediatrician can easily diagnose in a brief office visit, even if he or she is familiar with sensory issues. We would expect a developmental specialist to be very aware of SI dysfunction, and, frankly, it sounds as if he or she isn't listening to you, which is totally unacceptable. Even so, as long as your child's sensory issues are recognized and being handled, the official diagnosis is not terribly important. A more generic diagnosis such as "developmental delay" or "other health impaired" (often used in schools) is probably sufficient.

Best wishes,
Lindsey Biel, OTR/L

Robyn: My two-year-old daughter still cannot eat solid food. Otherwise, she is completely average or advanced for her age; she just has this one roadblock. She was very slow to take to any food other than breastmilk. She was close to a year before she was really eating anything. I never noticed it at the time, but looking back, I remember that she never really put toys in her mouth... at least not very far. She had reflux which she now seems to have finally outgrown, and we're pretty sure that's what caused her problems, but she can't seem to get rid of this gag reflex.

Her main difficulty remains biting and chewing. If she gets any solid food bits in her mouth, she used to gag and throw up, now she just spits it out. We have tried to model chewing for her. She is around lots of kids and sees them eat, but she just won't try. I'm almost to the point where I will just continue to mush her food up to baby-food and wait for time to hopefully make a difference, but I'm not sure that's the best approach either. It just doesn't seem normal to me that a two-year-old can't even eat a Cheerio! We have seen some OTs about this, but they weren't a lot of help. Most of their suggestions revolved around giving her food that she could mouth so she could desensitize her mouth (like pepperoni sticks, lollipops, twizzlers, etc,) but the difficulty lies in that she will NOT put stuff like that in her mouth. She will NOT try to chew. I am just out of ideas on how to get her to eat normally! Any and all ideas would be welcomed and appreciated! Thank you.

Lindsey Biel, OTR/L: Robyn, I am sure this has been really hard on both you and your daughter. It's dreadful to struggle with your child about something so basic as eating. We take it for granted how easy it is to bite, chew, and swallow, but it's sometimes very difficult for a child with sensory issues. It sounds as if your daughter has significant tactile defensiveness in and around her mouth. She also probably lacks the jaw strength to bite and chew. She may also be having trouble coordinating the 26 muscles it takes to swallow. You will need to find someone who has in-depth, specialized training in feeding issues. While a feeding specialist is typically a speech-language pathologist (SLP) or an occupational therapist (OT), not every OT or SLP has obtained this advanced training. Ask your pediatrician or your child's therapists to refer you to a feeding specialist. You could also contact your local hospital or university, or try entering "feeding clinic" or "feeding specialist" into a web browser such as Google.

Meanwhile, try to keep mealtimes as pleasant as possible to avoid having your daughter associate food with power struggles and hurt feelings. I know it's easier said than done! But it really sounds as if you've done your absolute best here and need some expert guidance and support.

Good luck!
Lindsey Biel, OTR/L

Hedra: I have two sons (7 and 3) who have various mild to moderate sensory integration issues (hyper or hypo sensitive in different areas of processing). We're doing a 'home sensory diet' as recommended by the OT, and will reassess my younger son in a few months (he's borderline for needing OT). In addition to those two, I also have twin daughters who are 5 months old. Is there anything I can/should do at this age that will help moderate or even prevent similar issues (basically 'catch' problems before they occur)?

Lindsey Biel, OTR/L: Dear Hedra, I can understand your concern regarding your twins, given your sons' issues. And while it's wise to be vigilant, try not to worry too much. If you have any concerns, have your daughters evaluated through early intervention. When you look back, you probably recall that your boys showed lots of signs early on. At five or six months old, Nancy's son didn't like to have his hair touched, drooled excessively, and seemed pretty oblivious to vaccinations and injuries. Other babies withdraw from cuddles (or are calm only when being held), crave movement (or dislike it), seem oversensitive to light, and so on. The general thought is to watch out for behavioral reactions that aren't in proportion with sensory experiences (the child becomes overstimulated easily or seems to not get stimulated enough). Chances are that you're becoming an extremely "sensory smart" mom because of your sons. As your daughters grow, you'll use those sensory smarts to recognize and satisfy their ongoing needs too.

Best of luck with your busy household!
Lindsey Biel, OTR/L

Circadia: Thank you for writing a book about such a misunderstood topic! I've ordered my copy and can't wait to dig in. Will there be explanations in the book that will help my pediatrician better understand this diagnosis? He is completely baffled by the things I try to explain to him! I honestly think he doesn't believe it exists, so we have been living in the dark here.

Lindsey Biel, OTR/L: Dear Circadia, we believe our book offers very clear explanations about sensory integration issues in a way both parents and professionals can appreciate. In addition to providing anecdotes about what sensory issues "look like" in a wide variety of children, from infants to young adults, we also included lots of scientific data about nervous system development, ongoing research studies, and references to peer-reviewed professional journals (many of which pediatricians already read). The feedback from pediatricians has been extremely positive. Somehow, having this information come to them in the form of a book rather than from the mouth of a concerned parent in their office provides the distance some health care professionals seem to need. So why not give a copy of our book to your pediatrician--and your in-laws, child's teachers, and others who interact with your child? And please feel free to send them to our website at www.sensorysmarts.com.

Of course there will always be those who poo-poo sensory issues as the result of permissive parenting or just the diagnosis du jour. However, more and more doctors, teachers, and others are coming to recognize that sensory issues are very real, and very significant for their patients, students, and loved ones.

Best regards,
Lindsey Biel, OTR/L

Joanna: My 4 year old son was recently diagnosed with PDD-NOS along with sensory issues. He has been working with an OT since he was 16 months old. He has motor planning issues. He loves to swing and is in constant motion. What is the difference between ADHD and Sensory Integration Disorder?

Lindsey Biel, OTR/L: Dear Joanna, labels can be so confusing! First you were probably told that your child had developmental delays, and then you heard about motor planning problems (dyspraxia), then you got the PDD-NOS label, and now you're wondering about attention and sensory issues. Many parents understandably resist labels because they seem to pigeonhole wonderful, multidimensional kids into tidy categories that have nothing to do with them as idiosyncratic individuals. And yet, labels can open up lots of doors for getting services, and can help explain some bewildering behaviors.

It can be extremely difficult to tell the difference between ADHD and SI dysfunction since many of the symptoms--poor focus, distractibility, impulsivity, and hyperactivity--overlap. It's awfully hard to attend to circle time if you're distressed with how your clothing feels or your eyes and ears hurt from the fluorescent lights. When a child is extremely active, it could be that he's seeking deep pressure and vestibular stimulation to calm and organize his body. And of course, a child may have both SI dysfunction and ADHD. The best way to begin to sort out what's what is to handle the sensory part first and see what's left. Once sensory needs are truly met, do the ADHD behaviors remain? Do the ADHD behaviors occur in more than one setting, which is part of the diagnostic criteria, or is it just at school or just at home? Regardless of the labels, the bottom line is, of course, getting to the heart of what's triggering your child, and how to meet his unique needs.

Lindsey Biel, OTR/L

Ink-stained Mom: I have a son who is very sensitive to noise and to large groups of people (particularly people he doesn't know well). Most of the time, it's pretty easy to deal with this, but going to church on Sundays has become a nightmare. He can't stand the music, he can't stand the crowd, people will try to talk to him or worse yet, shake his hand, and he'll throw a fit. Not going is not an option for our family, and we really love the church and the community we're in there. I've already stopped singing in the choir because my son can't stand being up in the choir loft with all the noise. Are there ways to help sensitize him to the specific stressors he knows he's going to encounter there? He just dreads walking up the sidewalk to the church.

Nancy Peske: Dear Ink-Stained Mom, attending a church service can be an excruciating experience for someone with severe sensory issues, particularly if he suffers from auditory sensitivities. He must tolerate the sound of many people singing or speaking in unison, squeaks as kneelers are pulled down or people stand up or sit down in wooden pews, an organ playing, and all of this sound echoing throughout the church. In fact, when we wrote our book, I interviewed a gentleman who is a devout Catholic who, much to his sorrow, came to the conclusion that he couldn't attend mass with his family because his auditory issues were so severe that the experience was too painful and upsetting. He talked to his priest and made the decision to listen to mass on the radio, which was far more tolerable.

For the auditory issues, you can try having your child use earplugs, which tend to cut higher frequency sounds as well as lowering the overall volume (you can still hear using earplugs). There are many different types available in drugstores or at www.theearplugstore.com. If he is having auditory sensitivities overall, speak with an occupational therapist, speech language pathologist, or audiologist about whether an auditory integration therapy might be right for your child.

Try to calm and focus him before attending the service, giving him deep pressure, having him listen to calming music, etc. This will help him deal with the overall stress of the experience. Sit on the end of a pew, in the back, so that he is less likely to get accidentally bumped exiting or entering with the crowd (often, children with sensory issues fear and dread this type of unexpected touch). Perhaps he could attend part of the service, and then you could take him out for an auditory break, and then bring him to the church's nursery or childcare if that is available.

If you are concerned about his missing out on spiritual teachings, speak to your minister or priest about what your options are. Remember, a child who cringes at the very sight of a church is not very likely to associate attending church with joy and spiritual uplift-and I'm sure that's not the outcome you want.

Nancy Peske, Parent

Cheryl: My son is 5 and will be starting Kindergarten in the fall. He has had speech therapy since he was 2. He's done great with that but he still has a communication delay. He has a hard time explaining himself, finding the right words, it takes him a long time to say something he could sum up in a few words. He goes to preschool where he still gets help. They mostly work with him on the W questions. He's doing pretty well with that, he still just has the other issue of explaining what he wants to say. His other sensory issues have come a long way. He isn't afraid to touch the gooey stuff in class, and he can now play in sand. Sometimes he still needs the headphones to silence the noise of the class though. He also won't wear tags or jeans because they feel funny.

What I most want to know is, how can I help him find words and explain himself better. I've been patiently giving him words when he's trying to talk. I am just always afraid of scaring him from talking at all! I'm afraid this will make it harder for him in Kindergarten. Thank you, Cheryl

Nancy Peske: Hi Cheryl! How great that you've already gotten help for your child's sensory issues and have already found some useful accommodations, such as removing clothing tags and providing headphones at school. It's amazing how many wonderfully simple accommodations there are that can make these kids' lives so much more pleasant!

It's common for kids with SI dysfunction to have speech problems. The key is to pinpoint exactly where the child's deficits are so that you can address them. A speech language pathologist (who will have an SLP-CCC after her name) is the best person for this task. If your son does not have a specific speech diagnosis, it might be a good idea to get one so that you and the therapists and teachers can all be on the same page about how to help him. What you are describing sounds to my layman's ears like a word retrieval problem (something my own son has). You can learn more about this on websites like www.cherab.org and www.speechville.com. Meanwhile, ask your son's speech therapist for specific recommendations about how you can best help encourage speaking at home.

Nancy Peske, Parent

Jacquelyn: I have just happened upon SID when I was searching for why my five year-old cannot stop pulling at her underwear. Her pediatrician could not find any physical reason, so she said it was behavioral. My daughter also had a problem with tags in her clothes around age three. She also started out biting her nails, and since trying to get her to stop, she now chews on the skin around her nails. She has always been an excitable girl that loves to her explore her surroundings, but she also easily gets bored and moves on to the next toy or activity. I do not know how much of these concerns may just be her being a child or there is an underlying issue. I would appreciate any insight you could give me.

Lindsey Biel, OTR/L: Hi Jacquelyn! Sensory issues run on a spectrum. Most people have some sensory preferences--they prefer a restaurant where there are good acoustics so it's easier to carry on a conversation, they enjoy soft clothing more than scratchy clothing, and so on. However, this is different from having sensory integration issues that interfere with the activities of daily living--work, play, sleeping, eating, etc. Kids who have SI dysfunction may be confused or bothered by the sensations coming from outside of their body (through the five senses you learned about in school) or inside of their body (through the proprioceptive sense, meaning the sense of body awareness, or the vestibular sense, meaning the sense of movement and position in relation to gravity). As a result, they will avoid sensations most people take for granted--such as tags in clothing--and seek out sensations they find pleasurable, calming, or focusing--such as movement.

If she is pulling at her underwear, ask her why it is uncomfortable. It might be that it is too tight, and she'd prefer boxer shorts or looser panties. If it is scratchy, you might buy underwear made from softer cotton (Land's End and Hanna Andersson make especially soft cotton clothing) and launder it several times (be careful about perfumed fabric softeners and detergent, which can be irritating to her skin or nose). Elastic that is not covered by fabric and lace are common irritants for children who have clothing sensitivities.

Nail biting, now transformed into cuticle biting, can be a nervous habit designed to reduce anxiety or it may indicate a need for oral stimulation. In either case, you can try to redirect this oral comforting behavior into something more acceptable. Offer her some sugarless chewing gum and provide crunchy and chewy foods to snack on. Look into some of the chewy toys available in therapy catalogs such as Integrations and Southpaw Enterprises--including chewable spiral necklaces and bracelets in a variety of colors known as Chewlery.

And while there's nothing wrong with having a high need for novelty and being curious, if her inability to focus results in problems socializing and learning, it's important to find ways to help her focus. You may want to have her evaluated by an occupational therapist to assess the role of sensory issues. The OT may recommend particular activities, techniques and accommodations that will help your daughter stick with an activity or toy for longer periods, which is so important for deep exploration and learning. Please see our web site www.sensorysmarts.com for sensory diet activities, and suggestions on how to find an OT in your area.

Good luck!
Lindsey Biel, OTR/L and Nancy Peske, Parent

Kristin: My 4 year old daughter has had sensory issues since she was born... i.e. doesn't like loud noises, will go off by herself or go to sleep if there are too many noises, screams when you try to comb her hair, etc. She is being seen by an OT who specializes in sensory therapy for both the sensory issues and fine and gross motor skills as well. Lately, we have discovered that the sensory issues seem to be leading into an OCD type behavior. When putting her into her car seat, if we pull her forward a bit or try to adjust her, she has to get out and get back in. We tested this and she got out eight times in a row once. She also cannot go to sleep unless her door is open a certain amount, all the dresser drawers are closed all the way, her juice cup is in a certain place (but can't be put back in that exact spot after she takes a sip), etc. Can this be related to the sensory issues, or is this completely separate? Not sure if we need to consult a child psychologist now too. Thanks!

ADVERTISEMENT
Nancy and Lindsey: Dear Kristin, it's great that your child is seeing an OT for her sensory issues. It is possible that the behavior you describe is simply due to a combination of her personality and the sensory issues, because children who are constantly bombarded by confusing sensory information are often comforted by taking control over their environment in little ways (the juice cup must be in a certain place, for example). However, it's also possible that she has OCD, or that she is rigid because she is on the autism spectrum and she's wired that way. It's important to consider whether you see this behavior more often in situations where she is under an unusual amount of stress--for example, she has just begun a new preschool program, you have house guests visiting, she's dealing with seasonal allergies, etc. If so, dealing with the underlying stressors as well as increasing her sensory diet activities to calm and focus her system so that she's more comfortable may have a significant effect on her rigid behaviors.

If you're concerned about OCD or autism, check with a developmental pediatrician, a pediatric neuropsychologist, or other health professional recommended by your regular pediatrician.

Best wishes,
Lindsey Biel, OTR/L and Nancy Peske, Parent

Tracey: My son has SI and is doing really well. He was a former 27 weeker. I'm pregnant with my third and wonder if there is anything I can do to prevent SI should I have another preemie. Thanks for all you do.

Lindsey Biel, OTR/L: Dear Tracey, congratulations on number three! We're glad to hear your son is doing well with treatment for SI dysfunction. As you probably know, it's so common for premature babies to have issues with sensory integration, especially those born youngest and tiniest, and especially during the first two years of life. Given your experiences with your son, it's only natural to be thinking about this. Should your third child be born prematurely, work with the NICU team to avoid overstimulation and to quickly learn what comforts your baby and what distresses your baby. Chances are you've become a much more "sensory smart" parent than you realize. Ask a NICU occupational or physical therapist or nurse to teach you how to massage your baby, position him or her best during feedings, and so on. Arrange for an early intervention evaluation immediately upon discharge if you have any concerns about your preemie baby's sensorimotor well-being. The hospital should provide you with contact information or go to our web site, www.sensorysmarts.com to find contact information on your state's early intervention program.

Warm wishes,
Lindsey Biel, OTR/L

Kathy: Our 3 year old son has sensory integration issues. We have had early intervention with OT, PT and speech since he was 2 weeks old. We now only have our speech therapist once a week. The problem is that we have no one in our area that specializes in sensory integration. We sent our speech therapist to some special classes in another state to help our son and others. Our son has Chiara Type I also. This week and saw a Neurosurgeon who says that Chiara has nothing to do with our son's speech or sensory issues; we still think differently. We also saw an OT who specializes in sensory integration and she said immediately that he has a lot of the sensory issues, tactile. Our speech therapist says he has apraxia with oral sensories. They both say that without the early intervention he has had, there is no telling where he would be. We thank God for all of this. We have an absolutely wonderful pediatrician who will send him or do whatever she can to help us. We need to have an OT somewhere close in our area and was wondering if you knew how we could go about finding someone somewhat close. A pediatric sensory integration OT would be even better. We just want to help our son reach his full God given potential. We have your book, bought one for our speech therapist and the OT. Thank you, the book really is a great help and helps us to explain it to others. You are right--people do not understand and they think all it is, is that we need to discipline him. Thank you so much.

Lindsey Biel, OTR/L: Dear Kathy, my heart aches for you; you've been struggling so to get your son the help he needs. I am so glad that you've found some answers and a pediatrician you like. I am certainly no expert on Arnold Chiari Malformation, but I think the connection is actually pretty clear. The cerebellum is a crucial structure in the brain, responsible for the timing, organization and coordination of all types of movement including the movements needed for speech. Research also suggests that the cerebellum may also act as a "volume" control for sensory input. So if your son has had any trauma to his cerebellum, it wouldn't be surprising to have speech and sensory problems.

Thank you so much for your kind words about our book. We do hope it helps parents like you find answers. A pediatric OT who is trained and experienced in working with kids who have sensory issues, motor planning difficulties, and physical disabilities (depending on what your son's current needs are) could probably help your son quite a lot. If you're unable to find a qualified OT through your school district (which provides OT services to children age 3 and over), or if your child doesn't qualify for services despite his obvious issues, you can try to find a private OT (and look into having the school system help foot the bill). To find a private OT, ask your pediatrician, your local children's hospital, and check your state's occupational therapy association (which you can find through the national website, www.aota.org). Developmental Delay Resources (www.devdelay.org) which has a member registry that includes qualified pediatric OTs across the country, but not necessarily in your particular geographic area.

My sincerest best wishes,
Lindsey Biel, OTR/L

Sherri: I am happy to see that such a book exists! For 8 years now, I've been convinced something was going on with my son, but no one would listen to me. His eating difficulties are the most obvious, but there are other issues such as tags in clothes, elastic in pants (nothing can touch his navel), and moderate issues at school with impulsivity and difficulty keeping his hands to himself. I'm so tired of being told that because he isn't anemic that he is getting everything he needs in his diet. He has about 9 food items. He's added one food in the past year. I try to explain that he isn't "picky". To be picky you have to at least TASTE the food. He won't put any food in his mouth other than what is on his list.

I am a nurse and I've had the opportunity to talk to pediatric OTs and nutritionists and no one understands what I'm talking about. It is very frustrating. I want to help my son, but no one seems to respect my opinion that he needs help. I'm ordering the book, but I would like to know about other resources when you live in an area where people are not aware of the problem. What can I do myself?

Nancy Peske: Thank you for your enthusiasm about our book, Raising a Sensory Smart Child. We hope youíll find it helpful. So many kids with sensory issues struggle with impulse control when their bodies are craving a particular type of sensory input, or feel uncomfortable in clothes that arenít just right. Weíve got lots of practical tips for home and away on those topics. Since he is touching other students in school and itís becoming a problem, you might give him some suggestions for what to do to get calming input that will make his body feel good. Pushups against the wall or while sitting in a chair (he can put his hands under his bottom and lift the weight of his body), or a spandex band stretched around his desk or chair legs, which he can push up against, might help him stop seeking input by pushing up against other children.

As a parent, I can totally sympathize with your frustration when you know there is something up with your child and well-meaning professionals are telling you not to be concerned. Indeed, limiting his foods to just nine items is not going to meet his full nutritional needs. A nutritionist Lindsey and I have consulted with, who is very experienced in working with kids with sensory issues, suggests that parents round out the nutritional needs of a picky eater by giving high-quality vitamin supplements while working on expanding his diet (her website, by the way, is www.kellydorfman.com). This will take some of the pressure off of you and actually help his system to work better. A nutritionist should be able to look at what he actually eats in the course of two days and give you some ideas about what heís missing nutritionally so youíll know what supplements to use.

From there, the challenge is to expand his diet. Often, giving a child this age some control is helpful. Let him participate in growing or preparing food. Give him a choice as to which vegetable he will try each night--that should be his assignment, actually putting a new food in his mouth and biting down. You may have to work up to this by familiarizing him with the food by serving it many times and allowing him to merely see it on his plate before graduating to touching it with his finger, touching it to his tongue, and then actually biting it. Consider using a reward system to help him, and talk to him about nutrition so he understands the importance of overcoming this challenge. Take out the unhealthy foods and serve the healthy foods he will eat two or three times a day if you have to. And donít try to starve him out; kids with sensory issues, who have tactile sensitivities in their mouths and strong aversions to tastes and smells, are not motivated by hunger. A power struggle will not help solve the problem in the long run.

Also, a diet like this is so limited that it might be a sign that he has gut issues, which is fairly common among kids with SI dysfunction. If heís limiting his foods to just wheat or grain-based foods like pasta, and/or just milk-based foods, he may be intolerant to gluten (found in grains) and/or casein (found in milk) and actually craving the very foods that are problematic for him because they actually have a drug-like, soothing effect. You might want to check www.gfcfdiet.org or Doris Rappís excellent book, Is This Your Child?, for more info. Iíve heard many cases of kids who, once their food intolerances were addressed, became open to eating a much greater variety of foods.

Good luck, and I hope youíll continue to listen to your Mommy instincts!
Nancy Peske, parent

Andrea: I have a 23 month old who seems (no matter how much stimulation I give him through daily stroller rides, visits to the park, sand and water play and story time) to be understimulated. For instance, when he plays in the sandbox - he has to be laying in it with the sand on his face. When he is near water, he prefers to have it splashed in his face--the more the better. On the occasions when he has had to have blood drawn, he doesn't even flinch. He has such a high pain threshold. He's a real daredevil. He loves music and sometimes will put his face on my husband's guitar to feel the vibrations. He seems to have 2 speeds - High and Off. Help!

Lindsey Biel, OTR/L: Dear Andrea, some children are so underreactive to sensory input that they constantly seek out very strong sensory messages! When Nancyís son giggled when he had his vaccinations as a toddler or when your son doesnít flinch when having blood drawn, itís a clear signal that some children donít perceive pain sensations the same way others do. For a child who always needs more, youíll need to give more, allowing him to get the intense sensory input his nervous system craves to feel right.

Just as youíd never wait until dinner to feed a childís body, you can give him nutritious sensory snacks throughout the day to help him stay calm and focused. Our book talks a lot about a personalized sensory diet, a schedule of ďnourishingĒ activities done throughout the day. It sounds like your son would benefit from structured, planned opportunities for very intense experiences. You might consider a mini-trampoline with a handle, a sensory bin filled with dry rice and beans for indoor play, setting up a crash pad of cushions he can jump onto, vibration experiences he loves through a vibrating toothbrush, vibrating pen, and vibrating toys from therapy catalogs like Southpaw Enterprises. Youíll find lots of sensory diet suggestions in our book, as well as practical ideas for resolving everyday difficulties you may be having with your son.

It sounds as if your sonís sensory seeking is quite intense. I recommend that you get your son evaluated through your stateís early intervention (EI) program. The EI team will assess your sonís needs in terms of sensory issues, motor skills, speech-language development, and so on. Visit our web site at www.sensorysmarts.com for a link to the program in your state, as well as some sensory diet ideas. If your son qualifies for OT, an OT will work with you at little or no cost (depending on your state) to develop an effective sensory diet and provide any other interventions your son may need.

Best wishes,
Lindsey Biel, OTR/L

Our thanks to Lindsey and Nancy for a very informative and helpful interview! Please visit their website for additional information.

If you like this article, we'd be honored if you shared it using the button below.
Bookmark and Share

Copyright © 1996-2016 StorkNet. All rights reserved.
Please read our disclaimer and privacy policy.
Your feedback is always welcome.

StorkNet Family of Websites:
StorkNet's Blog | Pregnancy Week By Week | Exploring Womanhood | Books for Families | EriChad Grief Support

Bookmark and Share
Find Us on Facebook
Twitter