Hello...I'm so happy you are here! I'm Connie the Speech Therapist and I currently work as a speech-language pathologist with children and adults who have special needs. In truth, I think we all have some unique needs. That is what makes me passionate about inclusivity. Human beings are complicated. My hope is to provide education about and build positive foundations for skills that help people become as happy, healthy, and productive as they can possibly be.

Revisiting Sensory Integration Disorder

As an addendum to my previous blog on Sensory Integration Disorder, I want to add some of my opinions about information presented in Jenny Jarvie's article "Is 'Sensory Processing Disorder' a Real Medical Condition" published by NewRepublic.com.

I think, perhaps, Ms. Jarvie's  article was attempting to explore Sensory Processing Disorder. However, the title and tone seem to question the reality of the disorder and necessity of treatment. I felt my therapist hackles rising at the subtle (unintentional?) implication that therapist have found a new way to bilk well-meaning and naive parents and insurance companies out of money.

The title seems to establish a somewhat judgmental perspective. The answer to her question is simple: We don't know. I think the main question is this: Is Sensory Processing Disorder real? And I think the answer to that question is: Yes.

Sensory Processing Disorder (SPD) is real. It feels as real to me as pain, or hot, or cold, or hunger, or fatigue, or sorrow, or joy. And just like those feelings, it can be overwhelmingly distracting and sometimes even debilitating. Although, it is not always. Often, like hunger, it just lingers in the background. Sometimes I wonder why. Why does my body process information this way? It would be much more pleasant if it didn't.

So, IF Sensory Processing Disorder is real, is it worth investigating? And...IF Sensory Processing Disorder is worth investigating, is it worth treating? Is it enough to just acknowledge its existence and provide education for the people who have it and their loved ones? If we're going to discuss Sensory Processing Disorder (SPD), let's discuss those questions.

For the most part, SPD is not life threatening. I think we can all agree that imminently life-threatening illnesses should be a priority for research. That being said, who knows what discoveries might be made while researching SPD? If someone brilliant wants to spend time and energy investigating SPD, please, research away! I'll even volunteer! In the meantime, please keep in mind that just because no one has made great strides in SPD research yet, does not mean it does not exist.

My opinion on treatment is colored both by growing up untreated and by seeing what a difference some treatment can make for some children with SPD. Note the some.  My family and I would have benefitted greatly from education. Some behavioral and environmental modifications could have helped tremendously. I don't know that there is any specific treatment that would have made a difference for me. Yet, there are many children I've encountered in my speech therapy practice who demonstrate improved functioning following the use of stimulation techniques.

In general, I think that it doesn't hurt to try. If you have the time and the money and a qualified therapist, treatments are worth trying. If the SPD co-exists with other syndromes, it is likely that a different medical diagnosis may help cover the costs of therapy.

For children who are otherwise typically developing and show only SPD in isolation, I would prioritize education and environmental and behavioral modifications. I would not rush to engage in hours of therapy and potentially create a bigger concern for a child who is probably already sensitive to begin with.

So what if we hate shoes and wear our socks and underwear inside out until we're 27. Who cares if there are only 15 foods we will eat as long as we are maintaining growth and are physically healthy. There are worse things in life. Not being ruled by "should" can change a family dynamic. Yes. We should wear closed in shoes in winter. We should eat tomatoes or oatmeal. We should not wear the same clothes five days in a row. And we should be able to spend the night at grandma's house. But we might not. And that is not necessarily an indication of poor parenting or obnoxious children.

Reducing power struggles and building a predictable, easy-going environment to try out new clothes, new shoes, new foods or new experiences can help ease us into the uncomfortable. Friends and family members understanding that people experience sensory input differently and being open to accepting that as a fact can be life changing.

Let's not debate whether SPD and its treatment are fact or fiction. Let's educate so we can increase function.

A Sensory Story

Let me tell you about a child….

Some might call her difficult. Others might call her spirited or spoiled.

Obnoxious. Annoying. Bratty. Bossy. Controlling. Hyper-sensitive. Lazy. Rude. Antisocial. Manipulative. 

Unmanageable. Undisciplined. Uncooperative. Unlikeable.

Her poor family...

Two stories are often told at family gatherings to describe this young, incorrigible child. They both involve an extreme dislike of clothing.  First, as a toddler, she stripped in the local mall and refused to allow her mother to put the clothes back on. After much screaming and many tears and some not-so-approving looks from fellow shoppers, her mother had to drag her out of the mall and go home. Second, one day, at around age four, she refused to put on clothes ever again. After her mother reached her wit’s end, the child was taken naked to her father’s office and the secretary bribed her to get dressed (minimally) with sugar cubes.

This child hated clothes. They poked and constricted and the seams itched. She hated wearing shoes. Shopping for closed in tennis shoes was traumatic. (For everyone.) She did not like socks or underwear. If she had to wear them, she wore them inside out. Her year-round wardrobe was a favorite dress (or two) and sandals. People knew her as the little girl who always wore the same two dresses. (“What was wrong with her parents?” they must have asked themselves.)

This child was identified early on as “gifted and talented,” but she frustrated her teachers by not staying on task or following directions. She even bit someone in preschool. And though she did like to bite things, she usually would not try new foods. She had her favorite few and stuck to them. Threats didn’t work. She just went hungry. It didn’t even matter if it was something as yummy as ice cream. If it wasn’t vanilla and orange sherbet, she didn’t want it.

In the summer, her family sometimes had dinners on the patio picnic table with the setting sun in the background. She would get a terrible headache about the time she should be doing dishes. If her parents rearranged the furniture, she would become frustrated and angry and hibernate in her room. Repainting? Redecorating? New blinds? A new lamp? These simple things took her weeks to adjust to.

Getting her to sleep was a chore. She sucked her thumb (till she was eight). And she had to have a special blanket, night light and music. Spending the night at Grandma’s house? Tried and failed. It smelled weird. It didn’t feel right. The lighting was strange. Sleepovers with friends? Not an option.

In fact, just having friends was a challenge. She had a very specific idea of how things should be and wasn’t particularly flexible. (Just FYI, flexibility is important for getting along with others.) There were friends, but often bitter, fracturing arguments.

Let me tell you…this child was often not pleasant to be around.

This child is me.
This is the image I have of myself as a child. For years, after becoming an adult, I thought I was a terrible, horrible brat. I felt sorry for my family for having to deal with a kid who was so obnoxious. I was ashamed for the feelings and behaviors of my childhood. Frankly, I was afraid to have children of my own because they might be as terrible as I was. And then, in my job as a pediatric speech-language pathologist, I discovered Sensory Integration and Carol Stock Kranowitz’s book, The Out of Sync Child which begins by describing four children with Sensory Processing Disorder.
“Wait…THIS is me!” I thought to myself after reading one of the profiles. This was my childhood. What I felt for all of those years was something real. I wasn’t just obnoxious! There was a reason behind some of my terrible behavior. And I wasn’t just making up those headaches to get out of doing the dishes!
According to the Sensory Processing Foundation (www.spdfoundation.net), Sensory Integration, or Sensory Processing is “a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.” Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses.
This lack of organized responses can result in a variety of behaviors including hyper or hypo sensitivity to touch, taste, sound, smell, vestibular and visual input. Some people seek sensory input because it helps them feel better (e.g. swinging, bouncing, or jumping). Some people avoid sensory input because it is disrupting to them or uncomfortable. The effects can be varied, including a sense of uneasiness or over-whelm, decreased attention and concentration, physical responses such as headaches, nausea, dizziness or bowel disruptions.
When I was a child, my family became resigned to my idiosyncrasies and for the most part, learned to cope with my limited wardrobe and diet, my frustration with change, my sleep routine, my intolerance of florescent light and the setting sun, my difficulty settling in new places and my inflexibility (just to name a few). I’m sure that people judged my parents at times and they probably pitied my two older siblings and wondered what on Earth I would grow up to be like. Well, through the years, on my own, I learned to cope too.
Now, this is me…in my adulthood with Sensory Processing Disorder. For over 20 years, I have been a successful wife and speech-language pathologist. I participate in society. I travel. I have friends. I have a varied diet and will even try new foods. Most people don’t even know that I still have SPD. I think that is because as I aged, I seemed to become less sensitive to some things. Also, as I became more in control of my environment, I naturally made adjustments to compensate for my sensitivities.
Overall, I have learned to temper my high expectations and particular ideas on how something should be done with the reality of life. As a result, I have become much more tolerant and flexible. It helps me to briefly think through my expectations of a situation ahead of time and imagine the perfect scenario. Then I mentally take a step back and anticipate something more realistic because life is imperfect and the only thing we can count on is that things will usually not turn out the way we expect them to.
I wear clothes. I like clothes. I really like clothes! But, some clothes still drive me crazy. I feel the seams. I found underwear that is seamless and discovered that if I give myself a chance to get distracted with life, sometimes I no longer notice the seams in socks, pants or shirts. But occasionally, after I’ve worn it a few times, a shirt just has to go because there is something in the seams that I simply cannot ignore. I still hate layering clothes. It makes me claustrophobic. And, I still prefer sandals and bare feet, but when I need to wear them, I can wear socks and closed in shoes. I still feel the seams in the socks, but usually I get used to them after a few minutes.
I don’t rearrange my house. Dismantling my personal spaces in my home for cleaning or repair causes a strong physical uneasiness that only goes away when things are reassembled. That means we try not to start a project in the bedroom unless it can be completely finished before I have to sleep in it again. New furniture takes several weeks for me to feel comfortable around even if I picked it out and placed it myself. In general, my home is decorated simply, in colors and with lighting that is comfortable for me. No striped walls, no patterned wall paper and lots of symmetry.
My dear husband is tolerant of my sensitivity to music and light. He knows that Vegas is not the place to plan a vacation. I’ve been there, and it makes me physically ill after two days. Occasionally, I cannot spend time in an office or someone’s home because the lighting makes me sick. It usually starts with a sense of uneasiness and eventually turns into a headache, dizziness and stomach upset. I don’t usually discuss it. Most people would not understand it. It sounds ridiculous. Heck, I don’t even understand it, but, it is what it is. Often, I try to accommodate by changing where I am sitting or by adjusting the lights if possible. Sometimes this works, but if not, I just have to escape. That is literally what it feels like to me…an escape. When I leave a “trigger” situation the relief is almost immediate…as if you were listening to painfully loud music and someone suddenly turned it off.
As a grown-up who grew up with Sensory Processing Disorder, my hope is that by sharing my experience, I might help everyone to understand SPD a bit more. SPD does not automatically mean someone falls within the Autism spectrum. SPD does not mean you cannot be successful in school and life. SPD just means that you process the sensory input of life a little differently and you might need to make some accommodations. Parenting a child with SPD can be a challenge. Living with and loving someone with SPD can be a challenge, but learning to not take their behaviors personally and accepting that many of their quirks spring from legitimate feelings can help.
The debate over the legitimacy of SPD rages on with renewed vigor. I have lived with my body for 45 years. I can promise you that the way I experience some sensory input is different than the way other people experience it. I cannot tell you if that means that something is neurologically different in my body. Frankly, I do not care. Over the years, some sensations became less intense, some feelings I began to anticipate and deal with in a more productive way. Also, as an adult, I have much more control over what I must encounter and how it happens. I did not have years of therapy to over-come my challenges. Knowing more about what we were dealing with might have helped me and my family. And certainly, having some coping strategies would have made life easier for all of us. 
Looking back at that little girl, she was frustrating and challenging, yes, but also sensitive, playful, creative, intelligent, energetic, and loving. She had a future of helping people that in some ways grew from the challenges she faced--challenges that just happened to include SPD.
© Connie Hunt 2014

Here are just a few of the many resources available now:
The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Kranowitz
Growing an In-Sync Child: Simple, Fun Activities to Help Every Child Develop, Learn, and Grow by Kranowitz and Newman
Building Bridges Though Sensory Integration by Yack, Aquilla and Sutton

How do I know if we need a speech-language pathologist (a.k.a. speech therapist)?

Well…simply put, if you are asking that question, the answer is probably, “Yes.” If nothing else, you may need a speech therapist (also called a speech pathologist) to evaluate your child and tell you that they are developing within normal ranges so don’t worry! If there is an issue of concern, the sooner you start intervention, the better for your child.

Most states in the U.S. provide free or low cost developmental evaluations with a basic speech screening for children birth to three through an Early Intervention program. You can usually get information about these programs from your pediatrician’s office or by searching for “early intervention services” in your area on the internet.

Speaking of pediatricians….do not rely on your pediatrician to tell you if your child’s speech or swallowing is “normal.” That is not their area of specialty and often, though they mean well, they are wrong. You wouldn’t expect a speech therapist to tell you if a strange head lump was a problem or not, would you? Pediatric medicine is too broad a field to expect expertise in all areas of child development.

If your child is between the ages of three and five, your local school district will usually do a free speech screening and then recommend whether or not a full evaluation is required. Often children who are found to have a speech delay qualify for the school district’s preschool program to help give them a “head start” on learning and communication skills.

Also, your local or state universities often have speech departments that can evaluate your child and sometimes provide therapy if needed (often at a reduced rate based on a sliding scale) to help with communication skills. Sometimes they partner with the education and/or psychology departments to provide preschool classes to help with educational, communication and social development.

Or, you may seek an evaluation with a private speech therapist (this can be a single individual with a private business or a therapist from a larger therapy company). Your health insurance may or may not pay for this. You will have to call them to find out. Be sure to carefully document and save the dates and names of anyone you speak with as well as a summary of the conversation. It usually helps to have a prescription from your pediatrician for a speech-language evaluation. Always look for someone who is currently certified by the American Speech-Language-Hearing Association (ASHA). ASHA is the national governing body for speech-language pathologists. (www.asha.org) Also, check to be sure they are licensed by your state (if your state offers licenses).

Generally, parents (or primary caregivers) know a child better than anyone. If you are concerned, investigate thoroughly. Ask questions, do research, and seek second opinions. Sometimes parents fear the answers they might find, but there is no better way to conquer the dark unknown of concern than to shine the bright light of investigation and knowledge on them. A speech pathologist will help you do this; and the sooner you get started, the better for your child!

10 Minute Tip--Meaningful Mealtimes

Our busy days don’t leave much time for up-close communication and shared interaction. We all eat. (Well, most of us! We’ll tackle those who don’t in a later post!) Even if it is just a brief snacktime, eating is a great chance to communicate. Decrease distractions. Turn off the TV, mute the cell phone, sit at the table or picnic on the floor together.

Most caregivers who are familiar with their child know what the typical food choices are and what the preferences might be. You are great at anticipating wants and needs. You probably know they are hungry before they do and you could fix a snack or meal blindfolded! However, taking just a little time to offer options and ask questions gets your child involved and makes a snack or meal into great, meaningful communication practice!

Hold up choices (if necessary) and use questions like, “Do you want a banana or an apple?” Let your child tell you their choice. Fix a drink but “forget” to give it to your kiddo. Ask them, “What’s missing?” or “Did I forget something?” to help cue them to use words or gestures to get their drink. For older children you can “forget” utensils. “Oh! Did I forget something? How are you going to eat your yogurt? You need a….?”

My favorite trick is to only give one or two of something…raisins, goldfish, crackers…whatever the snack is…running out is a great motivator to ask for more. Help your child by noticing they have run out and asking something like, “Are they all gone? Do you want more? Can you tell me with your words?” Encourage your child to use his or her words and say “more” or sign more with gestures. If they need help, you can help them sign with your hands over their hands to make the gesture. This is also a great time for counting! “Do you want 1 or 2?” or “Hey! You have five! 1-2-3-4-5!” You can also find things that are the same or different on the plate…same colors or shapes, things that are smushy, things that are crunchy, things that are sour or sweet, things you eat with a spoon, things you need a fork to eat…limitless mealtime fun!

If accurate sound production is an issue, model the correct way to say the words without obviously correcting your child. For example: “Oh, you want your juice.” when he asked for “duu.” Or, “Oh! You want more!” when she says, “mo.” You can also “misunderstand” their words. “I’m sorry. I don’t know what you want. Do you want broccoli or juice?” If your child says “duu” or points to the juice, you say, “Oh you want the juice! Here you go. It makes it so much easier to get what you want when you tell me. Thank you for using your words!”

The more fun you have, the more fun your kiddo will have!

10 Minute Tip--Getting Dressed

Getting dressed is a great time to work on communication and physical skills. If your time is limited, pick out two or three outfit choices the night before after your little one is asleep. Put them out so that you can both look for them in the morning. (Sometimes it is great fun to see what the Clothes Fairy left out for you to chose from!) Talk about the clothing item pieces as you are making choices and putting them on. For example..."Do you want the red shirt with the big bear or the blue shirt with the silly fish?" Even little ones can point to their choice. If they don't want to choose, you can keep things moving with something as simple as, "Choosing can be hard, how 'bout if I help you? If you pick before me, then I'll know what you want to wear. Here I go, I'm picking now!" If you have extra time, you can be silly and pretend you don't know where the clothing items go. "Oh no! Shoes don't go on your hands! Where do they go?" Talk about the body parts that use each clothing item. "Feet get socks. Let's cover those toes! Where are your toes? Can you wiggle them?"

Help your kiddos to sit up or stand as independently as possible while dressing. Let your kiddos try to put their arms through sleeves or legs into pants or shorts with as little help as possible. Show them the tricks for finding those holes to fill. Stretch with arms and legs, ask them to help straighten sleeves and hems. Buttons, snaps and velcro offer a chance to work together on some fine motor skills.

Have fun!

Positive Foundations...A place to start.

So here goes my first foray into the world of websites. Let me start by saying that I am not the world's best speech pathologist. I'm good, but as I often tell the families I work with, my magic wand and crystal ball are not currently functioning. I am sure there are some better therapists out there---therapists whose magic wands and crystal balls are always functional. But, in the past 16 years, I have learned a tremendous amount about communication, swallowing, feeding, personalities, developmental skills and families that I want to share with others.

My hope is that this site will be a way for caregivers and parents to have access to a speech therapist to find some useful activities and at least have a place to ask questions.

Legal disclaimer time. People, please, do I really need to say this? Ok, I will, just in case. THIS IS A BLOG!!! It does not take the place of seeing and working with a real-live speech therapist. I cannot treat your child. Concerns about how your child speaks, eats, drinks, and even behaves should always be addressed with your pediatrician. You can however see what my opinion is regarding general, fun speech activities that may or may not apply to your child. Please use your common sense. And finally, this is not associated in any way with the company and truly wonderful people I work for.

Since healthcare and the economy are chipping away at the very foundations that will build a strong future for our children and your families, let's try to build some Positive Foundations. (Thank you, Seester for letting me borrow the cool name.)