OT with a Side of Pride

When I talk to people about B’s day at occupational therapy (OT), I notice their eyes glaze over and they nod mindlessly like I do when my husband starts talking about computers 🙂 OT can easily become over-loaded with acronyms and medical terms that can be intimidating. After all of the perks B has received working with her OT, I feel like I need to redeem OT’s everywhere (specifically sensory-based OT’s) and help parents, families, and others recognize the importance of movement exercises to help our bodies/brain function better throughout each and everyday of our lives.

Sensory-based OT’s work specifically on trying to help kids with sensory challenges self-regulate. Throwing a big word out there, but actually we all self-regulate at different times throughout the day. Self-regulation is having your emotions, mind, body in a “ready-state”. The state where we’re ready to learn, adapt, adjust, transition, and take in sensory input (Voss, 2011). As adults, we tend to self-regulate independently. I personally chew gum, and I’m one of those annoying people who HAS to pop bubbles. It calms my nervous system and helps me self-regulate. So does rocking. We specifically bought a glider for our living room so that I could rock our children as babies, and so I can rock/self-regulate as they grow into teenagers 😛 Angie Voss (OTR/L) created this awesome checklist to determine how we all self-regulate. Take a look and feel free to comment on some of the ways you self-regulate http://www.understandingspd.com/sensory-blog.html.  (How do YOU self-regulate 3/21/2012).

For kids with sensory challenges, they struggle to self-regulate independently. They don’t always know how to verbalize what their bodies need and situations they find overwhelming. Here’s where the sensory-based OT comes in. He/she works on the three power sensations (proprioception, vestibular, and tactile input). To keep things simple, proprioception=heavy work. Some examples include carrying a heavy backpack full of books to the office while delivering attendance, shoveling snow, or pushing a wheelbarrow full of wood to the outdoor fire pit. Vestibular=movement/balance. Bouncing on a hoppity hop ball, skipping from the car into school, and swinging are all examples of vestibular activities. Finally tactile input includes the mouth, light/deep pressure touch, dealing with different textures (dry, wet, messy) and processing pain/temperature (Voss, 2012). Without the three basic power sensations working together, you won’t have the foundation skills needed to maintain a “ready state”.

B’s OT creates so many awesome sensory activities to help build the basic powerhouse sensations. She swings while playing ring toss, she rolls over bumpy crash cushions, she completes obstacle courses, she jumps on the trampoline, she pushes/pulls herself w/ a bungee cord while laying on a scooter board, she lays upside down on an exercise ball and works on pulling herself up, she walks on balance beams, she crawls through tunnels, she swings on the trapeze swing, she finds hidden objects in rice and beans, she feels different kinds of fabrics/textures, she uses different types of sensory medium (clay, glue, shaving cream, paint) to learn how to manage the tactile sensation. She even participates in cooking activities! Without all of these activities, B would not have the foundation to improve her ability to self-regulate which in turn builds her brain development.

How do I know OT is working? This week Tuesday, B’s 4K teacher came up to me and told me she’s finally starting to “get it.” She’s verbalizing her sensory needs at school. Her teacher could tell she was on over-load. She went up to her and asked if she needed a sensory break. B replied with a resounding, “Yes!” She took a 30 sec. break, came back, and had no trouble finishing the activity. She also knows exactly when she needs to use her seat cushion at school. We all have our proud “mama bear” moments with our kids and this was mine. She’s starting to recognize and use the tools OT has given her this last year!

I couldn’t be happier:) I couldn’t be more thankful for the sensory-based OT’s we have in our lives. B’s home-based OT and Angie Voss have taught us how to work with these challenges and point out how we all use various tools to self-regulate. I try to consciously remember that when I’m sitting next to the people twirling their hair, biting their fingernails, or tapping their fingers on the tabletop. I hope you can too!

*An extra thank you to Angie Voss for introducing me to my sensory bibles, “Understanding Your Child’s Sensory Signals (2011)” and “Your Essential Guide to Understanding Sensory Processing Disorder (2011).”

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18+ Years of Parent Homework

My new mantra while I’m entertaining a toddler and a preschooler around the house (Taken from Snow White and the Seven Dwarfs. Lyrics by Larry Morey):

When there’s too much to do
Don’t let it bother you, forget your troubles,
Try to be just like a cheerful chick-a-dee

Despite the villains, Disney movie endings consist of romance, giddy music, dancing, rainbows, and maybe some fireworks. While that can be unrealistic and annoying at times (especially when I’ve watched each Disney princess movie at least five times each), Snow White’s merry little song reminds me to keep things in perspective when I’m having a tough day or even week!

Believe me, I realize how incredibly important it is to keep up with B’s sensory homework. I get that if I don’t stay consistent at home she’s not going to learn how to cope with her sensory challenges. Without B’s therapy visits throughout the week, I’d still be trying to put the pieces together. So, trust me when I say, “I get it!”

What’s incredibly challenging, is how exhausting it can be to provide all of the sensory needs for one child. To complete all of the homework. To follow the protocols. To keep up with the routines. Some examples of our what this week’s sensory homework looks like:

  • Wear compression vest 2 x’s per day for 7-10 min. each time. A compression vest provides kiddos some much-needed deep pressure input, and often helps kids to self-regulate (aka calming herself). It’s usually seen as a much-needed, deep pressure hug. It reminds me of a wet suit. Here’s a pic of a B’s borrowed vest:


  • Jump into her crash cushion 10x’s per day. Another picture for your viewing pleasure 🙂


  • Retreat into her pillow cave at various times throughout the day. This is also known as her crash cushion. Instead of jumping into it, she climbs inside of it w/ 20+ pillows and some egg crate foam for a much-needed sensory retreat (Notice she’s inside the cave in this pic).


  • Listening therapy CD every morning at breakfast for 20-30 min. Here’s a website that describes the program very well http://www.sensorysystemsclinic.com/Therapeutic%20Listening%20Program.htm We are using it to decrease B’s sensitivity to sound and help improve her sensory defensiveness among other things.
  • Balance on her ladybug or roll around the room with her ladybug cushion.


  • Jump on the trampoline randomly throughout the day.
  • Engage in food school protocol at every meal (In other words, we are constantly playing and talking about our food at each meal).

To add to the daily craziness, this is all in addition to driving to/from 4K, therapy appointments twice a week, keeping up with playdates, visiting family and friends, and keeping up with the bedtime routine. Notice cleaning was not part of the list. *Insert Snow White song here*

What’s awesome is when we do keep up with her homework, we see progress. We see a much more calm and centered B. She’s laughs more often and enjoys the random surprises each day might bring. That’s why as crazy as each day can get and as frustrating it can be to remember all of it, I’m determined to keep doing the homework. So, if I’m out and about and you happen to hear me whistling it might be because we’ve been extremely busy at home that particular week, and I’m just absorbed in my own personal homework (I mean mantra)  đŸ˜‰

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Lost Signals

Pet Peeves. I have so many. Drives who don’t use their blinkers. Drivers who veer into my lane for no reason other than they’re too busy yapping or texting on their cell phones. People who use the word “retarded” in their everyday conversations. People who are two-faced.

My newest pet peeve reared its head about a year ago.We decided to get B evaluated by an Occupational therapist and a Speech and Language Pathologist for her eating issues. Let me just say that after the evaluation I finally realized why my daughter acted/reacted the ways she did. She had sensory issues. Sensory challenges that contributed to her eating difficulties. Behaviors that all of a sudden made sense based on this newly discovered diagnosis.

Back to my #1 pet peeve of  the moment. People who feel we have nothing better to do than to make up B’s sensory issues/diagnosis. That’s right! We’ve been told everything from, “I think you’re reading too much into this,” to “Everyone has sensory issues,” and the, “I think you’re blowing this whole thing out of proportion” comment. Then there’s the people who just walk away when I start talking about her therapy or sensory challenges. Makes me want to scream at them and say, “Then it’s a good thing God made US her parents!” Instead, I’m going to educate. The purpose of tonight’s blog post.

I guess I can’t blame them. When you don’t know anyone who has Sensory Processing Disorder or haven’t lived with it day in and day out, it’s hard to look at or even talk to someone like B and think she has trouble processing the things her body does.

I have to take a moment to thank my new-found friend and OT, Angie Voss, for her amazing book “Understanding your Child’s Sensory Signals.” Without the information in this book, I would still refer to B’s sensory “signals” aka sensory “differences” as behaviors. I would also still wonder why she does half of the things she does. This book has saved my sanity and helped my husband and I look through B’s world with our sensory goggles 🙂

Here’s just a small list of some of B’s sensory differences: gags with textured foods, picky eater, extreme food preferences, nail trimming distress, animal fear, very difficult to calm, dislikes certain clothing, lines up objects/toys, spins indefinitely and does not get dizzy, never just walks..always hopping, skipping, or stomping, bugs cause fear, asks others to stop talking or laughing. Please remember these are just SOME of the sensory signals B exhibits. I can’t focus on all of these signals without putting everyone to sleep, but I do want to focus on a few. I want to take a minute to explain why she does certain things and give ideas to help her during certain circumstances.

Sensory Signal #1-Lines Up Objects/Toys:

B’s done this since she was a little toddler. She’s always had a strong desire to line up her toys. This is a daily habit for B. Some days she does it a little more often and other days a little less. According to Angie Voss, lining up toys is organizing or calming to a child with sensory processing difficulties. We live in a very disorganized world, and B’s sensory system doesn’t always like that. Lining up her toys gives her a sense of control and order. Still don’t believe me? Sometimes photos speak better than I ever could:

Sensory Signal #2-Never Walks…Always Hoping, Skipping, Stomping

B’s done this for a while now. She skips on her way into school. She skips when we’re walking in the mall, and she’ll even jump in between her skips. It seriously drove me batty! I’d get so annoyed with her and tell her, “Can you please just walk?” Actually, her sensory system is telling her she needs more input or better regulation and what better way to get it than through a good dose of proprioception/vestibular input. I’ve finally realize that she needs this, and I let her have her dose of skipping and jumping. Who knows; it might help her focus better too and who am I to argue with that!

Sensory Signal #3-Spins Indefinitely and Does Not Get Dizzy

B has always loved spinning at top speed. We have plenty of videos of her at the age of 2 and 3 spinning in the jumperoo swing as fast as her legs could carry her. I’d post a video, but I do want to protect her privacy. Even when she goes to OT, she’ll jump in one of the therapy swings and try to spin herself into oblivion. I’ve come to find out she loves spinning because her brain is not getting enough vestibular input (aka movement). The brain needs a certain amount of vestibular input to function on a daily basis. Her brain most likely has an under-responsive post-rotary nystagmus (PRN); therefore, the brain doesn’t recognize the rotary input and she doesn’t get dizzy. I also learned through Angie’s book that intense, long amounts of spinning should be discouraged. It’s very disorganizing for the brain. Instead we provide her with different swinging activities, allow her to hang upside down, and encourage her to jump on the trampoline or her hoppity hop ball.

So you see, B’s signals are often distressed and need some reorganization or tools to help her feel more in control. We couldn’t make this stuff up if we tried. I’d love for my daughter to simply be a picky eater like her little sister. I’d love for her to understand that bugs are smaller than her and they are more afraid of her than she is of them. Instead, I’ve accepted she has sensory differences. I pull out my trusty sensory bible and arm others with a little education and hopefully a lot more compassion and understanding.

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She’s Melting…

Meltdowns. They appear among toddlers of all ages, sizes, and temperaments.   The problem is “B” isn’t a toddler anymore. She’s 4.5 almost 5 years old. Yet the meltdowns we deal with when she’s in fight-or-flight mode take me back to the two-year-old toddler hitting, kicking, and screaming stage.

For the longest time, I thought her reactions were solely behavioral. After all, “B” is very perceptive and has strong vocabulary skills. Because she always spoke so well for her age, my husband and I would forget that she was only 3 or 4 and treat her like she was going on 6 or 7. During her meltdowns, we’d try to talk her through it and rationalize with her. We’d use the disapproving tone and place her in time out expecting her to get over herself. None of these tactics worked well. In fact, they often intensified the problem. She’d hit, kick, cry, hyperventilate, scream in our faces, and stomp her feet so hard I thought she’d fall through her bedroom floor. The things we were doing were obviously not working. It was time to ask our OT/professionals some questions, talk to parents of sensory challenged kids, and figure out what we were doing wrong.

I’ve been fortunate to recently find a support group online filled with parents who have children with sensory challenges. We can share stories, give advice and support, and educate others about sensory processing disorder and other sensory behaviors. I was very blessed to meet Angie Voss, a Sensory Occupational Therapist turned author, who has written sensory books, created a website, and continues to manage a blog all dedicated to helping others understand sensory challenged children.

She recently wrote a fantastic blog post that helped my husband and I recognize that the meltdowns “B” has are not intentional and malicious. It’s almost always part of a sensory driven need or function. Angie mentioned that most kids with sensory challenges want to please adults. “B” is a people pleaser through and through. The slightest disapproving look or tone in one’s voice crushes her sensitive spirit. Please take a moment to read Angie’s blog related to “meltdowns.” It is a very easy read and explains the ins and outs of what people perceive as “defiant” behavior. http://www.understandingspd.com/1/post/2012/01/meltdownspar-for-the-sensory-course.html

After reading Angie’s article, we discovered that a lot of “B’s” behaviors are probably due to the fight-or-flight response. Especially her reaction to food and the entire eating process. Change in routine is another big one and the inability to maintain self-regulation. One of the biggest eye-openers we have discovered is to avoid talking to “B” during her meltdowns. Her brain is not ready to comprehend what we are telling her. She doesn’t have the ability to process our words at that time. No amount of discussion or negotiation will work until she can settle herself down.

It’s through Angie’s books, blog posts, and trial and error methods as parents that we’ve discovered the best way to handle “B’s” meltdowns is to let her go to a quiet place and calm herself down. That or the trampoline seems to be the best methods we’ve found so far. Feel free to check out Angie’s sensory website (complete with a sensory item store) http://www.understandingspd.com/ and her Facebook page https://www.facebook.com/pages/UnderstandingSPD/146380788726817?sk=wall

I am eternally grateful to have found a group of supportive experts and parents in this field. I’m constantly learning and growing as a mom and as an advocate for my daughter. So thank you Angie and other sensory moms for reaching out to strangers connected by lovable children affected with sensory difficulties. Your support means the world to parents like me!

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A Not-So-Distant Future (2012)

New Year’s Resolutions. Everyone makes them. Lose weight, eat healthier, watch less T.V.,  spend more time with your family, exercise, lessen your stress. January rolls around and I’m glued to “Dr. Oz” or “The Doctors” talking myself into a lifestyle change. Nodding my head along with the audience saying, “I need to throw all the junk food out of our pantry. I need to get off the couch and find that Pilates DVD that’s been missing for the last couple years. I need to take more bubble baths, read more books, and spend less time on the computer.”

This year my New Year’s Resolutions are very different from past years. I have a child with sensory challenges. I need to look past myself and figure out what my husband and I want her future to look like.

The past month has been especially challenging. B’s routine has been completely messed up, and we all know how kids thrive on routine. Especially kids with sensory challenges. Sharing a room with her sister during the holidays, working on holiday school programs vs. the predictable classroom routine, visiting with out-of-town family, getting sick with the stomach flu…these are all little changes that add up to HUGE inconsistencies in B’s everyday structure.

That being said, it’s really overwhelming to look down a road that appears quite foggy at the moment. There are times the fog clears and lifts briefly, and then other days it’s quite thick and heavy; oppressive even. How do you look into the future when you can’t visualize  it with much clarity?

We want the same thing every parent wants for their child. We want her to enjoy school, have friends, get along with her sister, enjoy her childhood but right now our future for her is more limited. Here are our new New Year’s Resolutions for B’s not-so-distant future:

  • Learn how to take deep breaths when her body is in fight-or-flight mode
  • Recognize when her body is running to high, too low, or just right
  • Touch a new food without always needing a utensil to touch it
  • Eat at the table without asking us to light a scented candle (because smells of food are too overwhelming for her)
  • Incorporate 3 new foods into her diet over the course of 2012 (she has to eat each food ten times before it’s considered a “safe” food)
  • Figure out appropriate ways to self-regulate when she becomes upset (jumping on the trampoline, brushing, and hopefully we’ll find a few other methods)
  • Look at and describe 5 very challenging new foods (e.g., meatloaf, mashed potatoes, cheese, deli meat, and chili)
  • Verbally express how she’s feeling in specific situations to help her identify with her emotions

I think the goals we have in mind for her are pretty realistic, but quite challenging at the moment. I’m hoping with continued therapy and after talking to a few more specialists/professionals, we might get some of the answers we’re looking for. We want to help B make life less challenging for herself as well. I’m especially hoping we can figure out some of the more challenging sensory issues before she starts kindergarten this fall.

Back to my #1 New Year Resolution for 2012. To learn everything I can to better understand my daughter’s sensory needs and talk to parents who are dealing with similar situations 🙂

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Mom’s Got High Hopes

Usually I try to keep my blog posts as upbeat and positive as possible. I’m not going to lie. Tonight was one of those nights. The frustration, the tears, exasperation, and the overwhelming need to scream. I’m not talking about my 4.5 year old’s emotional state (although that was very much part of the scene I’m about to describe) . I’m talking about myself. I’m talking about my reaction to her rough night. I’m talking about those nights when I realize she’s trying to hold it together, can’t, and I want to sit down on the floor and lose it-right along with her.

Nutella. Another new food. A European food I happen to think is quite delicious. A food her therapist and I thought she could relate to. It’s thick, rich, and creamy like peanut butter, and “B” loves peanut butter. It tastes like chocolate. Another flavor she tends to like (most of the time). Boy was I wrong! Times 1000. Apparently, I didn’t do a good enough job of prepping “B” about Nutella. I went against everything I learned in food school. Instead of putting it on her “learning plate” (the plate where anything she hasn’t been exposed to resides until she’s ready to learn about the properties of that particular food), I smeared it on some bread and  placed it right on her dinner plate. BIG MISTAKE! Mommy-messed-up-my-dinner-routine equals a full on melt-down. Not that I shouldn’t have expected it. I should have, but I had some high hopes. Those high apple pie, in the sky hopes. Too high apparently.

All she did was take one look at on her plate and she started hyperventilating. She wailed on and on with, “Why is it on my plate when I’m not ready to learn about it?” She had a legitimate question. I responded back with another horrible answer, “You don’t have to eat it, but we need to learn something new about it.” Then, I tried to redeem myself with, “I can move it to your learning plate.” The scene escalates.

Picture the following. Sobbing, hyperventilating, not listening to anything I’m saying. Not sitting at the table or eating. She responds with, “I don’t ever want to learn about it any day ever again!!!” In between sobs of course. I decide I need to do some therapy intervention. She needs to calm down. I need to calm down. You see at this point my frustration level is mounting. Tears are building behind my eyes. Family members are over, and everyone is watching the scene unraveling before their very eyes. My parents are trying to explain her behavior to the other people in the room. I’m thinking to myself, “Yes, indeed this is the way we live life when I don’t follow the rules. The “sensory” rules.”

I pick her up and carry her to the other room. I plan on brushing her to help her calm down. Picking her up induced another kicking-and-screaming, hitting-and-sobbing melt-down. She’s screaming, “Mommy, put me down!”

She tries to keep talking about the change I made to her dinner routine. All I can come up with is, “I’m brushing you right now. I’m not talking about dinner.” I encourage her to take deep breaths. It isn’t working. Time to move to the basement and bring out the big equipment (aka the trampoline). I tell her she needs to jump 100 times. She comes back with, “I can’t jump without any music.” This is all while she’s still crying and carrying on of course. I switch on her Backyardigans music and she starts jumping. She does it. 100 jumps.

Finally, I can talk rationally to her. She still tears up when I tell her she will eventually have to learn about Nutella, but not today. Today, I will move it to her learning plate and cover it with a napkin so she doesn’t have to look at it or smell it. The compromise that finally satisfies her sensory system. The emotional roller coaster ride has ended.

My emotional roller coaster ride continues. Each and every time this happens I think to myself, “How many times do I have to do this. How many melt-downs do I have to get her through before she can do things without it turning into an emotional battle. How many new foods do I have to expose her to until she’s willing to accept it on her dinner plate?” This doesn’t just happen with food. It happens with change. When her routine is challenged. Today it was about food. Yesterday, it was because I told her she needed to take a rest break in her room. I never know exactly what’s going to set her off emotionally.

It may seem I’m feeling sorry for myself, and you’re right. Some days I do. I know some people get it. Others will think, “You could have it so much worse.” They’re also right. I could, but some days my worse does get the better of me. I’m just glad I have a place to go and type it all out. A place where I know some people can identify and others just listen. Thanks to those of you who try and do understand. Right now I’m feeling much better 🙂

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Food for Thought

My husband and I enjoy food. We love tasting different types of cuisine. We have a great time visiting new restaurants that offer unique items on their menu. We especially enjoy ordering new dishes at our favorite restaurants simply to experience bold and exciting flavors!

I enjoy eating food, but this is where my love for food gets tricky. Thinking about the physical properties of each and every food we eat (how it smells, its appearance, the texture), trying to find food that is similar (but not exactly the same) to a specific food my 4.5 year old will eat, and figuring out how I’m going to make a particular food fun and engaging is mentally exhausting some days! It makes me realize how much people take for granted about the entire eating process!

Holidays gatherings, play dates, and going out to eat can be especially trying for myself and for “B”. Like I told my mom last week, “Eating is such a social activity. When it’s something you cannot enjoy or it becomes a 20 step process, it can feel rather isolating.” I often feel guilty. In my head, I know the eating process is physically painful for “B”. The problem? My initial reactions often go against what I’ve learned throughout “Food School.”

I feel like I haven’t really explained what it’s like on the parent side of sensory issues. I have a 4.5 year old child, and I still have to pack an entire backpack when we go out. Not for an extra change of clothes, but filled with all of her “safe” foods, drinks, and snacks. I don’t expect anyone to feed my child given her specific needs, but I can’t stress enough how grateful I am when a family member or friend asks if they can make something for “B” that she’ll eat. Some days just asking saves me my sanity.

Besides her safe foods, she has a learning plate. A plate where she’s still learning about the properties related to the foods she’s not yet comfortable to look at, smell, touch, or taste. How awkward is it to ask someone you don’t know very well, “Do you mind if I give my child all the portions of your dinner? She most likely won’t eat any of it, and you’ll probably throw it away, but part of her therapy program is to learn about foods that stress her sensory system out.”

It’s also challenging when we bring “B’s” safe foods to lunch/dinner and the other kids see “B” is eating something different than they are. How do you explain to another child at the table, “B doesn’t really eat hamburgers. She’s going to eat chicken nuggets instead.”? I don’t mind bringing extra food for the other kids, but I usually feel super guilty that my family/friend’s kids are now eating something their parent’s really didn’t want them to eat in the first place.

“B’s” food school program also encourages her to learn about new foods through play. Think like a toddler. How does a toddler learn about food? Through their senses. They’re messy, and they’re supposed to be messy. That’s how they learn. That’s how they learn to eat. It gets more difficult when your 4.5 year old is learning about food through play, and she wants to blow bubbles in her juice at a restaurant, have a sword fight with her french fries, and scrape “gold dust” off of her bread sticks. The looks people give! Shame on us for raising a kid with such awful manners!

Then there’s the garbage bowl. They save the best for last at food school 🙂 After exploring and playing w/ new foods, “B’s” encouraged to spit, blow, or sneeze these foods into a big giant bowl. Sounds crazy, right? Actually, without really thinking, “B” has spit a lot of the “I won’t touch these” foods into the garbage bowl simply because she no longer sees these foods as a threat. They’re disappearing into the trash and that eases her fight or flight response. It is challenging to remember to pull out the garbage bowl at the end of every meal though. Especially when you have “B’s” sister screaming, “Wipe me up, mom!” for 2 minutes straight.

I think I forgot to mention the mess food school leaves all over the floor! All I can say is THANK GOODNESS for hardwood floors in our kitchen 🙂

I think I’ve painted a pretty good picture about my current love/frustration relationship with food, but I also have to celebrate the small successes! It’s what keeps me going. It’s what encourages me to “love” food over and over again and run food school at home twice a week. This afternoon, “B” licked and took a bite of a mini cheddar rice cake!!! A really big deal when for 4.5 years she only ate white cheddar rice cakes. She also drank the juice out of her mandarin orange fruit cup! Another major success because she used to eat mandarin oranges (back when she was about 2.5 years old), but hasn’t re-introduced them into her diet since she discovered they have strings on them. I know; it’s a slow process. I must give it time. I also know without “food school” (aka SOS feeding therapy) and “B’s” food school therapist, my feelings of frustration towards food would probably be a lot stronger 🙂

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Sweet Emotions

My husband can attest that living in a house full of mostly females (he does have the cat in his gender corner) can be a little overly dramatic at times. It can also be hilarious, fun-loving, moody, exciting, yap-happy, over-whelming, get-me-out-of-here crazy, and awesome. Are you noticing the roller coaster ride?

“B” is full of emotions and we love that about her. She always has been quite sensitive, astute, inquisitive, thoughtful, loving and yes, moody. Let’s be honest…most children have moods that fluctuate over the years (I’m thinking about taking a sabbatical during the teenage years), but “B” has always been more emotional than most kiddos her age.

I remember the hysterics over friends/family members leaving after a brief visit. I’m talking a hyperventilating sob session because they were simply going home. I remember “B” having a melt-down so severe at her 1st dentist office visit I thought the dentist was going to get her finger chomped off (she failed to remove it from her mouth while she was engaged in a screaming, kicking, flailing, hyperventilating, sobbing flight-or-fight response). She was an emotional mess anytime we tried to re-arrange her room, or when we tried to give her medicine. Oh, the flashbacks to medicine! As an infant/toddler, “B” would be so over-the-top hysterical about taking medicine it would take both my husband and I to hold her down in the bathtub. During one of the med battles, she bit my husband’s finger. He yelled out so loud I thought he needed stitches! When she was tested for a heart murmur at 13 months, it took a nurse, my husband, and myself to hold her down just to get the medicine in her. The nurse was not at all understanding about dealing with an “uncooperative” toddler.

The melt-downs continued with food. She would sit at the table and sob over certain foods we placed in front of her. Her eyes still well up with tears when we introduce her to a food she can’t quite tolerate.

I also recall how angry she’d get over these things. It wasn’t just tears. There were many times, she’d kick, scream, stomp full force around her room, shake, cry, and gag until I thought she was going to vomit. I remember thinking, “I should video-tape these tantrums to show her how out of control she is.” Little did I know her body REALLY was out of control.

In many of the situations I described, “B’s” body was in fight or flight mode. According to Abbie Smith (Licensed Clinical Social Worker @ Holt International), “B’s” body has difficulty filtering out unnecessary sensory information (2011). Everyday sensory experiences can cause a flight-or-fight response and lead to frequent melt-downs. Kids with sensory processing difficulties will often times give 100% effort to accomplish something. “B” absolutely does this. When you’re trying to keep it together 100% of the time, this will cause kids with sensory difficulties to become exhausted and fall apart. Abbie Smith wrote a very descriptive and insightful article about the everyday challenges children with sensory difficulties face. You can find her article at http://holtinternational.org/pas/newsletter/2011/06/07/emotional-regulation-sensory-processing-disorder-2/. The Perfect Playground NY: Blog just came out with additional information regarding sensory processing, modulation, and emotional response. Feel free to check out this article as well http://www.theperfectplaygroundny.com/blog/?p=107. Both pages are full of awesome information.

Thanks to “B’s” fantastic OT, we have been helping her self-regulate through the brushing program and a strict sensory diet that consists of swings, a trampoline, crash cushions, taco roll-ups, a hoppity hop, thera-putty, and other fun exercises/toys. If anyone has any specific questions on “B’s” sensory diet let me know.

Despite all of the emotional melt-downs, “B” is one of the most loving and caring kids I’ve ever met (Yes, I’m biased). She has a heart of gold, the compassion to love and accept everyone for who they are, and wisdom that goes beyond her 4.5 years. We are so blessed to have this little girl in our lives. She’s taught us that love knows no bounds. 🙂

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Fashionista Diva

Fashion sense. I certainly have very little of it. Looking back at pictures, I want to scream, “Who dressed you and why?” Those who know me know that it’s no secret that my younger sisters are pretty fashion forward, and through the years they’ve given me some much-needed fashion advice. I still REFUSE to wear skinny jeans, and I have yet to buy one of those decorative scarves, but as a stay-at-home-mom I find that when I look put-together I feel good about myself.

Why the sudden fashion blog? I find it pretty ironic that what I lack in the fashion department, “B” more than makes up for it. She totally gets it, or at least it appears that way (who am I to truly judge given my previous statements). She received a set of paper dolls from us last year, and they are by far one of her most favorite things to play with. It came with a book of 100+ outfits and accessories. “B’s” favorite thing to do is to line up all of the outfits (somewhat typical behavior for kids with sensory difficulties to try to control and organize their environment) and coordinate different accessories to match. The different combinations she comes up with astound me! It’s like I’m looking at clothing and colors models would wear in fashion magazines! It also makes me wonder if “B” will always be able to wear the things she likes with her body’s full cooperation.

I think because I lack such a sense of style, I try to make up for it when I pick out my kid’s clothes. I buy cute and trendy, and I tend to forget about comfort. “B” especially has a need for comfort. About 3 weeks ago, I took the girls down to my sister’s to have photos taken. It never dawned on me to think about comfort when picking out “B’s” clothes. For Sunday School that morning, I picked out a pair of khakis and a bright pink top. “B” loved the top but totally freaked out on me when I put on the khaki’s. She started sobbing and kept saying, “I don’t want to wear these!” When I asked her what was her problem, she exclaimed, “I can’t see myself in these pants! I don’t like the color.” I stood there dumbfounded. She totally was freaking out about the coloring making her appear naked, or like she blended in to her own skin! For pictures that day, I got “B” dressed in a really cute beige sweater. Again, she freaked out and started bawling. This time it was because the sweater was rough and scratchy (Really, it was just line dried so a little stiff).

I had to stop myself and remember that kids with sensory issues aren’t reacting this way to be difficult or fashionista divas. She was genuinely upset with how her body felt in the clothing she tried on. She also feels this way about certain shoes, socks (they have to be low-cut), coats, shirts, and pants. She prefers cute/comfy sweat pants or leggings to jeans.

Kids with Sensory Processing Disorder (SPD) often have a sensory aversion to new/stiff clothes or clothes with various textures. Some kids with SPD have an extremely hypersensitive sense to smell, cannot handle certain smells, and will refuse to wear clothing before it is washed. Some don’t like the feel of shoes and socks on their feet and prefer the feeling of walking around barefoot. Many parents of kids with sensory difficulties find themselves cutting the tags out of their child’s shirts (Thank goodness for the clothing manufacturers who now make tag-less shirts). There are also kids with hypo-sensitive responses to tactile information. Please visit the following page for more info on tactile defensiveness and SPD http://www.sensory-processing-disorder.com/tactile-defensiveness.html.

Going back to picture day, I tried to really listen to what she was saying. I also realized to keep her in clothes that were extremely uncomfortable would not help her attitude during pictures. We compromised. I found her a fashionista diva outfit she loved and was quite comfortable, and the pictures of her and her sister did turn out pretty darn cute 🙂

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“Oh Where is My Therapy Brush?”

I have two girls with a lot of hair! A hairbrush in our house is a MUST have! I try to keep them in central locations because if they go missing I go a-wall! That being said, I never thought I would go ballistic when “B’s” therapy brushes go missing. That’s right, I said therapy brushes! We have a lot of brushes to keep track of in this house and as important as I find the hairbrush…for “B,” the therapy brush is 100x’s more essential.

I know many of you are asking yourselves, “What is a therapy brush and what in the world do you do with it?” The therapy brush is a soft bristle surgical brush. See the picture insert of “B’s” therapy brush:

“B’s” Occupational Therapist (OT) recommends a strict sensory diet that consists of brushing her 3-4 times per day. “B’s” brushing schedule is once in the a.m., one in the p.m., after supper, and right before bed.

The brushing program is designed to provide kid’s with sensory difficulties much-needed deep pressure input and helps them self-regulate (filter in or let out the many different types of sensory information). According to “B’s” OT (who’s been servicing kids for over 20 years), brushing is extremely calming for kids with sensory issues. She also says that many of the children she sees, who follow a strict brushing “diet” @ home, show remarkable improvements with emotional meltdowns and overall eating progress.

Does it really work? There isn’t much scientific research out there, but many OT’s and parents of children with sensory difficulties will say it does. I know we’ve seen progress over the last couple of weeks. Her emotions are more in check, and she is asking to try new foods! Last week, she came up to me and asked if she could try a bite of my pecan pie!!! A huge accomplishment for someone who has never tasted pie in her entire 4.5 year old life!

The biggest eye opener for me, came last week. I asked “B” if she could tell me what brushing felt like. She gave me a pretty insightful response:

“When you don’t brush me, my body feels hard and tired. When you brush me, my skin gets soft and wakes up.” That response alone makes me feel like it’s worth it to keep searching for those small therapy brushes around our house 🙂

If anyone would like to read more about the brushing program. Feel free to check out the following link http://www.ot-innovations.com/content/view/55/46/

*Remember the brushing program should be introduced by a trained OT. To do it w/o proper training, could cause extreme discomfort for certain individuals.

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Just Eat It…

If you know my husband at all, he LOVES Weird Al Yankovic and a certain song comes to mind when dealing w/ “B’s” eating issues (Recorded to the tune of the song “Beat It”):

Don’t want to argue, I don’t want to debate
Don’t want to hear about what kind of food you hate
You won’t get no dessert ’till you clean off your plate
So eat it
Don’t you tell me you’re full
Just eat it, eat it, eat it, eat it…The song continues. If you’re interested, you can look it up on youtube.

The words to this song is criticism we face from people everyday. Heck, before I knew what I was dealing with we tried every parenting trick in the book.

  • We bribed
  • We forced her to sit @ table until she tried a single grain of rice or one kernel of corn (followed by insane amounts of gagging)
  • We put her in time out
  • We encouraged and jumped up and down when she did try that one grain of rice

The tantrums that ensued broke our hearts, and we knew we couldn’t continue. I knew in my gut something wasn’t right, but I had nothing to compare it to.

Then, B’s baby sister came along. All of a sudden, we knew what “normal” eating was. At two, her sister is definitely going through the picky stage; however, she also is eating everyday toddler foods like hot dogs, rice, mashed potatoes, cheese, taco meat, goldfish crackers…. The list is endless! Her sister will refuse to EAT veggies, but she will also play w/ them on her plate and touch them without shrinking back in fear. She goes through cycles where one day she won’t touch yogurt, but a week later will eat GoGurt every day.

How do you define picky vs. a food aversion that needs professional help? Lisa Lagrou created a very short yet comprehensive list that spells out the differences between the two. Please check out her article @ Picky Eater or Problem Feeder.

  • “B” does not eat anywhere close to 20 foods.
  • She used to eat foods like applesauce and plain Cheerios. She has not tried them or re-introduced them into her diet since she was 18 months old.
  • “B” avoids foods w/ a lot of different textures. Casseroles, soups, tacos…
  • Foods that have a wet consistency are way too overwhelming (applesauce, cheese, musk melon)

The last component of Lisa’s list is key. It takes a problem feeder more than 25 steps to incorporate a new food into their diet. 25 steps people to introduce one new food! That is not being picky! That is a challenging level of homework for a 4.5 year old. I’m so proud of how far she’s come, but we still have a long way to go.

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In the Beginning…

So, every journey has to start somewhere right? For those of you who are not familiar with where we stated, I’m going to take a moment to fill you in.

“B” was your typical first-born. She was born @ 37 weeks; healthy and cooperative as far as newborns go. Breastfeeding was a little difficult @ first, but after a couple of weeks she seemed to have it down. Thinking back…transitions were always rough, but when aren’t they for newborns? Getting her to take a bottle was very challenging, but eventually we worked it all out.

“B” was around 4 months when a good friend of mine noticed a blister on the inside of “B’s” lip. Being naive, I assumed it was a nursing blister. I took her to the fill-in doctor (her regular physician was out of town) who turned out to be a Godsend! He referred us to Children’s Hospital where we found out she had a hemangioma. The blood vessels in her lip didn’t form correctly. Usually they let them heal on their own, but they didn’t want to mess around with her lip in case it would interfere with her eating (Oh, the irony). We went ahead with a series of steroid-injection shots to try to shrink it. We found out months later none of this worked so, we decided to go ahead with surgery. A week shy of her one-year-old birthday she had surgery to remove the hemangioma.

Why the big medical history? “B’s” therapists think that this is a big part of her eating issues. People poking/prodding and shots in her mouth right around the time she started baby food. Anything’s possible.

  • Around 8 months, “B” refused a long list of baby foods. She basically only ate stage 1 fruits. Anything else was a lost cause.
  • Texture appeared to be a HUGE issue for her. Mashed potatoes? Forget it! Cheese? Absolutely not! Noodles? Never made it past her lips.
  • Any new table food led to constant gagging. This continues 4.5 years later.
  • Just the smell of meats besides Tyson or McDonald’s Chicken Nuggets (Why is it that almost all kids can eat minced, breaded meat?) sent her into an emotional melt-down.
  • The way foods looked would cause her to leave the room or burst into tears.
  • Touching food that wasn’t dry or crunchy would send her into a panic.

I know so many people who have said or want to say, “She’s just messing with you, and you guys are falling for it.” As frustrating as that was for me to hear back then, when I hear it today I just want to drop-kick them 🙂 Actually, that’s when I try to educate. Lost cause or not, I have to stand up for my daughter.

Every story has a middle. We are smack-dab-still-in-it. I’ll save my next blog entry to explain to the skeptics how she and other kiddos like her are not just picky eaters!

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For the Love of Food!

“I just wish she would eat!” I’ve said that more times than I can count. After struggling 4.5 years to get our daughter “B” to eat typical “kid-friendly” foods and failing miserably, I’ve decided to create a blog and document the ups/downs and ins/outs of our sensory adventures.

I know I’m not the only parent out there who’s dealing with their kiddo’s eating issues. I’ve talked to a handful of you in the last couple of months. I’m hoping that through this blog, I can share what we go through on a daily basis. Don’t get me wrong. It’s not all crazy bad. Once in a while, we do see some puppies and rainbows 🙂 I’m maybe even hoping I can encourage the desperate parents, and educate the uninformed about the sensory challenges we deal with everyday.

We love “B” very much, and we certainly wouldn’t change her, but sometimes it’s nice to lay it all out there. Especially on the days when I’m ready to go postal on my husband after dealing with those extra special quirks 🙂 I hope you’ll join me on my new adventure. I have no idea where it will lead, but I think I need to type it out simply to help me laugh, appreciate, and RELAX!

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