Speech and the Spelling Bee

by Karla Barnett on February 17, 2016

Last summer, I was looking through the listings of camps for JB and I came across an in-home speech therapist. Immediately, I reached out to Ms. Carol from Integrated Speech Therapy Solutions and felt this will be a perfect fit for him. She asked all the right questions and her approach was exactly what we needed.

Typically, when we went to speech, it consisted of an evaluation, followed by sessions that yielded very little progress. I explained to her the areas we were focusing on and the goals my husband and I, as well as previous speech therapists, had established. With that info, Ms. Carol developed a phenomenal plan. As stated earlier, the typical process for speech is an initial evaluation, followed by scheduled speech appointments. The process Carol uses consists of the following methodology:

What I loved about Integrated Speech Therapy Solutions was that she came in with a solid plan and immediately started working on solutions. He (Jonathan) was totally engaged and eager to work hard. After each session, she provided me with a comprehensive summary and home work. He now has many methods of effectively communicating. One method, that he started on his own, is spelling the words as a reinforcement. If he feels you don’t understand him, he will spell or write out the words and then repeat it back to you. We found that he is a great speller! One day my little man will win a spelling bee!


JB’s feeding journey and the power of prayer!

by Karla Barnett on February 3, 2016

JB is an EXTREME picky eater. He eats specific types of crackers, yogurt, pretzels, nutrigrain bars, milk and water. I have taken him to an occupational and speech therapist to address his feeding issues but in order for the therapy to be effective, you are required to carry over the learning’s at home. It’s no different than the requirements to build muscle, you have to work at it. Working on his feeding issues at home was hard for me because it was such a struggle for him. He would break down in tears and the process felt uncomfortable for me and him. The introduction of new foods is a very frightening experience for kids with feeding disorders. I would see the fear on his face each time we tried a new food.

In November 2015, during one of our nightly praise and worship sessions, I completely broke down. My husband asked me what was going on and I shared with him that I felt like a failure as a mom. I’m taking the easy way out by letting JB eat the foods that he is comfortable with instead of working on the introduction of new food. We made a commitment to work on his feeding issues and started with bread. In an effort to not overwhelm him, we sliced the bread into four square pieces and asked him to take a small bite. My daughter, husband and I cheered him on, offering constant positive reinforcement. It took 30 minutes for him to take his first bite. You could see that eating this one bite of bread was very uncomfortable for him. He finished the small square and we danced, cheered and gave him praise. We were pretty consistent with working on his feeding for 3 weeks, then we went back to the normal routine….crackers, yogurt, nutrigrain bars, milk and water.

I needed HELP. I was feeling overwhelmed and realized I needed an intervention so I decided to turn everything over to God. I prayed very specific prayers and renounced feeding disorders on a daily basis. I even had JB do the same thing. The second week of January, JB asked for a piece of bacon for breakfast and my husband gave it to him. He ate the piece and asked that his dad get me on video chat so I could see the amazing milestone. Mind you, I had to pull over as I was driving to work. Later that evening, he went to the fridge, pulled out the bacon, asked for several pieces. In the last three weeks he as tried, cranberry and apple juice, a new type of yogurt, smoothie, waffle and ice cream. This morning, he packed a lunchables and I received a praise report from his teacher stating he ate all the cheese and most of the turkey………HUGE!!!


Angie Voss Interview~Occupational Therapist

by Karla Barnett on March 6, 2012

I will be conducting interviews with health care professionals and therapists. The interviews are based on questions I have had in the past as well as other moms. The goal is to provide additional resources for reference.

Angie Voss, OTR/L is a registered and licensed occupational therapist with over 20 years of experience working with children with sensory differences. She is the owner of Sensory Solutions, PLLC located in Boise, Idaho. Angie’s scope of practice also includes extensive experience as a presenter of sensory workshops for parents as well as sensory training for various organizations and businesses including educators, therapists, physicians, and other medical professionals. Angie has published an information based brochure to promote sensory awareness and understanding with emphasis on early intervention, and sensory signals and red flags in infancy.

She has published two books: “Understanding Your Child’s Sensory Signals” and “Your Essential Guide to Understanding Sensory Processing Disorder”. Her third book will be released on March 16, 2012 “The Survival Guide for Travelling with a Sensory Kiddo”. She is the owner of UnderstandingSPD.com, a membership and resource based website with a focus on promoting awareness and respect for sensory processing disorder (SPD).

1. What are the causes of Sensory Integration Issues?
The causes of SPD are variable and often of unknown etiology. The exact cause has not yet been identified. Research suggests a few possible links: prematurity of birth, prenatal or birth complications, environmental factors (such as drug or alcohol use during pregnancy or sensory deprivation in an orphanage), and also a possible genetic and inherited link.

2. What advice would you give to parents who just received a Sensory Integration Diagnosis?
I recently wrote a comprehensive blog post on this topic specifically. Please refer to this article for in depth information and advice. http://www.understandingspd.com/1/post/2012/01/my-child-has-sensory-processing-disorder-spdnow-what.html

3. What techniques would you recommend to drill down and determine which therapy resolves a specific sensory issue?
I truly believe and have witnessed over and over again…the success to sensory integrative treatment and overall progress and success is the daily carry over of a comprehensive sensory diet, a sensory enriched life, and respecting a child for exactly who they are and the sensory signals in which they present to you.

4. Based on the severity of the issues, which sensory areas should you address to yield the best benefit for your child? For example, if a child has vestibular, proprioceptive, oral defensiveness, should you work on vestibular prior to assist with feeding issues?
I discuss this topic in “Your Essential Guide to Understanding Sensory Processing Disorder” in Chapter 3 : The Power Sensations. Working on the sensory foundation skills of vestibular, proprioceptive, and tactile input are actually helping the entire nervous system process more efficiently and effectively. These 3 senses in turn are considered the power sensations…in the skyscraper of life and development, without a sturdy, stable, and strong foundation, you will see delays, deficits, and difficulties in many areas.

5. How do you manage feeding issues and oral defensiveness?
I discuss this topic in both of my books as well, going over specific sensory signals related to oral sensory differences, as well as a chapter in “Your Essential Guide to Understanding Sensory Processing Disorder” on oral sensory needs and differences.

6. What issues do Sensory kids have with potty training?
Quite often sensory children under-register sensory information, specifically proprioception. The interoceptors, which are sensory receptors in the gut and internal organs, are like proprioceptors. The interoceptors register the feeling of needing to go to the bathroom as well as other internal sensations such as being hungry or full. Other issues that play a part in potty training can be the different sensations which go hand in hand with switching from diapers to the use of the toilet. And sensory kiddos are often resistant to change, where as potty training is a HUGE change and can be a challenge simply for that reason.

7. Discuss the importance of a daily sensory diet.
An enriched sensory diet is crucial for all of our brains for self-regulation, adapting and processing sensory input, and for children with SPD it is just as important as food. The sensory nutrition is essential for development.

8. What sensory tools should parents have in the home?
Here is a list of the essentials:
• An indoor swing
• Something to bounce on such as a hippity hop ball, mini-trampoline, or BOSU ball
• A sensory retreat
• A large therapy ball
• Weighted blanket or compression clothing
• Variable items depending on the child’s sensory needs…oral sensory tool, fidget toys, noise cancelling headphones, sunglasses or large brimmed hat.

9. Discuss the benefits of early intervention

Prior to age 3, the brain has a great amount of neuroplasticity…this is when it is ideal to help the brain hard wire and learn to process sensory information correctly. As the child ages, this becomes more and more difficult to actually change the brain and how it processes information. Research suggests after approximately age 10, it is extremely difficult to change how the brain processes. At this point, the focus of OT becomes teach coping skills and sensory strategies to help a child throughout life.

10. How do parents with sensory kids educate family, doctors and educators on SPD?
I have created free printable handouts just for these scenarios and they are available on my website. I suggest bringing the appropriate handout to doctor’s appointments, your child’s teacher or daycare provider, etc. And there are also handouts for dentist visits and hospital procedures. The handouts promote awareness and understanding as well as provide sensory recommendations for the presented situation. http://www.understandingspd.com/request-for-diagnosis.html

11. What advice would you provide parents who sit their sensory kids in front of the TV or allows them to utilize electronic devices because it keeps them calm?
I recently wrote an article on this as well. http://www.understandingspd.com/1/post/2012/02/little-house-on-the-sensory-prairie.html

12. What was your greatest accomplishment as an Occupational Therapist?
I have always been told I have a gift in how I connect with children and understand their sensory differences and sensory signals. There is no greater feeling as an OT then when you connect with a child who is often misunderstood and judged and not accepted for exactly who they are. This is without a doubt my greatest accomplishment.

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How does it feel to have Sensory Issues?

by Karla Barnett on February 8, 2012

Have you ever wondered what it feels like to have sensory integration issues? I always wondered what my son goes through on a daily basis, so I decided to attend a sensory conference . Understanding the conference would merely provide me with a peak under the tent and not the actual feelings. The conference covered an in depth overview of sensory integration and actual simulation. During the meeting, the presenter conducted two simulation exercises to provide the participants with an idea of what our kids experience specifically. The first simulation, we were required to complete a spelling test. Sounds simple, my initial thought. The presenter kicked off the test in addition to a series of distractions including noise, individuals walking around touching us with feathers on the neck to simulate a shirt tag, bubbles, bells ringing, papers crinkling, etc. The second exercise was a math test and we were required to listen to a CD, follow directions and complete the test. Each question delivered was accompanied by static and a host of other distracting noise. Throughout each exercise, I felt extreme frustration! The constant distractions made it difficult to complete the assignments. The feelings we felt is just a sample set of what our sensory kids experience. The conference provided me with a baseline idea of what Jonathan goes through. It made me realize how important a daily sensory diet and consistent regulation dictates a good or bad day.

I recently came across and excellent article written by Carrie Fannin, owner of Sensory Planet. The name of the article is “What a Child with Sensory Processing Disorder would tell you if they could.” Many of the points mentioned was a clear description of my little guy. I will continually reference this article whenever I get frustrated with my son because he is not focused on a task I want him to complete or when he has meltdowns . If I want to work on specific things with him, I must ensure that he is regulated and calm prior to. I have to truly try and understand his frustration, yet identify sensory issues versus behavior. I have included the article written by Sensory Planet and I hope you find this beneficial.

1. I have EIGHT senses, not five. Each of them affects the way I feel and learn and interact with those around me.

2. I must have a calm mind and a calm body in order to learn. I have a bright mind that becomes lost and confused with a traffic jam of input from my sensory system.

3. There are many red flags to my disorder that are often-times unintentionally disregarded: I’m not being a “big boy” or girl for not crying after that “huge fall” – I may be unaware or unresponsive to pain or touch. I may be very bothered by overcrowded areas, or my clothing may bother me to the point of a meltdown. I may avoid touching any thing “messy” like glue, mud, or even my birthday cake! Noises may bother me to the point of a full-body “startle”, or my hands may “fly” up to my ears to cover the sound. It may be hard for me to wind down to go to sleep at night; or I may never nap during the day or sleep through the night. I might chew on my clothing at the sleeves or collars excessively. All of these things can indicate a body that is having trouble staying regulated.

4. Meltdowns are not the same as a tantrum. A meltdown is an outburst of rage or frustration caused by stress (i.e. caused by sensory overload) A meltdown is not a tantrum. A tantrum is intentional behavior for the purpose of manipulation.

5. I do best when I have a routine; it comforts me and gives me something that I can count on when most of the time everything in my day feels out of control.

6. Transitions are hard for me (and the words “no”, “don’t”, and “STOP” are all transition words).
7. A Sensory Diet is an important part of my day. Every Day.

8. If I “could”, I “would. You can’t coax a sensory sensitive system to do something you want it to. If I’m having a hard time with my clothes, or the weather, or the noise, or the food in front of me, WORDS usually aren’t the answer to make things better for me.

9. I am brave. I face a world that doesn’t understand me every day.

No matter how frustrated we as moms may feel, we will never understand what our sensory kids go through on a daily basis. The article provided me with a renewed perspective.


Today was a good day!

by Karla Barnett on January 29, 2012

A friend/neighbor has an amazing blog entitled Everyday Highs and Lows. She writes about the ups and downs she experiences raising twins, one with Type 1 diabetes and one without. We went to breakfast a few weeks ago and had the most amazing conversation about both of our situations. We had no idea what each other was going through, with our sons, yet we live right next door. Although our situations are extremely different, we totally related to one another. I was surprised to discover that we shared many of the same feelings.

She has always extended herself to me, including us on play dates and offering to keep my kids. We went on play dates, but on many occasions ended up leaving due to a meltdown. I never took her up on her offer to keep Jonathan because I didn’t think she would understand his quirky behaviors, but honestly, I did not want her judging him. The reluctance I felt was not specific to her, but to anyone who took care of Jonathan and this included family. I would always become extremely stressed out whenever I had someone watch my little guy. What I have found in my feighbor (friend/neighbor) over the years is that she does not have a judgmental bone in her body and is the type of person that you want to have in your friendship circle.

The title of her blog describes my life to a letter. All the blogs I have written thus far have pointed to everyday lows. Despite the fact that I was unable to attend church this morning because of sick kids, I consider today as one of my everyday HIGHS. I had detailed out the entire morning to include learning/therapeutic activities and unstructured play. I felt positive today would be a productive for my son. The question is will he cooperate with my plan?

What I have noticed as of late is that Jonathan has been spelling several words. His pronunciation of words improves when spells the word out first. The first speech activity I had planned for him was to work on his expressive language. We went through 40 cards/puzzles, first spelling the word, then pronouncing while pointing to the picture. Next we went through the same set of cards/puzzles, spelling the word and he had to provide me with pronunciation as I covered the picture. He nailed 98% of the words and the pronunciation significantly improved by the time we reached the end of the exercise. He was so proud of himself and me of him!!!

It was time to move on to our OT activities which included working on fine motor(writing, threading beads, squeezing play dough, cutting vegetables, completing puzzles, placing rice pieces in a medicine container) and gross motor (jumping in the bounce house, pushing heavy cart around, pushups, sit ups, swinging and playing on an exercise ball). He cooperated with my plan, as I made sure he felt as if we were playing versus working. Once we completed our final OT activity, he wanted to go back to work on spelling and pronunciation. I pulled out the iPad, fired up spelling and flashcard apps and back to work we went.

Jonathan is a visual learner and I always need to ensure that the tools I have in my box keep him challenged! What he is accomplishing at age 4 is amazing. Continuous education and understanding his learning style will allow him to reach potential beyond my wildest dream!!! The sky is the limit for son!

I do realize each day will not go as smooth as today, but that is all a part of the journey. I can plan on the exact same activities tomorrow and he may not cooperate as he did this morning. No matter what happens the balance of the day, I have the morning to keep me on my Everyday High!!! Today was an amazing day!

What are some of your Everyday Highs and Lows?


60 visits…..are you kidding me?

by Karla Barnett on January 22, 2012

For the life of me, I will never understand how or why insurance companies limit the amount of therapy visits a patient can receive. What is the number based on….other than the old might dollar!!! Therapy services allocated per year, at least in my case is 60 visits. The number includes occupational, speech and physical. If my son required all three, which he did at one time, he is only covered 20 weeks out of the year. What am I suppose to do the balance of year? What are my options?

• Cover the cost out of pocket at $1,000/week
• Determine which therapies are most important and attempt to perform the others on my own

Not only does the insurance company dictate the # of visits but they also determine if the treatment plan is required. Keep in mind, they have never seen my son, nor do they know his history but I have to fight tooth and nail with a customer service representative, who is not qualified to make the determination. As if I don’t have enough on my plate, I have waste my time pleading my case for his treatment. Last year, the insurance company tried to deny all of his therapies indicating they were not medically necessary. Really????? He has very little speech and struggles with fine/gross motor skills and has sensory issues. I consider those reasons medically necessary. Oh and by the way, I have a script from my doctor deeming the treatment medically necessary. I believe that trumps your decision. What a nightmare!

I challenge anyone from the insurance company to stand in my shoes for a day and then provide me with their decision. I’m sure if a few of the executives had special needs kids, requiring therapies, the criteria would be a little different. Don’t get me wrong, I totally understand the business end of things but not when comes to interfering with my kiddos progression.
I do realize that I am one person but this is a hot topic for me and MANY others and I plan to add it to one of the items I add to my list to take on!!!!! As always, I’m looking for your feedback and solutions?


Picky Eating SAGA!

by Karla Barnett on January 17, 2012

I really want my son’s therapist to move in with us. Meal time has truly become a stressful time. While she makes feeding look easy, I continue to struggle and, literally, want pull my hair out. She is stern, compassionate, structured and persistent. Ana is going above and beyond to provide me with every tool and technique I need to make progress. A good therapist specializing in severe feeding and sensory issues is key to making your child successful!

Today was the first day I was able to sit in the observation room, and watching her go through the process made me laugh and almost cry. We video recorded today’s session, and plan to watch the footage with Jonathan. In addition, she created a document spelling out the techniques. One thing we were doing wrong is introducing too many foods and utilizing the process at breakfast, lunch and dinner. The therapies will now be conducted between meals and snacks. We have selected four new foods to try until he comfortably eats each one.

During today’s therapy, he almost ate an entire small container of applesauce and a few bites of deli turkey. He had an easier time with the applesauce than with the turkey. When she presented him with the turkey, I could see the fear in his eyes as he struggled to bite a small piece. He continually rubbed his head and pushed it away. The turkey made him uncomfortable and FRUSTRATED.

Since we began implementing the process, my son has dropped yogurt from his food repertoire, which means he now only eats pretzels, Nutri-Grain bars and turkey bacon. I’m thinking he is rejecting the yogurt due to a recent change (removal of high fructose corn syrup in the yogurt formula. One step backwards, but, hopefully, two steps forward. I continue to do my research on oral defensiveness and really have a problem putting my arms around this issue. How can food be the enemy? I’m looking forward to him telling me how it makes him feel one day.


Mommies little helper!

by Karla Barnett on January 12, 2012

Ever since we decided to take on picky eating and utilize the tools and techniques provided by Jonathan’s therapist, we quickly realized that we have additional help. As I explained in an earlier post, the process consists of going through a food hierarchy which will eventually allow my son to be comfortable with new food choices. With each new food choice, the goal is to get him to touch, lick, kiss and eat. Sounds simple enough but it’s a struggle if you have sensory issues and you view most foods as the enemy.

My 23 month old daughter became quite interested in this eating technique. We observed her touching and kissing her food when we prompted her brother to. After the first full day of utilizing the feeding process, Jazzy picks her waffle and hands it to her brother and said, “Kiss the waffle Jonathan”. By the end of the meal, she was placing the rest of her food on his plate saying, “here you go Jonathan”! Now while we thought this was a nice gesture and realized she was trying to be helpful, Jonathan did not quite see it that way. Her assisting us in the process made him extremely frustrated. He perceived it as her teasing him.

It has been a full week on the new eating plan. I must say, crackers are still out of the meal plan and we will now utilize them as a reward. He has touched and kissed 5 new foods! I spoke to his therapist and she suggested narrowing down the food choices to 5 instead of offering him something new each meal (She is able to successfully get him to try new foods). This will allow him to become comfortable with the texture and flavors. If he eats the food choices offered, he will be rewarded with a cracker. Next week, we will begin videotaping his therapy sessions and watch each session as a family.

Today, day seven, has proven to be the most frustrated I have seen him since we’ve started. I have to keep reminding myself that his eating will improve, and I will look back at these times and realize it was a step we had to conquer on our journey.


My picky eater surprised me!

by Karla Barnett on January 11, 2012

Just when I was feeling a little defeated, my son gave me the best surprise this morning. I decided to try turkey bacon for breakfast. I was expecting a fight but what did I get…eating with a smile!!!! It was obviously good to him as he was humming after each bite. To top the morning off, he requested two additional pieces. Talk about a mommy on cloud nine and performing the happy dance for my son!!! I’m looking forward to the day when my little man eats a plethora of new foods. Day seven of the picky eater battle has proven to be victorious!!!!


That was then, this is now!!

by Karla Barnett on January 8, 2012

Connecting with other moms, on a similar journey, has been extremely therapeutic for me. I once had a mother tell me having a child with special needs is like being in a secret society. Initially, I did not agree with her, but the more I thought about it, I changed my opinion. Think about it, a majority of your friends don’t have the type of issues we deal with!

1. Weekly therapy (occupational, physical, speech and sometimes behavior)
2. Integrating therapies into your life
3. Sensory integration issues (vestibular, oral, tactile, etc.)
4. IEP’s
5. Consistently rejecting friends and family’s invitations because you don’t want to explain your child’s quirky behavior
6. The list goes on!

I’ll never forget the first person I spoke with early on in my journey. Not a mother, but a man, and he was my boss. I never imagined discussing my fears with him and thinking he would understand, but he did. I could not get my arms around having a baby and having him immediately taken away from me to fight for his life. He was 2.5 lbs and extremely fragile. His hand fit in my husband’s ring and his skin was translucent. Come to find out, my boss’ daughter had the same experience with her child, and he was an amazing source of support for her. He arranged a time for me to speak with his daughter, and for a brief moment, I felt relieved. I’m not alone! A day later, it was back to reality. I visited the NICU for 7 grueling weeks, living each day in a FOG! I never told my boss what his support meant to me. I hold a special place in my heart for him, because for a period of time, he was my main support!!!!

It took me a few years before I actually connected with someone else that I truly felt comfortable with, and sharing my innermost feelings about the journey. I actually met her while at a therapy session, and I approached her because she was crying. I did not need to know why she was crying. The only thing I wanted to do was to let her know that she was not alone and it’s ok to cry. This particular day, her son was struggling through therapy and, at that moment in time, she felt defeated. I totally understood !!!!! We soon became friends, and when I found that she could relate and reciprocated similar feelings, I felt a huge weight lifted from my shoulders. I had finally found someone who truly understands what I’m going through.

With the little support I had, most days I felt as if life was just passing me by and I merely existed. Yes, I had the full support of my husband, and he is amazing, but he is not a mother!!! I soon began to rely heavily on God. I truly believe God selects you for a journey because He is trying to birth something in you and establish your purpose. Prior to this journey, I had very little faith, and I now know that He placed me on the journey to increase my faith. Did my faith level increase immediately? Absolutely not! I can honestly say that my faith level did not change until the 3rd year into my journey. It wasn’t until I decided to allow God to take charge, and allow Him full access, did I see the progression in my son.

Who is your support and how have they helped you get through your journey?