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.

{ 12 comments… read them below or add one }

Dawn Harris February 9, 2012 at 8:15 am

Great article…thanks for sharing. My little guy has major sensory issues as well. These points are all very true! Definitely renewed my perspective today.

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Karla Barnett February 9, 2012 at 10:22 pm

Thanks Dawn! Sometimes we need a reality check. Our little people endure a lot and although we get frustrated we have to think about what they go through!!! Thanks for you post!

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shannon February 9, 2012 at 11:07 pm

Thanks for the post. My daughter is very high functioning and doesn’t really have a diagnosis but she has issues with textures and touches and sound among others. She had to have blood drawn recently and I thought it was over and she would agree it wasn’t that bad. I was surprised when she was still silently crying over a 1/2 hr later. She was able to tell me that when the needle went in she felt it and it hurt, but it still feels like it is there, the hurt doesn’t go away for a very long time. She further explained that when she touched a texture that “hurt” her (though super soft to me) she had to stop shopping because the feeling didn’t go away for a long time and therefore she couldn’t accurately gauge how anything else felt. It broke my heart but helped me to finally understand more about what she really experiences.

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Karla Barnett February 10, 2012 at 6:57 pm

Shannon, your comments is timely. I took my little guy in for blood work today and he reacted the same way. Grant it, the medical assistance had to poke him three times but he cried for about a half hour and was in pain for about an hour. It really helps to understand how they feel. Thanks for your comment.

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Karen February 15, 2012 at 5:00 pm

This is an excellent post! I’m the mom of a child with autism & sensory issues, and I also have lifelong sensory issues, so it’s easy for me to understand my son’s perspective. I recently wrote a short piece explaining how to manage sensory meltdowns, and it may be useful to you: http://blog.friendshipcircle.org/2011/12/13/26-sensory-integration-tools-for-meltdown-management/

If you understand how to manage sensory issues, you can do just about anything as a family. My son attends noisy birthday parties, eats lunch in the school cafeteria, rides roller coasters, has blood tests & hair cuts with no tears, etc. It’s all about balance, awareness and tolerance.

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Karla Barnett February 16, 2012 at 9:08 am

Karen thanks for the post and your link to your blog. I have everything listed on your blog as part of our sensory diet at home and away except for messaging, the oils and body sock. What is a body sock? I need to pinpoint with of the items in his sensory diets impacts the need. Still haven’t nailed that one down yet. Any tips?

How old is your son? Did you find the sensory issues became better with age?

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Karen February 16, 2012 at 9:40 am

A body sock is a stretchy fabric tunnel that fits your whole body: http://www.amazon.com/Body-Sox-Medium-47-27-27L-27-27-27W/dp/B000ITCZ1A

The hard part about creating a sensory diet is that some things work on some days, other things work on other days. There’s not going to be one surefire hit every time. You need to teach your child to seek out or request appropriate sensory input. My son is 10 years old now, and he will go to the mini-trampoline or request his weighted blanket when he needs it. After all, he’s the only person who really knows what he needs!

Another funny thing about hypersensitivity is that sometimes when one sense is affected, you can alleviate the stress by treating another sense. If light is too bright, try reducing the noise level or doing proprioceptive exercises. If it’s too noisy, chew on some dried fruit or jerky. Of course, sometimes it’s necessary to bail on a noisy environment and go somewhere quiet. It’s not possible to control all aspects of the sensory environment at all times, but you can control most of it most of the time.

We’ve worked on de-sensitizing our son to various inputs and phobias over the years, so I know it is possible to reduce hypersensitivity over time. But I’m 40 years old and I still have to wear sunglasses even on cloudy days, and I’ve always been highly sensitive to noise, texture, flavor and movement. Some food textures still make my son gag. The goal is not to eliminate sensitivity. The goal is to increase quality of life and ability to function in everyday life.

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Karla Barnett February 16, 2012 at 12:26 pm

Karen,

Thanks for the link. Just ordered a Body Sox for my little guy!! You are a walking resource and I REALLY appreciate your feedback!

I was thinking about joining the Friendship circle. How do you like it there?

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Karen February 16, 2012 at 12:49 pm

The Friendship Circle is awesome for recreational programs, open play during weekdays and a sense of community with other parents. It’s been great for my family. But I also recognize that some children have a greater therapeutic need, and the Friendship Circle’s schedule may not work for all families – it’s connected with a Jewish organization, so it’s always closed for Friday evenings, all day Saturday and Jewish holidays. My family is not Jewish, but we have no problem working around those days that FC is closed.

You may want to look at some message boards or Facebook groups for adults with autism. These adults are an amazing resource for understanding sensory issues and divergent thought processes. That was very helpful to me when my son was little!

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Karla Barnett February 16, 2012 at 2:17 pm

Where did you take your son for music therapy?

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Karen February 16, 2012 at 9:17 pm

Our music therapist was Deb from Building Bridges in Plymouth. But I think it’s less expensive at the Autism Collaborative Center at EMU in Ypsilanti. Michael Brownell in Ann Arbor was also highly recommended to us. You can find a list of certified music therapists here: http://www.cbmt.org/certificant_search

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