The Joy in a Moment

I feel pretty good, but so jittery today. My heart is like a slow hummingbird in my chest. I look up at the sky and see all the grey and black, thick and fluffy, awesome clouds crawling over the sky and horizon and as I watch the rain fall... I feel peace. The sky is amazing with full black and dark clouds crawling and pulling themselves forward across the sky filling the air with thick grey shapes and tendrils. They appear to move quickly across the sky and like cotton candy float down into the atmosphere as they move. Some might say that today is a cold gray or dark day, but all I can feel is joy. I stand in the rain feeling the drops touch my face and slip down my cheeks as I look upwards at the brilliant shapes and patterns in the sky above me... and I just feel joy. It's been a long time since I stood outside and didn't feel rushed and pushed to accomplish things. Almost always I struggle with rain and dislike the feeling of water on my skin. But today, everything came together for that amazing moment of time. I feel really blessed and thankful today.

Do You have Sensory Problems?

I do... have for as long as I can remember. I didn't always understand why some parts of me were different from other people nor do I always understand some of the ways I respond now. Some ways that my body may respond to a stimulus I still do not understand... but I accept it and sometimes laugh about it... and sometimes cry about it... and sometimes I just shake my head and shrug. In the end, my processing challenges are a part of me and make me the unique and wonderful individual that I am. That said, I was in my thirties before I was even heard the term sensory processing disorder / sensory integration disorder and researchers are still trying to understand how these disorders work. I thought that I would take a few minutes to talk about the basic human sensory system and leave you with a small list of questions that you can read and, if interested, can use to look at your own behavior and responses to different stimuli and determine if you too, might have some sensory processing challenges. :)

When I was growing up, I learned about the five senses: touch, taste, sight, hearing and smell. The sense of touch as processed through our skin and taste processed inside of our mouths.... the sense of sight which is processed through our eyes and sound through our ears... and the sense of smell through our nose. And each of these organs sends the information to the brain for final processing so that we can use the information. In the processing the information is organized in the brain so that we can use it to make appropriate responses to external stimuli. For those with disorders of the sensory system, the organized information may not create the correct responses.... the child who reaches toward a snarling cat and is genuinely confused when the cat hurts it... the person in whom fear causes hyperactivity or out of control behavior, etc...

So let's start with some basic questions. Here is how the questions work. Each question should be looked at by thinking of how often you perform the behavior in question. The more often you do it, the more likely it is that your brain is having some difficulty processing the information in a 'neuro-typical way'. Is that a problem? Not necessarily... it really depends on how my your behavior in this regard affects your quality of life.

1. Do you prefer the dark, happily avoid bright light and feel happier in dim light? Do you find that you are bothered by light when others feel comfortable?

2. Is it difficult for you to accurately visualize images or objects in messy or cluttered backgrounds? Do you end up staring at objects overly long to process the information?

3. Do you find it more challenging or impossible to complete tasks with noise or music in the background? Do you find yourself easily distracted by noise or even seek out noise or make sounds simply to have noise around you?

4. Do you avoid noise or sounds? Are you slow to respond to sounds around you that are relevant and important... an inability to recognize what sounds are important and to block out sounds that are not?

5. Do you have difficulty processing really strong smells? An inability to smell odors that the people around you can?

6. Do you find yourself feeling large amounts of anxiety or anger when your expectations or your routine has to change? Do you find yourself doing tasks in inefficient ways because it feels more comfortable to you? Do you move from one activity to another not completing any of them very quickly?

7. Do you prefer to be alone? Prefer quiet activities? Quiet areas and places?

8. Do you have problems with textures in food and limit what you eat based on what the food feels like? Do you crave certain foods due to flavor or strong smells or will you only eat certain foods?

9. Do you have problems with touching or being touched? Do you react emotionally when being touched by people or things such as water, unnatural fabrics, etc.. or do you crave touch and will touch too much and too often?

10. If something touches you such as clothing, are you able to 'forget' the touch.... or do you feel the clothing and its touch all day in part of your mind? Do you go barefoot because shoes feel uncomfortable? Do you fill your hands with things so avoid people touching your hands?

11. Do you seem to have an awareness – or lack of awareness- to pain or temperature that is different from most other people? Can you injure yourself and find that the pain is not at the level that it should be for the injury? Do you feel comfortable in a snowy environment in short sleeves?

I could definitely go on and healthcare providers who try to help their patients with sensory issues will ask many more questions than this.

One challenge that comes with sensory problems is that as someone struggles with them and they find the way they respond is so different from other people, it affects the individual's emotional well being. People with sensory problems appears to be more likely to develop low self esteem and self critical behavior. They are more likely to exhibit socially inappropriate behavior as well as difficulty expressing emotions in a healthy way. The odds of having problems with anxiety are a lot higher in this population making a challenging situation sometimes worse. I will admit that I find it challenging sometimes myself.

This post is so basic that I beg of you to not make any diagnosis or take to much out of it. I just wanted to take a little time to introduce the topic to start a little basic awareness. If you want more information, please feel free to leave any questions you want answered in the comments or speak to a medical professional about your thoughts. Both of these diagnoses are still debated by healthcare professionals so if you would like more information, be sure to find a provider who has studied and has knowledge of both sensory processing disorder and sensory integration disorder and the nuances between them. Thanks for sharing. :)

A Temple Day

… and one that was amazing I might add! I am so excited to share it!

So last Saturday was set for a branch temple trip. A day that so many people were going to come down and watch a wonderful couple get their endowments and then the whole family would get their sealing. I agreed to come and watch children at the nearby church so that whole families could come and other couples could actually do endowments with each other instead of the more usual (one person stays home watching their children and the other gets to go to the temple.) When I agreed several weeks ago, I didn't really have any idea of the full emotional challenges that I would be hit with this week, but I actually should have known... any trip to the temple is usually preceded by challenges so that I have to really actively and painfully force myself forward and those challenges do not end until I get to the temple... or at least a few hours into the drive. This week was no exception... although I think that the challenges I have faced this week were a bit more than I have ever experienced and they never were truly able to be left behind this visit.

So after some initial difficulty of getting into the church building we got all the children in and set in the nursery and the gym. A few Kindles were passed around and my computer was happily enjoyed for a few games of 'Plants vs Zombies.' The younger ones came into the nursery and we found many toys and fun. I got to officially meet a new member of the ward and for the next few hours I lost myself in the task of watching several children – I think eleven at the highest count. Helpers came and went , but the children were a constant and they gave me so many laughs and so much joy. A few things really stick out about this time.

1. At one point early in the day I was asked a question by one of the sisters that I answered honestly, but with great difficulty. I was able to turn away to hide my distress and I think that I managed to actually hide most of it (I'm not foolish enough to think I hid all of it... I think that sometimes my pain seeps through my pores and is always visible no matter how much I try to smile) The second I turned and closed my eyes I was tackled by a beautiful child named Claire. She wrapped her arms around me in a big hug and gave me a kiss..... and then went back to what she had been doing. I am not sure why she did it, but it meant the world to me. I felt this outpouring of love and care that pushed the tears down brought a genuine smile to my face. I felt more confident and just took a deep breath and dived into the work with most of my soul and not just my body.

2. One of the younger girls asked me to help her use the bathroom. I walked to the bathroom with her and stood outside while she completed her business and when I walked into the room to help her finish, she gave me one of the most wonderful lessons I have ever received from a child. She carefully explained that some boys may look like girls... they might have long hair or wear earrings, but she knew a sure fire way to tell the different. See, girls ALWAYS use toilet paper when they use the toilet, but boys will only use toilet paper when they poop. So, she explained, if I am ever in doubt as to whether someone is a boy or girl... I can follow them to the bathroom and spy to find my answer. (I am still laughing about this!)

3. At one point , I was reading a book called “The Tawny, Scrawny Lion' out loud to a room full of children and one of them came and leaned up close. Her name is Kess and she was so interested and was leaning so close I thought she might climb into my lap at one point. I have never really spent any time with her before so it was nice to get to know her a little better on this trip.

After 2pm, I was able to head up to the temple and do baptisms. And to my surprise, even though I was over 1/2 an hour late and wasn't even sure I could sneak in... they were just starting! So I was able to change and join the group. This was the first time that Kess and her mother had ever been to the temple to do baptisms and I earned something really, really quickly... I am not the only person with severe sensory problems in my branch. The idea of total immersion was clearly fearful and terribly uncomfortable for them both. Both of them managed to do one baptism each and it was an amazing experience to view these brave women, struggling so hard to do something that other people find easy or take for granted. Baptisms used to be very uncomfortable for me with my sensory problems and I have really had to work with my body to make them something I can do and still feel the spirit. At one point when Kess was trying so hard to figure out how to do the baptism through her fear, I realized that I was praying and begging so hard for her to be able to conquer her fear for the few seconds it would take.... and I realized that everyone else was too. All the people waiting in the chapel were standing at the window watching, the men around the font, and the rest of us.... just silently pleading with the Father to help her. And she did it! She managed to do it and I am so grateful to have witnessed such a wonderful and brave act. I was so blessed to be there and I am so grateful for the examples that so many wonderful people give me.

After the baptisms and confirmations we started home. I was riding with some friends and they gave me a tour of Kittery and also took me to see a beautiful lighthouse... (I thought of you, Carolyn, as I looked at it. It was soo beautiful and so familiar... I realized it must be a very famous lighthouse because I think I have seen it on cards and some calendars as well.) Then I stayed over at their house in a wonderful cozy bed and slept better than I have in ages. All in all, an amazing day! Thanks for letting me share it. :)

In the Blink of an Eye...

A totally scary thing happened this afternoon. My husband had taken Bug up to town to do laundry and to take his service dog to the veterinarian. Everything went pretty well until at one point Bug's impulsiveness managed to override his rational thought and Bug jumped out of the car and ran across a busy parking lot towards the street. We are lucky as he was unhurt and was stopped by someone who recognized and 'caught' him. But that was seriously a close call.

Bug's tendency to run really seems to stem from his sensory problems. From the moment he could walk, he would run. (After all why walk anywhere when you could get there faster.) When he was around 3-5 years old, he could literally run for hours and I was a very fit individual then... exhausted, but fit. :) I remember one experience vividly in my mind when I was struck by the realization that my son's sensory needs were so high and severe. As a family, we were hiking in a park up a steep hill with a very strong wind that seemed to push us back down the hill. My husband and I would turn our faces and our bodies so that the wind didn't strike us directly and other hikers would do the same... Bug would face squarely into the wind and laugh as it pushed and pressed at him. His long curly hair flying straight back along with the ends of his jacket whipping in the breeze... and he was clearly not only enjoying the sensation but craving and needing it. I felt like he was trying to embrace the wind. The joy and satisfaction and almost ecstasy on his face was breathtaking to see. (And a good lesson on adversity as well.)

In some ways that period of time was easier as my husband and myself were always on the alert ready to run, stop, or tackle him. His impulsiveness and inexplicable running have faded with time as his sensory needs have become more controllable and integrated into his nervous system. And in some ways that has added more danger as we rarely have two people on top of him constantly and we as parents are no longer constantly on high alert- which is probably healthier for us... but not for Bug. It only takes a moment for the potential for life to change in ways that we do not want. One blink could be one blink too many.

Of all the blessings that I count at the end of my day, I am so grateful for the opportunity to spent the evening with my son- still safe and whole. I am grateful for a husband who does try so hard and is a great person and my friend. I am thankful to go to sleep with my family still intact and well. I am so grateful that my son really does seem to be well on the way to conquering his sensory disorder... maybe someday I can work on conquering mine. There are so many things to be grateful for. I am truly blessed.