Nails on a Chalkboard

Happy and loving life,
but with his finger in his ears

What is sensory processing? When Everett was first diagnosed, I had never heard of sensory processing issues or sensory processing disorder and certainly didn’t know how it affected our world. When I first started my research, I came across these terms and it was so enlightening to understand what Everett was dealing with. My explanation of this may make a professional cringe, and I am sorry if I am wrong with any of the information this is just my experience and not science.

The main senses are sight (visual), hearing (auditory), touch (tactile), smell (olfactory), and taste (gustatory). There are also lesser known senses, such as inner ear/balance (vestibular), awareness of body movement (proprioception), and awareness of body temperature/hunger (interoception). We all process these senses in different ways. For each of the different senses there is a spectrum of how all people process each one. Every one of us has a Goldilocks sweet spot with each sense. You may hear the term “sensory seeking” vs “sensory avoiding”. For instance, Everett loves the water. He has always sought out swimming and taking baths. If he is having a meltdown and is over stimulated, a bath is one of the first things that I try to use to soothe and calm him down. But he doesn’t like a shower as much. It has too much sensory stimulation and it isn’t relaxing for him in the ways swimming or a bath can be. Everett is a sensory seeker when it comes to touch. He wants to sit close, to be tickled, to get “puppy sniffs”, and so many other things. While other people with autism may sensory avoid touch because it can be uncomfortable and painful for them. These types of discrepancies between individuals with autism is one of the reasons that it can be confusing to understand.

Touched his smash cake a couple of times, but that was it. His first real taste of sugar and Everett was not impressed.

The lightbulb for me went off when I had an occupational therapist ask me if I personally had anything that caused the proverbial “nails on a chalkboard”. I responded that I did have a few things that elicited that feeling. What she said next will forever change the way that I would look at anyone with autism. She said, “Everett has hundreds of things that make him feel that way. All day. Everyday.” She went on to explain that he will forever be inundated with an environment that his brain isn’t able to process normally. The goal with certain aspects of occupational therapy is to help Everett learn to manage these things appropriately as possible.

Sensory overload at one of Wheeler’s baseball games. Bomb shelter position under my legs.

So much of our existence is dependent on how we as individual process our environments. 

Ask yourself these questions.

Hot and Cold, Do you like your water scolding hot whether it’s a shower/bath or what temperature do you like your coffee?  All of those things we interpret differently as individuals. 

How do you like your music? Loud or soft

How do you like your eggs? Hard boiled or over easy

How do you sleep at night? Pitch black, night light, TV on, or TV on with no sound

How does your body regulate temperature? Hot or Cold Natured

Lighting? Soft lamps or bright overhead lights

How do you respond to physical contact? I love to hug/cuddle or Please don’t touch me!

What type of clothing do you like to wear? Heavy winter/completely covered or as few clothes as possible

On your bed? Do you like heavy blankets or barely a sheet to cover you

Food preference? Are you an adventurous eater or stick to what you know and like

You catch my drift here.  We create the world around ourselves to make sure that we are comfortable.  And when we aren’t comfortable, we navigate avoidance or ways to tolerate the lack of comfort.  For example, how different people can be in the types of food we like.  Pickiness most of the time is a sensory processing issue.

Here are a few examples of how Everett’s sensory processing issues have affected his daily life. 

When we first started occupational therapy, Everett couldn’t drink from a cup or from a straw.  He was only able to manage a sippy cup.  He couldn’t handle the rush of water as he tried to drink from a cup.  He would panic and then just spit it out and drop the cup.  Trying to explain to someone how to drink from a straw might possibly be one the hardest things to describe with words.  Especially a 3 year old who doesn’t process language very well anyway.  The OT gave us a system a graduated cups that had tops that were actually inverted and had a few holes in the bottom of the top.  It would allow only small amounts of liquid to come into the top.  It taught him first the motion of only slight tilting of his head back to get water into the top, but then the amount of water that went into his mouth didn’t overwhelm his senses.  Every month, they would give us a new top that would allow more and more water to come through.  Within a few months, he was drinking from an open cup without a problem. 

When Everett was very young, he hated to be outside when it was very bright outside. He would only look directly at the ground, and even now on a bright, sunny day, he squints and covers his eyes when he looks up.

Normal outdoor picture for Everett. Eyes closed (on purpose) with a smile.

When we would walk outside, he immediately points out the subtle airplane humming in the background or someone mowing their lawn 3 miles away.

Everett’s other ear covering technique,
finger in one ear and shoulder against his other ear to free up his hand for use.

The long term situation with the TV will get a post all on its own. His pickiness is unlike any I have ever seen. He is temperature sensitive with food. He likes to eat ice cream, but every bite seems to illicit extreme brain freeze. So after a few bites, he is done. He also only eats things if he can touch it first. It’s as if he chews his food first with his fingers, but he trusts nothing to go in his mouth before he first can “test” the texture. You can imagine the mess.

Post Hershey Bar, Pre-Bath

He will only drink water, which is a good thing because dental care is a huge struggle. I am relieved to say that he has made so much progress with this. He now flosses and brushes his teeth, but we use very minimal toothpaste. We visit the dentist, but it turns into a full body meltdown and he has to be held down for the dentist to just check to make sure we don’t have any cavities. He has never had a teeth cleaning and if something does come up, he will have to be put to sleep. We’ve just now gotten to the point where he will let a professional cut his hair. Up until the last year, it would take a full week of cutting little bits at a time. I would stand him on the toilet so he couldn’t make any big movements without falling off, and I would do the best I could while he screamed. About once a year, would try to go to a salon just to see if he was willing to let anyone cut his hair. I used to say that Everett’s name and picture was put up on every salon or barbershop we went to as a warning like he wrote a bad check. Haircuts deserve their own post as well.

Mom’s haircut hack job
I resemble this remark..

He doesn’t want to wear anything but cotton or fleece. He doesn’t like a jacket that has a liner that is silky feeling or that is polyester and makes noise. He says, “No crunchy clothes”.

Tried to get him to try on a blazer for the wedding. Bomb shelter position protected by Jack

He hates new shoes and won’t try any on when we go to a shoe store. So, I just buy him what I think will fit. He will only wear them if I completely eliminate the old options.

I’ve become so adaptive to his sensory issues that I don’t think about it being abnormal, it is just our life. When it comes to parenting Everett through sensory obstacles, I have to walk a tight rope of pushing him slightly outside of his comfort zone for growth, but also trying to avoid sensory overload. I don’t always succeed. There are times where we both get in over our heads, and most of those times we are out in public. A bad experience can illicit anxiety for years to come, but I refuse to live in a way that keeps him from experiencing the amazing world around him. Jack helps those moments be a little easier. As much as Jack is for Everett, his presence also helps anchor me and gives everyone around us a visual cue that we are different. I often get asked by people how to interact with people with autism. One piece of advice that I like to give is when you come into contact with an autism family out in public and it isn’t going well, think of your own “nails on a chalkboard” triggers and have some empathy (not sympathy) for the situation. While these are our experiences with Everett, I completely understand that we are unique and what works for us may not work for everyone else. I truly believe that everyone is trying to do the best they can everyday with the skills they have and that includes people and families with autism. But in life’s struggles (autistic or not), go live your best life without fear of failed attempts because when it does go well that is where the growth, triumph, and joy lives.

Everett just living his BEST life
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