Life in a Bubble of Calm (a love letter of sorts, to my children) By Jeanine Lebsack

It's that time of year where the hustle and bustle of the Christmas season is upon us. Stores are stocked up with the latest toys, festive adornments, houses are decorated, and Christmas trees are twinkling in the windows. And here I am struggling to hold onto to a sliver of the magic of Christmas. Tis the season with its carols playing non- stop on the radio, cheery displays of Santa and his elves reminding me this is what happiness is all about. Meanwhile, in my little corner of the world life is very different. The brightness, busyness, and the noise, noise, noise is too much for my sensory sons. And, yes, I'm aware I sound like the Grinch. Probably because I spend most of my time being a sleep- deprived Mombie! I've used that word so much in the last while, I think if you look in the Webster's dictionary you'll see a picture of me!!! I have to always find ways to keep my sons calm and regulated. If I don't then there's hell to pay as a sensory meltdown of epic proportions will be the result. I am Mom OT (occupational therapist) that has them jumping, rolling, tumbling, to regulate their proprioceptive, interoceptive, and vestibular senses. These are the other senses in bodies that don't get a lot of recognition, unless something's out of whack. Yet they exist as well as the visual, auditory, oral, olfactory and tactile senses.

Proprioception- meaning ones own individual sense of the relative position of neighboring parts of the body, and strength of effort employed in movement. Yes that's a mouthful, so let's break it down shall we? My youngest son isn't aware of his body in space, and where that begins and where it ends. So crashing into the wall, toys, or his brother are common, and he's not aware of it until after the fact.

Interception-is the sense by which one perceives pain, hunger, bowel/bladder control and the movement of internal organs. So in layman's terms potty training is a bust as of late; my three year old has awareness but no sense or urge control or the urge to eliminate.

Vestibular- is the sensory system that provides the leading contribution about movement and sense of balance. The brain uses information from the vestibular system in the head, to proprioceptive throughout the body to understand the body's dynamics and kinematics, which describes the motion of objects or groups of objects, without the consideration of causes of motion. Translation meaning when my youngest son is “stimming,” (stimulating all his senses to seek input in his environment) he will spin for an hour if I let him. I prefer swinging-on actual swings- to regulate my vestibular sense.

My sons have a neurological condition called Sensory Processing Disorder (SPD for a short abbreviation). My youngest son is a seeker of all kinds of sensory input. Think of it in terms of having a bucket of water with a hole in the bottom, and it constantly needs to be filled up. The clinical definition is Sensory Modulation Disorder. My oldest son has Sensory Defensive Disorder. He has a lot of defensive issues with receiving too much input. Picture it as a bucket of water that's constantly filled, and it's pouring out all over the floor. His issues are predominantly with auditory, visual, and olfactory senses.

Both my kids are on a "sensory diet" which consists of OT, skin brushing, joint compressions, and deep pressure massage. My youngest child has numerous food texture issues as part of his oral defensiveness. I have to food model for him and massage the roof of his mouth and have him bite down on a washcloth to strengthen his jaw muscle. This helps his hypotonia (low jaw muscle tone) and hopefully makes his mouth less orally defensive. I have to watch him constantly to see he doesn't over -stuff, gag, or choke. This is a full- time job and I'm the only one doing all the OT. So can you see why it's easier to stay home and avoid all the drama this behavior ensues?! I've been told I'm spoiling my youngest by not forcing him to eat what we're eating. You can't force a child with SPD to do anything I implore all the uneducated naysayers!!! Considering he's gone from only eating five things at eighteen months to twenty things at three, that's a major accomplishment in my books!

So I have to give my oldest son quiet time, headphones, and faith in his ability to self -regulate from the busy, noisy, bright world he lives in. I have to give my youngest as much time to jump on a mini tramp, bash and crash, roll, and climb as often as possible. He also needs headphones as the vacuum, garburator, tap running, and the frying pan cooking on the stove drive him crazy. They will both make the loudest noise to "cover" up their discomfort. So one avoider and one seeker, and I have to keep them away from each other when they've had enough of trying to assimilate and regulate in their worlds. Their brain and central nervous system are constantly bombarded with sensations. And all the senses act like a traffic jam, as

the messages don't get to the brain in time.

I need to be on constant alert with them at play dates. So that involves keeping play dates and get- togethers small and the loudness to a level that's manageable. Also never taking them Christmas shopping and not overwhelming them with tons of gifts are a necessity. I can do all these things in my home, but outside of it- that's where it gets tricky. I spend a lot of sleepless and restless nights trying to keep everyone in their bubble of calm. I feel torn between my husband and our sons. I can't dedicate enough time to each of them, so I'm that split down the middle like a pie. And I'm always trying to leave a small, but necessary piece for myself so I have some shred of sanity left.

We will be spending our Christmas at my in-laws and there will be ten people in attendance there including us. I honestly feel heart palpitations thinking about it. As all I can think is, how will this affect my children? I will be bringing all the sensory- regulating tools with me to keep them in a bubble of calm- but whether that will that be enough remains to be seen. I'm also sitting down to write a letter outlining my sons’ neurological conditions and things I'll be doing to keep them regulated.

I know I need to be calm myself and not get defensive when I'm offered well- meaning advice such as "Boys will be boys," "He's just little, all kids act like that," "You worry too much," "He's spoiled," "You're spoiling him," and my personal favourite, "He looks normal, he should just outgrow this condition." Hearing these blanket statements breaks my heart and make me want to stab someone with a plastic fork.

I love my children so much my heart aches, of course I want to protect them from a world too cold and indifferent to them and their sensory needs. I know I have to let them experience life and learn to self- regulate themselves as well. If I could only let them know of a world that helps instead of hinders, and fills their love bucket to the brim instead of filling it with tears. A place that's filled with promise and fulfillment, instead of pain, judgment and disappointment I would. All I can do is let them know their needs will be met, their bodies will be safe, their minds will be calm, and their hearts will be protected. And I can pick and choose who they let into their bubble of calm. With all these tools in my toolbox I can at least attempt to survive the holidays, or become a raging, incoherent alcoholic. And come out intact, unscathed, and ready to take on a new adventure with happy, calm, regulated kids. Well that's my goal at least, onwards and upwards my friends!

*All clinical definitions and diagrams provided by http://Wikipedia.org*

Jeanine Lebsack: I'm J and I'm a stay at and work from home Mom of two sons. I work as a transcriptionist and raise them with my loving husband. I'm an avid reader and writer and I entered the blog world a year ago. My sweet sons are my light and my loves as well as my amazing husband; they allow me to be inspired and loved and able to share my journey. Follow my blog at: http://jsackblog.wordpress.com/ and find me on Facebook

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