A Sensory Ride: What Would The Bus Say?

 

A Sensory Ride2

Hi Stevie, this is Bus.

I was watching you today, as I do most school days.  I saw you trying to get comfortable but the seat-belt was too tight and you couldn’t lean forward at all. It isn't supposed to be that way.

You should be able to shift your position and sit comfortably on my bench seat. It isn’t a part of me—that car seat with the harness buckle. I just want you to know that.

I have gentle seat-belts like you have in the cars in your driveway. My belts would never keep you so tightly against my bench back that you can’t take a deep breath without feeling restricted by the straps.

Maybe you could ask the Ed Techs to loosen the straps for you?  It would be a lot better than getting upset because you aren’t comfortable. I think it would take the edge off, and help you relax into my seats.

Lately, I’ve felt your bouncing more on my bench seats. I am glad my cushions could absorb that energy for you so you don’t get hurt. Can you imagine if they were metal or wooden benches? That would make a painful ride. My bouncy seats keep people comfortable while they ride on me.

When I come to a stop sign, I must stop. My bounciness also stops. When the bouncing stops, you start to get antsy like you want to keep on bouncing. Then you start thrashing and kicking and that is really hard on me.

But it must be helping you in some way or you wouldn’t do it.

Is my engine causing a vibration that is like a tickle to you so you kick into me to stop the vibes? Maybe you just like the deep-pressure sensation in your legs when you kick the seat in front of you?

Your cries are loud and my frame and cushions absorb it from you so it doesn’t stay out in the open to hurt your ears.  The problem is the other people on my benches also hear your wailing, and they can’t absorb it like I can.

It hurts them.  I see the smaller ones cover their ears to muffle the sounds. I see the bigger ones try to calm you down.

Most of the time it doesn’t work so they hold you back against my seat. They are trying to keep you from getting up from your seat while I’m moving.  They just want to keep you safe!

It looks terrifying to see you held back against me like that. Your face changes with every muscle tight.  Drops stroll down from your reddened eyes, glistening as the travel off your face. Your body stiffens and contorts, and become so very strong!  You try everything to be loose of them.

They aren’t trying to hurt you. It’s just the opposite: they are trying to help you!  They would let go of you if you could be safe while you sit in my seat.

Remember when you would bring all your stuffed critters with you to play with on my seats? That was a great way to entertain yourself and stay calm on the bus!  But then you started throwing them at the driver.  Those toys didn’t hurt me though.  Now they are up front by my face, next to the driver’s seat so I get to enjoy them.  (And, I think the driver likes them too.)

Your critters are soft, vibrant and fun to look at. When I used watch you play with them, it made me really happy, just like you!

Your happiness spreads to everyone around you—especially to me.  I could watch you all day long. Your sweet face barely contains all the happiness it expresses. Your eyes look big and deep into your critters as your mouth stretches wide, like it’s not possible to hold back the joy within your heart. Sound almost escapes but you don’t want to make the noise. It would be so loud and hurt your ears so you hold that all inside. It thrills me to see you overwhelmed by joy.

Most people who ride on my seats don’t experience the intensity of emotions that you do.  Most riders stifle their feelings, because of the other people around them. But you don’t. You are pure 100% “you”--  un-hindered.

It is a breath of fresh air for me. It’s like opening my windows to have someone like you ride me every day to school.

So I am happy to absorb your extra sounds and energy when you need me too. I am here and I am able to handle it. I will absorb all I can and try my best to give you a nice ride to and from school each day.

You are welcome on my seats and I am happy to assist you.

With much love and adoration,

Bus 35

At this time, Stevie is doing great on his bus to and from school!  For many years (and still from time-to-time) he had extreme difficulties with panic attacks and sensory issues on the bus.  This post is written with intent to explore some of the reasons why it had been so hard for him.  

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Autism vs. The Nebulizer

Autism VS. Nebulizer

Just thinking about it makes my stomach clench tight. He's 9 years old now, but there had been days when I wondered if he'd make it through the night.  His asthma was super severe when he was little, and it was complicated by undiagnosed food allergies. He had a nebulizer at school as well as at home. We even had one for the car, because of a trip we took where he had problems in the car on the ride home. 

There's pretty much not much worse than driving the distance from Northern Virginia to Maine with a child having an asthma attack.

Do we keep going? Do we go straight to the hospital?

Will he be ok?

I break the car seat laws and hold my baby in my lap, trying to comfort him and myself, while Daddy drives us home.  There was no way I was going to have my 2 year old stuck in the car seat another second, unable to move freely and make it easier to get air. Struggling and gasping for air, we finish the last half an hour to our house...to the nebulizer.  

But one of our greatest challenges still remains: Stevie is terrified of the nebulizer. The device that will rescue him until we get the prednisone he needs, he has declared his worst enemy.

"Just hold him down." is the advice we get from the medical community. "If he's screaming, at least he's breathing and getting the medicine deep in his lungs." they say.

How I hate that advice.

When they recommend that as a treatment plan, it's all I can do to keep anger from overtaking me and somehow I manage to hold my tongue.  I am not sure what they think  throwing a fit is like when it comes to Stevie, but clearly they haven't a clue.

Stevie has autism with a ton of sensory processing issues--mostly on the aversive side of the spectrum. It is not possible to hold him down. Especially for a 15 minute nebulizer treatment!

Just. Not. Gonna. Happen.

I'd like to see them try.

(Ok, not really, because that would be way to painful to see!)

The first nebulizer we had was big and bulky, and very loud. It was like a motorcycle with a bad muffler running inside our living room, shaking everything like a 15 minute earthquake.

So we found a "quiet" nebulizer for Stevie.  By quiet, I mean it just sounds like an airplane taking off.  But besides the crazy quaking of the machine, there is the issue of the steam coming out toward his face.

White smoke.

Wet white smoke that smells...and tastes bad.

Attacking my food-averse child in the face.

The mask must be held over his tactile-defensive mouth so he is forced to breathe it, and to prevent the medicine from getting in his eyes.

I. Can't. Even. Imagine. what my poor sick boy thought we were doing to him.

Eventually we learned that he would comply much better if we gave him his beloved Pirate Booty and put his favorite video on, while he's strapped into his high chair. I am sure the Pirate Booty taste helped mask the taste of the "white smoke", but in order for him to eat it, we would have to hold the mask away from his mouth a little.  He didn't get the full dose of medication this way, but at least he got some, and he wasn't in a state of terror the entire time! 

Eventually, we had a meeting with an Asthma Specialist at Maine Medical Center, that was amazing.

She gave us a book about a little boy who needed a nebulizer. It explained what the nebulizer was and why he needed it.  Most importantly, the little boy was afraid of it as well.  Instead of reading this book to Stevie, about a random child that he couldn't care less about, I covered over the boy's name with Stevie's name and made a social story out of it.

We also brought out his favorite giant-sized Winnie-The-Pooh Bear, and had him practice nebulizing Pooh (with water instead of medication).  Pooh-Bear was such a wonderful patient. He never squirmed or screamed, he just sweetly cooperated.

Eventually, Stevie got as used to the nebulizer as he would. We'd nebulize him with his controller medication while he slept at night, and so he got used to the sound a little bit more while reducing the stress, and it decreased the need for the albuterol nebulizer in the day time.

To this day (he is now 9), he still hates that nebulizer, and now he is too big to "force" it on him like "they" recommend.  But, he has been able to see his baby sister use the nebulizer, and he's heard her coughing and struggling for air. And I think that just a little bit, he is starting to understand it isn't the enemy, but a necessary evil when having trouble breathing.

I am not sure if that is completely true, or just wishful thinking, but one thing does seem to be true: he seems to have outgrown the more severe asthma attacks. He has made it through many colds and mild asthma attacks with just his regular rescue inhaler and the controller medication that he takes morning and night, and for that, we are ever grateful!

A QUESTION (or two) FOR YOU

What have you found to be effective in helping your child with sensory processing differences accept a nebulizer treatment (other medical procedure) that they don't tolerate well?

How do you deal with the "necessary evils" in your life?

When do you fight against the very thing that will save you?

I would really love to hear from you, please leave your comments below!

 

 

The Sensory Spectrum