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


The Road from Guilt to Gratitude

The Road From Guilt To Gratitude

I love having children, and the unusualness of my life considering almost half of the family has autism.

Some of it, I haven't come to love: the aggression, the impulsiveness, the lack of safety awareness, the illness and food allergies and asthma... No, those things come with great stress, alertness that rivals hyper-vigilance for it's big-word title, and exhaustion.  The alertness has no rest; it's only ally is dark-roast coffee.

Stress screams, "Let me out of here!"

There comes a time when one must "care for the caregiver". If we don't care for ourselves, we will burn out and be unable to care for our children well.  Which is not a pretty picture when their life depends on parents who are hyper-vigilant.

This is true whether you children has special needs or not, which is why all those parenting magazines talk about having "Mommy Time", even if just for a walk around the block. When you have special needs in the family that requires around-the-clock care, it is even more important, and that much more difficult to actually do.

This would be why it's been 10 years.

But, I finally did it. I signed up for a Beginners Watercolor class through the local adult-ed program. I have wanted to take this class for years...ever since my husband gave me a Watercolor set for Christmas. I tried and tried to paint something identifiable, but always ended up with a watery, muddy, indiscernible mess.  

So Back-To-School I went, right through the Middle School doors down the hall, around the corner weaving back and forth through the not-so-large school to a room with a teacher sitting at a desk in the front of the class. 

I almost didn't make it. Saturday morning, I heard Stevie coughing and moaning. He managed to get enough air in for a cry out that said he just. couldn't. take it. anymore.

I rushed in to his room and gave him an unwanted nebulizer treatment  (read: kicking and pushing) but he was too weak to fight hard. We gave him left-over steroids when the neb treatments didn't work.  

Dan said to go to class anyway, and he'd take care of Stevie and call a friend to help if needed. The steroids should kick in soon, and he'll be ok.  

So, I went.  That is, after he promised to call me if our friend is not available, and I'll come home.   Every other time, the steroids have done the trick and he probably would be fine in a couple hours.  

But this time was different.  He didn't get better, he got worse. He got pale and lethargic.  So Dan called and our friend came, and he took Stevie to Quick Care.  Even with the nebs and steroids, his oxygen level was in the low 80's.  So they gave him extra oxygen and monitored to see if he would be able to maintain the levels on his own. He wasn't.

So he got to take his first ambulance ride to the hospital and spend the day in the E.R. and eventually he was admitted because his oxygen levels would not stay high enough without the additional oxygen.  

At this point, I was really regretting having left him to go do something fun for myself.  I thought every time I saw that painting, I'd remember how I left him while he was so sick.

But as time went on and Stevie improved, I started to see it differently.  

I have traveled the road from Guilt to Gratitude.

What could have happened, didn't; Stevie is fine, and ended up loving his stay at the "hotel" with his own magical wall-sized window overlooking the city, that turns into a mirror at night.  All those under-entertained onlookers near Amatos that evening, looking up to the sixth floor window saw a 7 year old boy in his boxers, jumping and dancing on a couch with Kermit the Frog.  

I realized, as I stayed with him in the hospital overnight, that God took care of  EVERYTHING.

*He prompted Dan to take Stevie to the Quick Care place down the street.

*He made my well-equipt friend willing and available to come watch the other three children until I could get home.

*He placed wise doctors in Stevie's path.

*He even made what could have been traumatic for Stevie, the time of his life:  riding on an ambulance, staying overnight on the 6th floor of a "hotel" with LOTS of fast elevators, being waited on hand & foot...with all his favorite things (minus a swimming pool).  

AND

*He made it possible for me to take and finish the art class I had been looking forward to.  

I think He wanted me to have that class, to learn how to find some balance in my seemingly unbalanceable life.  

Sometimes, finding balance is letting go of some of the things the job description typically lists as your responsibility; it requires letting others help.

Here is my painting:

The teacher said I should paint!

 

Psalm 37:4 "Take delight in the LORD, and He will give you the desires of your heart."

POST BLOG:  There is a whole website/blog dedicated to caring for the care-giver. It is called The Oxygen Mask Project, based on the teaching in airplanes, that we have to care for ourselves--put on our own oxygen mask first,  before we care for others--put on their oxygen mask. You can check them out over at The Oxygen Mask Project  .  Kinda ironic that I was putting on my "oxygen mask" when Stevie needed his "oxygen". 

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