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.
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!