The Breathing Music

My son was diagnosed with asthma over a year before his ASD diagnosis.  I often wonder if there is any correlation between the two.  I know he struggled with breathing for the first two years of his life.  He did not wheeze until an incident in October 2008.  This is that story.

A week before Halloween 2008, in Northern California, it was still warm enough for t-shirts and shorts.  My son at 2 1/2 years old had already picked out his costume.  Buzz Lightyear.  More than anything, he loved the “button” on the costume that flashed lights on the spacesuit.

My husband, a lawyer, was in trial.  Because of this, he was working 18 hours a day, seven days a week. Basically, my son and I were on our own.  My son had not yet been diagnosed with ASD and I had no idea his behaviors were anything but fussy and headstrong.  Yeah, I know.

Anyway, we were excited!  Halloween was coming.  I’d heard so much about a nearby pumpkin farm, I was determined to take the little guy to see the animals, to ride a train, and sample all the yummy homemade pies, breads and ice cream.  And, of course, pick out a pumpkin.  Maybe, if we wore him out, he would sleep.

Sleep was something that I got very little of.   As a baby, we were told my son had colic.  We tried switching formulas, bottles, blankets, pacifiers, swaddling.  Nothing worked. I felt like he was stuffed up or having trouble breathing.  I told the pediatrician but nothing was done.   I bought a humidifier and set it up every night, with vapor rub.  That wasn’t helping either.  The only thing that seemed to work was a bottle.  We were feeding him bottles of soy formula in the middle of the night  long after his second birthday to get him back to sleep.  Our dirty little secret.

There was a break in the trial and we all went to the pumpkin patch.  We arrived with a hundred other cars, each carrying families with children.  Hauling out the stroller, we packed him in and headed the direction of the crowd.  Soon, we found the patch.  My little guy was in heaven.  He was so happy, running from pumpkin to pumpkin, many of which were much larger than he was.

Picking the Pumpkin

There was a small train but he was too afraid to ride it.  He stood and pointed instead.

Watching the Train

Looking at the pictures now, I see his hair was very long at the time.  I never even dreamed of taking him for a haircut.  I was blind to the possibility that fussiness associated with his hair was anything about which I should be concerned.

We ate ice cream.  We had a ball.  Just before leaving, we put him on a large patch of pumpkins for a picture.  A perfect day.

King of the Pumpkins

But in the middle of the night, he began to wheeze.  He was struggling.  He could not even sit up in the morning.

I took him to the doctor. It was asthma.  Dr. L was concerned that he might have pneumonia. I was freaking out!   I felt horrible for exposing him to hay, animals, pumpkins, and dust.  To this day, we will not go back to that place. Irrational?  Probably.  Nevertheless..

I was devastated and terrified for him.  He had to have a nebulizer, a machine, that turns liquid medicine to steam which is inhaled.  It was hella loud.  My son completely melted down.  Luckily, I brought his stroller. With me holding him, the nurse gave him the treatment, teaching me how.  He was given an antibiotic shot and prednisone.

Next, we were off to the hospital.  Oh joy!  My undiagnosed, sensory-sensitive, sick, crying, terrified child at the hospital!  We waited with 70 year old patients, pissed that my child would not be quiet.  Gratefully, we were finally called into x-ray where I had to position him to sit up, shirtless, breathless, and frightened against a cold, hard x-ray machine.  This was just fabulous.  We made it and headed home.

As soon as I got him in the door, the doctor’s office called.  He wanted me to return with my son but would not tell me why.  When I arrived, they gave him another breathing treatment.  The doctor said the x-ray showed pneumonia and my son would be admitted to the hospital.  I did not know how I was going to get through this.

The doctor told me that the area of fluid was small and if my son improved with this last nebulizer treatment, he might let him go home.  Meanwhile, he instructed me to go to the hospital to have my son tested for RSV, Respiratory Syncytial Virus.  This was done by sticking a metal probe up my child’s nose while two nurses and I held him down and I tried to comfort him.  Can you imagine?  Yeah.  He did not have RSV.

After all this, I could not imagine the night in the hospital.  I called the doctor and told him my son’s breathing had improved.  It had.  I asked to take him home.  The doctor said to wait.  He came about an hour later and released him!

Once home, my son stood in the bedroom.  He faced me with terror on his face and, for the first time in his life, let loose with vomit like a whale spouting spray.  Vomit soaked through my shirt, bra, pants.  On my face and in my hair.  All over my son, the floor, and the chair nearby.  He vomited four or five times more in a row.  I cleaned him up, first.  My husband came in.  I took a shower.

We found out that the prednisone needed dilution with syrup to keep it down.  We used cherry.  It took time but he fully recovered from the pneumonia and made it for a short trick or treat with the son of a friend.

Since that time, we use a nebulizer twice a day. And guess what?  That screaming, crying kid now falls asleep with the machine on.  My son has slept nearly every night through since that machine came into our house.  We may have hated the sound at first, but now, it’s music to our ears.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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5 Responses to The Breathing Music

  1. Tam says:

    The shit you go through as a parent. Here’s the good news, as a mother of four grown children, your child is normal. He may have other challenges, but, this is just another day in the life of being a parent. I think the pics of your little guy are absolutely beautiful. He is an angel. Lucky, lucky mama…for having a gift such as him.

  2. Meg says:

    You have made a very important point with the possibility of linking breathing disorders and other diseases. I became certified as a yoga instructor for children about two years ago, and although I don’t have an answer, there definitely is a lot that can be attributed to problems with breathing and sleeping. I will look for some breathing activities and send them to you. You are doing marvelously!! Just a bit more, and I hope you get over the hump!!

  3. Meg says:

    One more thing, the autistic boy who became very centered and gentle in junior high school devoted himself to Kendo, and may have gotten some beneficial results from the discipline of being one pointed. Of course, your son is still so little, but just for future reference.

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