Sunday, November 29, 2009

Our asthma initiation

Since he was less than a year old, when Ben got a bad respiratory illness, it usually manifested as croup.

I'm not sure how many times he had it, but I know it was often enough that whenever Chris and I were awakened by the familiar seal bark cough, we could spring into SWAT team-like action without exchanging many words.

One of us would gather Ben up in a blanket and bring him outside in the cool, damp night air. The other would fling open the doors and windows in the house, start the humidifier, and get a popsicle out of the freezer.

Other times - fairly frequently actually - Ben would just wake up with a garden variety cough and we would blame it on dry air caused by leaving the thermostat too high by mistake. We'd open his bedroom window and wait for it to subside.

The doctor even gave us an albuterol inhaler two years ago during a really bad cold when his cough included wheezing.

But no one ever called it asthma.

Until last weekend, that is.

Ben was sent home from school on Friday with a bad cough. When it didn't get better at home, we tried the inhaler but it seemed empty. I called to get a refill, but the prescription was two years old, and the doctor's office wanted to see Ben before a issuing a refill.

Our plan was to bring him in to the urgent care clinic the next morning.

A couple of hours later, Ben couldn't finish a sentence without wheezing, and with the blessing of the on-call nurse, we headed for the emergency room.

At this point, Ben was cheerful and energetic. He ran and skipped into the emergency room, singing along the way, and goofed around in front of the closed-circuit video monitor. I was expecting we'd get an inhaler and be home in an hour.

The triage nurse examined him and typed "Respiratory Distress" into her computer. The respiratory specialist was incredulous that we hadn't brought him in sooner, given the severity of his asthma.

Asthma? Did I mention he was skipping and singing?

After an hour of inhaling albuterol through a mask, the doctors still heard too much wheezing in his lungs. They wanted to admit us for the night.

I convinced Ben we were going to have an adventure in the hospital and that I would stay with him. He wasn't happy about it, but he stayed mostly calm, given that he had three wires stuck to his chest, a mask and a monitor strapped to his finger.

The really hard part came when we had to tell him he had to stay a second night.

I think Ben was stable and healthy enough to go home, but I get why they were so cautious. Especially if you consider that many families who come to Children's Hospital in Oakland don't have a primary care pediatrician. For some, this is the sole touchpoint to ensure that the family understands and will stick to the "Asthma Action Plan" that will keep the child from coming back.

A nurse sat down with us to make sure we understood what to do: yellow zone, red zone, two puffs, peak flow, identifying the triggers, long-term controllers and quick relievers.

We have a plan, and drugs, and we know what to do now to keep this from happening again, just like 1 out of 6 families in Oakland who have also a child with asthma.

Ben is home, healthy and doing just fine.

Mostly, I'm heartened that he was able to make it through an experience that was a sensory nightmare, that kept him from nearly every important ritual in his life, and one in which he faced nearly constant, difficult limits (like being confined to his bed for two and a half days).

He fussed, sulked, cried, and screamed bloody murder at us several times, but he also happily watched videos on a portable DVD player, read books, and played with the up-down controls on his hospital bed over and over again.

(Can I just tell you how much he loved the bed?)

If you would have told me last week, "Ben is going to have to go to the hospital on Friday night and stay for a couple days," I would have suffered a major anxiety attack.

But, surprise: there we were. And we did okay. He is capable of quite a lot. More than I ever would have expected.

In the ER.jpg

Do you think I'm spoooooooky? (Ben mugs for the camera in the ER)

Tuesday, November 10, 2009

Anything is possible: two stories

Many of you regularly read the same special needs parenting blogs that I do, so it won't be a surprise when I say that I found myself stopped in my tracks, wiping away tears, and pumping my fist in the air all at once while reading two of my favorite writers recently.

For those of you who have not yet discovered the wonderful MOM-NOS or Drama Mama at Like a Shark, I direct you to these two stories and implore you to stop whatever you are doing and read them.

Every smile a memory: Cassidy, Dierks, and the transformative power of friendship


These are stories about friendship, and about connection, and believing that amazing things are possible when individuals connect with something they feel passionate about.

Enjoy. Bring kleenex.

Tuesday, November 3, 2009

non sequitur

As Ben runs down our sidewalk
Me: What's wrong? Do you want to run away?
Ben: Yeah.
Me: Why?
Ben: All you need is caffeine

Not on my birthday
Ben: Mommy, it's your very last birthday.
Me: Why?
Ben: Because you're the only one who gets a present.

Ben: Daddy took me to the doctor and the doctor said that one day you went to the doctor and said that you used to take a bath in the morning.

Ben: I have a question for you. What if you open six packages and one suitcase?
Me: I don't know. What?
Ben: It will turn into dollars.
Me: Why?
Ben: Because you forgot to put dollars into it.

Me: Can I have a kiss?
Ben: As well as you like!

After waking up in the morning, while still lying in bed
Ben: C'mon. It's under the bed. The table set. There's a cut through the wall.


I'm alternately baffled and amused by Ben's fascinating use of non sequiturs.

I've been trying to collect them over the past six months or so in order to share them with you. I've been mostly unsuccessful, usually forgetting to write them down, but I did manage to get a few.

We hear these non sequiturs and scrambled syntax pretty often. They linger even as his language skills continue to take leaps.

And Ben still has trouble getting words assembled when he's communicating something fairly novel. Sentences will often come out like this:

"Can you... Can you... Can you... Can you... get a piece of tape for this book? The page is ripped."

Sometimes he has to walk around while he's waiting for the words to come.

I imagine his feet powering gears his brain.

I imagine a spinning icon on his forehead that says "loading...loading...loading."

I'll admit that this post started as one of those, "Isn't he delightful" pieces, but as I assembled this list of quotes, I began to wonder: Is this a specific, clinical phenomenon? Does it have name? Is it common? How is this addressed by speech therapy?

What's your experience with language patterns like these? Do you see them in your child with ASD? Your typical child? Do you have them yourself, if you're on the spectrum?

Send me your thoughts as fodder for a follow-up post on this phenomenon.