Labels – My cerebral palsied, autistic, asthmatic son

Nathan gained two new labels this week. Autistic and asthmatic. They kinda rhyme don’t they.

You kinda have to wonder how you get to pulls such cards in life. You must be really really special or just have really really bad luck.

So during his last speech therapy Nicky his wonderful therapist started talking to me about ABA. I told her I was concerned because I have a hard time getting Nathan to look me in the eye. When I am asking him questions and giving him choices, he’ll just never look me in the eyes. She noticed the same and we started talking about it. The more I told her about his temper tantrums and other behaviors the more suspicious she looked. She seems to think many of those are Autistic behaviors. Now he’s very aware of people around him so he wouldn’t be in the severe end of the spectrum. But we both agree that he’s very likely to be on the spectrum. I coincidentally found this article today:

The gaze of normally developing toddlers tends to be on the eyes of other people. But two year olds with autism focus more on the mouths, according to researchers at Yale University’s School of Medicine. Scientists there used novel eye-tracking technology to follow the visual fixations of toddlers. They monitored the toddler’s eye movements as caregivers approached them and interacted by playing peekaboo, for example. The research team found that the less the youngsters focused on the eyes, the higher their level of disability. Toddlers with autism focused on eyes less than 10 percent of the time and close to 60 percent of the time on the mouth. Typically developing toddlers spent more than 60 percent of the time focused on the eyes and only about 20 percent on the mouth.

This kinda confirms my suspicions. I challenge anyone reading this who knows Nathan to get him to look at your eyes more than 10% of the time. I can bet it won’t happen. So to treat his autism I’m going to a conference on ABA so I can see if this would benefit Nathan and to learn more about the spectrum and see if it really applies to Nathan or not.

Now the other new label he acquired today: asthmatic.

Last night he hardly slept and he was coughing all night. This morning he was a mess and I took him in to see the doctor – again. This must be our 30th visit in 3 months, it’s insane. He checked him and found that he was wheezing. I don’t know anything about asthma so I didn’t even know what to look for. So he said that since this is his 3rd or 4th visit for a breathing treatment, that he’s having recurring “reactive airway” issues, which qualifies him to be labeled as asthmatic.

So now Nathan needs a nebulizer and regular breathing treatments.

This one has really surprised me because Nathan has been so healthy until 3 months ago. We hardly dealt with any medical issues so it’s tough to face a chronic medical issue that we will always have to deal with, like asthma. The doctor doesn’t know how serious it is yet or if it’s chronic or seasonal or just temporary. We’ll see with time. They gave him 3 medications – xopenex, a steroid, and claritin. The xopenex and steroid did nothing for him. Fortunately we had a little bit of stuff left that was given to him when he got sick in France, and it worked like MAGIC. In an instant he stopped coughing and started breathing normally, it was amazing.

On the plus side, we saw the new neurosurgeon on Monday, whom we REALLY liked. After the fiasco with the old neurosurgeon, it’s pretty wonderful to meet a smart, competent doctor. He tapped the shunt and I got a call today saying so far, nothing has grown.

So we can rule out shunt infection for the recurring illnesses and continue on our search for the actual cause of all these illnesses and infections and respiratory issues. I am determined to get to the bottom of this!

We are seeing 2 new doctors tommorrow – a chinese herbalist, and a naturopath that someone we trust recommended. We see one at 1pm and the other at 2:30. I’ll post tommorrow to let everyone know how it went.

So if I wanted to ping labels to Nathan:
Holoprosencephaly, Hydrocephalus, spastic quadriplegic cerebral palsy, agenesis of the corpus callosum, autistic, asthmatic, agenesis of the septum pellucidum, etc etc.

Now if you can’t tell, I treat the idea of labels as a joke. I love throwing out all these combinations on paper when I am writing reports for his doctor to sign, and when talking to other parents. I just think it’s kinda hilarious that you can take a sweet loving soul like Nathan and ping all these labels to him. Which is why I don’t. Because Nathan is NOT defined by these labels. Nathan is defined by his spirit.

But man. To get this combination of labels, you have to be very very special, or very very unlucky 🙂


  1. I agree…….labels suck.
    heck if I wrote down all of Daniel’s I would need more than one sheet of paper. And when I do write down just the 3 major issues, everyone is always stunned when they see Daniel, because they expect much much worse. I love h ow you say they are not defined by these labels but by the spirit.

    Nicely said! Hope tomorrows appointments go well.

  2. Ryland went through the whole asthmatic thing but now is much better and only needs treatments when he really get worked up. It was pretty bad for awhile. Also when he started preschool he was very fussy and acted much like a kid with a autism but now he’s doing so much better, he still has his temper tantrums but they are far less. Ryland’s health problems were worse between a year and 4 years old. I hope Nathan is feeling better.

  3. Hey Marcela,
    Billee went through a similar experience with the asthma. She was on ventolin and flixotide inhalers during winter and spring. We stopped them at the beginning of summer and her breathing has been fine since. Her paed did say that at her age they treat it as asthma but they don’t really know. Obviously Nathan is older so it would might be clearer to them.
    Is it Winter where you are?If so hopefully things will improve as summer approaches. Lets hope it is just seasonal hey.

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