The nose that knew too much…

The common cold is intensified when it happens to J.  A simple stuffy nose becomes a matter of national security.  I am not exaggerating though there are some who are not informed enough on the intricacies of Autism to not realize that I’m in earnest.  Anything, with Autism added to it, becomes a Cecil B. DeMille production with a cast of thousands…

It all started when TGG’s cold migrated through the very thin walls of our humble abode.  Colds do that.  In fact, our pediatrician circa 1991 told me (upon receiving a panicked call describing the symptoms of a common cold in a baby) “congratulations!  You will now be passing this same cold around for time immemorial.”  This, of course, was hyperbole at its best.  We all know that it’s not “the” same cold, but it sure feels like it!!!

In the isolation of this household (of emergency MRIs, galloping Autism et al,) there are moments of absurd celebration.  These moments, more often than not, are shared more openly with you (my dear band of strangers) than with acquaintances.  If you are reading this, the likelihood is that you will celebrate and commiserate with me better than anyone who sees me every day or knows me since “forever.”  So…here is yet another celebratory gem: CLEAN NOSE PLEASE.

For the first time in his nearly eighteen years of life, J spontaneously expressed that he had a stuffy nose and asked for help.


(And now we do the dance of joy!!!!!)

Immature, I know.  Melodramatic, I know.  Hyperbolic, I know.  But true.  Utterly and absolutely true.

These are things that my siblings don’t understand.  Most people in my family have either never met or not seen J in a very, very long time.  It’s hard to explain J when people have no point of reference.  If it happens with neighbors and acquaintances who see him more frequently, it’s even worse with people who just don’t know J or us.  The little triumphs and failures, these are things that many people don’t truly get because, well, their children have been complaining spontaneously and asking for help spontaneously since they were toddlers.  Their kids have been saying “mommy mommy” and “I’m hungry” and “I don’t feel good” since they could speak.  J, all 257 pounds and 5′ 9 1/2″, has barely started doing it.  When I saw and heard CLEAN NOSE PLEASE, I almost laughed and cried simultaneously…yes, I am that much of a drama queen and I’m THAT immature.  Go figure!!!

The desire to do these things, however, was buried under the need to respond and reinforce.  J’s nose got the attention he requested.  The parade down Main Street with the band in tow will have to wait…right now we just have to get rid of this cold.

We usually don’t give J any medication other than the Risperdal.  As a general rule, a fever will elicit the use of Tylenol, and cramps will prompt some Benadryl.  The congestion and fever today were enough to worry me so Dada called the pharmacy that dispenses J’s med at the hospital and asked what else could we give him.  The over-the-counter medication was readily available at home, and it was also the foulest tasting thing we had.  Trepidation was inevitable as I offered it to J.  Proof that he is not feeling well: he drank it with no complaint and very little outward expression of how vile it tasted.  He also quickly downed a whole bottle of water.  I then hovered around him for about half an hour to make sure it didn’t come back up the way it went down…

I’m happy to report that no such thing happened and that, while still tremendously congested, J’s fever has started to go down.

These are the little melodramas of our life.  These are the things that people just don’t realize go on in the Wonderful World of J.  The illusion that our lives have very little of substance to them simply because what happens here is unexplainable…well…we can’t help that, can we?  I cannot convey to others the joy of J’s sudden willingness to communicate any more than I can explain why it’s a big deal that the gloves are now perpetually parked on his bed.  Unless you are or live or know or are close to people whose lives are marked in the way ours is…all this sounds pretty stupid.

J’s eyes look sad.  That’s the first sign of his not feeling well.  The miraculous, wonderful thing about this particular bout of la grippe is that J is talking about it…with his hands, with a nasally voice, but he’s asking for help.  He’s also refusing it, but he hasn’t once been upset or thrown a tantrum in spite of his discomfort.

All these things seem to indicate that J is slowly maturing.  Little by little, the shedding of the gloves, the asking for help without prompting, the positive feedback from school, the adjustment to all sorts of new situations…we’re moving in the right direction for now, aren’t we?  In spite of my clumsiness and incompetence where other things are concerned (and this is clearly pointed out to me, especially by those who know very little of me and judge me based on spurts and blasts of interaction,) I do some things right.  I do them right where it counts.

Exhausted but happy is how I go to bed.  Well, no…exhausted, worried, frustrated and happy is how I go to bed.  The hours between now and when J is no longer ailing with this simple, run-of-the-mill common cold will be spent trying to make sure that his frustration -should it arise- does not result in unnecessary steps back.  Sideways steps are ok, but we don’t want to go backwards.  Not unless we have to…

Here in the bubble we do what we can to preserve J’s well-being, and we rejoice in those things that others don’t understand because we know how hard we work to make them happen, and we know that the people that understand are the ones who count.


2 thoughts on “The nose that knew too much…

  1. Before autism entered my life, I ignored the little things. Now, I appreciate and celebrate them. Just a few years ago I wouldn’t have understood your post. Now I do.
    I hope J recovers quickly. Is your older son over his cold? And is your hubby taking it easy as he is supposed to?
    And don’t forget you. Please take care of yourself, too.

    • As I reply to your comment, I hear solid, relaxed snoring from the bed so, yes, my husband is definitely taking it more easily than he was. The trip to see his dad helped…now he worries about more specific things rather than the gnawing anxiety he was harboring. (Men!)

      TGG is much better. A hint of a hint of a cough lingers, but I’m sure with the two days he has off this weekend he will be well by Monday.

      I am having trouble sleeping, but that’s par for the course. I don’t know you, but I seem to be endowed with superhuman hearing when J is sick…as long as the cat doesn’t trip me up while I walk back and forth checking him, I’ll be fine. 🙂

      I hope you have your own version of The Dance of Joy. I think every family with an autistic individual in its midst needs their own version of The Dance of Joy…here it’s a shuffle, shuffle, hop forward, hop backwards, shuffle, shuffle combo… 🙂

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