Susan's Blog

Tuesday, May 18, 2010

Just My Imagination

Having a rich imagination sometimes works well with autism — and sometimes it doesn’t.  With my ability to think, dream, and create, I have been able to imagine the way some things could be for Nat, a bit like Jack Kennedy, only I dream of things that might be and ask, “Why not?”  My imagination has helped me have breakthroughs, in that I would give myself new ways of seeing old things, and continue to hope.

My imagination can also be my worst enemy.  The way my autism upbringing began, the evaluating doctor told me a lot of “we don’t know, so you’ll have to find out what’s true for Nat.”  That was the perfect bit of (non)guidance for me in that it fueled my already profound sense of my own intuitive ability.  But you might also say that it ignited my morbidly obese imagination.

Tonight, while talking to Nat on the phone, I detected a scratchiness to his throat.  He was hoarse.  I asked him, “Nat, do you feel okay?”  And he said, “No.”  He did not respond in his usual rote way, tossing off a casual “yes” the way he does even when the truth was a dire “no.”  Tonight, he answered “no” right away.  I then asked, “What is hurting you?”  And he answered,”Your froat.”

Stunned, I asked Nat to give the phone back to R, the staff person he was working with tonight.  Nat understood that he was saying good-bye to me, and he said, “I love you,” which is what I say when we get off the phone, and what Nat says if prompted. Every now and then he says it unprompted, like this time. But I was too overheated to mark it.  I asked R to take Nat’s temp (normal) and to check on him in the morning.  Had he come down with strep, like Max had a few days ago?

I went through the rest of the night with Nat not far from my consciousness, wishing I could know for sure if he was feeling awful.  Knowing for sure is, for me, the Holy Grail.  I don’t know if I’ll ever know anything for sure, and all my life I’ve been able to drive myself crazy with that quest.  Having autism in my life has provided a never-ending list of things I will never Know For Sure. Tonight, I suddenly thought, “What if Nat is lying in bed, in pain from strep, and feeling like the night will never end, and his pain will go on and on, because he’s not home? How do I know he’s not sad and scared?”

I brought this to Ned, of course, because I was immediately filled with too much pain to bear.  Ned said, “Why would he think that?  He knows the drill by now.”  And — splash!  Out went the fire.

I realized that it is just so easy for me to work myself up, believing the worst, imagining an entire Dante-like world of horror in Nat’s mind, simply because I don’t know for sure.  And what’s more, it seems like in doing so, I miss out on the perfect little gem of reality that Nat put in my hand tonight:  not only the “I love you,” but even better:  he told me how he was feeling, for real.  He took care of himself.


I torture myself too, and generally, I’ve worked myself up over nothing, and may have missed out on something wonderful. I’m a true believer in mommy’s “sixth sense”, and try to rely on that when I feel my oldest is under the weather. Until the day he can communicate, in some concrete way, “mommy, I’m sick”, I’ll continue to worry. That’s just how it is.

— added by kim mccafferty on Wednesday, May 19, 2010 at 2:06 pm

I can so relate to this Susan. Last week the staff at my son’s home sent him to work. His job coach brought him back because he did not look well and my son told the job coach he became ill the night before. I was so grateful that his job coach was so attentive and caring and that my son provided information. My question herein lies, why didn’t the staff notice my son was ill? Did he tell them and they dismissed it? I also tend to imagine the worse case scenario, sometimes my intuition is wrong and sometimes it is right.

— added by Jane in Wisconsin on Wednesday, May 19, 2010 at 2:10 pm

That’s wonderful, really remarkable. I think you’re right that he understands much of what’s going on but he has difficulty expressing his thoughts/feelings. Slow, simple speech may “get through” to him very well. I’m so happy for you.

— added by Sara on Thursday, May 20, 2010 at 11:32 am

Hi Susan,
how beautiful. Yes, so difficult to let go. Each step our children take which might appear small in the typical world – is huge in the scheme of our autistic lives. I can so relate to the need to “tame” our imagination. Lately instead of thinking of “the worst that could happen,” I am trying to use my keen sense of drama to envision “the best that could happen.” And at these times… I even smile!
Many blessings to you and thank you for always sharing your truth and sharing it with such beauty.
In Joy,
Elaine Hall
Author, Now I See the Moon.

— added by Elaine Hall on Thursday, May 20, 2010 at 11:22 pm