Witness (#461)

“Hi, Veronn ikka!”
Said Charlie to my in-laws’ live-in nurse as she came in the front door from a walk.

So Charlie greeted someone when they came into the house: Big deal.

Charlie did so unasked, unprompted, uncajoled. Further: We have not made a point of telling Charlie “that is Veronica.” Charlie has picked up who she is on his own.

It is no big news to report on this—Charlie’s talking has gotten clearer, his phrases longer, and his utterances more frequent over the past two months.

It is big news because that “Hi Veronn ikka” was clear, spontaneous, and said at just the right moment. Jim, Veronica, Grandpa, Grandma, and I all heard it—we witnessed it, and it made my day. And noting that Charlie did this, and writing about it here, are (to me) what living autism every day is all about.

Those two words Charlie said mean far more than their face value. When you are the mother of a “minimally verbal” “severely language delayed” son, every word (every sound or syllable, really) becomes a talisman, a little spot of gold that sustains you through the rest of the day and ever after. “So long as men can breathe, or eyes can see / So long lives this, and this gives life to thee” wrote Shakespeake in his 18th sonnet and that conceit is, truth to tell, one reason I write here every day on Autismland. And I like, too, to hope that my daily writing here about my son Charlie who has autism might provide a witness and some hope to “what it’s like”—“it” being life with autism as parents and families and teachers and therapists who seek so hard to understand know it.

There was more to our Sunday than those two words: There was taking the train to Hoboken and eating fries and burgers at a counter because it was raining steadily; there was Charlie getting the hang of how hard to pump his legs to go up a hill on his bike; there was rice thrown and me saying quietly to Charlie “tell us ‘I don’t want rice'”; there was Charlie taking himself to bed at 8.30pm, not being able to sleep for two hours and smiling pleasedly when he thrice took himself up to pad into the bathroom. These things give me hope too, though in ways less obvious to the average person, perhaps, but not to the trained Autismland eye.

And why a mere two words from Charlie can foster so much hope and be such a witness is why Jim put together the autism advocacy conference that will be held on October 27th at Fordham University in New York City. The conference is not about seeking a cure for autism, or discovering its causes. It is about trying our very best to look at where our kids are right now, at who they are and at trying to understand what can we do not only to help them, but to help the “rest of us”—society, community, the general public, those who have no idea of what autism really is—understand how we can change to make the world a better place for autism, for the neurologically, cognitively different. It is about autism advocacy as needing to start not with changing our children to fit some preconceived “dream” we once had for them, but in seeing where our children are right now today, and loving them as they are, for what they are, and trying to understand from there what we can do for them.

“Hi, Veronn ikka!” was where Charlie was today and no two words could be filled with more hope.

9 Responses to “Witness (#461)”
  1. Oh Charlie…sweet sweet Charlie.

    This just went straight to my heart.

  2. Lisa/Jedi says:

    Eloquent & evocative, as usual Kristina 🙂

  3. Eileen says:

    HOORAY for “Hi, Veronn ikka”!!!!

  4. Anonymous says:

    even from a very verbal guy, simple, unprompted, appropriate words spoken from the heart and mind at a time that makes sense feels monumental to this mom.

    i see and honor and applaud where charlie is right now!!

  5. Charlie and so much good cheer from all of you leave me speechless!

  6. Daisy says:

    We (parents of autism) look for joy where we can find it. Surprises like this one are priceless!

  7. I have serious goosebumps right now and big heart exploding with excitement for you. That is awesome! I can’t imagine how happy you were to hear that Kristina!!!!!!!

  8. Kathy says:

    A real milestone for your gorgeous little guy. I know exactly how you must be feelin’ Kristina.
    I am “cock a hoop”

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

  • What’s all this about?

%d bloggers like this: