I have always written original posts for Hopeful Parents, but March is proving to be a very hard month for me. A year ago, today, my father went into a Hospice unit to complete the long slow process of his dying, three months after having been sent home from the hospital in mid-December and given a few days, maybe a week to live. He died three days later, on March 13th, 2010.
Taking care of him while I continued to still be full-time “Mom” to my twin sons (one on the autism spectrum, the other a high maintenance kid with some ADD) was what propelled me to begin blogging last February.
Last March words were flowing out of me as I tried so hard to not be dragged under by grief and obligation. This March my heart is heavy with remembrance, and I am finding words about anything other than mourning and memory to be slow and labored in coming.
Last March as I watched my father reduced to a pre-verbal state, it threw me back to my son’s struggle to become verbal, and I wrote a long post about that strange confluence. This was back in my blog’s beginning when I had about ten readers who were not close friends or family members. Reading back over my posts from that time (as I am wont to do as I work to process my revisited grief this month) I realized that I would like more people to hear those thoughts I had written about being verbal.
So for my post today, I am condensing and excerpting that old post, leaving off most of the section about my father (especially the unsettling and gory medical details), and focusing on my son, Jacob. If you want to read the whole post, it can be found, here:
My father is in a post-verbal state, which is like and so unlike my children when they were pre-verbal; situationally parallel, but oh so emotionally disparate. You always remember your developing child’s first words (especially when they have been extraordinarily long in coming), but what about your deteriorating parent’s last? How can you know that you’ve heard it, and that there truly are no more words to come?
When Jacob was a little babe, he had all the earmarks of becoming a language learner: he cooed, he babbled, he goo-gooed on time, he could and would mimic words with perfect diction. One time he reached up to grab my hand while I was changing him; “Careful” I said and he repeated it back to me, clear as a bell.
But then it didn’t happen. He froze there. He wasn’t talking. As he got older and the specificity of his issues were becoming apparent, I realized how un-hooked speech is from language. Language in all its human-making glory, requires communicative intent and Jacob had absolutely none.
As time went on he could label like a champ. Hold up a cup he said "cup", show him a running faucet and he said "water”, but when he was thirsty? He would just cry and cry. The parts of his brain that needed to engage to know that these wordy things could be used to communicate his needs, his wants, his feelings; those connections just hadn’t been made yet. The first time Jake made a request, found words to be of use and not just a neat parlor trick for labeling stuff, I cried and cried in relief.
Ask anyone what makes us human, what separates us from our animal cousins, and one of the first things they’ll say is language, the ability to communicate thoughts and feelings. As we learn more about animal communication and how they sometimes can do even that, the distinction is often further refined, drawing the human line at the concepts of abstraction and self reflection, our ability to ponder and pronounce upon the parameters of our existence. All this, my son Jacob eventually gained, and my father has now lost.
However, this is all such a simplification, since my father, though stripped of his ability to communicate through words, though un-moored in time and space, is still quite thoroughly human. Those of us who have known and loved him when he was still who he was, can still see the Jim in him.
My sister Lois, who works in the field of elder care, has said that Dad is not ready to die yet, because he is still processing something, even though we can’t know exactly what. We have to trust that he’s there in his brain somewhere, doing just that, the final work of his life, getting ready to go.
I also think of all the non-verbal autistic children, communicating through their behaviors, communing with the infinitesimal and the infinite that we, too busy, often overlook. These children whose loving parents know how fully human they are, who hold unknown universes inside themselves, are so often treated so shabbily by the world, cast off because they have no words to trade.
I think how thin the line is between Jacob and his non-verbal brethren; I think about the time before words, when we did not know if they would ever come, if he would ever understand us, or live “self directed” for the rest of his life.
It’s called the “autism spectrum” because it stretches so far across many sometime divides, and connects us all. As parents of children on the spectrum our hearts stretch, too, take us to places we never imagined, never needed to imagine in the time before.
And so I go about my daily life. I pick Ethan up at school, try to look like I understand as he proudly shares his latest Pokemon conquests. I gently correct Jacob yet again when he calls the female cat “he”. I hold my father’s hand as he mumbles and raves. I sit down to write about it all, using words like tiny lifesavers, keeping myself afloat, here in the choppy waters of my little pond, my wavelength of the spectrum, my slice of life.
Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation" She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.
oh Varda...this is really an amazing post and I have no idea how you wrote it with all that you had going on. You are an inspiring amazing mother and daughter. Truly.ReplyDelete
Agreed. Your honesty and genuine insight are extremely refreshing. You make a lot of great points about the nature of language, especially what we realize about it when language is absent. You have certainly gained valuable wisdom through your experiences, thank you for sharing them!ReplyDelete
So beautiful and tender, Varda. After college I worked for three years as a carer for adults, most of whom were elderly and had dementia or had lost language because of a stroke. It is painful so see the inability to communicate by the most vulnerable, it is even worse when they are mistreated because they are unable to tell us about it. There is always a human being inside. Always.ReplyDelete
Grateful that you shared these difficult feelings and ideas with us, and so beautifully.ReplyDelete
so touched by your amazing wordsReplyDelete
Your post resonates with me deeply as we share similar circumstances. My mother suffers from the crippling effects of dementia and I am often struck by how similar her struggles are to those of my children. Fear not dear friend, for I sail the same choppy waters of a similar small pond.ReplyDelete