Thursday, August 23, 2012

More than words, part 1

I love to talk.

It began with my family and childhood friends and blossomed at school and in my initial work as a journalist.

Talking was central to what I judged to be most meaningful in life.

I had the gift of the gab and found silence awkward and uncomfortable – a void I needed to fill. If I was nervous, I could talk your ear off. As a child, I grilled my babysitters on endless subjects when they turned off the light and tried to extract themselves from my bedroom:

"What is your favourite colour?"

"Who is your religious leader?"

"What if it was the third period of the 1972 Canada-Russia hockey game and Paul Henderson had to go to the bathroom?"

Once a psychologist told me that I used conversation to control situations and glide above my own insecurities, dictating the topics and drawing out more from a person than they probably wanted to tell.

But I was raised in a home where talking to people and showing an interest in their ideas and lives was highly valued.

Before Ben, I always thought of speech as being automatic and related only to thought: you think something and then it comes out in words.

I didn't realize that, in fact, talking is like walking – a motor activity involving a complex interplay of breathing skills and lip, jaw and tongue movements.

It was incomprehensible to me that someone couldn’t speak. I guess I had read about children who were non-verbal, but it was something completely outside my experience.

Ben babbled exuberantly at 3 weeks. I still have the photo D'Arcy took of him propped up on my knees facing me, interacting. At seven months, other mothers in a play group marvelled when I passed him to someone to hold and he cried clearly: "Mama, Mama!"

At 1 he referred to his favourite Sesame St. character – Elmo – as Elma. Bottle was "bo" and "Be go bo" meant Ben go bottle. Apple was "apu" and Daddy was "Uma." His pediatrician noted that he was talkative and sociable for his age.

Severe recurrent ear infections kicked in then and we didn't know Ben also had a permanent moderate hearing loss in both ears – made worse by constant fluid in his ears. We later learned he had a submucous cleft palate and related abnormality of his ear canals. This explained his constant ear infections that didn't respond to prophylactic antibiotics or eight sets of surgically-placed tubes to drain what one ENT described as "copious thick black fluid.”

It was at about this time that I learned that severe speech delay or absence of speech was a symptom in some descriptions of Ben’s syndrome, called Langer Giedion.

Given my love of talking, and the general value our culture places on speech and people who speak well, this frightened me.

The anxiety that had attended waiting for Ben to sit, stand up and do other typical motor activities – while taking him to therapy and carrying out a million exercises at home – was now overshadowed by the weight of: "How am I going to get Ben to talk?"

I asked about speech therapy, but learned that in Ontario it didn't traditionally start until age three.

At about age two, I managed to get a speech therapist through our home-care service to visit, and she assessed him as being at an 18-month level for speech (I often go back to her document, just to prove to myself that he really did have some speech early on).

She came for two sessions and was fabulous -- but she was retiring. The person who replaced her was a new speech pathology grad who specialized in working with seniors with swallowing disorders. She spent her visits chatting with me and didn’t come for long.

We began private sessions with a program called KidSpeech. “Ben says ‘owl’ very clearly,” wrote the therapist in April 1996.

One night as I went into his room for a second time to tuck him in his crib, he said, as clear as day: "Hi Mom."

Another time, he was pulling vegetables out of the crisper and said: "gwee peppa" for green pepper.

He said up and “oben” for open and “bubbu” for bubbles and “weh” for web (as in the spider's web in his Eric Carle book). He said "Gobuh" for "Goldbug" – a favourite character in his Richard Scarry series. “I wa” was I want.


It's so funny how many things we take for granted. Until we're in a situation where we're forced to break down all the steps that are necessary to take one "simple" action, we don't realize how complicated it actually is.

For some reason, this post reminds me of how I feel when I go back to Syona's very first neurology report. The neurologist reported that she was confident that Syona would "escape neurologically unscathed." As time went on it became evident that Syona had CP. I still this funny little twinge when I think back to those words.

Really looking forward to reading the rest.

Thanks so much for writing Anchel! I think we all have those "words" in our minds -- words that indicated something might turn out one way for our child but it eventually didn't. It's almost like you want to go back to the person and say: "Wait a second. Remember when you said XYZ?"

And you're so right about normal developmental being miraculous in terms of the complexity of it, and how effortless it is for most kids.

Our journey with Ben's speech was such a long one but in the end it didn't materialize and so sometimes I think: What's the point of writing about it? Nothing changed. Or 'just get over it.' Cause it's obvious I'm not, right? And then I thought afterwards maybe it was so hard to write because I still need to learn the lessons that that experience can teach me. I wanted to sit down and write one piece about the journey that happened over at least a 10 year period but maybe instead I will go back and choose some little pieces along the way.

I'm really looking forward to the rest of the story...

Thank you for this. Like everyone has said, I'm also looking forward to future parts of the story.

Thanks for writing. I find many things you say useful in understanding what I'm going through, and it helps to put things into perspective.