"Erin helped me more than anyone else. She taught me to read. She believed in me."
--Daniel's answer today when asked what he would like to tell the world about Erin
Dozens of professionals--teachers, BCBAs, STs and OTs--have worked with Daniel over the years. But there has been ONE who understood Daniel on a meaningful level, sought to challenge him and helped us finally find a path to effective communication.
--Daniel's answer today when asked what he would like to tell the world about Erin
Dozens of professionals--teachers, BCBAs, STs and OTs--have worked with Daniel over the years. But there has been ONE who understood Daniel on a meaningful level, sought to challenge him and helped us finally find a path to effective communication.
I am not sure how long ago it was--maybe three or so years ago--but one day after a session with Daniel, Erin said to me, "You know he can read a lot of words, right?"
It was a moment I never will forget. Though embarrassed to admit I was unaware, I also knew, without question, that Daniel had been underestimated his entire life.
Once I started looking for the evidence, there it was. I could ask him to spell a word, and he would try his best to approximate the sounds of each letter. I could write a question and put it before him--tell me an animal that swims, what do you eat at I-hop--and he would he would do his best to verbalize the answer.
Erin suggested that we push spelling at home and aim for typing. But she cautioned me about something she foresaw as a significant obstacle: When Daniel tried to type, he frequently hit the button just next to, or above or below, the letter he wanted. Erin had a theory--she wondered if Daniel wanted to see the letter simultaneously with the typing. In other words, he was bothered by the fact that the letter isn't visible as his finger hovers above the key. So she made a pseudo "keyboard" on paper. Picture 26 square boxes, each with a single letter inside and also with the same letter just above, so that you can touch a letter while simultaneously seeing it just above your finger.
We started using our paper-printout-keyboard. I'd ask questions, and he would touch letters, spelling out words like pizza, cupcakes, swim, swing, dog, cat.
(Daniel told me, after I read this post to him for his approval today, that Erin's theory wasn't accurate. He said that "it was hard to get my eyes to focus on the letters" and that it was particularly hard to focus on the letters on the inner part of the keyboard. I wonder if the paper keyboard was a bit of help, though, in part because the letters were much more spaced apart than those on a typical keyboard and there was no glare of a screen. In any event, we wore out quite a few).
(Daniel told me, after I read this post to him for his approval today, that Erin's theory wasn't accurate. He said that "it was hard to get my eyes to focus on the letters" and that it was particularly hard to focus on the letters on the inner part of the keyboard. I wonder if the paper keyboard was a bit of help, though, in part because the letters were much more spaced apart than those on a typical keyboard and there was no glare of a screen. In any event, we wore out quite a few).
It is not easy for me to describe what the process of encouraging Daniel to spell was like. It was clear to me that Daniel knew how to spell a lot of words, BUT it wasn't easy for him to demonstrate what was in his head. He was missing his intended letter frequently--hitting a neighboring letter instead--and he needed to re-scan the keyboard after every touch. It could be incredibly frustrating for him.
Daniel always has readily and openly shown his love for people--with a pureness and sincerity that has not diminished, even in adolescence. Yet, his frustration could be formidable. His efforts to type could turn into despair, anger, even rage.
So I would back off.
One of the more challenging aspects of parenting a child with a significant disability is knowing how much to push and how best to do it. It is a heart-breaking dichotomy--accepting the idea that your child has severe limitations versus embracing the idea that he can achieve what many have suggested is not possible. Are your efforts the stuff of parenting grit, or are they cruel--the equivalent of expecting a penguin to fly?
I would witness his frustration, his rage, and I would revert to the parent just trying to make him happy. But in my heart I always knew--this child who found so much joy in life despite serious obstacles, who is transfixed by the way a waterfall cascades down a mountain-side, who climbs aboard roller coasters with glee, who loves nothing more than the attention of his sister Olivia, whom he has adored from the moment he saw her.....
He needed a voice.
He needed one to be safe.
He needed one to be at peace.
So I would try again. Out with the paper keyboard.
I would sing his favorite songs, stop mid-line and wait for him to try to spell the next word. I asked him to spell the names of all our family members, his favorite foods, his favorite places. What is an animal that has black and white stripes? What do you put on your pancakes? What instrument does Olivia play? Spell, spell, spell.
Sometimes we used wooden letters. Sometimes we used giant paper stencil letters. Eventually we started to use the keypad accompanying Proloquo, an assisted communication program better known for its icons. (It can be a pain keeping up with a paper keyboard). We sometimes used a stylus.
He would try so very hard. At times it was beautiful. At times it was ugly.
And I would stop again.
Daniel and I existed in this ebb and flow of try and stop, prod and retreat, push and relent.
For a very long time.
I made lots of mistakes.
The one constant was guilt. Parental guilt, how I know you so damn well.
And then my mother died.
Her death was completely unexpected.
We were in town for a visit when she died.
She was talking to Daniel as he ate breakfast. A few hours later she took her last breath.
If fear could immobilize, I would have been frozen in place.
My dad, who lived to make my mother happy....
My daughter, who basked in my mother's attention....
How would I help them?
But, most of all, how would I help Daniel....the boy who loved to follow his Gram around the kitchen as she cooked, who giggled when he heard her voice on the phone, who still, even as a teenager, loved to snuggle up next to her ..... the boy who couldn't even tell me what he was thinking....
How would I console this child who always was such a mystery to me?
Somewhere in the mix of shock and grief, I pulled out the I-pad and said:
Daniel, I need to know that you understand what has happened.
Can you tell me how you are feeling?
His anguish was evident in his face. But still I needed more from him. I needed words.
He gave them to me.
With a calm, focused intensity he typed: S-a-d
Tell me why.
G-r-a-m
Yes, tell me what has happened.
D-i-e-d
And he sobbed.
We both did.
But with the tears came the stirrings of hope.
It was the moment I started to turn away from accepting limitations and embraced the notion that there really was a way for my child to express the things he needed to say.
That was ten months ago.
It has not been a linear path.
At times it has been beautiful; at times it has been ugly.
And there was another catalyst, another defining moment in this journey, that I will get to in time.
But we are now fully down a path of discovery.
We have gone from single-word answers to specific questions, to multiple sentences in response to open-ended questions. And, glory be, he is initiating communication. He is composing letters, completing writing assignments. And most importantly, Daniel is telling me about himself.
I have never enjoyed getting to know a person more.
One beautifully typed word at a time.
Daniel always has readily and openly shown his love for people--with a pureness and sincerity that has not diminished, even in adolescence. Yet, his frustration could be formidable. His efforts to type could turn into despair, anger, even rage.
So I would back off.
One of the more challenging aspects of parenting a child with a significant disability is knowing how much to push and how best to do it. It is a heart-breaking dichotomy--accepting the idea that your child has severe limitations versus embracing the idea that he can achieve what many have suggested is not possible. Are your efforts the stuff of parenting grit, or are they cruel--the equivalent of expecting a penguin to fly?
I would witness his frustration, his rage, and I would revert to the parent just trying to make him happy. But in my heart I always knew--this child who found so much joy in life despite serious obstacles, who is transfixed by the way a waterfall cascades down a mountain-side, who climbs aboard roller coasters with glee, who loves nothing more than the attention of his sister Olivia, whom he has adored from the moment he saw her.....
He needed a voice.
He needed one to be safe.
He needed one to be at peace.
So I would try again. Out with the paper keyboard.
I would sing his favorite songs, stop mid-line and wait for him to try to spell the next word. I asked him to spell the names of all our family members, his favorite foods, his favorite places. What is an animal that has black and white stripes? What do you put on your pancakes? What instrument does Olivia play? Spell, spell, spell.
Sometimes we used wooden letters. Sometimes we used giant paper stencil letters. Eventually we started to use the keypad accompanying Proloquo, an assisted communication program better known for its icons. (It can be a pain keeping up with a paper keyboard). We sometimes used a stylus.
He would try so very hard. At times it was beautiful. At times it was ugly.
And I would stop again.
Daniel and I existed in this ebb and flow of try and stop, prod and retreat, push and relent.
For a very long time.
I made lots of mistakes.
The one constant was guilt. Parental guilt, how I know you so damn well.
And then my mother died.
Her death was completely unexpected.
We were in town for a visit when she died.
She was talking to Daniel as he ate breakfast. A few hours later she took her last breath.
If fear could immobilize, I would have been frozen in place.
My dad, who lived to make my mother happy....
My daughter, who basked in my mother's attention....
How would I help them?
But, most of all, how would I help Daniel....the boy who loved to follow his Gram around the kitchen as she cooked, who giggled when he heard her voice on the phone, who still, even as a teenager, loved to snuggle up next to her ..... the boy who couldn't even tell me what he was thinking....
How would I console this child who always was such a mystery to me?
Somewhere in the mix of shock and grief, I pulled out the I-pad and said:
Daniel, I need to know that you understand what has happened.
Can you tell me how you are feeling?
His anguish was evident in his face. But still I needed more from him. I needed words.
He gave them to me.
With a calm, focused intensity he typed: S-a-d
Tell me why.
G-r-a-m
Yes, tell me what has happened.
D-i-e-d
And he sobbed.
We both did.
But with the tears came the stirrings of hope.
It was the moment I started to turn away from accepting limitations and embraced the notion that there really was a way for my child to express the things he needed to say.
That was ten months ago.
It has not been a linear path.
At times it has been beautiful; at times it has been ugly.
And there was another catalyst, another defining moment in this journey, that I will get to in time.
But we are now fully down a path of discovery.
We have gone from single-word answers to specific questions, to multiple sentences in response to open-ended questions. And, glory be, he is initiating communication. He is composing letters, completing writing assignments. And most importantly, Daniel is telling me about himself.
I have never enjoyed getting to know a person more.
One beautifully typed word at a time.
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