I was a journalist for nearly three decades.
My joy and passion in journalism was giving voice to the voiceless.
The irony was that at home I had a much tougher responsibility;
my kind and gentle son had no voice.
At work, as the head of international news gathering for CNN,
I had a very different measure …
for measuring my achievements,
very different criteria for measuring my achievements.
Such as meeting with popes and presidents,
or ensuring that our team safely reported from war zones,
like Iraq and Syria.
Or when I had to divert a commercial airliner
in order to make sure our people got to a breaking news deadline on time.
I directed the coverage of countless historical events,
including the earthquake in Haiti, the Tsunami in Japan, the Arab Spring,
and throughout the years received numerous prestigious journalism awards.
3 AM phone calls were something that I was very used to,
and sometimes even initiated them myself
in order to check and get an update on the status of some of our reporters,
who were assigned to a war zone or a hostile environment.
In fact, I cared so deeply for my colleagues’ safety,
that one of their nicknames for me was Mother Parisa.
(Laughter)
Yet at home, being a mother
felt like the most challenging responsibility I had ever had.
Maybe it’s not proper to say such a thing, but it was true for me.
As a first time mom, I wasn’t sure what to expect.
I kept hearing that it gets easier as they grow older
that they start sleeping through the night,
and they start talking, and you’ll know what they need.
This was not the case for us.
My son, Payam, would be up and awake most of the night.
At around the age of two, my playful and active child started disengaging.
My son was diagnosed on the autism spectrum by his third birthday.
It was such an out-of-body experience when I heard the diagnosis.
After telling us the results, the doctor gave me a piece of paper
with a list of three therapists for my son.
It was …
It’s odd how certain images stay with us.
That piece of paper was carelessly copied at an angle,
so the list was slanted on the page.
It was such an appropriate metaphor for how different things were
just about a dozen years ago.
There were so few available resources,
that this messy copy of a list of three specialists
was the best and only thing –
this top-notch development pediatrician from a very respected medical center
could offer me.
I didn’t know what to do next.
There is no roadmap.
Every child is different.
Results vary with each therapy.
There was no time to grieve.
Everyday counts.
Early intervention is key.
So I guess I went into full journalist mode and started looking for answers.
We tried everything.
I mean everything; at times I had 20 – 30 different therapists and teachers
come to our house every week.
At around the age of five,
nearly two years of intense hard work and behavioral therapies
went down the drain,
when we tried a new and somewhat unconventional method,
which unfortunately resulted in a completely negative impact
and resulted in Payam essentially being overwhelmed by sensory stimulation.
So you can imagine, this left me very cautious and apprehensive
in trying newer methods.
At home, just as in my career,
I was relentless in looking for answers and results.
I made sure Payam was nourished with the healthiest diet,
was exposed to continual learning,
and was participating in all sorts of activities.
Preparing him and hoping for him to meet his full potential.
Whatever that potential might be.
As the years passed,
Payam attended private school, was homeschooled,
was exposed to travel, news – news always on at our home.
He had endless hours of therapy, educational therapy –
such as music, speech, occupational, swimming, and horseback riding,
and many many more.
You name it, he did it.
He’s the hardest working person I know.
Throughout all these years,
Payam was only able to express himself in the most basic manner,
with a few simple words,
leaving us to wonder what he was feeling, or thinking,
or how much he understood of all that we were teaching him.
I kept my eyes open for any new methods of communication,
while remaining very cautious as to what we actually tried.
Incidentally, a few years back,
I’d heard about RPM, Rapid Prompting Method,
which essentially helps those who are nonverbal,
or non-reliable speakers to communicate
by expressing their thoughts letter by letter on an alphabet board.
As I looked into it, I got concerned
because the experts were saying that this method is not legitimate,
that it’s really not the kids who are writing,
rather it is their teachers’ moving the board and spelling for them.
I was worried about regression again,
so I did not pursue RPM based on what I was hearing from the experts.
It’s interesting though how life works.
This past year I happened to talk to two moms in different parts of the country,
only a few weeks apart, it was like serendipity,
and they both told me about their kids’ great success with RPM.
Throughout all these years, I have learned
that the best source of information are other parents with similar challenges,
and what I was reading and hearing from many of them
regarding this method was fascinating.
I also attended a workshop
where I watched kids communicate on the the alphabet board.
This is a sample of one of the RPM boards.
There are different stages to these alphabet boards,
this is a more advanced laminate board.
So I made an appointment with an excellent experienced teacher in this method,
and she treated Payam like a typical kid,
and presumed that he is fully competent.
From the very first session, Payam started showing us
that he understood everything and comprehended everything
that she was reading to him,
and started answering questions related to the lesson on the alphabet board.
I couldn’t believe my eyes.
Here was my 14 year old,
who had barely been able to communicate for all these years.
And finally, finally, we were getting a glimpse inside his thoughts.
But my skeptic journalist mind kept questioning the fact
that he was actually writing the answers on the board.
So I kept going back to his sessions week after week.
I had to double check, triple check, and quadruple check.
I watched in disbelief as Payam understood every lesson read to him,
ranging from 3D printers to how the brain works,
to Gandhi’s philosophy, and Aurora lights.
I observed him for eight weeks, eight sessions, talked to other moms,
and read an incredible book called Ido in Autismland.
Finally at last, I believed.
For so many years, we had tried so many different methods.
Gone to each session with such high hopes,
that I think in a way I was just afraid that it was too good to be true,
and was managing my own expectations and perceptions.
Let me show you a clip of Payam with his teacher,
so you can better visualize what this looks like.
And for the purpose of making it easier for you to follow what he’s writing,
the letters he touches on the board will appear on the right of the screen.
(Video starts)
Teacher: I want to …
Teacher: Thank.
Teacher: Eyes on the board. I want to thank …
Teacher: Ready? Payam: Yes.
Teacher: Every …
Teacher: You go, whatever you want.
Teacher: Everyone.
Teacher: W.
Teacher: Eyes on the board, W, H …
Teacher: Ready? W, H, O …
PK: Payam has to work so hard to control his body and eye movements as he writes.
It is a serious challenge of his fine motor, and gross-motor skills.
His teacher is transcribing what he just wrote
in order for us to follow what he’s writing
and also keep a record of his sessions.
He is wise beyond his years,
even if from the outside, you might have a different perception.
Teacher: You got it.
PK: In the interest of time,
I will read out Payam’s full message, which took him about 5 minutes to write.
I want to thank everyone who sees this,
and begins to shift their perspective to have more belief in all of humanity.
(Applause)
How many times have we been told not to judge a book by its cover?
Not to judge a book by its cover? That didn’t come out.
How often do we fail and completely judge others
based on what we think is normal or acceptable?
How do we know what they’re feeling or thinking
if they’re not able to tell us in the ways that we are used to?
Why do we presume to know their cognitive levels,
or what they will be capable of in life?
Who are we to judge?
His name, Payam, actually means message in Farsi, in Persian.
He is my heavenly message; he has been my ultimate teacher in life.
I remember early on after his diagnosis,
I was watching him playing in the backyard,
and it just came to me, not why-me not why-my-son,
instead, I thought, “Wow, me!”
Payam has chosen me to be his mom.
I didn’t know why he had picked me.
I just felt this incredible honor
that I will get to experience life with a very special son.
I have always described Payam as walking love or my little Buddha.
Not so little anymore, he towers over me.
He teaches me about patience every day and forces me to be in the present.
Now, through his letter board,
Payam regularly writes about wanting to help other non-speakers,
and wants them to know about this tool and method of communication.
He wants schools and teachers to always presume competence
and know that just because some of the students are not behaving
or responding in a typical matter;
this is not an indication of their cognitive levels.
He recently wrote:
“I think challenging the viewers to free their minds
of all preconceived ideas about non-speakers
is important to perceiving us as capable learners.”
He cares so much about spreading this message
that when I was invited to do this talk,
I asked him if he wanted me to speak about it at this setting.
I have deep respect for Payam’s privacy,
and frankly, I was quite reluctant about sharing his story so publicly.
This is what he wrote in response to my concerns:
“I think this TED event and autism need each other;
helping others is my priority.
A lot of people will learn from my experience
with learning to communicate using these tools.
Mom expresses herself so well,
I trust she is the right person for the job.”
(Laughter)
(Applause)
Thank you.
(Applause)
Thank you all. I’ll ask him afterwards how I did.
When I pressed him at the time on the privacy issue, he added:
“My story needs to be heard, happy for you to share.”
How poetic that my son gives me permission,
and in the process helps me to find my voice for the first time.
To talk about this emotional journey and personal quest.
Getting to know my son,
his thoughts, aspirations, sense of humor,
and a deeper insight and understanding into all the challenges
that he continues to face and deal with on a daily basis,
leaves me in awe of him,
and humbles me beyond any words I can say to you.
As I mentioned earlier, Payam means message.
You know that eighth lesson, which finally got me to believe?
It was about geysers at Yellowstone.
(Laughter)
Hence, my deep sense of connection with doing this talk in Montana.
Payam picked the lesson on geysers out of three other options.
The lesson was partly about Old Faithful and how often it erupts,
and throughout the lesson,
his teacher kept asking him some related questions
in order to kind of get a sense of his general knowledge.
At one point, she asked him: “What does predictable mean?”
And he wrote, “It means that I’m someone you can count on.”
She then asked him: “What’s predictable about you?”
And he wrote: “I’m a loyal friend.”
At the end of the lesson, she asked him to write about what makes him erupt.
This is what Payam wrote:
“Centuries of discrimination have created geysers of hate and intolerance,
these acts erupt and hurt the children of the world needlessly.
Teaching acceptance is my life’s work.”
(Applause)
After seeing him write those words, both his teacher and I were in tears.
Payam wiped away his own tears as he finished writing this message.
Later on that night I sat down with him,
and I apologized to him
for all the frustrations he must have felt throughout the years
and also my own recent skepticism.
He listened to me quietly,
and then just kind of moved over and gave me a kiss on the cheek.
That kind gesture told me everything I needed to hear.
For all these years, his voice has been trapped in his body,
and he has to reconcile with that fact.
Finally, a window has opened up for him to express himself
and be able to share his empathy and compassion for others.
He has been observing everyone and everything all along,
and he’s now finding the power of his voice to share his message,
his Payam to the world.
He too has a deep passion for giving voice to the voiceless,
regardless of the reason for their silence
be it disability, society, or self imposed.
Payam uses his letter board to find the power of his voice
and advocate for others.
At different points in our lives, most of us have silenced our own voice
be it at home, at school, at work, or in our communities.
Why do we do that?
And by extension,
what is your metaphoric letter board to find the power of your voice?
Thank you.
(Applause) (Cheering)
”
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