Billy Samuel Mwape: An innovative way to support children with special needs | TED

Transcriber: Joseph Geni Reviewer: Camille Martínez

It is the third of March, 2016,

and I'm anxiously waiting for my wife to deliver our firstborn son.

Seconds turn into minutes,

then hours,

without a sign of a child coming through.

Then a midwife emerges with a silent baby in her hands,

and she runs past me as though I'm not even there.

Why is he not crying?

I'm gripped with chills in my spine as I run after her in terror.

She puts the baby on a bench

and begins a resuscitation procedure.

Thirty minutes later,

she tells me,

"Don't worry,

he will be fine,

and thank you for staying calm."

He was placed in the ICU,

and though I cannot touch him,

I repeatedly say,

"Shine on, my son.

Don't give up.

I am here with you,

and you don't have to be scared.

Please pull through and let us go home.

You do not belong here."

Seven months later,

he would be diagnosed with cerebral palsy,

a nonprogressive brain injury

which primarily affects body movement and muscle coordination.

About two to three children out of 1,000 in the United States

have cerebral palsy.

I do not know the statistics for my country and continent,

because there's not much documentation.

Maybe this could be the journey that changes everything.

We named him Lubuto,

a beautiful Zambian name from my Lunda tribe

of the Bemba-speaking people,

meaning "light."

By the time he was seven months,

Lubuto's physical impairment

was predominant in the left part of his body.

Both his left leg and arm were less responsive.

He couldn't grasp items;

worse off, couldn't babble his first words

because the cerebral palsy shackle affects the muscle in his lips.

Rolling over

and other milestones that come naturally in typical babies,

couldn't be seen in our son.

Lubuto was visibly unaware of his own body.

And some specialists started preparing us for the worst

by telling us that we were going to be very lucky

if he ever sat upright and unsupported.

Before us was a gigantic, seemingly immovable mountain.

What do we do?

For the past 15 years,

I have worked as a computer programmer,

and now I'm a certified project management professional.

After the denial, crying and partial depression was over,

I began to wonder

if we could put my programming and project management skills together

to try and help the situation.

Acceptance kicked in,

and I searched from deep within for strength and any available knowledge

to help with the challenge before us.

I ordered two books online

and spent countless sleepless nights

researching neuroplasticity in a child's brain.

My extensive research indicated

that people who have strokes are able to recover

through assiduous rehabilitation programs

that activates new parts in the better part of their brains.

This left me with one big question:

If this works for grown people,

why should it not work for a baby?

I also learned that human beings pick up fundamental patterns

mainly between ages zero to five,

and after that,

consolidation of habits happens.

It was scary

to realize that we may just have five years

to figure out the immobility of Lubuto.

On such a tight timeline,

we needed to build a support system around him,

leveraging the limited resources available to us.

This was a clear project before us

which needed to be carefully executed,

and we needed a capable, self-driven team,

an agile team.

"Agile" is a methodology that we use

to execute projects with changing requirements

to achieve progressive results

in increments.

We needed to deliver quick results,

and in pieces,

considering our work was largely dependent on Lubuto's responsiveness

and capability.

The first team member I acquired was my beautiful wife Abigail,

who is luckily a project manager, too.

You know how rough that can be, right?

Two project managers under one roof.

We searched around Zambia for a neonatal physiotherapist,

an occupational therapist

and a speech therapist.

It felt like mission impossible.

We set road maps

of one to three months,

just enough planning and just in time.

We then identified features like,

"We want him to stand and walk independently,"

under different themes like gross motor, fine motor,

adaptive skills,

communication, asymmetric movement

and balance.

Next, we created sprints

to work on the stimulation of different parts of Lubuto's body.

When you're working on an agile project,

you do a series of lead-to tasks,

collectively called "sprints,"

which the team reviews after execution.

We, for example, set a goal to stimulate his left arm.

Say occupational therapists use different textures

to rub on his arm.

Physiotherapists make deliberate movements in his arm

to build the muscles.

And self-proclaimed general therapists, who was usually myself,

engage in logical stimulations

like slowly moving his favorite toy from his right hand

across and by in front of him to his left side

to prompt movement in his left arm.

And at the end of each week,

we would review our results as a team:

How did OT go?

How did physio go?

How did stimulation go?

Did we meet our goal?

Because frequent communication is very important on an agile project,

we created a WhatsApp group for quicker updates.

Failing early and picking up

is a special characteristic of agility,

and we leveraged that because our work is largely dependent on his response.

Luckily, Lubuto is a fighter,

and his determination is out of this world.

After we achieved the goal of activating his arm,

we then moved to his leg.

The activities were totally different,

but followed the similar iterative process.

I would come to learn in brain plasticity

that Lubuto was better off learning certain skills when he was ready,

even if it meant delaying him,

because he had to learn it right.

While working and managing Lubuto as an agile project,

a new team member popped up.

Oh! It's Lubuto's sister, Yawila.

We had no idea how we were going to manage the process

without disturbing him

while not making the sister feel neglected

because we were giving the brother a lot of attention.

Our daily iterations continued,

and now Lubuto was able to walk on his stiff legs.

With me cheerleading from the front as I walked backwards,

because I needed to keep eye contact with him,

I sang his favorite songs,

as we oscillated between our bedroom and the kitchen.

We then traveled to South Africa

and introduced a neuromovement therapist

to the team,

coupled with hyperbaric oxygen therapy.

These sprints were much shorter and focused on his brain,

teaching him about his own body

through small body movements.

Terry did a miraculous job.

Lubuto started opening his knees in unison with his hips.

And in our second week,

he was able to run with better balance.

He started making intentional sounds to communicate with us

as a result of the new neuropaths firing.

We returned to Zambia with amazing results.

And guess who effectively picked up the therapy?

The new team member.

Lubuto started mimicking the sister,

and soon he was learning more things good and bad from the sister

than he was learning from his team of therapists.

To make sure that he stays on track,

we built a unique curriculum that incorporates all the therapies

with teacher Goodson.

We've been blessed to have the knowledge before us

and be able to practically apply it.

Not all families with special needs children

are as fortunate as we are.

We still have backlog stories,

which is a fancy agile term for pushing failure to a later date,

in Lubuto's case, drooling and potty training.

But in iterative, little daily activities,

we managed to improve the entire left part of Lubuto's body --

from the arm,

to one finger to the other,

from the leg to the toes.

Lubuto began to roll over.

He began to independently sit.

He was able to crawl,

stand,

walk,

run,

and now he plays soccer with me in a more coordinated manner.

This has left my wife's heart and mine melting,

and we've been blown away

by the unbelievable results we've witnessed

as a result of this experimental methodology.

And now, we proudly call ourselves "agile parents."

You may be a parent with a special needs child like me,

or you could be facing different types of limitation in your life:

professionally,

financially,

academically

or even physically.

I want to remind you that, in striving for bigger goals,

dare to take small sprints.

These sprints are usually far from excellent themselves,

but they add up to magnificent results.

Thank you.