An innovative way to support children with special needs Billy Samuel Mwape
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.