A special mother's solitude - be the support network, be the village | Lau Patrón | TEDxUnisinos

Lau Patrón is a publicist, writer, and the mother of João Vicente, a smiling boy with a very rare genetic autoimmune syndrome called SHUa. One of the crises of the disease caused a very serious stroke. João lost control of his body, but he didn't lost his joy. A few years ago, Lau created the Avante Leãozinho page where she shares, in enlightening texts, her reflections about inclusion and her acceptance process. She also welcomes other families to share their similar stories. Lau has been developing more projects in this direction, dreams big, hates the word "inclusion," and believes only in change that comes through affection. She also believes in a new understanding of diversity as strength, not weakness. "We will build a better and more innovative world when it is built to embrace everyone as they are." About to release of her debut book, she calls herself a "writer out of necessity" and keeps saying that "life is wonderful."

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx

It takes a village to raise a child.

So they say.

Unless this child has special needs.

This is the limit of this beautiful
African proverb that's said so much today.

When it comes to this special motherhood,
this motherhood that nobody wants,

that nobody sees,

and we're all scared to talk about,

we cross an important line,

and on the other side of that line,
the village falls apart.

According to the UN, one billion people
in the world have some type of deficiency.

One billion out of 7.5 billion.

Did you know this?

I didn't know.

Five years ago, I didn't know
many of the things I know today,

for the simple reason
that I didn't need to know.

I never wanted to be a mother.

I never thought I was capable
of raising another human being,

being responsible for teaching them
all that I, myself, didn't know.

I never thought I was good enough
for the godlike position of mother.

But life doesn't come easily for me.

I was 22 years old, had no desire,
and I was pregnant.

I felt my life's most powerful
connection begin.

During pregnancy, my partner
and I exchanged many thoughts.

We had many doubts
about who our child would be.

We debated everything, all the taboos
that we found along the way.

We talked about affection,
donation, surrender.

We talked about an equal
and feminist education.

We thought about how to approach issues
like sexuality, race, and privilege.

We thought, too, about what we'd do

if this boy who was arriving in the world

wanted to be a circus performer,

or had a different
political opinion than ours,

or liked country music.

We thought about diversity,
but not comprehensively.

We never thought a different challenge
was about to happen to us,

that would arrive so soon,
and that we'd almost lose João.

I always wanted to be sure
my son would have love and space,

but I didn't know what was to come.

So, when João was 20 months old -

by then he was sunshine, my sunshine,

and he ran everywhere, talked plenty,
and was always up to something -

his body collapsed, out of the blue.

A very serious and violent illness,
that today we know about,

caught us off guard and unprepared.

On Sunday, we were in the park,
jumping on a trampoline and having fun.

On Monday, we were entering the hospital,

where we would spend
71 days before leaving.

I still remember how it felt
being taken to the intensive care unit,

and, at that moment, knowing
our lives would never be the same.

João was diagnosed with a rare disease,
and he suffered a major stroke.

It's difficult to talk about it even today

because these are unexpected things

that happen in our lives.

The diagnosis seemed like science fiction.

The name of the illness is SHUa,
and I'd never heard of it.

It's an often fatal
and extremely rare disease

that, up until 10 years ago,
had a 100% mortality rate.

And this is what was happening
to my son: He was dying.

During the 71 days, on many
of those 71 days, he was dying.

Because of this, when he survived,

the repercussions of the stroke
were the part of the problem

I was ready to face.

That's how we entered the totally
unknown world of special needs,

and João became part of this huge
minority of 1 billion people.

This was how the wheelchair
became his way of navigating the world,

and how I learned to read looks
and gestures, and to rely less on words.

The months when we came
back home were devastating.

João couldn't control his body anymore -

he couldn't sit, couldn't talk,
couldn't eat, couldn't walk.

The improvements
were small and slow coming.

Time had another rhythm,
and I had to relearn how to dance.

It really hit home for me
going to the school,

when, in a parent meeting
to explain João's entrance into the class,

a mother ignored my presence,
turned to the teacher, and said,

"My son is still too small
to have to live with this problem."

And "this problem" was João.

At two years of age,
my son stopped being a boy

and turned into a problem.

He understood what it's like
to be unwanted too soon.

One day, a doctor told me,
"The brain is sacred.

There's still a whole life ahead,
thousands of possibilities."

Amidst so many pessimistic diagnoses,
our fears and insecurities,

and such a hard reencounter with society,

I don't know where we got
so much strength from,

but I know one thing
about words spoken with affection -

they have the power
to echo inside us forever.

And so five years went by.

Five years of intense
rehabilitation treatments

that demanded much effort,
much study, and much courage.

Five years of watching João try,

at his own pace,

to begin communicating
with his own body again

and to overcome all the barriers

they said, for him, would be impossible.

He learned again to sit.

He freed his little hands again -
hands, today, that love to draw.

He found again the pathway of words -

words that are still few today
but that changed our world.

Each month, he was able
to stand a few milliseconds more.

He went into first grade
at the usual time.

And this loving, courageous,
and very intelligent boy

makes everything seem easy

when it really isn't.

He makes it seem easy
because João has a very natural way

of letting the pain come
and not embracing it,

and he has the most honest joy
I've ever known.

And it's his modus operandi
to choose to be in the world.

Every time that someone
describes João's case as a miracle,

I remember that this miracle was,
and still is, made from much sweat.

I speak, softly in his ear,

to tell him how proud I am
of the boy that he's become.

Some months back,

I started studying
to write a book about inclusion.

I started to interview other mothers
and professionals in the area, educators.

And in these interviews, an issue came up,
over and over, that bothers me -

the solitude of mothers
who are called "special."

Not that I hadn't experienced
this solitude before, quite the contrary.

I think that we feel it so much
that we get used to it.

But I was ignoring it.

That old thing of sweeping
our problems under the carpet

and thinking about them later,

in some other time,
who knows, maybe tomorrow.

It takes an entire village
to raise a child,

but in our cases, most of the time,

what we have are friends
who don't want to get close,

family members who are afraid
and don't want to get involved,

uncles who will never take this child
for a Saturday afternoon walk,

mothers of classmates
who don't make sleepover invitations,

birthday invitations that don't come,

grandparents who say they're too old,

fathers who are present but not much -
and fathers who go away.

Looking closely, the truth
is that, many times,

the mother is the entire
village for this child,

and she'll try to do it all
with all her strength.

She'll make demands upon herself
and attempt to perform all those roles -

and she'll invariably fail.

She has no chance.

Once, I received an invitation
for João to attend

a birthday party for one
of his classmates, a pajama party,

the kind where they have little tents
where children sleep at the party.

I froze ...

because I already knew that, for my son,

invitations are different.

I delayed days before
responding to the mother,

letting the confirmation deadline pass.

Then two days before the party,
I looked her up.

I sent her a message,

"Listen, I'll ... I think
that I'll bring João,

at least so he can spend
three short hours with his classmates,

so that he can be with the friends
in a celebration moment,

and later, I'll come pick him up.

He won't spend the night, OK?"

She responded to me,

"If you agree, I'd like to try
letting him spend the night."

I was shocked because I
didn't expect this response.

How many mothers
in her place would be willing?

We decided together to try.

And João didn't come home that Saturday.

He said that he really enjoyed it;
he was happy, and very rowdy.

She said he ate lots of hot dogs,

and that, for fun,
he knocked down various tents,

he rolled into secret meetings
of girls without being asked,

and he was the last one to sleep ...

happy.

That night, I felt like a normal mother.

Glued to my cell phone,
I was awake the whole night,

wondering if some natural phenomenon
had silenced my cell phone,

but it was normal.

This day taught me many things:

about the normality of my own son,

about how fears can keep us
from having important experiences,

about how my courage
and the courage of others,

that, when they meet, can be so powerful,

and about having a support network

willing to help.

Inclusion seems to be a difficult word.

It's a big movement that fits big spheres

and that's taught in complicated books.

But the truth is that change
fits in the hands of us all -

in the choice of small friendly gestures,

in our empathy for others,

in the opening up to diversity as a whole.

We need to change our point of view

and understand that places
can be deficient,

ideas can be deficient,

marketing, planning,
and design can be deficient.

But not people.

And that we can overcome
obvious barriers driven by affection.

(Sigh)

People ask me, "Where do I start?"

Did you look at your sidewalk today?

Would you be able to cross it
if you were in a wheelchair?

Don't use the special parking places -

not for five minutes,
not for five seconds.

They weren't made for you.

They were made
for 1 billion people, remember?

Ask at your child's school
about their position regarding inclusion.

A school that isn't able to consider

the glaring differences of my son,

won't have the sensibility to look
at the more subtle differences of yours.

My invitation goes further.

Be a village, be a support network.

You know that friend
who has a child with cerebral palsy?

Call her up today.

Ask how she is and be willing to listen.

Seems simple, but it rarely happens to me.

Or that mother from your child's class
whose child has a rare disease?

Invite them to the playground.

Put the child on your lap,
try to look like it's normal.

Sometimes, it's not so bad.

It's only different.

Inclusion isn't a favor.

It's a process of improving
the world for everyone.

It's understanding diversity
as a strength, not a weakness.

It's looking for solutions for teaching,
for traffic, and for living together

that embrace everyone as they are.

Respect that underestimates
isn't respect, it's pity.

Inclusion, for me, is looking
for others' differences

and respecting their differences,

looking equal to equal.

We've overcome many barriers in our story.

We've overcome many
that dehumanized João,

that took him out
of his little box of perfection,

of beauty and acceptability.

to reduce him to a wheelchair
or to a problem.

By the way, please,
never reduce a person to a problem.

You are taking the risk
that this person may believe it.

On the other hand, in contrast,

these same barriers made us grow a lot.

When we were dehumanized,
we became much more humane.

When I received such hard looks,

I could look at others with more candor.

When we overcame improbable
and impossible barriers,

I could find genuine happiness
because I didn't need to hide the pain.

We feel fragile when we need to ask,

but the truth is every mother
needs a support network.

And it takes a whole village
to raise a child.

Every child.

Even that child who says
"I love you" with just a look.

I want to share something
with you now, to finish up.

It's been five months since João
was able to call me Mom again -

Mama, actually.

I spent a lot of time
without this word, without this place.

And now we're on a trip,
one of our many trips,

and he gave me this gift
that I want to share with you.

(Video)

Lau Patrón: I ...

João: I...

LP: lo ...

J: lo ...

LP: ve...

J: ve...

LP: you...

J: Ma.

(Kisses)

(On stage) LP: We are the diversity.

Be the village. Be the support network.

Thank you.

(Applause)

(Cheers)