Though these are challenging times for our community and so many
others, we plan to continue to share the stories of people with autism
and their families through Spectrum Spotlights and other content. We
hope these will offer a look into the many diverse perspectives in our
community, and provide inspiring and uplifting stories when we need it
most.

Meet Leilani M.

Every morning 15-year-old Leilani wakes up to the same greeting, in
the form of a question, from her mom, Dekeda: "Are you ready to
inspire someone today?"

Described by her mom as a "super sweet ball of positivity and
energy," Leilani, who also goes by the nickname,
"Sneak," is non-verbal and was diagnosed with autism and
sensory processing disorder (SPD) at 15 months old. Though
communicating with words isn't her strong suit, that
doesn't mean Leilani doesn't use her voice to let the
world know she's ready to make a difference.

"Too often people think that non-verbal people don't have
anything to say because they can't speak, but that is so far
from the truth. Every day she's using music and song, her
talking device and even some sign language to communicate her wants
and needs with us. Just like any other teenager, Leilani works very
hard to make sure she gets what she wants when she wants it she just
goes about it differently."

From the day Leilani was diagnosed, Dekeda has made it her mission to
instill in her daughter the belief that her autism diagnosis
doesn't mean placing restrictions on her dreams. This desire to
advocate for her daughter has not only led to Leilani's steady
developmental progress, but also spurred the launch of "Walk One
Day in Our Shoes", ([link removed] ) a non-profit organization aimed at promoting acceptance and
awareness for all people with special needs through community
outreach, sensory-friendly social events, sensitivity training and
more.

"The first thing I did when Leilani was diagnosed was go online
and seek out advice from other Black moms who had daughters on the
spectrum. At that time, there really wasn't a lot of information
out there from people that I could relate to, so I wanted to help
other likeminded moms connect. It's been important to me from
the start of this journey."

Learn more about Leilani through her mom's words in this Q&A: [link removed]


What thoughts first ran through your head when Leilani was first
diagnosed with autism?

Immediately, I was relieved because I knew that a diagnosis would
allow her to receive the assistance that she needed in life. I then
became anxious because I knew that I would need to rely on other
people to provide Leilani with what she needed to excel and reach her
potential. From that day on, a sense of determination came over me
that has never left!

In your experience, how important is early intervention?

Early intervention is absolutely a life changer! You can't manage
your child's autism on your own; professional assistance is necessary.
Don't be afraid of the diagnosis / label. Allowing your child to
experience intervention early in their life not only makes it easier
for them to cope and grow, but it also teaches you how to effectively
help them on a daily basis.

How does Leilani's autism make her unique?

Having non-verbal autism makes Leilani utilize all of her senses much
more than we do. She can sense "good energy" in people within a few
minutes of meeting them. She is acutely in tune with music and can
hear the smallest mosquito buzzing around her. It's fascinating to
watch her daily as her senses are heightened. She sees, hears and
feels EVERYTHING!

Tell us about some of the things Leilani struggles with as a result
of her ASD.

Not having speech is her biggest struggle. Yes, she uses an
augmentative communication device, some sign language, gesturing, etc.
- but she struggles to let us know what she wants / needs daily. She
becomes so frustrated as we try to help her convey needs and it is
heartbreaking to experience. Going through puberty has been extremely
rough because she doesn't understand that hormones are causing some of
her feelings and outbursts, but we can see that she desperately wants
to control them.

What are some of the things at which she excels?

Leilani taught herself how to roller skate. She has been skating
since my dad took her to the rink when she was five years old. She has
impeccable balance and has NEVER fallen! When she is out among the
crowd at the rink, you cannot tell that she has autism - she
out-skates us all! Leilani also has a strong sense of musicality. She
can hear a commercial, jingle, song one time and immediately memorize
the melodies, harmonies, etc. She never forgets a song.

What makes you most proud of your daughter?

Leilani tries so hard to communicate on a daily basis. I watch her as
she focuses on my mouth when I talk to her and I pay attention to her
as she mouths the words as her augmentative communication device says
them for her. She truly inspires me - which has led me to inspire
thousands of people by telling our story on my blog.

Since we've been social distancing at home, she has grown in her
self-care efforts and has made progress with her communication
methods. Most recently, she wanted to go for a ride in my
husband's Jeep (she loves riding with the doors and roof off).
She walked up to my husband - who was sitting on the couch, pointed to
him, pointed to his shoes, pointed to his keys then pointed to the
front door. When he asked, "where do you want to go?" She
physically took his hand and walked him through the process of getting
his shoes on, grabbing his keys and going to the jeep to take her for
a ride. Talk about communication!

What advice would you give to other parents who have a child/children
on the spectrum?

You are the loudest voice in the room! Always advocate and fight for
what is best for your child. YOU know them better than any medical
professional and cannot be afraid to use your voice to push for what
they need.

How has Leilani's relationship with her dad, her pop and
siblings played a part in her progress?

Leilani has the most amazing relationship with her younger sister -
London. At four years apart, they are extremely close and are the best
of friends. London is a mini-me; always taking care of and advocating
for Leilani and all people with special needs. It may sound strange to
hear, but at 11 years of age, I trust London to take care of Leilani
just as I do. London can tell you what a sound from Leilani means, how
to calm her during a meltdown and what to do to cheer her up. London
speaks for Leilani and protects her like no other, and Leilani watches
everything that London does and learns from her.

Leilani is close to both her Daddy and my husband (her "Pop"). Both
men have aided in her progress because they have become friends and we
are able to co-parent effectively. Although Leilani's dad and I are
not married, we remain focused on providing a loving environment for
Leilani and London. Leilani has other siblings and we all celebrate
holidays together and have vacationed at times. I'm truly thankful for
this relationship that we all have and cannot stress enough how
important open communication is across everyone.

If Leilani could be anywhere in the world right now, where would she
be?

The beach is Leilani's happy place. The hot sand, cool water,
crashing waves, cold sand between her toes: it activates all of her
senses and she enjoys it so much. Due to the pandemic, we have not
visited the beach this summer, and may not after all.

What brings Leilani the most joy in life?

Spending time with family, listening /dancing to music, roller
skating, cuddling in my bed after she wakes in the morning, being at
the beach...all of these activities put her in a true state of bliss
that is a joy to witness.

What is her favorite song and favorite singer/band/group?

"The Room Where It Happened" - performed by Leslie Odom Jr. in
Hamilton - The Musical. A close second would be "Cutie Pie" by One Way
(Yes - she is an old soul!).

What made you first decide to start your non-profit, "Walk One
Day in Our Shoes?"

As a social family, I wanted to create an event where Leilani could
party in a safe and judgment free environment, so I decided to
advertise that event on social media. At our first event we had 180
people in attendance - all with different abilities and ages! Many
parents approached me with tears in their eyes, stating that they've
never been able to enjoy a social event with their entire family
before this event. Since then, we have provided the community with 10
events - ranging from themed dance parties, to a talent show, which
was dedicated to showcasing the abilities of all individuals with
special needs. We also provide local businesses and medical offices
with necessary sensitivity training to help them to understand how to
treat and care for our community in an effective manner.

Use a few words that best describe Leilani to the world.

The. Love. Of. My. Life. Period. Also, Blessing. Fighter. Funny.
Energetic. Loving. Shady.


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