Meet Leilani M.
Leilani M., 15
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 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,” 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:
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. ?