Young artisan Lila used one of her favorite therapy projects to begin her first business before most kids even think about starting elementary school.
Introduce us to Lila.
Lila is a vibrant and active 7-year-old girl who has Down syndrome. The moment she was born, our lives changed forever.
We knew Lila would have Down syndrome before she was born, but we didn’t know a lot about trisomy 21. When learning about her diagnosis, we were immediately met with “the facts” that this extra chromosome would cause her health issues and limitations. Because of that, for a time we grieved lost dreams of what our little girl would be able to do, and we worried about the health issues she might have. I have come to learn that the grieving process is totally normal for parents to do. At the time, we didn’t know anyone with Down syndrome, so we couldn’t see how skewed “the facts” were. They aren’t a complete picture, and everyone with Down syndrome is unique.
The second we heard our baby girl’s first cry, Down syndrome was far from our minds. She is our precious Lila who teaches us something new every day. As she has grown, Lila has continually surprised us with what she CAN do.
The girl got a double dose of stubbornness and sass! She loves sparkles and wants to be an Elsa impersonator when she grows up. She loves eating blackberries off the vine, snuggles with her cat, wearing princess dresses, swimming and making art. She thinks it’s hilarious when we pretend to accidentally drop something or fall down. If “Let It Go” is played, she will stop what she’s doing and dance. Her mischievous smile and tight hugs seem to solve all of life’s problems if even for a second — that is if she feels like stopping to hug at the moment.
At first, we were afraid that her health would hold her back, but it doesn’t. She had open heart surgery at 14 months old, and as traumatic as it was, she bounced back to her normal self within weeks. She is doing well, and we check in with a cardiologist every year. She has a thyroid condition, but she doesn’t notice it thanks to the help of a daily medicine. She just had surgery last week to repair a perforated eardrum, but she was back to school within days. Having the right doctors and specialists will help her to live a long, healthy life.
She is in first grade in Conway, and she loves her ever-so-patient teachers Ms. Kim, Ms. Kathy and Ms. Dawn. We celebrate what she accomplishes instead of focusing on what she “should” do and when. She gets occupational, physical and speech therapy to help her grasp skills she needs to learn. She works very hard at her own pace.
How does Lila communicate?
One of Lila’s biggest struggles is communicating through speech. She easily learned sign language as a baby, and we communicated that way until she started trying to speak. She has had some hearing problems due to ear infections, so we think that may contribute to her problems pronouncing words.
As she grew, we tried communicating through a picture exchange system, but that didn’t fit her well. Then her speech therapist recommended that we try an assistive device. Now we use an iPad with an app called LAMP to help her speak her mind. She took to that almost immediately, so we have been using that for a few years. She just had surgery on her ear, so we hope that will help her speech development.
Tell readers about her business.
Lila has been selling lanyards that hold work IDs in The Blue Umbrella for a year and a half, and in fact, she has sold over 100 of them! One of her favorite activities in occupational therapy was stringing beads, and we have turned that skill into a business. She is usually bouncing around everywhere — rarely sitting — but when she works with her hands, she can stop and focus for much longer time spans.
Lila is all about the glitter and bling, and those are her favorite beads to use. Besides buying supplies, she gets to use her money on toys and princess dresses, but right now, she is saving for a brand-new iPad! We dream that someday she will have a job that allows her to do what she loves!
What do you want to tell people about others like Lila?
I wish people would look beyond her diagnosis when they look at her. I wish people wouldn’t immediately think about how limited her life is. She loves her life, and she is loved. Down syndrome is just one part of her life.
Some believe that because Lila can’t speak, she must be dumb. She may not be able to speak sentences, but Lila is sassy, smart, sneaky and sweet. She’s like any 7-year-old. She has talents, and she is very social. It’s hard to see our girl left on the sidelines a lot of the time because she wants friends just like everyone does.
What advice do you have for kids like Lila?
Lila would give a high five, grab her friend’s hand and move on to the next thing! That’s what she does. We translate that as, “take it one thing at a time, and never give up!”
What advice do you have for parents of kids with special needs?
1. Don’t underestimate your kids! Lila may not do things the way I think she should do them, but she does them her way. When she was younger, we thought she could not walk backward, but as it turned out, she just didn’t understand the point. Why walk backward when you can turn around and walk forward? (I told you about the sass.)
2. You don’t have to feel like you’re alone. We teach Lila and learn what she needs through an army of teachers, therapists, specialists, family and friends. Join a community of other parents and families who know what everyday life is like.
The Down syndrome community in Arkansas is welcoming, and having that support is key. We celebrate the good times together, and we support each other in the hard times. If you want to meet with other people with Down syndrome and their families, you’ve got to visit GiGi’s Playhouse Little Rock. They have free programming and resources, and they can point families in the right direction to find these groups.
For others with typical children, I just ask two things:
1. Ask us your questions. We want to help you understand Lila and people like her because we want a more inclusive community for her to live in. I truly believe that as we break the stereotypes and misconceptions about Down syndrome, barriers like limited jobs for people with disabilities will begin to disappear. I don’t want you to be worried that you will offend us. As long as you are open-minded and willing to accept her, I’d love to answer any question you have.
2. Please take the time to include her. Lila has things to contribute, and what she thinks matters. The world is better with her here! We all have something different and special about us, don’t we? We all want to be loved and included, and everyone needs that in a different way. When you care about someone, you find a way to connect with them no matter what you have to overcome.
Heather Honaker is circus ringleader for three kids 4 and under — two typical, one not, but they all think they are special. You can follow along as the messiness unfolds around her family by reading the Typically Not Typical blog.
If you know of any Extraordinary people you’d like to see featured, email firstname.lastname@example.org.
Originally published in the November 2020 issue of Little Rock Family.
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