Inspired by their autistic non-verbal daughter, Lanier, Leslie Weed and her husband Bobby made it their life’s mission to help other families on the First Coast affected by autism by founding HEAL (Helping Enrich Autistic Lives) in 2004.
To date, the HEAL Foundation has given over $2 million dollars to our community. The significant, extensive work of HEAL supports the local autism community through a variety of specialized programs, 15 summer camps, autism service dogs and the donation of 350 iPads for ESE Classrooms throughout Northeast Florida.
Until Lanier was 16, the Weeds thought she had the mental capacity of a 4-year-old. But through technology and facilitated communication on an iPad, Lanier began communicating with her family. She could not talk or hold a pencil and had behavioral issues which turned out to be pure frustration for having her intelligence intact, but not being able to communicate. Currently, a documentary called Unlocked is being filmed featuring Lanier and takes a look at how facilitated communication is giving a voice to non-verbal autistic kids.
Leslie lives in Ponte Vedra Beach with her husband and has three daughters, Haley (25), Carlisle (23) and Lanier (20).
What is the one thing that motivates you and pushes you to do more?
My daughter and families who struggle daily with the challenges of autism is my motivation. The work is never done, there is always more to be done. When my daughter was diagnosed in 2000, the number of children diagnosed was one in 500. Today, autism has become an epidemic with the numbers exploding to one in 38 — four out of five are boys. At this rate, the schools are being overburdened and are struggling to support the sheer number of those with autism in their schools.
What is the biggest challenge you’ve had to overcome?
AUTISM. Watching my perfectly developing baby, who scored a 10 perfect APGAR scale, hitting every milestone until suddenly at around 16-18 months, regress into autism, losing all speech and motor skills. It was traumatic and devastating to the entire family. I had never met anyone with autism in my entire life. It seemed like the doctors and specialists had the same problem of not understanding autism. I had to get real smart real fast so I could begin to help her. Insurance did not cover the condition, and we had to pay exorbitant costs out-of-pocket for speech, physical, occupational therapies, etc.
How do you balance work, time with family and time for yourself?
During the “crisis” years, there was no time for “myself” because my husband traveled during the week, and I had three young children. Having a child who is profoundly affected with autism and cannot speak, unable to tell me where it “hurts” or why she is screaming and crying and sleeps very few hours, is truly the greatest challenge (especially with two older daughters who have their special interests and activities). It is so important that the siblings don’t get lost in the abyss of autism. So I scheduled my hours to work while they were in school and was home when the bus dropped them off. After homework, I could continue to work from my home. My daughters are now out of college and it is much easier these days to get things accomplished.
How do you define personal success?
For me personally, setting goals, achieving them, being happy and fulfilled while making a difference and serving others.
What advice do you have for other moms?
You are the mom, you are not their friend. You have a lifetime of being a friend when they become an adult. Kids need structure and rules to follow. They need to have chores and help out, and there must be structure and rules to follow, set clear guidelines, get involved in a service organization and help. They will learn that “giving” is so much more fulfilling than “receiving,” it gives them a sense of self, value and purpose. The days go slow, but the years go by fast. Laugh a lot and don’t take yourself so seriously.
A question for Lanier, Leslie’s 20-year-old daughter using the aforementioned technology:
What do you love most about your mom?
Te learn more about HEAL, visit healautismnow.org to see all the amazing things they are doing for autistic people in our community.
The annual HEAL Autism Walk will be held Sunday, April 29th at the Jacksonville Zoo & Gardens at 8:30 am. Click here to register, create or join a team.
Moms Doing More in the 904 is a new series that highlights local moms who are making a big difference in our community. Want to tell us about an inspiring mom who is doing something great? Tag us on social media @JaxMomsBlog with the hashtag #MomsInThe904.
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Beautiful family!