Meet Leah Paulette
Leah Paulette, 3
Autism Speaks is like a family - a community where we can identify with others that can understand what we are going through.
When COVID-19 swept across the country, lives were put on hold. Businesses and schools closed. Roads, trains and buses emptied. And for many, access to screening and intervention ground to a halt.
Many parents and caregivers have been left to balance working from home with taking over as teachers, therapists and classroom aides. For Florida resident, Delmaris L., whose young daughter, Leah Paulette, was in the process of receiving an autism diagnosis, stay-at-home orders and limited access to crucial services and supports added layers to an already challenging process.
Although the pandemic delayed Leah Paulette’s diagnosis, it didn’t stop her mom from ensuring her daughter would have everything she needed to reach her full potential.
Here more about Leah Paulette’s autism diagnosis through the words of her mom in this Q&A.
What inspired you to get Leah Paulette screened for autism?
We noticed by the time Leah was a year-and-a-half, some milestones were not being achieved. She was still not speaking any words, she would not imitate and her eye contact was incredibly low. After she turned 2, she was already taking speech therapy, but we noticed some behaviors that she had developed. She began to walk on tippy toes and the stimming began: flapping hands, wiggling her fingers in front of her face, rocking her body, lining and stacking objects. She also became obsessed with peculiar objects, at some point that she would hold that object for hours and hours. She would also be so overly sensitive with some sensations that she would not tolerate to touch or feel. Before turning 3, she was referred for occupational therapy (OT) to work on her sensory/motor skills and behavior management therapy. We also got her in an early intervention program called “Early Steps.” This is when her case worker talked to us about a chance of getting Leah tested for autism spectrum disorder (ASD).
What steps did you take once you decided to have her tested?
The first step was to take her to the pediatrician, who agreed to test Leah for ASD. Then we went to a new neurologist, bringing her records and tests results from her previous neurologist. Every test done on her came back perfect (genetic and blood test, EEG, CT Scan), with the exception of her audiology test, which showed hearing loss. They decided to test Leah with the Autism Diagnostic Observation Schedule (ADOS). Personally, I started researching aboutwhat ASD was, joining support groups, reading different books, anything that would ease the moment we needed to get ready for the day of the diagnosis.
How did the pandemic affect the process of diagnosis?
The pandemic delayed the diagnosis because it caused Leah’s ADOS, which was meant to be done in April before she turned 3, to be canceled. This was a big issue because her Early Steps program is for toddlers 2 years old and younger; after they turn 3, they get transferred to the ESE program (Exceptional Student Education). With the ADOS canceled and therapies on hold or virtual, we had to wait until September for the neurologist to give Leah her diagnosis.
Without being able to conduct the ADOS, they gave us the diagnosis based on Leah's history, test results and behavior. She is still nonverbal, and we had to fill out many questionnaires to try to get applied behavior analysis (ABA) therapy approved by insurance. Even though we have the diagnosis, her neurologist still wants to perform the ADOS as soon as they are authorized.
During the time between discovery of signs and diagnosis, what did you do to get an early start on intervention in the home?
In addition to her therapies and the early intervention program, I took matters into my hands while we waited for the ADOS. With the help of support groups and her therapists, every day we practice different techniques through playtime, games, printables, etc., to reinforce language, motor skills and sensory development while having fun and learning at home. I decided to create a page to inspire others to do the same and never give up on our little ones. The page is called ''Buscando la voz de Leah'' (Spanish for “searching for Leah's voice”). I've learned that our child's development depends a lot on what we do at home as parents!
What are some of the areas in which she struggles as a result of her ASD?
Leah is still nonverbal; she'll try to say words and syllables. We are currently integrating sign language with our verbal language. She has difficulty with fine motor skills, like scooping and grasping. She is a very picky eater; she eats a limited menu, even though it's a healthy one. Her sensory development is still mild - she'll tolerate a new sensations after they are consistently shown to her. Leah's socials skills are getting better now that she's at school. Before she would only enjoy being around adults and older kids, with her peers she had very poor interaction. Her eye contact was extremely poor when she was younger, but we are working on it and it has improved a lot.
What are some of the areas in which she excels?
Leah is a fast learner; with a new game or toy she'll quickly understand its purpose. She is great at matching games, peg puzzles and stacking blocks. She has her gross motor skills well developed – one of the reasons we signed her up for a gymnastics class!
What kind of services and therapies is your daughter receiving now that she was diagnosed?
Leah is attending speech, occupational and behavior therapies, and is enrolled in PreK ESE (Exceptional Student Education) with an Individualized Education Program (IEP.) She was in early intervention before she turned 3 with Early Steps. After she turned 3, she was referred by Early Steps for ESE, a program in the state of Florida for kids that meet the criteria for any disability defined by the Department of Education. We are currently waiting for insurance to approve ABA therapy.
What thoughts ran through your mind when you heard the diagnosis for the first time?
Before the diagnosis, I had to prepare mentally for what was coming. Obviously, no parent wants their kid to have encounter any kind of obstacles. Since the early signs started to show up, like Leah not meeting some milestones, I had to make up my mind and accept what was about to eventually come. It's never easy, but it's a relief having the diagnosis, because we know with what we need to do next. I see the diagnosis of my daughter not as a label, but as source for her to receive all the help that she needs to keep improving and developing.
What advice would you give to other families who have a newly diagnosed child?
Never blame yourselves! That feeling of guilt can really eat away at you. Never be ashamed of your child, never be ashamed of looking or asking for help. Being a parent doesn’t come with a manual, let alone being the parent of a child with special needs. Get to know your child; each of them is unique and different. Always encourage yourself to keep learning along with your child. Other than all the therapies and services they receive, the difference in your child’s development will come from the work you practice at home. Every day is a new day to begin; it's never too late.
What role has autism speaks played during this autism journey for you and your daughter?
Autism Speaks is like a family - a community where we can identify with others that can understand what we are going through. They say only someone going through similar things can understand the struggles, the successes and the joy that comes with being an autism parent. It's a support system you can always count on. Reading through the resources that are provided by Autism Speaks and then actually getting to know some of the other families with children on the spectrum, just gives you hope. We are not alone on this journey and we can share our experiences and learn from others experiences through Autism Speaks.
Before the diagnosis process, we used the “Parent’s Guide to Autism” toolkit to help us identify signs of Leah's autism and how to help her and ourselves during the process. Once we started the diagnosis process, we've utilized guides for IEP, school, ABA therapy, potty training, etc. I would recommend using Autism Speaks as a tool of guidance to help ease the process of pre and post diagnosis. For any concern or doubt during the process and for each step of this journey we can always find a guide or a blog to help us.
Autism Speaks has also helped to provide us with a sense of community. Meeting different families or reading blogs about other people who are going through similar journeys is priceless. We can learn from their experiences to ensure our daughter has everything she needs in life. This year, will be our first time participating in a Walk with Autism Speaks. Even though it might look different than previous years, we are looking forward to participating in the fun and excitement.
Click here for additional resources for families of newly diagnosed children.