About Scout: Our family's journey of early detection and life with Spina Bifida, by Elizabeth WatkinsRead Now
Scout is our 3rd child, the youngest of three girls. Both of our oldest children are perfectly healthy and pregnancies were normal. When we found out that we were expecting our 3rd we had no idea how different things would be; and in our story different changed our lives in the most beautiful ways.
I was 35 years old for this pregnancy and considered advanced maternal age. At 9 weeks gestation my OBGYN did an ultrasound to ensure viability; and at 11 weeks blood testing which ruled out other abnormalities, everything was normal.
Then at 18 weeks an anatomy scan, and the next day the OBGYN called with the stomach churning news "there are abnormalities in the baby's brain". She said that she didn't know enough to make any diagnoses and that we would be referred to a perinatologist- a specialist for further assessment. We saw him 3 days later and within seconds of reviewing her imaging, he said "your baby has Spina Bifida and she is going to need surgery". As devastating as that news was he also told us about the options, one being fetal surgery.
3 weeks later after extensive testing we were referred to CHOP in Philadelphia for fetal surgery because this was not offered in Florida at the time. On 11/16/2016 one day shy of 23 weeks gestation Scout and I went into fetal surgery to repair her L4 Myelomenengocele.
We had to stay in Philadelphia for the next 30 days under close observation and then were released to the care of Winnie Palmer Hospital, Orlando Fl. We were the first fetal family ever discharged from CHOP to Winnie Palmer and Scout was the first baby born at Winnie post fetal repair.
Scout was born at 36 weeks gestation via c-section weighing 6lbs15oz. She was sent to the NICU as a precaution, however everything was normal with the exception of enlarged ventricles and she was discharged home with mom after 3 days.
We knew there would be challenges and did our best to prepare. At 8 weeks old Scout started early intervention with Early Steps Volusia County and she continued with them until the age of 3. She had an EP Shunt at 9 months old and she started walking independently at 2 years old. She does not use a walker or have braces and she graduated from OT early at about 18 months old. She has no cognitive deficits and does not qualify for an IEP at this time.
We continue to watch her closely and have found great support in a network of children's services through Early Steps and Arnold Palmer Children's Hospital. We always have kept the attitude that as long as we see progress we are headed in the right direction. We don't compare Scout to her sisters or any other child, she is uniquely who she is and although we acknowledge her differences we do not limit her.
Beyond being our miracle, Scout is the perfect outcome of early detection and early intervention. Her life and our lives are the best they can be because of the services that have been offered to her.
Every child deserves the best life possible and that is made possible through programs like Early Steps.
We are forever grateful and share Scouts story to keep the share hope, empower and inspire.
The Watkins family,
Ty, Liz, Maya, Rue and Scout
There’s no escaping the news coverage of the coronavirus pandemic these days. Caring for children – including those with special needs -- during this event, which seemingly has no end in sight as of this writing, can be extremely daunting.
Though there’s no denying this difficult time in our history, it’s also helpful to remember that faring well in any crisis is largely about preparedness. And, our reactions to what’s happening around us are actions we can control when there’s little else.
Aside from physical preparations a family may need to undertake, the emotional and psychological trauma of uncertain times can be challenging for children. To help keep youngsters – and yourself – calm during the health crisis, we offer several ideas:
The coronavirus outbreak doesn’t have to be a chaotic, anxious time. Make the best of this time by employing activities and mindsets that can help bring the calm to any mind at any age.
Recent public health issues have forced us to limit our operations, including face-to-face contact in our programs. We want to assure you as a valuable donor that Easterseals Northeast Central Florida is dedicated to our local children with disabilities, their families and caregivers and our community.
We are still open and working, albeit very differently than we did even a week ago. Our primary programs are still open, and as we focus on direct care, treatment and intervention services, a decline in utilization has greatly challenged our funding.
Our clinical and early intervention services are hardest hit, with almost a 50% decline for reasons that neither we, or our most vulnerable families, have control. However, we have moved swiftly to re-invent nearly all of our service lines, such as shifting clinical services and early intervention services to tele-health and opening additional child care slots, for example. This has challenged our team and will require additional expense beyond our capacity.
Please donate so that we can continue to creatively serve and go the extra mile for our children with special needs — and the families who love them. Donate a gift of any amount today. Please share with your networks and send us a message with any questions to firstname.lastname@example.org.
Easterseals Northeast Central Florida is proud to announce Ivan David Garcia Rolon as a 2020 Easterseals “Walk With Me” Ambassador.
Ivan is a student at Easterseals Charter School in DeLand and Easterseals Autism Center of Excellence in Daytona Beach. This spunky four-year-old is a hard-working boy who’s focused on becoming a proficient walker and expert in potty training at home and at school.
He’s learning shapes, the alphabet, numbers and colors too.
Teachers Susan Nathan and Rebekah Lay and Constance Ellis are proud of all of the strides Ivan has made since joining the Easterseals family only 18 months ago.
“Ivan has blossomed through having dedicated teachers and a consistent peer group for the last couple of years at the charter school,” said Susan Nathan. “His trust and communication are improving with adults and peers alike.”
A happy, shy little guy, Ivan is coming out of his shell and is more social in the Easterseals environment, say his teachers, and he’s becoming a more confident walker too. His mother, Amarilis Rolon, is one of his biggest fans.
"Ivan is a charming and sweet little boy. I believe he has a big calling in this world, and he will be a great musician and or a great engineer," said Rolon. "He has a beautiful, big smile that can melt any heart. He is a very strong and determine little boy who won't give up on himself; he works hard every day to accomplish every milestone every goal set for him.
"Ivan is power, strength, love and hope," added his mom. "He is our sunshine in a cloudy day. You just have to see him to know how awesome he is."
Easterseals welcomes Ivan Garcia and his family, including parents Amarilis Rolon and Jose Garcia, to the “Walk With Me” ambassador team of families!
You, too, can join the fun of “Walk With Me.” Mark your calendars for 5 p.m. Friday, May 22, at Lakeside Community Center in Port Orange.
When you register as an individual or a team for Walk With Me Daytona, you show love and support for Easterseals Northeast Central Florida clients -- as well as the 1 in 5 Americans facing life-altering disabilities -- and the families who love them. Join our Facebook event today and stay tuned for more news about “Walk With Me 2020” on our website.
Giovanni Garcia, 5, has been named as an Easterseals Northeast Central Florida 2020 Ambassador.
Giovanni is an outgoing, and contagiously happy little boy who enjoys dancing and music. The only child of Susana and Carmelo Garcia, Giovanni is a student at Easterseals Charter School and receives occupational and language therapy services from Easterseals as well.
At Easterseals, Giovanni has flourished. When he arrived, he wasn’t vocal and demonstrated little cognitive ability, according to Assistant Principal Christina Hopkins. He was timid and shy.
Today, however, Giovanni is blossoming. Not only is he outgoing, he's often the life of the party. Whenever he talks with peers and adults, he even invites them to play! He has learned his colors, can count to five, can name familiar objects in the classroom, and can verbally express his wants and needs.
Giovanni will be attending to Kindergarten next year, and with Easterseals' help, he’s learning and growing while reaching significant and age-appropriate milestones.
Easterseals is proud to welcome Giovanni to the Easterseals Ambassador family. Mark your calendars to meet Giovanni and support Easterseals in its annual Walk With Me event in 2020. Details coming soon!
Welcome to autism 101! by Dorothy Lefford, Vice President - Clinical Services at Easterseals Northeast Central FloridaRead Now
The last decade has brought greater awareness and advances in understanding autism. Each person is unique just as the autism awareness puzzle piece symbol reflects. There are no two cases alike.
Welcome to autism 101!
Autism, also referred to as Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that refers to a broad range of conditions characterized by challenges in three main areas: social skills, restrictive and repetitive behaviors and language /communication delays. According to the Center of Disease Control (CDC), autism affects an estimated 1 in 59 children in the United States, affecting boys four times more often than girls. Locally, Volusia County Schools data reveals serving 15,361 Exceptional Student Educational Students ( ESE); 3,168 of which are served under the primary exceptionality of Autism. This accounts for 22 % of the total recorded Exceptional Student Education population within Volusia County schools.
ASD does not discriminate across racial, ethnic or socioeconomic groups. Minority groups tend to be diagnosed late and less often. The average age of diagnosis is 4.4 years of age according to the CDC but can be reliably diagnosed as early as 18 months by a skilled team. 1 in 37 boys will be diagnosed with autism as compared to 1 in 150 girls. More recent studies are beginning to show an elevation in data of females being diagnosed in adulthood. According to the CDC (CDC 2014), 1% of the World population has autism spectrum disorder. More than 3.5 million Americans are living with ASD (Buescher et al., 2014) which is comparable to statistics in Asia, Europe and North America reporting an average prevalence between 1-2 % (CDC, 2014). The prevalence in Autism in U.S. children has increased from 1 in 150 births in 2000 to 1 in 59 in 2018, a staggering increase of 39%. Autism services cost the United States citizens $236-262 billion dollars annually with the majority of these costs centered on adult services (Bloomberg new report 2014-06-09/Autism costs).
Autism Spectrum Disorder is an umbrella term /diagnosis. In 2013 the Psychiatric Association merged four distinct diagnoses to include the following: Autistic Disorder, Childhood Disintegrative Disorder, Pervasive Developmental Disorder –Not Otherwise Specified (PDD-NOS) and Asperger’s Syndrome. Autism is diagnosed through the use of the Diagnostic Statistical Manual, 5th Edition ( DSM-5) which notes that individuals previously diagnosed with Asperger’s Disorder or Pervasive Developmental Disorder should be given a diagnosis of Autism Spectrum Disorder ( DSM-5, page 51). Additionally, another change in the DSM-5 indicated individuals who have significant deficits in social communication, but whose symptoms do not otherwise meet criteria for autism/ASD, should be evaluated for Social (pragmatic) Communication Disorder
(DSM-5, pg. 47, 51).
The average age of diagnosis nationally is 4.4 years which is derived from the CDC’s Autism and Developmental Disabilities (ADDM) Network. The ADDM is an active surveillance system that estimates autism prevalence among children aged 8 years old whose parents reside in the 11 ADDM sites within Unites States ( CDC 2016). All cases of autism have varying abilities. Upon diagnosis, a level of support (DSM-5; 3 levels: support, substantial support and very substantial support) is provided based on the child’s level of symptomology. Research determined 31 % of the children with ASD have an intellectual disability (IQ<70: Autism speaks), 25% are in the borderline range (IQ 71-85) and 44% have IQ scores in the average to above average range (greater than 85).
What causes autism?
The cause of autism is largely unknown however the vast majority of cases indicate genetic involvement. Research shows there are both genetic and environmental links that place a child at a higher risk for autism. Studies show children born to older parents are at higher risk. Parents who have a child with autism have a 2-18% chance of having a second child on the Spectrum. In the case of twin births, if one twin has autism then the second will be affected about 36-95% of the time. With non-identical twins, the second child is affected with ASD 31 % of the time. Vaccines do NOT cause autism. Because children receive early immunizations around the same age autism symptoms become more visible, thus, parents may link the two. Science proves that vaccines protect against disease and strengthen the immune system. There is no medical detection such as blood tests or brain scans to diagnose autism. The goal is to lessen the symptoms and build skills to support success.
Autism does not typically result in obvious appearance differences. People with ASD may communicate, interact and behave in different ways. The hallmark of autism is having impaired social skills. They have difficulty engaging with others. Eye contact and physical affection may be uncomfortable. They may struggle with reciprocal interactions, sustaining conversations and building relationships. Anxiety, depression and social isolation often occur into adulthood. Children with ASD may also demonstrate repetitive behaviors such as hand flapping, lining up objects or repeating select sounds or phrases. They often struggle with changes in routines and may refuse or act out when changes in their predictable schedule are altered. Transitions between places or activities is a common challenge as this may produce mild-severe anxiety resulting in what appears as a meltdown of varying degree. This could be met with refusal, screaming, aggression, and elopement and even self-harm. Children on the spectrum may also have different ways of learning, paying attention or reacting to sensations from their environment. Common red flags of autism might include: delays in speech or language (verbal and non-verbal), lack of pretend play, repetition of words/phrases, obsessive interests, upset with minor changes, rocking and hand flapping, picky eater or unusual reactions to the ways things look, taste, smell or feel. Many children with autism find comfort in visually stimulating activities specifically technology (TV, phone, computer). Lining up objects, sorting by category, looking at objects from odd angles are common visually stimulating behaviors.
Children with ASD develop at different rates. Some may have delays in language and others demonstrate above average vocabulary. A child may demonstrate gifted abilities with computers but struggle with basic self-care tasks and making friends. There are age specific developmental milestones families should be aware of and discuss any developmental gaps with their child’s pediatrician. Early screening for autism should be completed at 18, 24 and 36 months during well visits.
The M-CHAT (Modified Checklist for Autism in Toddlers) is a psychological questionnaire that evaluates risk for autism spectrum for ages 16-30 months. Additionally, general developmental screenings can also be beneficial to identify developmental gaps and need for more specific testing for autism. Local resources for early developmental screenings and autism can be found through local programs with Easterseals, Early Steps (ages 0-3), Help Me Grow with the United Way and Ages and Stages screening found within many childcare facilities via the Early Learning Coalition. Screening young children is an effective way for parents and professionals to identify children’s delays or disorders in the critical early years in order to act swiftly with interventions for best results.
Diagnosing Autism can be a difficult task because it is based on systematic observations. There is no medical test to identify autism. Doctor’s evaluate a child’s behaviors and development to make a diagnosis. A Comprehensive Diagnostic Evaluation (CDE) is best practice. A pediatrician may refer parents to a specialist such as a neurologist, developmental pediatrician, psychiatrist or psychologist. An intensive parent interview and the Autism Diagnostic Observation Schedule (ADOS) is considered the gold standard for diagnostic testing. The ADOS is a standardized test to observe the presence or absence of common behaviors in children with autism. Once a diagnosis is levied an individual treatment plan can be developed which often includes applied behavior analysis (ABA-behavior), Play and Language for Autistic Youngsters (PLAY Project), developmental therapies such as occupational, speech/language and physical therapies as well as medication in some cases. Medication does not cure autism but it can alleviate some intense symptoms associated with autism such as seizures, anxiety, attention challenges, and aggression and self-harm. Complimentary interventions may also be recommended to include the following: child counseling, family counseling and training, assistive technology, nutrition/feeding aversion interventions, as well as environmental and educational supports.
Additionally, complementary and alternative treatments may also present as a choice to parents to decrease symptomology of autism. Examples might include: specialty diets, chelation therapy (removal of lead/metals from the body), biologicals (i.e. Secretin). These types of interventions are very controversial and should be well researched and discussed with your child’s pediatrician in advance.
Caregivers also need support as caring for a child with autism can be overwhelming both emotionally and financially. Parents are encouraged to build their knowledge of autism and local resources and supports. Enlist extended family members and neighbors to strengthen your support and safety circle. It is equally important for parents to take time for themselves. Studies have shown 50% of married couples with a child with autism will end in divorce. Build in date time, ask for help, accept help and know your community resources. A balance of work rest and play is essential for EVERYbody. Act now and get connected. Easterseals is the local trusted provider for comprehensive diagnostic and treatment for autism as well as respite services. Call or stop by today for more information.
Autism is a lifelong disorder requiring lifelong support. Over the next decade, an estimated 500,000 teens (50,000 per year) will enter adulthood and age out of the school system. According to the Bureau of Labor and Statistics (News Release Feb 26,2019), 19.1% of people with disabilities in the U.S. are employed as compared to those without a disability at 65.9%. More than half of young adults with ASD remain unemployed and unenrolled in higher education in the two years after high school . This is a lower rate of young adults than other disability categories including learning disabilities, intellectual disability or speech–language impairment according to Autism Speaks. Nearly half of the 25 year olds with autism have never held a paying job. Research continues to support job tasks that encourage independence, reduce autism symptoms and increase daily living skills. The majority of autism costs in the US are for adult services. We can do better!
Costs and level of support can be greatly reduced with early intervention. Children can make gains and live productive, fulling lives. There is hope. There is a future. There is Easterseals! Early detection and intervention is essential.
Contact Easterseals Autism Center of Excellence at 386-944-7856 to learn more about comprehensive services and resources available in your community. Financial assistance available. Act now! Let’s get started together.
Dorothy Lefford, OTR/L, CPHC
Vice President - Clinical Services
Easterseals Northeast Central Florida
Allison Berard, MS, BCBA, started in mid-January as a Behavior Analyst for Easterseals. She will be responsible for training teachers, parents and caregivers how to teach school readiness, play and social interaction skills as well as how positively and successfully manage problem behavior. She is excited about her specialized role and hopes to help others understand the process. "Behavior change isn’t magic!" says Allison, "The desired outcome usually takes a lot of time, dedication and consistency but the outcomes can be magical!"
Allison Berard obtained both her Bachelor of Science in Applied Behavior Analysis in 2005 and Master of Science in Applied Behavior Analysis in 2008 from the University of North Texas. She is a Board Certified Behavior Analyst and Owner of Behavior Launch. Before creating Behavior Launch, Allison had been practicing behavior analysis in applied settings with parents and children with special needs for fourteen years. Allison collaborated with many organizations around the country providing direct therapy, parent training and crisis intervention. She has worked with countless families developing effective plans to assist with concerns such as picky eating, sibling rivalry, family participation, homework refusal, aggressive peer play and much more. She is an active member of the International Association for Behavior Analysis and Florida Association for Behavior Analysis. Her professional interests include parent training, self-regulation skills, autism and other developmental disabilities. She has worked on multiple projects over the years focused on teaching introductory behavior analysis concepts and investigating the effectiveness of parent training programs. In her free time, Allison enjoys spending time with her husband and daughters, nature walks and porch lounging.
New country recording artists Pryor & Lee Perform at Easterseals Northeast Central Florida as part of “100 Leaders, 100 Readers"Read Now
Daytona Beach, FL (February 3, 2020) - Black River Entertainment’s Pryor & Lee spent Thursday morning with the kids at Easterseals of Northeast Central Florida. The duo, comprised of Pryor Baird and Kaleb Lee, performed as part of the “100 Leaders, 100 Readers” initiative in honor of Easterseals National 100th birthday.
“It was such a blast hanging out with the folks at Easterseals,” says Pryor & Lee. “Watching the kids sing and dance while we sang was such a fun experience for all and we were honored to be a part.”
About Pryor & Lee
Black River Entertainment recording artists Pryor & Lee are the first country duo signed to the Nashville based entertainment company. The duo, consisting of Pryor Baird and Kaleb Lee, were brought together as roommates on NBC's singing competition The Voice and eventually began performing together, sparking an undeniable musical connection. Prior to joining forces, Kaleb and Pryor were pursuing solo careers. In 2019, Pryor toured across the country in support of his solo EP titled All Over Me featuring songs from hit-songwriters Tommy Carlisle, Trent Willmon, and Easton Corbin. Meanwhile, Lee released four singles including "I Dream in Southern" (Shane McAnally, Josh Osborne, and Brandy Clark) featuring superstar Kelly Clarkson. Ultimately, they decided to combine Pryor’s electric guitar skills and “growly bluesy pipes and stellar vocal range"(Rare Country) with Lee’s “soulful and whiskey-soaked vocals” (Billboard) to create a fresh sound with a throwback vibe. Pryor & Lee will embark on their debut tour “Country’s Back” beginning on March 1 in Fontana, CA and are set to release new music on Black River Entertainment later this year. For more information, visit www.pryorandlee.com.
About Easterseals of Northeast Central Florida
Through early intervention and inclusive early childhood education to autism services and specialized therapies, Easterseals goes the extra mile to ensure that children with special needs — and the families who love them — can lead full and meaningful lives. Our purpose is to change the way the world defines and views disability...whether physical, intellectual, emotional or social, by making profound, positive differences in people's lives...everyday. To learn more about Easterseals Northeast Central Florida, please visit www.eastersealsnecfl.org or follow Easterseals on Facebook at https://www.facebook.com/esnecfl.org/ on Instagram @eastersealsnecfll or our blog at https://www.eastersealsnecflblog.org/blog.
Easterseals goes the extra mile to ensure that children with special needs can lead meaningful lives. We're able to do this because we have YOU as a partner.
Through early intervention and inclusive early childhood education to autism diagnoses and specialized therapies, young children with special needs CAN have a clear path to success from the start. You can make that happen with your financial gift!
Easterseals Northeast Central Florida would be honored to receive your year-end or monthly gift to support children with special needs –- and the families who love them. Would you consider a year-end or monthly gift? Your kindness in giving flows to literally thousands of local children. Click this link to give easily or to learn more about the giving levels.
As you consider your gift this year, we invite you to read the stories of Easterseals Ambassadors Carl and Scarlett. Their families share their stories so that you can learn more about Easterseals services and the impact you make through your financial support.
You can count on Easterseals to continue to go the extra mile until every child with special needs is 100% empowered with the services and supports they need to thrive. Please join us with a year-end gift today! Thank you!
Grinning ear to ear with twinkly brown eyes smiling beneath plastic blue-rimmed glasses, Carl, age 3, exudes
happiness and love. His parents Angela and Steve have taught him such things, just as Easterseals’ Early Steps is
teaching Carl how to grow and learn through physical, occupational and speech therapies. Angela and Steve appreciate the Easterseals therapists’ teamwork approach and how they encourage their confidence. “They always explain things even if they might not be what we want to hear,” said Angela. “The therapists redirect us in ways that are better for Carl. The growth we have seen in him has been phenomenal.”
Scarlett is a curious, sweet-tempered five-year-old who’s been in the Easterseals of Northeast Florida family since her birth. Her connection with Easterseals began via her enrollment in Early Steps when she was only a few months old. The in-home visits by Early Steps therapists began soon thereafter. When Scarlett finished the Early Steps program, she entered Easterseals Charter School in DeLand. Some of the challenges Easterseals therapists have addressed with Scarlett include walking and communication. Today, Scarlett is much more exploratory and inquisitive, too, evidence she’s on the
Easterseals’ work with children and families is often visible. After all, some of a child’s most obvious developments include how they progress from crawling to walking, how they learn to feed themselves, or how they learn to read. The list goes on.
But, as most know, Easterseals services attend to the whole child – including his or her social development, emotional development and creativity.
Thanks to a recently received financial contribution, Easterseals’ Early Childhood Education Center, Daytona Beach, soon will begin offering the “Create a Pal” program to its students, allowing teachers to help children better develop important social-emotional skill sets.
Through Create a Pal, teachers will be able to create magical experiences for the children already enrolled, while allowing new students to Create a Pal (stuffed animal) when they enroll at the Center. The fuzzy friends they make with through their own creativity can comfort them while they’re at school and go back and forth from home to school with them every day as well.
“Being able to tie in the creativity of making your own stuffed animal friend with our curriculum is amazing,” said Principal Margaret Smith. “We can use the Create a Pal machine to enhance everything we do, particularly when it comes to social-emotional learning.”
“We’re grateful to the donor who made this program possible in our school,” said President/CEO Bev Johnson. “With Create a Pal, our teachers are able to provide yet another way to encourage children’s creativity and support them in their emotional development. Those are two features of our Early Childhood Education Centers that truly set them apart from other centers.”
Teachers are being trained in how to bring Create a Pal to life and parents of students at the school soon will be able to register their children for the program. It’s only a matter of time before Easterseals’ Early Childhood Education Center is brimming with fuzzy friends and extra-wide smiles.