Parents of children with autism share stories to help others
Experts reveal the first call that should be made after a diagnosis
JACKSONVILLE, Fla. – When your child starts school, it can be stressful. You're worried about picking the right school and whether he or she will fit in. For so many families, that stress is amplified when a child is diagnosed with autism spectrum disorder -- a developmental disorder affecting communication and behavior. .
News4Jax spoke with two different families: One family has a child with a mild form of autism, and the other family is coping with one of the most severe forms. But, both families wanted to share their stories hoping to help others who have grappled with the task of finding services to fit their child's needs.
The Turvey family
"It wasn't very surprising," Heather Turvey told us, recalling her reaction to her daughter being diagnosed with autism. "But, it is disheartening to know there is something different about your child."
Their daughter Clara was in kindergarten when Turvey said a teacher told her within the first six weeks of school, "there's just something not connecting."
What complicated the situation was that Clara was also diagnosed with a language delay and Attention Deficit Hyperactivity Disorder, or ADHD.
"She would actually get up and run around the classroom in circles, which is disruptive and I get that," Turvey explained.
The Turveys said they took teachers' advice and tried medication to help control Clara's ADHD, but they said the medicine eventually left their daughter almost "comatose" in class.
"I can't even tell you the number of medications we tried," Turvey said, shaking her head and looking toward the ceiling.
When the Turveys realized Clara would have to repeat the second grade, they decided to move to St. Johns County where the school administration soon asked to take Clara off her medication.
"I can't even describe," Turvey said while laughing out loud. "The weight lifting off [my shoulders]. 'Yes, yes! Yes, you can [take her off the medication].' I mean, I wanted to cry."
Turvey told us it was not a smooth road, but over time, Clara was using the special services in class less and less. And as she grew older, Clara was able to advocate for herself; asking questions when she didn't understand part of her schoolwork, or asking for help to complete classwork.
Clara just finished her first semester of the ninth grade, and she has earned all As and one B.
The Turveys tell us 10 years ago, when Clara was diagnosed with autism, there weren't many options for schooling for her.
News4Jax contacted the Duval County Public Schools, and a spokesperson said since that time, there has been a major overhaul in special services for students -- including Oakhill Academy, a school specifically for children with developmental disabilities which the district said has become the flagship for all of Northeast Florida.
The Wooten family
Joe and Diana Wooten warned us their 17-year-old son Jonah is suffering from a severe form of autism.
Jonah just turned 17 years old this month, but as his parents describe him, "He has the mental capacity of a 17-month-old."
Jonah was having a good day when News4Jax anchor Joy Purdy visited their family at their Mandarin home, but the Wootens provided us with home video documenting Jonah's explosive and violent behavior that is very unpredictable.
Raising Jonah proved a challenge, but the Wootens said they were able to handle his outbursts.
Early on, the family applied for state aid -- finding services for Jonah. The Wootens were looking for a residential facility sensitive to Jonah's needs.
"We just feel like we are kind of maintaining him," Diana Wooten said of the day-to-day interaction she and her husband have with their son. "We don't have the knowledge to actually help him. So it is very frustrating."
The Wootens said they became disheartened when they realized thousands of other families statewide were on the same waiting list for services.
They stayed on that waiting list for nine years, and then their situation finally became dire as Jonah hit his mid-teen years. He grew taller and bigger than his own mother.
This past spring, they applied for emergency state services and included a letter detailing Jonah's dangerous behavior -- everything from Jonah trying to consume deadly substances like hand sanitizer to his temper tantrums that once had him lying in the middle of the street refusing to budge.
The Wootens said they finally began allowing Jonah to be held under Florida's Baker Act to help move him up on the waiting list.
The Baker Act is the common name for the Florida Mental Health Act of 1971, allowing a person to be involuntary institutionalized and examined when there's evidence the person may have mental illness.
"He's really not a person who needs Baker Acting," Joe Wooten explained. "He's a person who needs some other thing that really doesn't exist."
This fall, the Wootens were awarded financial aid for Jonah's special services, but to date, they said there are few residential facilities catering to their son's special needs, and they also have long waiting lists.
So far, the Wootens said they've only used a small portion of the financial aid for respite care -- a caregiver who helps in their home after school.
They are happy with the schooling Jonah is now receiving in the Alden Road Exceptional Student Center, which they said is very sensitive to their son's special needs.
We checked with the Agency for Persons with Disabilities (APD) in Florida, which the Wootens said gave them financial aid as they search for a residential facility where Jonah can live, and the agency told us the following:
APD serves 34,000 families. In Northeast Florida alone, it has 54 adult-only residential facilities and 19 that service teens and adults.
A spokesperson explained there are thousands of group homes statewide, and that often families are searching for a specific amenities at a group home or trying to access one that may be very popular.
Because of this, there may be waiting lists at specific facilities.
When asked about the Wootens' choice to have their son Baker Acted to move him up on the waiting list for emergency services, the APD said there are three criteria a person must meet if they are in need of emergency services:
1) Proof they are a danger to themselves or others
2) Proof they are in danger of becoming homeless
3) Caregiver is unable to provide care
The first call parents should make
The Agency for Persons with Disabilities tells us the first call a parent or caregiver should make when a child is diagnosed with Autism Spectrum Disorder is to the Center for Autism and Related Disabilities (or CARD). The UF Health program offers FREE resources and support and is located in the San Jose area right here in Jacksonville.
CARD Services to Families
- Parent training, functional behavioral assessment, behavior support plans
- Training events and workshops
- Referrals to service providers, funding sources, support groups, etc.
- Family support: counseling, support groups, social skills groups, sibshops
CARD Services to Schools
- School Consultation: Consultation with educational professionals
- Training events and workshops for educational professionals (opportunities for continuing education credit)
- Florida DOE/CARD Teacher Partnership
CARD Services in the Community
- Awareness events pertaining to Autism and related disabilities for local groups or agencies upon request
- Training events on topics pertaining to autism and related disabilities
- Annual statewide CARD conference
- Dissemination of informational brochures on autism and related disabilities
Local autism specialist Dr. David Childers with the pediatrics department at UF Heath agrees, saying that is one of 3 local resources for families seeing help and support for children with autism, depending on their age.
He says both federally mandated programs are no cost to families and require a child be evaluated within 45 days of a referral.
For children ages 3 – 5, Childers says families can find help through the Child Find program in the St. Nicholas area of Jacksonville.
Advice from both families
The most important move the Wootens said they made was telling anyone and everyone their story.
Joe Wooten recalls a conversation he had with a police officer, responding to their call for help at their home.
"What do you expect me to do with him?" Wooten asked the officer. "Fortunately the officer said, 'I know the on-duty nurse working tonight at a local hospital.' (Jonah) was actually there for 3 weeks. That was actually the services that helped get him to the level he's at now which is significantly better."
Both the Wootens and the Turveys emphasize there is no "one size fits all" answer, but they stress the importance of constantly asking questions, searching for answers, and pestering the experts to find the best help for your child.
"The sooner you get them diagnosed, and the sooner you get them services -- whether it be in the school or at home, or you do it privately -- the better off they will be," Heather Turvey said. "(Clara) wouldn't be where she is now if we hadn't fought so hard in the beginning."
Another resource where you can find detailed information on everything from area summer camps for children with autism, to local support groups for parents and caregivers, and how to apply for financial aid for services, visit HealAutismNow.org.
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