With a master’s degree in special education, North Texas mom Melanie Fowler knew a lot about kids with developmental delays. In fact, she was working with autistic children while she was pregnant with her son William. But that didn’t prepare Fowler and her husband Seth for the realization that William was autistic.
While autism can be difficult to detect early on, at 6 months, the couple noticed William was flapping his hands and legs up and down and not responding to others when they entered the room.
“I had to work hard, very hard, to get William to accomplish simple goals,” says Fowler. “It almost felt like three steps forward, one step back.”
The biggest piece of the puzzle fell into place around 16 months when the couple realized William’s language wasn’t developing normally. He knew a few words, but he had troubling using them to express himself.
Still, the Fowlers were hesitant to say the A word.
But because Fowler was familiar with Early Childhood Intervention (ECI), she knew therapy could provide a means of helping her son’s growth and progression. And they’d been talking about his lack of progress for some time, so she applied for the program herself rather than going through her pediatrician for a referral.
A team of therapists began working with the Fowlers when William was 17 months old.
Overcoming Stigma
ECI, the short story: Early Childhood Intervention Services is a division of the state Department of Assistive and Rehabilitative Services. It’s a state and federally funded program that helps families of children with disabilities and developmental delays from birth to age 3. A team of therapists comes to the home to work with the child and coach the parents. But the results of ECI can’t be summed up so succinctly, and can actually be life-changing.
Brandi Mitchell, case manager for Metrocare Services in Dallas, says that some of her tiny clients, having caught up to normal development after working with therapists, “graduate” from the program before age 3. She believes early intervention spares families years of grappling with a disability alone—and years of feeling helpless, afraid and frustrated.
So why don’t more families turn to ECI?
The stigma attached to any kind of developmental delay can keep well-meaning parents from reaching out sooner, but pushing through those fears is exactly what’s necessary to give children with developmental delays a leg up in a world that isn’t going to slow down to accommodate them, says Fowler. But many families may not realize a program exists and that treatment can begin as early as birth. Some parents may not be aware of what constitutes “normal.” Others don’t realize a diagnosis is not required to get help from ECI. And even fewer families are aware that the program helps children with a spectrum of delays—not just with conditions such as autism or cerebral palsy.
“You just need the knowledge,” says Fowler. “But reading about … development isn’t enough.” Parents and children need expertise from professionals who work directly with their children, she says.
Husband Seth agrees and advises, “If you are questioning any type of developmental delay, call ECI.”
Julie Seedig of Carrollton was guided to ECI by her pediatrician last February when son Brett (then 2) was showing delays in language development. Noting that boys tend to develop at a slower pace than girls, the physician nevertheless gave Seedig ECI’s information and told her to keep an eye on Brett’s development. By May, Brett still wasn’t saying, “mama,” so the Seedigs decided to contact ECI.
“[The ECI therapists] came out immediately and did an evaluation with him,” Seedig reports. They confirmed he had a delay and that it was articulation-based. “He dropped beginning and end sounds, so he would only say the middle of the word,” explains Seedig, and she says the conclusion was actually a relief, because they’d feared Brett might have a more severe condition.
By January of this year, Brett had made so much progress, Seedig pulled him from the program; Brett will be 3 years old this month. He was recently tested at a local elementary school to see whether he would need to be placed in a special program. The results showed he did not.
“I saw a dramatic difference in [those] five months,” Seedig says.
Education vs. Medication
Debbie Lisheron, chief of ECI of North Central Texas, a public organization that receives government funding for ECI services, is dedicated to making sure more parents are aware of the services ECI offers. The agency’s latest push is a highly visible campaign: 12 billboards in North Texas, plus print advertisements.
“We don’t know how effective it’s going to be,” says Lisheron, “but we’re going to [try the billboards] until next August.
“We know there are kids out there who could benefit from ECI, but the families just don’t know … what the state does [provide].”
Scientific research on the precise benefits of early intervention outcomes is skimpy, but Lisheron says the results are tangible in many cases. “All the literature indicates that because of the [progression of] brain development, the earlier you provide intervention services to these kids, the better they’re going to do.”
Who qualifies for ECI help? The eligibility requirements include “atypical development,” which means, simply, that the child has patterns of development that are different from other children who are the same age, says Lisheron.
And the cost of ECI services to families who need them? Evaluation is free. Then, once a team is assembled and home visits begin, the agency bills Medicaid, the Children’s Health Insurance Program or private insurance. If none of those is an option, a sliding fee scale base on income is used, but no one is turned away.
Help is widely available; including ECI of North Central Texas, Texas has 58 ECI providers.
ECI is more about teaching parents how to help their children—and how to cope. It’s “the education model, not the medical model,” explains Mitchell.
One of Mitchell’s clients is Daniel Cazares of Dallas, who turned 1 year old in October. Daniel was born with Down syndrome. His parents, Alejandra and Carlos Cazares, are the “epitome of our philosophy,” says Mitchell. Alejandra Cazares, who stays home to take care of Daniel and his 3-year-old brother, has worked tirelessly with Daniel. “When we come [to their home], we get updates,” says Mitchell. “He’s always doing something new, which lets us know that, the second we leave, Alejandra is working on the suggestions.” Mitchell reports the little boy is blossoming.
Cazares says the program is thorough. An occupational therapist taught her exercises to strengthen Daniel’s hips and help him learn how to crawl and grasp objects (children with Down syndrome typically have low muscle tone). When he gagged while eating, a therapist taught Cazares how to introduce foods to him gradually and how to place the spoon in his mouth in a way that teaches him how to take food properly. When he had severe constipation, a nutritionist came every two weeks to weigh Daniel, measure him and provide guidance on foods he should eat. He has just started working with a speech therapist.
“There are books [on the topic of ECI],” says Cazares, “but it’s not the same. [Therapists] come and they do it themselves so you can see how it’s done.” Cazares has soaked up the information like a sponge, eager to learn everything she can to help her son.
Fowler, whose profession is special education (although she now stays home to care for William, 4, and his younger sister, Margaret), also vouches for the ECI therapists. She says parents may think that because the therapy is less expensive, it’s not as good, but she’s adamant that’s not the case.
Both Cazares and Fowler say any time they wanted more frequent visits or when another kind of help is needed, ECI is quick to provide it.
For example, as Daniel undergoes speech therapy, Cazares says ECI provides a bilingual speech therapist to help advise her on that aspect of his treatment. Although she is fluent in English, her first language was Spanish, and ECI is thorough enough to want to cover bases on the off chance Cazares may not understand something.
The long list of services ECI provides include the speech and occupational therapies Daniel has received so far, plus infant massage, translation, counseling for parents, help locating health and social services and support groups and more.
The program began in 1981 and grew to serve about 50,000 Texas children in 2008.
Supporting the System
Acknowledging son William had a problem and getting help also brought the Fowlers the support they needed. And these days, they are passionate about getting communities and families behind the push for early intervention—it’s no small wonder. The results from ECI with an autistic child are not measured in leaps in bounds, but in small triumphs. Today, William makes eye contact more often and is comfortable in a crowd. And for the Fowlers, the question is no longer what’s wrong, or why it happened. Now they’re asking, “How can we help others speed up the process we’ve gone through?”
Additionally, both Alejandra Cazares and the Fowlers also believe support from both spouses is key to helping a child with a disability or delay.
Cazares says her husband, Carlos, a missionary and artist, embraced Daniel from the beginning, and she’s witnessed the difference it can make versus when couples do not pull together. A family friend also has a child with Down syndrome, she says, and the father has remained in denial and unsupportive of getting help. The child is now 3 years old and is only beginning to reach milestones Daniel achieved at age 1.
The Fowlers also admit that, as a bonus of working with ECI, their marriage has grown stronger. “Our hearts have changed,” says Fowler. “Just in how we react to one another. The little things have to just slide.”
And they are grateful for the new community they’ve encountered as they reach out to other parents. Notes Fowler: “The support you get gives you the energy [to work with your child.]”
