Helping Hands

Finding out that your child has been diagnosed with a developmental or physical disability can bring with it a lot of questions and a need for professional assistance, but Central Florida’s experts in providing that specialized care are here—and eager—to help.

While there are more resources and more avenues of assistance for special-needs children and their caretakers than ever before, knowing where to start and where to go for help can still be an overwhelming prospect for families who are new to navigating their child through a world that still isn’t as accessible, patient or compassionate as it could be.

As every diagnosis and level of assistance is specific to a child’s needs, there’s no cookie-cutter approach to assessing and addressing how to best support each and every youngster who would benefit from extra physical and neurological assistance. But Central Florida’s experts in meeting children where they are know exactly how to individualize the care, encouragement, education and insights they provide.

“Our team is here for you—it doesn’t matter what kind of challenges your child is facing,” affirms InBloom Autism Services Chief Clinical Officer Ellen Fittro, M.S, BCBA. “Families come in and they’re really afraid to be transparent because of the challenges that they have faced. And they worry that we may say, ‘Oh no, that’s not for us.’ I would say the exact opposite: We’re in it for the long haul.”

How each family proceeds with their child’s care is as unique as each child themselves, but there are three stops along that journey that can help you identify the most successful approaches to their continued care and support in the long term: confirming a diagnosis, effective communication and preparing for adulthood.

What to Do When: You Suspect Your Child Has a Disability

Whether your little one’s motor skills, verbal progression or developmental milestones are at the root of your concern, consulting with a qualified professional will provide not only a diagnosis but also a pathway to treatment—and even the solutions that could help a child close the gap between them and their peers.

“We don’t wait around!” says Debra Beckman, MS, CCC-SLP, of the physical therapy, speech and language services provider Beckman & Associates Inc. “We start with infants who are not nursing well. What we’ve found is that if we get the movements in place at that early age, it enhances development of other movements later.”

Time is indeed a crucial factor in proactively identifying the combination of support network, medication, treatment, resources and accommodations a child needs.

“The first five years are critical in development, and for children who are born with a complication or have a complication [from an accident], there are still a lot of opportunities in those first five years to build different pathways in the brain,” points out Linda Brown, director and creator of BrightStart Pediatrics, a Prescribed Pediatric Extended Care center that provides “nursing, therapy and love for medically fragile infants and children” in a daycare-like setting. “Obviously, you can continue to do that throughout life, but your first five years are where a lot of those pathways are being initiated and laid down. So for children who have had a brain injury … there’s a window where you can really make a big impact and get them to achieve things that they couldn’t achieve if you didn’t invest as much in those first five years. That’s really valuable to have for these kids who have had such a complicated start in this world.”

“In essence, early intervention is so important because it capitalizes on key windows of opportunity—in brain development, academic progress and self-concept—to give students with learning differences the best shot at thriving in school and life,” adds Pam Tapley, head of school at Pace Brantley Preparatory School, a private school for students with diagnosed learning disabilities to prepare them for success in both college and their careers. “It’s about proactively supporting them before challenges snowball. As the saying goes, ‘An ounce of prevention is worth a pound of cure.’”

As almost anyone with a late-in-life diagnosis can attest to, though, there is always help both available and modified to suit an individual’s needs at any life stage—Beckman notes that “you don’t have to be a certain age to start receiving services and putting the right processes in place”—but actively pursuing early intervention can be the difference between a child thriving or expending their energy on coping mechanisms like masking, a common workaround that neurodivergent individuals use in the likes of a classroom or office to conceal those traits so they appear neurotypical.

Further emotional ramifications of not getting help early enough can play out in negatively internalizing their weaknesses as evidence that they’re not as intellectually or physically gifted as their peers, which can lead to a harmful, self-defeating inner narrative.

But early intervention is not always an option, nor is it always accessible, affordable or an apparent solution. And while the best time to seek help might have been a couple years ago, the second-best time is now, as any professional assistance is always better than none at all.

“By about third grade, kids start looking around and they figure out who’s smart and who’s not,” says Dr. Mary Travis, PhD, of Travis Psycho-Educational Services, Inc., whose Orlando-based practice is rooted in positive psychology. “Before that time, when everybody is kind of equal, you want them to find out if there’s anything they can be working on [regarding] their strengths and weaknesses. … We’re not looking at that deficit model, you want to look at the model of what is going right and how can we make it better, how can we help you do more of what you want to do.”

What to Do When: You Need New Ways to Communicate

Whether you’re encouraging your nonverbal child to discover alternative avenues for expressing themselves, dealing with therapists and specialized practitioners for the first time, or are learning a whole new lexicon to describe your child’s needs, the ways you communicate will inevitably change.

But any child who trusts their caregiver has plenty to say. Learning how to hear what they’re saying is imperative, to both ensure their needs are satisfied and validate their feelings.

“I would say to listen—that’s really the best advice I can give,” Brown advises. “Children’s vocabularies are not as full as ours, so you have to listen for the intent. I think when you’re talking with your children about anything, you should be listening not just for the words but for the emotion behind it, because that’s really what the child is looking to express. Are they scared, are they hurt, are they happy, are they nervous? … Listen to the emotion behind it and acknowledge it, even if you can’t give them what they want in that moment. Children don’t need complete control by any means, but they need to be acknowledged as a valid part of the equation.”

When speaking to a child about their needs, the best way is to emphasize their strengths before discussing what they need to work on so they don’t feel like they’re less than their peers, siblings or classmates.

“You want to make sure you’re not ‘fixing’ them. You’re guiding them. You’re helping them,” Travis says. “You’re taking something that’s not broken: They just need a little help.”

Solid communication can help a caregiver fine-tune their ability to accurately and effectively advocate for their children, too, since they’re well-apprised of those individual needs and preferences. Honest communication and consistently demonstrating that you’re your child’s fiercest supporter can also help them develop the vocabulary and confidence to advocate for themselves.

Either way, it is a skill that requires some patience and managed expectations to develop, though.

“Remember that helping a child as a self-advocate is a process, not a one-time conversation,” says Diane DiSanza, Pace Brantley’s principal. “Keep the dialogue open, offer ongoing support, and adjust your approach as the child matures and their needs evolve. With consistent support and empowerment, children with learning differences can become strong self-advocates.”

What to Do When: Your Child is Facing Adulthood

Your child is more than their diagnosis even when it informs how they interact with the world, but that diagnosis can make the prospect of an independent life daunting for both them and their loved ones.

The path to that future is punctuated with opportunities for children to discover their capabilities as they grow and mature, while always demonstrating there’s a safety net ready to catch them when they experience life’s inevitable hiccups as they claim their hard-won independence.

“We work with older children and teenagers, and the teenagers hesitate to make attempts because they don’t want to fail,” Beckman observes. “We want to make sure that they have lots and lots of success in a controlled setting, and then give them activities for carryover at home and in their community setting. … But you’ve got to set it up in small enough increments that they will have success. Change is hard and it’s a process: You have to be realistic in your expectations and you have to be systematic in your approach.”

Developing a relationship with the dedicated professionals serving as a supportive, safe constant in a child’s life as they make their way toward adulthood can help them—and their families—realize their full potential.

“We’re spending many, many hours—anywhere from 20 to 40, usually—with your child a week, and we’re going to spend a lot of time with those individual caregivers and parents, as well,” says Fittro. “We want to know all of the things you know because this is something that is very long term. When families walk through the door, I reiterate that they really should keep their minds open as far as the possibilities that exist for their child.”