“Does he have nine words?”
The question was posed to Karen Fluck when she visited her son’s doctor for his one-year checkup. “I thought, ‘Nine? Bodhi doesn’t have any words,’” she says.
Bodhi didn’t babble or make the “ma” or “da” sounds that eventually compose “mommy” and “daddy.” When he was 18 months old and still not talking, Fluck heeded her pediatrician’s advice to have Bodhi evaluated by early-intervention child-development therapists.
And with that, the Flucks joined thousands of other families navigating the world of toddler therapy. In the process, more and more parents of young children are learning how best to decipher and cope with diagnoses of sensory processing disorder, hypotonia, hypertonia, phonological disorder, and expressive and receptive speech disorders.
Kathleen Carney, owner of Reaching Milestones Through Therapy in Glen Mills, has been a child-development specialist for 25 years. In the past decade or so, she’s seen a sharp uptick in the number of toddlers with the above issues.
Is the “older parents” phenomenon to blame? Many Generation Xers delayed having children until they were in their 30s. Did that lead to Generations Y and Z having trouble with their ABCs? “Absolutely not,” Carney says. “The rise in developmental delays is not only among children of older parents; it’s happening in children whose parents are old, young, educated, uneducated, white, black and everything in between.”
But that’s of little comfort to parents whose kids have developmental delays. “You don’t know why it’s happening, if you did something to cause it, or even exactly what’s happening,” Fluck says.
Often, family members are divided on how to address a child’s developmental delay. Grandparents frequently offer the “He’ll grow out of it” advice and scoff at the concerns of worried parents. Or they tell well-meaning anecdotes about children who worked through their delays. “Grandparents almost never understand,” says Lisa Mackell, owner of seven Theraplay locations in Southeastern Pennsylvania. “They often forget that their kids had trouble and were late speakers or late readers.”
It’s true that the disorders have been around for eons. “It’s not that there are more kids with disorders,” Carney says. “It’s that more developmental delays are being diagnosed. And that is a very good thing because now we can help those kids overcome the delays.”
Mackell attributes the spike in diagnoses to one thing: autism. When she opened the first Theraplay in Malvern in 1991, autism was just beginning to be understood. Now, awareness is pretty much universal among parents—and it scares them.
But autism is different from developmental delay. Autism spectrum disorders are medical conditions—specifically, neurological. Developmental delays aren’t. With early-intervention therapy, developmental delays are generally treatable, and kids can get on track with their peers. But autism spectrum disorders can present lifelong challenges.
That’s why the specter of autism haunts parents whose toddlers exhibit signs of any disorder. “I kept thinking, ‘Does Bodhi make eye contact with me? Does he do that enough? And what is enough?’” says Fluck. “Is it autism or Asperger’s or not?”
She got the answer when Bodhi was evaluated by Delaware County’s Office of Early Intervention. Delaware, Montgomery, Chester and every other county in Pennsylvania have such units. All of them offer the same services to children ages 0 to 3—for free.
The process begins when parents—referred by either a pediatrician, friends or family members—call to request an evaluation, says Lisa Campbell, manager of Delaware County’s early-intervention unit. Within 45 days of that phone call, therapists visit the family’s home.
“They are looking for development in five areas: cognitive, communication, adaptive, physical, and social-emotional,” Campbell says. “It is very play-based, so children don’t realize that they are being evaluated. The results of the tests show which of the areas—sometimes one, sometimes all five—the child needs help in.”
If the child does qualify for early intervention, his or her parents are given a written plan of action. They are also assigned one or more therapists, matched according to the child’s needs, parents’ work schedules, where they live, and even the child’s personality.
Those therapists are from Theraplay, Reaching Milestones Through Therapy and other companies that have contracts with the counties. They execute the EI units’ treatment plan, which states what kind of therapy the child needs and how many times per week. Progress is evaluated every three months.
The most common developmental disorder concerns speech. That’s because it’s easily identifiable by parents. The EI evaluation breaks the speech delay into two categories: receptive and expressive. Expressive speech delay is when a child understands language spoken to him but has trouble expressing himself with spoken words. Receptive speech delay is the opposite; a child doesn’t understand what is said to him and, therefore, isn’t responding with speech.
Mackell explains how those delays are treated. “Therapists teach the child the proper sounds to make, based on what is appropriate for his age,” she says. “Some is ‘copy and speak.’ We also do, ‘Say more,’ to encourage speech, because a child often has mastered one word to get what he wants, so he’ll stick with that. Sometimes, we use pictures and symbols, which they point to if they get stuck. Sometimes, we introduce sign language to help the toddler communicate.”
Neither sign language nor pictures impede speech development, because they are used in conjunction with therapy to encourage talking. And the child can hear—something confirmed by pediatricians well before EI units are contacted.
But there can also be physical issues interfering with the child’s development. Two of those problems are hypotonia and hypertonia—the underdevelopment or overdevelopment of muscles, including those around the mouth, that contribute to speech. “That can be seen by age 2, and we do oral motor therapy to treat it,” Carney says. “We have kids blow bubbles, suck on straws, and blow whistles to develop those muscles.”
Phonological disorders are also related to speech, and their signs can be recognized in toddlers beginning at age 3. “A child may consistently make the same errors in speech, like using a D for a G sound,” Carney says. “That’s means the child is substituting one sound in their mouth for another. It also happens with T and K sounds, like when a child says ‘tak’ instead of ‘cat,’ and makes the same substitution all the time.”
Other issues include final consonant deletion (“ca” versus “cat”) and primary syllable deletion (“at” instead of “cat”). Speech problems frustrate kids who are trying to communicate, and that often leads to behavior outbursts. But those outbursts are distinct from ones triggered by sensory processing disorders. A child with sensory disorder can’t process information coming from at least one of his five senses.
“It’s the kid who doesn’t like to be touched, or has an outburst in Target because the light is too bright, the noises are too loud, and there are too many people around,” Mackell says.
Occupational therapies that treat sensory disorders involve teaching kids how to cope with the stimulus overload. A sensory brush is sometimes used to awaken or calm their nerves. Carney’s OT professionals often apply lotion to kids’ arms and legs to soothe them and provide a seemingly protective barrier.
Bodhi Fluck doesn’t have any sensory processing disorders—and, for that, his mother considers them both lucky. The Delaware County’s EI unit diagnosed him with an expressive speech delay. Now 21 months old, Bodhi has been working with a Reaching Milestones therapist once a week.
After three months, the therapist recommended an additional session. Bodhi’s progress has been small and fleeting; he repeats a word for a few days, then stops using it. He still doesn’t say “ma,” or “da,” let alone “mommy” or “daddy.”
But his mother believes that, with the continuation of therapy, Bodhi will soon start talking. He does know one word: Elmo. “It’s something,” Fluck says. “I’ll take it.”