I can still remember how our daughter's new pediatrician slightly rolled her eyes. I had just explained that we'd left Eva's first doctor because he wouldn't take our concerns seriously. At 18 months, Eva still seemed unsteady on her feet, and she drooled a lot. For months, my husband and I had been worrying about these and other subtle signs that something was wrong. Otherwise, Eva was a bright and happy child, and she looked perfectly normal sitting on the exam table. "I'm sure she's fine," the doctor said as she led us to a stairway and asked Eva to climb a few steps. Unable to tackle the first step, Eva dropped to her hands and knees and struggled to pull herself up.
That's when the pediatrician's expression changed to one of surprise and concern. "I'll admit, I thought you were another neurotic new parent," she said. I don't know if I was more relieved or frightened. She referred us to a pediatric neurologist, who diagnosed Eva with hypotonia -- a lack of normal muscle tone that was most likely related to oxygen deprivation during her difficult birth. We were told that it would affect not only her ability to walk and run but also her speech and fine motor skills speech and fine motor skills such as drawing, writing, and using scissors. Fortunately, by the time Eva started kindergarten, she had largely caught up with her peers -- thanks to two and a half years of physical, occupational, and speech therapy provided by our state's Early Intervention Program.
Crucial to Identify a Mild Disability as Soon as Possible
In fact, there are millions of babies and toddlers like Eva whose delays or disabilities are initially overlooked or dismissed by their doctor. "There's a big focus on autism now, but many doctors are still not good enough at recognizing the many other common developmental issues," says James McBrien, M.D., medical director of the United Cerebral Palsy Association of Nassau County, New York. Although about 2 percent of young children in the U.S. have a profound developmental disability such as autism or cerebral palsy, another 13 percent -- almost one in six kids -- have milder physical or mental disabilities that can affect their ability to play and learn, according to the Centers for Disease Control and Prevention (CDC).
What's more, these numbers appear to be rising. Over the last eight years, pediatric physical therapists have seen a sharp increase in developmental delays in babies younger than 12 months, according to a national survey by Pathways Awareness, a child-advocacy organization. One likely reason: Babies are not getting enough "tummy time," which is crucial for building strength in their upper body and legs. Pediatricians now stress the importance of putting babies to sleep on their back to reduce the risk of SIDS, but busy parents also may be relying too much on the convenience of car seats, strollers, and bouncers during the day, says Garry Gardner, M.D., professor of clinical pediatrics at Northwestern University's Feinberg School of Medicine, in Chicago. The increase in premature births -- related to the boom in fertility treatment and multiples -- has been another factor. Babies born even one to three weeks early are more than 30 percent more likely to have delays and disabilities than full-term babies, reports a recent study in Pediatrics.
Experts say that it's crucial to identify a mild disability as soon as possible because early therapy can dramatically increase the chance that a child will be able to overcome it. Helping a child strengthen her skills involves a team effort by professionals and parents.
The Window of Opportunity
When my daughter was diagnosed with hypotonia, I had never heard the term "early intervention." I certainly didn't know there was a federally funded system to take care of her needs. Because research had shown how essential the first years of life are for a child's development, Congress created the state grant program in 1986 as part of what's now known as the Individuals With Disabilities Education Act (IDEA) to provide free therapy for children under age 3. This includes treatment for delays in cognitive skills, speech, behavior, gross motor skills (physical therapy) and fine motor skills (occupational therapy).
"In the first few years, a child's brain is rapidly developing new connections that enable the skills we call developmental milestones," explains Dr. Gardner. "The mastery of each new milestone -- be it emotional, physical, or cognitive -- leads to the next one. If a particular skill doesn't develop properly, that makes the next one more difficult to master, and a baby may compensate in abnormal ways." Fortunately, a baby's brain is malleable enough to play catch-up when therapy is started soon, but waiting too long can lead to permanent problems.
That's why groups including the American Academy of Pediatrics and the CDC are working to raise awareness about the importance of early intervention for developmental delays. Since 2005 the CDC's "Learn the Signs. Act Early" campaign (cdc.gov/concerned) has encouraged parents to track their children's milestones and get help if they notice significant lags.
Trust Your Instincts
Still, many parents report that their doctor dismissed their concerns about their child for months -- or even years. By the time her son, Patrick, was 2, Chicago mom Mary McGuire (who asked that their names be changed to protect their privacy) noticed that he simply didn't play the way other kids did. "At our weekly playgroup, the other toddlers would quietly build block towers, but Patrick just wanted to knock them down or run wildly through the house," says McGuire. In preschool, he adored his classmates but had trouble relating to them because he'd get overly excited and physical. His pediatrician repeatedly dismissed McGuire's worries, pointing out how verbal and intelligent the boy was, but Patrick continued to have problems in school for years. "Every time we went to the pediatrician, she'd say he was fine, which was what we wanted to hear," says McGuire. "We'd be happy for a week or two -- until his next playdate. Then I knew that something was off, and I wished we could figure out what it was.
Finally, his third-grade teacher suspected that he had Asperger's syndrome, an autism spectrum disorder. McGuire decided to change pediatricians, and the new doctor agreed with the teacher's hunch. He referred them to an autism clinic, where Patrick was lucky to be seen within three months, and he was diagnosed with Asperger's. Fortunately, he has made rapid progress: Now in fourth grade, he is doing well with a full-time aide in his classroom and he has close friends. "However, if we had switched to our current pediatrician sooner, Patrick could have been diagnosed years earlier," says McGuire.
Most parents don't realize that federal law stipulates they are entitled to have their child evaluated by their state's Early Intervention Program -- even without a doctor's referral or an official diagnosis. If a child is found to have a significant enough developmental delay that he meets his state's legal criteria to qualify for therapy, the state is supposed to start providing it within 45 days. Although it's ideal to work in partnership with your pediatrician, you should get your child started in therapy as soon as possible, says Dr. McBrien. So if that means having him evaluated when your doctor says it isn't necessary, so be it.
Developmental problems can be challenging for general practitioners to diagnose, but doctors often have a laissez- faire attitude when parents worry about whether their child is behaving normally, admits Dr. Gardner. "Older pediatricians were taught that it was okay to wait until age 2 to intervene if a child wasn't walking, and until age 3 if he wasn't talking." Sometimes, rushed pediatricians simply don't take the time to evaluate subtle problems or they're too quick to reassure parents who seem overanxious. However, it's important to be honest and direct about your worries. Dr. Gardner suggests saying something like, "For my own peace of mind, I'd rather look into this now because I'm uncomfortable waiting."
Beyond Early Intervention
When Congress passed IDEA, each state was given the authority to determine what services it would offer and whether it would contribute additional funding. As a result, states vary widely in what they provide -- and they don't always begin a child's therapy within the same time period. Many budget-strapped states have long lacked the money to keep up with demand, and the recession has only made matters worse. "Every child won't get the kind of intensive home program he needs," says Jan Blacher, Ph.D., professor of education at the University of California, Riverside, and coeditor of The Handbook of Developmental Disabilities. Fortunately, the 2009 federal stimulus package provided an additional $500 million for early intervention programs in all 50 states. The funds began making a difference in the fall of 2009 and are continuing into 2010.
Private therapy is another option, but health insurers may refuse payment if a child's disability can't be traced to an injury or a disease, or they may set limits on the number of therapy sessions. Children are only eligible for early intervention until age 3. After that, they may get services through their school district's special education program, but kids with relatively mild disabilities often don't qualify because parents need to demonstrate that their child can't function in a classroom without the added assistance. However, experts emphasize that parents also play a crucial role in helping their child at home. "One of the reasons why the early-intervention system has been so successful is that it is designed to help parents facilitate their child's development," says Katy Neas, vice president of government relations for Easter Seals, the nation's oldest organization dedicated to helping children with disabilities. "In therapy sessions, parents learn what they can do at home to help their child gain the skills he needs." For example, Debra Schwartz, of Fairfield County, Connecticut, started reading books upside down. Her 1-year-old son, Joshua, has an auditory processing disorder, and his speech therapist wanted her to sit facing him and hold the book below her chin so that he could see both the pictures and her mouth forming the words. Schwartz had pursued services for Joshua when he was 9 months old because he wasn't responding to her voice even though tests had showed that his hearing was normal.
Therapists also help parents find activities to make skill-building fun. For 2-year-old Kean Zandona, of Tracy, California, that included jumping on the bed with his brothers to help strengthen his weak trunk muscles. "You should have seen the look on our older boys' faces," says his mom, Kris. "After years of nagging, we had finally gotten them to stop jumping on the bed!"
My own daughter's love of animals led us to enroll her in an "equine therapy" program. The weekly lessons not only strengthened her muscles but got her hooked on horseback riding. By second grade, Eva had also discovered an interest in acting that brought a seemingly miraculous improvement in her speech whenever she stepped on stage. Today, these and other newfound passions -- rather than her weaknesses -- have become the milestones that we use to mark each passing year.
Originally published in the June 2010 issue of Parents magazine.
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