Children with special needs are more integrated into our communities than ever before. An exclusive new survey reveals how families of all abilities are navigating this new terrain.
My phone session with the sleep consultant started innocently enough, with talk of night wakings and nap schedules. But the conversation took a turn when I mentioned that my 15-month-old, June, hadn't started walking yet. Grilled for specifics, I assured her that, yes, June was now standing on her own... except on grass. The kid just didn't like the feel of it on her skin.
Hearing the grass bit, the consultant pressed harder. Did labels in her clothes set her off? Certain fabrics? Was she cautious? I thought about June crying in toddler gym class as the other kids happily learned their donkey kicks; angrily refusing to wear anything on her feet but her one, soft pair of "fluffy socks"; pushing desperately on her car-seat straps as if they were suffocating her. Was this average weird toddler behavior... or something else?
As I considered the answers, the consultant circled back to those night wakings. "Sleep," she said ominously, "is one of the body's ways of regulating itself." She nudged me to call an occupational therapist. "Look for one who is sensory-integration certified," she said. "Some people think this means something's wrong. But the idea is to address it now." Which sounded to me like something was wrong.
After going down the Google rabbit hole of symptom checklists and dissecting June's every waking moment, I never called the OT. I wanted to believe that she would grow out of this quirky behavior and figured I would wait and see rather than consulting an expert. This was five years ago, back when our closest occupational-therapy center stood at the far edge of my neighborhood. It was small and almost hidden. If any of our friends were clients, I didn't know about it. The business has since tripled in size and moved to a high-traffic corner beside an ice-cream parlor and a kids' yoga studio. Today I understand that an evaluation in and of itself isn't a big deal and that getting therapy in the early years can be monumentally helpful. As it turns out, June was never diagnosed with anything and has simply turned out to be one of those sensitive types (like her mom), who now sleeps quite nicely (unlike her mom).
However, the transformation in my neighborhood reflects a massive sea change in how we view children who are not developing as expected, or, in other words, children who have special needs. From growing numbers of special-needs PTAs, playgrounds, camps, and toys to Pinterest's "Special Needs Blogs" board (3,500 pins and counting) to plotlines of the TV show Parenthood, physical, mental, and behavioral conditions that were once hidden away in specialized schools and doctors' offices are now woven into mainstream society in ways we haven't seen before. The prevalence of parent-reported childhood developmental disabilities jumped 17 percent between 1997 and 2008, according to the Centers for Disease Control and Prevention. This works out to nearly 10 million children. The most recent data show that one in 88 kids has a diagnosis of autism.
Children with Autism: The Parents Perspective
Perhaps the most dramatic shift has come in how often we red-flag and treat disorders not immediately visible. Roughly 20 years ago, as vaccines helped decrease the impact of infectious diseases, doctors began expanding their focus to include developmental, behavioral, and mental health, explains Ken Carlson, M.D., president of the American Academy of Pediatrics Oregon chapter. "I'd argue those have an even bigger impact on a child's ability to be a happy, productive adult," especially now, he adds, when children are exposed to social media, school violence, and drugs at younger ages. Dr. Carlson's office recently hired a full-time behavioral-health consultant so that pediatricians concerned about a young patient's mental well-being can casually walk that family across the hall to better address their needs. For many parents, it's a kinder, less daunting experience than being handed a referral for an office elsewhere or sent to a doctor not connected to their pediatrician.
Now, federal policy makers are catching on, adds Neal M. Horen, Ph.D., child psychologist at Georgetown University Center for Child and Human Development. After decades of directing resources mainly to older kids "on the far end of the continuum, who needed unbelievable amounts of treatment," he says, the federal government has spent the past decade creating evidence-based programs aimed at detecting, treating, and -- in some cases -- preventing disorders in early childhood. This has bolstered the nation's nearly 25-year-old Early Intervention (EI) program, which was designed to identify significant delays in babies and toddlers. EI had often been limited, due to lack of available resources for families. Today, depending on where you live or your family's needs, EI might mean free or subsidized parenting classes, home visits from developmental specialists, and better mental-health training for all pediatricians. Which is why a kindergartner who might once have been described as disruptive, unmotivated, or intensely introverted is more likely to find a clinical explanation for her behavior... and therapy that really helps.
The parenting classes, well-visit screenings, inclusion classrooms, and TV shows paint a picture of a vibrant special-needs world that we all inhabit, whether or not we have a diagnosis. For this section devoted to exploring this world, Parents reached out to doctors, researchers, health-insurance experts -- and, most important, to parents. Teaming up with Quester, a research company in Des Moines, we surveyed nearly 500 moms, roughly divided between those whose kids have special needs and those whose kids are typically developing. To define just which diagnoses fall into that first group, we looked to the Individuals With Disabilities Education Act and settled on conditions that require intervention and accommodations at school -- including ADHD; autism spectrum disorder; developmental delays and disabilities such as Down syndrome; epilepsy; hearing and vision impairment; behavioral/conduct disorders; arthritis and joint problems; and physical disabilities such as cerebral palsy.
In the end, the big picture the survey revealed is that there is no one big picture. Life in this special-needs world is colorful, enlightening, challenging, unfair at times, and a little messy. Just like childhood.
What's Special About Special Needs?
The answer, of course, depends on whom you ask. Our working definition has plenty of gray areas, to be sure. Diabetes and asthma aren't on the list, but one case gone awry might require a teacher's heroic intervention. Ditto for food allergies. Indeed, 40 percent of moms we surveyed believe food allergies fall under the special-needs umbrella. Some even say that giftedness does, arguing that many classrooms fail to motivate or even identify children in this category.
No matter what your child's circumstances are, raising kids is hard, period. "We all face challenges," one surveyed mom told us. "Whether you're dealing with a 'normal' child's behavior or a peanut allergy or autism, it's all about finding solutions that are best for your family. Even though the challenges are different, many of the experiences are the same." This respondent, we'll add, identified her child as typically developing.
Still, moms of kids with special needs are experiencing parenthood with a layer of specialized obstacles. They're parenting kids who have trouble walking, talking, or hearing; who can't control their impulses; who undergo multiple surgeries; who might never be toilet-trained. (And in many cases, they're also parenting children who don't have special needs.) One mom of a child with special needs described the "constant vigilance" her son requires. "He cannot be left alone. [It] takes much longer to teach life skills. It is impossible to find babysitters. My husband and I often 'tag team' to get through the days." Add in siblings, and the daily schedule becomes dizzying: "I spend most of the morning trying to get my child with Asperger's out of bed and ready," said another respondent. "After picking the other children up from school, [it's time] for homework and then extracurricular activities or therapy. Finally we all head home for dinner. After dinner there are showers and then the kids are off to bed."
Many moms have a calendar peppered with speech-pathologist or occupational-therapy appointments. Mealtimes might be devoted to lessons in proper knife-and-fork control or managing feeding tubes. For some, the weekly slog to the supermarket involves helping a child in and out of a wheelchair or negotiating leg braces.
The Learning Curve
For all the additional challenges they face, most families grappling with special needs seek understanding, not pity. They want a strong community, not a protective bubble.
"Friends and family have a tendency to treat us as if we make a sacrifice to 'deal' with our child," said one mom in our survey. They ask parents -- all parents -- to reach out and connect. Most would prefer someone to walk right up and ask (sensitively) about their child's condition than to shuffle away, laugh nervously, or say nothing.
Which raises the questions: What constitutes sensitivity? And what counts as offensive? The more that families of all stripes coexist, the murkier the answers become. Three out of four moms of kids with special needs say they've heard an insensitive remark from another parent at least once. Meanwhile, only 18 percent of moms of typically developing children admit to making one of those insensitive remarks. Some of them remember using the word retard when they were younger. But most say their comments were unintentional or misinterpreted. This makes sense, considering that a well-meaning "I don't know how you do it" riles some parents almost as much as a snicker or a slur. One mom recalled hearing "He's so cute, though -- are you sure he's really handicapped?" from a stranger. "As if a handicapped child could not be cute."
As moms, our instinct is to help, to fix, to dole out advice -- but our survey results suggest we might consider holding the pointers. "I recently had someone tell me what to do with [my son] rather than ask if I need help," said one respondent. "Very annoying!" Another wished "other parents wouldn't feel the need to tell me... that I could 'cure him' if we eliminated gluten from his diet."
The fact that the survey revealed nothing universal about the way moms of kids with diagnoses feel or want to be treated makes the special-needs landscape tougher to navigate. One respondent's reaction to the term special needs reflected the internal struggle most of us wrestle with: "I don't want my children treated as special," she says. "I just want them to get the accommodations they need and I want others to set the same goals for them as for everyone else."
Amy Lepsis, a Philadelphia-area mom of three including a 3-year-old who has been diagnosed with autism spectrum disorder, did not participate in our survey but shared this viewpoint on labels: "As a speech language pathologist and the mom of a child with developmental delays, I feared a diagnosis of autism most. But now my opinion is, who cares if a label follows her through her school career? The only thing a diagnosis should do is open up the possibility of qualifications for school programs and/or insurance coverage for private therapy services. Beyond that, the diagnosis itself means nothing to me."
Don't all of us want our children to feel comfortable while getting the individualized attention -- and help -- they need? Nowhere is this push and pull more pronounced than in school, where increasingly, children with ADHD, autism, and other conditions learn alongside so-called typical kids.
However, the road to inclusion isn't always smooth, especially in today's competitive classrooms. One surveyed mom of a typical child said that "many times, my child complains of boredom because your child takes up more time from the teacher." Said another: "You can't slow down the rest of the kids for the needs of a few. Everyone needs to evaluate if it's working for the child to be integrated or if it's disruptive." Moms of kids with special needs sometimes lament their schools' inability to meet their children where they are, whether due to inadequate transportation, lack of staff specialists, or a "one-size-fits-all" approach to special education. More than half say their school doesn't satisfy their child's needs.
Living Life with Sensory Issues
The Kids Just May Be All Right
At the end of the day, only about 15 percent of all the moms surveyed believe children should be separated from their peers based on a diagnosis. After all, kids with pronounced conditions are often shadowed by aides who not only help those children through their day but also often function as an assistant teacher the rest of the class can learn from. Perhaps more important: A properly run inclusion classroom actually creates a richer learning experience that extends well beyond the Common Core, with lessons in compassion and sensitivity, and a deeper awareness of the abilities (and hardships) we all bring to the table.
"If a child wants to be with other kids and no one is at risk of getting hurt," explained a mom of a typically developing child, "why shouldn't [he] be blended in?" A mom of a child with special needs adds, "Kids just want to be kids. Treat them with respect and help them to blend in where they can."
Sure, parents of kids with special needs worry about their children's ability to make friends, or even communicate, especially in inclusion settings. But 89 percent of them say their children seem pleased with their social network. Meanwhile, 79 percent of moms of typically developing kids gave the same response.
The encouraging message here: Our children are generally a happy bunch. At times, they're even more deft than we adults are at navigating the special-needs landscape. With our love, they can recover from the sting of an insensitive remark, and those who hurl a slur today can learn empathy tomorrow. "Part of being a parent" -- any parent -- "is being okay with a little discomfort," says Walter Gilliam, Ph.D., director of The Edward Zigler Center in Child Development and Social Policy at Yale School of Medicine, in New Haven. It's also about reveling in everyday victories. "Physical impairment doesn't diminish love, creativity, [and] adventuring," said one survey respondent. "I value my son perhaps more than the parent of a typical child, because he nearly died and he survived. Now he thrives in every sense that is most important. When he hits physical milestones, I celebrate. But not as much as I celebrate his kindness, cleverness, and great way with people."
What moms of children with special needs wish other parents knew:
- "I may look tough, but know that I'm as fragile as my child. I just don't have the option to show it."
- "Please don't tell me to just relax. There is always something to be done: doctor appointments, therapy appointments, insurance people to talk to, papers to be filled out, extra encouragement and praise and attention to be given. It's exhausting."
- "We often can't do activities other people with kids the same age do, [but] I still relish the adult friendships [with moms whose kids don't have special needs]."
- "Be more sensitive when bragging about [your] typically developing kids. Even though we are blessed and thankful for our kiddos, [we also] feel sadness for not being able to experience certain things that other people might take for granted."
A True Group Effort
Sincere thanks to the following, who connected us to parents who took our survey: American Society for Deaf Children; Autism Speaks; Easter Seals; Ellen Seidman (blogger at lovethatmax.com and on Parents.com); National Down Syndrome Society; United Cerebral Palsy; YAI. Thanks also to Amy Lepsis and Roseann Pizzi, two parents whose input was invaluable.
Life With Down Syndrome
Originally published in the April 2014 issue of Parents magazine.
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