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What moms of kids with invisible disabilities want you to know

While some disabilities demand recognition via a wheelchair, hearing aid, or portable oxygen tank, others are more subtle, but that doesn't make them any less real. Known as invisible disabilities, these affect 96% of people who have a chronic medical condition according to one estimate.

Caring for a child with any disability presents extra challenges. For the parents of kids with invisible disabilities, those challenges often include the misperceptions of their communities – including friends, family, neighbors, and teachers – that are uninformed at best and hostile at worst.

I talked to moms of kids with invisible disabilities including Autism Spectrum Disorder (ASD), Avoidant and Resistive Food Intake Disorder (ARFID), hemophilia, and many others, to find out what they wish more people understood about their experiences. Here are some of them.

Sensory processing issues are NOT discipline issues

According to the American Occupational Therapy Association, sensory processing affects virtually all aspects of a child's daily life, including motor coordination, school performance, and relationships. A child with sensory processing disorder could have 20/20 vision and perfect hearing, but when he's in a crowded mall, his brain is not able to manage all of the auditory and visual information he's receiving through his eyes and ears.

While each kid reacts differently to overstimulation, some will scream or become physically aggressive. What may look like defiance is just a kid doing his best to manage a stressful environment. The assumption that a lack of discipline indicates a failure by the parent is totally without merit. Here are few of their stories.

Jaime has a 5-year-old son with level one high functioning ASD. She says, "Discipline will not prevent him from being overwhelmed by his environment."

Lainie Gutterman, the mom of a 7-year-old boy with ASD agrees. She says when her son is having a meltdown, "Staring, pointing and offering your two cents is not helping the situation and will most likely cause my son or myself to feel worse and [his] behaviors to escalate."

Similarly, Jennifer Lynn, whose son has ADHD, wishes people understood she's not being rude or indulging her children when she leaves a party abruptly. "It's just that we see the warning signs and are trying to help our kiddo avoid a meltdown." She says events like family gatherings or vacations, which are fun for most people, "are stressful for our family because it's just too much everything."

A little compassion goes a long way

Regardless of their child's diagnosis, virtually every mom I talked to described the pain of receiving judgment instead of compassion. Sarah Cottrell, whose son has hemophilia, is tired of challenging people's assumptions about his diagnosis. She says, "He doesn't have AIDS and hemophilia isn't caused by incest. Enough with the wild theories, because we need compassion and empathy for the unseen pain issues and unending fear and anxiety over covering his insurance."

Most parents I talked to, particularly those of kids with sensory processing disorder, described organizing their days around their kids' strict routines. Every parent understands how easily the best-laid plans for meals, naps, and bedtimes can implode. What many parents don't understand is how much higher the stakes are when your special-needs child depends on predictability for a sense of safety.

Lisa Rosen, who wakes up 90 minutes before her kids in order to prepare for the non-stop mental and physical energy her son requires, says, "When adults look at my child, they see a happy kid…. But I know that if one thing is off in our routine, I'm dealing with Hiroshima."

Her son Ezra, age three, has sensory processing disorder and is speech delayed. According to Rosen, something as seemingly minor as the smell of a classmate's detergent could cause him to melt down to the point where she must carry him out of the classroom – regardless of whether she's carrying her 15-month-old baby as well. She describes her family's disappointing absence of understanding when she couldn't attend the funeral of a family member due to a lack of childcare coupled with Ezra's regimented schedule and complex needs. "Who knew compassion was so difficult to come by?" she asks.

The predictability some kids require doesn't just extend to schedules and environments, but also to food. Brianna Bell and Jennifer Gregory each have a child with sensory processing disorder that makes them intolerant of many foods. Because of this, Bell hates sharing meals with friends. She says, "There is so much pressure from others for her to eat this and that and not be so picky. I feel rude bringing my own food but she starves if I don't. And people just don't understand and assume she's spoiled."

Gregory asserts that her family frequently eats separately. She serves alternative meals and allows screens at the table, and this works for them. She wants people to understand that for her family, "Mealtime is chock full of stress and anxiety and the goal is to get food into our son's belly because he doesn't eat enough. If an iPad distracts him from smells and texture and allows him to eat more, so be it."

Parents described not only a shortage of kindness from other parents, but also from other children. Lisa Beach recalled her son's adolescent years as being particularly isolating. He is now 20 and has Asperger's. Beach's advice to parents is simple: "Teach [your] kids to reach out and include rather than label and judge."

Just because you can't see it doesn't mean it's not there

When a parent is struggling to find a diagnosis, pay for therapies, or just get through the day with a kid who has an invisible disability, it is not helpful to insist nothing's wrong because their kid looks so "normal" or that her IQ is so high. What may be intended as a compliment may come as a slap in the face to the parent who has committed precious time, energy, and money to her child's disability.

Samantha Taylor's 13-year-old has high functioning autism, generalized anxiety disorder, and an eating disorder, while her 10-year-old has dysgraphia and anxiety. Although Taylor is open with her friends and family about her kids' diagnoses, because they appear "normal," she says people are often shocked when her kids say something inappropriate or react in a way that is out of proportion to the situation.

Says Taylor, "While it might look to everyone in our lives that we are holding it all together, I worry about my boys every single day. I wake up thinking about what I can do to make their day easier, and go to bed wondering if I did enough." In search of a supportive community, Taylor ended up creating a thriving Facebook group for moms of kids with special needs.

One mother (who prefers anonymity) describes feeling frustrated when people judge her for coming to her son's aid. He is in his early 20's and has high functioning Asperger Syndrome. While she may appear overprotective, that is not the case.

She says, "High functioning individuals are acutely aware that they are different and sometimes have self-confidence issues. Shaming them for needing help is not productive and can contribute to anxiety and depression. Thoughtless comments can sometimes 'undo' progress that has been made."

You're an advocate

Parents of kids with invisible disabilities are not just responsible for feeding, clothing, loving, disciplining, and teaching their kids. They must also advocate for their kids in a system that does not always have their best interests at heart.

One mom, who preferred to remain anonymous, described the challenge of having a 12-year-old son who has ADHD and a learning disability. She described his teachers' low expectations, recalling an Individualized Education Program (IEP) meeting where a teacher was clearly impressed with her son's "C", "and how great that was 'for a kid on an IEP.'"

To compensate for his teachers' low expectations, she says she always reminds her son that "[he] is smart and his IQ reflects that. There is no reason he shouldn't be able to get an 'A' … if he is provided with the right services." She also described a general lack of understanding of her son's ADHD diagnosis among his teachers, which she feels causes them to set unreasonably high expectations of him in other areas, such as his ability to get organized or follow a schedule.

Delaina Baker, whose son is dyslexic and has auditory processing disorder, described similar struggles with her son's school. She says she wishes teachers were more accommodating of his IEP. Says Baker, "It is my right to fight for my child and if you challenge my knowledge of his disability, I can assure you, I'll have a spreadsheet, charts, and back-up data to prove it." She says she is grateful to have found an ally in her son's Exceptional Student Education (ESE) coordinator, whom she feels is her son's only advocate beside herself.

Parenting is hard enough without adding other people's assumptions to the equation. Parents of kids with invisible disabilities just want the world to know that it's only okay to assume one thing: They and their kids are doing the best they can.

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Unstructured play is play without predetermined rules of the game. There are no organized teams, uniforms, coaches or trainers. It is spontaneous, often made-up on the spot, and changeable as the day goes on. It is the kind of play you see when puppies chase each other around a yard in endless circles or a group of kids play for hours in a fort they created out of old packing boxes.

Unstructured play is fun—no question about it—but research also tells us that it is critically important for the development of children's bodies and brains.

One of the best ways to encourage unstructured play in young children is by providing open-ended toys, or toys that can be used multiple ways. People Toy Company knows all about that. Since 1977, they've created toys and products designed to naturally encourage developmental milestones—but to kids, it all just feels like play.

Here are five reasons why unstructured play is crucial for your children—

1. It changes brain structure in important ways

In a recent interview on NPR's Morning Edition, Sergio Pellis, Ph.D., an expert on the neuroscience of play noted that play actually changes the structure of the developing brain in important ways, strengthening the connections of the neurons (nerve cells) in the prefrontal cortex, the area of the brain considered to be the executive control center responsible for solving problems, making plans and regulating emotions.

Because unstructured play involves trying out different strategies without particular goals or serious consequences, children and other animals get to practice different activities during play and see what happens. When Dr. Pellis compared rats who played as pups with rats that did not, he found that although the play-deprived rats could perform the same actions, the play-experienced rats were able to react to their circumstances in a more flexible, fluid and swift fashion.

Their brains seemed more "plastic" and better able to rewire as they encountered new experiences.

Hod Lipson, a computer scientist at Cornell sums it up by saying the gift of play is that it teaches us how to deal with the unexpected—a critically important skill in today's uncertain world.

2. Play activates the entire neocortex

We now know that gene expression (whether a gene is active or not) is affected by many different things in our lives, including our environment and the activities we participate in. Jaak Panksepp, Ph.D., a Professor at the University of Washington studied play in rats earning him the nickname of the "rat tickler."

He found that even a half hour of play affected the activity of many different genes and activated the outer part of the rats' brains known as the neocortex, the area of the brain used in higher functions such as thinking, language and spatial reasoning. We don't know for sure that this happens in humans, but some researchers believe that it probably does.

3. It teaches children to have positive interaction with others

It used to be thought that animal play was simply practice so that they could become more effective hunters. However, Dr. Panksepp's study of play in rats led him to the conclusion that play served an entirely different function: teaching young animals how to interact with others in positive ways. He believed that play helps build pro-social brains.

4. Children who play are often better students

The social skills acquired through play may help children become better students. Research has found that the best predictor of academic performance in the eighth grade was a child's social skills in the third grade. Dr. Pellis notes that "countries where they actually have more recess tend to have higher academic performance than countries where recess is less."

5. Unstructured play gets kids moving

We all worry that our kids are getting too little physical activity as they spend large chunks of their time glued to their electronic devices with only their thumbs getting any exercise. Unstructured play, whether running around in the yard, climbing trees or playing on commercial play structures in schools or public parks, means moving the whole body around.

Physical activity helps children maintain a healthy weight and combats the development of Type 2 diabetes—a condition all too common in American children—by increasing the body's sensitivity to the hormone insulin.

It is tempting in today's busy world for parents and kids to fill every minute of their day with structured activities—ranging from Spanish classes before school to soccer and basketball practice after and a full range of special classes and camps on the weekends and summer vacation. We don't remember to carve out time for unstructured play, time for kids to get together with absolutely nothing planned and no particular goals in mind except having fun.

The growing body of research on the benefits of unstructured play suggests that perhaps we should rethink our priorities.

Not sure where to get started? Here are four People Toy Company products that encourage hours of unstructured play.

1. People Blocks Zoo Animals

These colorful, magnetic building blocks are perfect for encouraging unstructured play in children one year and beyond. The small pieces fit easily in the hands of smaller children, and older children will love creating their own shapes and designs with the magnetic pieces.

People Blocks Zoo Animals 17 Piece Set, People Toy Company, $34.99

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This article was sponsored by People Toy Company. Thank you for supporting the brands that support Motherly and mamas.

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Dana Dewedoff-Carney has a beautiful family. On paper, she's a mom of three. But in her heart, she has five children. She's had two miscarriages, one last year at five weeks, and another this past summer.

"I lost our son in June. I was 14 weeks pregnant, but he had passed away at 12," she tells Motherly, explaining that she and her husband had already named their boy Benjamin.

He never got a chance to live in this world, but he is changing it. His mama is the force behind Project Benjamin, a photo series that is going viral and changing the way people talk about pregnancy and infant loss.


Dewedoff-Carney started Rise for Women, a New Jersey-based organization dedicated to empowering women and connecting them with the resources they need to thrive. Rise for Women was born out of a painful time for Dewedoff-Carney. She was a single mom of three, and she was struggling, although from the outside she looked fine.

After launching Rise for Women Dewedoff-Carney created the hashtag #StruggleDoesNotHaveALook, which took on a whole new meaning this year after she and her now husband lost their babies. She came up with another hashtag, #TheyMatterToo, to remember them, and invited other moms to join in a photo session.

Each mother had her portrait taken with a chalkboard bearing a phase that someone told her after her miscarriage.

In Dewedoff-Carney's case, a doctor who perhaps meant to be kind told her the baby she lost "was the wrong baby." Other women in the photo series were told they could always adopt, or that they should be happy with the children they already have. Dewedoff-Carney says sometimes people don't realize how much their words cut those suffering a loss.

"I know people are not saying these things to be malicious and hurt us, but if they could just be a support and say, 'I am so sorry for your loss, I'm here for you,' that is so helpful," she explains.

Experts agree. Jessica McCormack is a licensed marriage and family therapist in private practice at The Self Care Path in Burr Ridge, Illinois. She says parents who've suffered a pregnancy loss don't need people to try to offer solutions or minimize their grief, but just to validate it.

"You aren't trying to fix their emotions, you are simply stating, 'I hear you, that was so hard for you, this really sucks right now.' No need to fix, no need to tell someone it will be okay. It's a time to just give a hug and tell them it's okay to feel how they feel. This often creates comfort just by knowing someone is there for you," she tells Motherly, adding that it is totally normal for parents to struggle after a loss.

"It's a completely normal experience to have a bunch of grief, sadness, depression, anxiety, shame, guilt and jealousy of others with healthy successful pregnancies," McCormack explains.


For Dewedoff-Carney, that's exactly what Project Benjamin is all about. She says too often conversations about the feelings one has after a miscarriage or infant death are happening behind closed doors or in private Facebook groups. She hopes her photo series will help people realize they're not alone, and that the woman down the street (or on Instagram) who seems to have it all may be suffering herself.

By having a very public conversation about pregnancy loss, Dewedoff-Carney and her fellow moms are hoping more people will understand what they're going through, and not try to minimize it.

Ashlyn Biedebach is a Registered Nurse and founder of By The Brook Birth Doula. She says "when a woman suffers a loss, at any gestational age, it is truly a loss, not just of a baby, but of hope and an idea of the future."

Biedebach suggests if parents who've suffered a loss encounter loved ones who don't seem to be recognizing their baby, they try to give them some grace, but that doesn't mean you have to pretend it didn't happen.

"Well-meaning family members may intentionally choose to move past painful experiences, even if you are still deep in the grief of the loss of your baby. Bringing up your loss in a gentle way, or having an intentional conversation with those who are moving on can help, but also talking with a counselor, too."

As a therapist, McCormack agrees. "Since it's roughly 1 in 4 women that have a pregnancy that ends in miscarriage, women need support," she tells Motherly, recommending that women who've had a loss talk to their OB-GYN or family physician and ask if there are any support groups in their community.

If your doctor doesn't refer you to a support group you can find a therapist yourself. McCormack suggests women simply search the psychologytoday.com therapist directory by entering their zip code along with the keywords "miscarriage" and "fertility." The therapy doesn't have to be just for mom, either. Sometimes dads need to talk, too.

"I also encourage couples to go to therapy after something like this, as men tend to feel lost and uncertain as to how to process their own feelings while supporting their partner," says McCormack.

Both McCormack and Biedebach agree that talking about this kind of loss, whether in person or over social media, is important. Biedebach says, for some parents, honoring their baby through a social media post is their way of remembering and recognizing their importance. McCormack notes that a social media post can also be a good way to invite a larger quantity of people to support you in your time of need.

"It also reduces the stigma by bringing to light that it is completely normal for women to experience something like this," she explains.

That's Dewedoff-Carney's goal, and while she can't travel the county photographing mothers herself, she's inviting anyone to join the conversation by taking their own photo, sharing their story and using the hashtags #StruggleDoesNotHaveALook and #TheyMatterToo. Since her photos went viral, women have been commenting and sharing their stories publicly, and it's brought Dewedoff-Carney to tears.

"They're naming the children that they lost," she explains. "They're doing that, they're speaking their truth, and they're letting it out."

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In the moments after we give birth, we desperately want to hear our baby cry. In the middle of the night a few months later it's no longer exactly music to our ears, but those cries aren't just telling us that baby needs a night feeding: They're also giving us a hint at what our children may sound like as kindergarteners, and adults.

New research published in the journal Biology Letters suggests the pitch of a 4-month-old's cry predicts the pitch they'll use to ask for more cookies at age five and maybe even later on as adults.

The study saw 2 to 5-month olds recorded while crying. Five years later, the researchers hit record again and chatted with the now speaking children. Their findings, combined with previous work on the subject, suggest it's possible to figure out what a baby's voice will sound like later in life, and that the pitch of our adult voices may be traceable back to the time we spend in utero. Further studies are needed, but scientists are very interested in how factors before birth can impact decades later.

"In utero, you have a lot of different things that can alter and impact your life — not only as a baby, but also at an adult stage," one of the authors of the study, Nicolas Mathevon, told the New York Times.

The New York Times also spoke with Carolyn Hodges, an assistant professor of anthropology at Boston University who was not involved in the study. According to Hodges, while voice pitch may not seem like a big deal, it impacts how we perceive people in very real ways.

Voice pitch is a factor in how attractive we think people are, how trustworthy. But why we find certain pitches more or less appealing isn't known. "There aren't many studies that address these questions, so that makes this research especially intriguing," Hodges said, adding that it "suggests that individual differences in voice pitch may have their origins very, very early in development."

So the pitch of that midnight cry may have been determined months ago, and it may determine part of your child's future, too. There are still so many things we don't know, but as parents we do know one thing: Our babies cries (as much as we don't want to hear them all the time) really are something special.

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The other morning, I took my clothes off before stepping into the shower. In my little bathroom, I stopped to check out my mom-of-two body in the mirror. My breasts drooped. My stomach stretched flat until below my navel. There, protruded my kangaroo pouch where my uterus stretched twice for two healthy babies.

Then, my eyes glanced lower to the scar from my first birth—my C-section. The swooping line had faded. The right side seemed darker, but the left side turned light. The scar almost smirks at me now.

While in the shower, I cleansed my scar gently with a lavender loofah. Although the cesarean occurred over six years ago, I always wash it softly. A sense of sadness washed over me—I don't want my scar to fade. My scar reminds me of determination, redemption, and love.

Yes, it was years ago when the doctor took his utensils and sliced me open, but for some reason, I felt like the scar would always look like it was painted on.

My C-section story mimics one of far too many women. I felt like I was bullied into it. I had only labored for 18 hours and was dilated to a seven. "Trust me," my obstetrician said, "I've delivered hundreds of babies. You're not built to have this baby naturally." True, I'm only five feet tall, but I didn't really buy into the lie he was trying to to get me to believe. "Just give me one more hour," I begged, "I'll progress."

"I have eight other babies to deliver tonight," he said.

He wasn't lying.

"A C-section is a routine surgery," he continued.

After more pleading on his part, I finally gave in. The nurse wheeled me into the OR and I delivered my first baby at 9:33 pm on June 12, 2012. The recovery, the breastfeeding—everything about early motherhood—pushed me inches close to depression.

When I went back to see my obstetrician for my six-week check-up my doctor looked at my incision to make sure I was healing okay. "Wow," he said, applauding himself, "who stitched you up? That is one clean incision." From those arrogant words, I made up my mind: My next birth will be a VBAC.

And almost two years later (and working with a new provider), I gave birth to my daughter. I had her vaginally. My strong-willed daughter decided to thunder into this world five days late. And her birth was the hardest thing I've ever done in my life.

From start to finish, her labor lasted 50 hours. It was two days of agony, doubt, and full-blooded grit. After pushing for over two hours, I remember looking up at the white clock. I wanted to give up. At that point, I had labored for 49 hours. There is no way I'll be able to mentally recover from another C-section, I thought. Sorrow filled me. I didn't have any will left within me—I didn't think I could push anymore.

I was wrong.

I thought of the arrogance I encountered with my first obstetrician. He took my will away from me. He took my right to a natural childbirth. He even took some of my joy.

But I also felt like I let him.

So, the second time around, I made the decision to push—harder. In a way, that doctor empowered me to speak up for myself and believe in my determination. After another hour—three hours total of pushing—the time had come. At 3:54 on June 25, 2014, my daughter was born via VBAC. Her ferocious cry woke my spirit. As her black hair laid on my chest, we sobbed together—a determined mother and daughter.

So, now that my scar is starting to fade, I feel sad. This scar represents my own grit. My own tenacity. My own stubbornness. Things I now pass down to my daughter. I was not going to allow someone else tell me how my next baby was going to be born. My joy belongs to me. I took control of it, as much as I could.

I used to feel a little ashamed of my scar. To me, it represented my inability to speak up for myself. It represented my weakness. But now, my scar represents strength. So, now that I notice it is starting to fade, I feel like I want to tattoo it on permanently.

I look forward to the day when I'm changing my clothes in front of my daughter and she asks, "Mom, what's on your belly?" I'll tell her, "This scar is where your brother came from—and where our unified courage was birthed."

I hope this scar stays dark just a few years longer. Because it means that I can tell my daughter about her birth story—one where we defied the odds together—as a team.

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On a typical day, my 18-month-old daughter will ingratiate herself with the kids whose mothers thought to bring brightly-colored shovels and Fisher Price dump trucks to the park. I will inevitably come over and make sure to ask if it's okay that my daughter is playing with their toys. The mother will chirp, “Of course!" She will then turn to her brood. “We're sharing our toys with the baby!"

I will retreat to my post. I will watch vigilantly for signs that my daughter may be about to put a pile of gravel into her mouth or launch a handful of the tiny rocks in the air. I will watch as she explores the playground. I will also watch her take a tumble, the other mother jumping to her rescue before she's even landed.

“Oh, honey. It's okay. Your mama's right here." she'll croon, her eyes searching desperately for the child's mother, for me. My daughter, now hysterical, will be in this woman's tentative arms.

I will walk over and take my red-faced child, who will wrap her legs around my waist and bury her face in my shoulder.

“Thank you so much." I will say.

“Oh, it's no problem. I didn't see exactly what happened, but luckily I was right here."

I will return to my perch. My gaze will be fixed on my child but my mind will be fixated on the scene that has just played out.

In the small act of responding to my daughter's fall, this other mother has undermined me—which likely wasn't what she was intending to do, but still, is exactly how it made me feel. She's assumed that the right action was to go with her instinct, to rescue my daughter. Wrapped up in this assumption is the idea that I would've rescued her myself if I had been paying attention—that I would have prevented the fall in the first place if I cared.

I want to tell this woman that I do care, that my aloof exterior belies an infinite reservoir of caring. I want to defend myself and explain what kind of mother I am. I want to tell her that I am a wonderful mother, too.

I'm not the mother who brings a sippy cup of fresh juice and a Tupperware full of cheese cubes and sliced grapes to the park. Random fruit squeeze pouches from our last plane trip litter the bottom of my diaper bag, but this does not make me a bad mother. Of course it doesn't. And it doesn't make Tupperware-Mom the World's Best Mother. We're equal, but different.

I'm not the mother who rushes in when my daughter falls. I rarely get into a child-sized playground structure with her. This does not make me a bad mother. From a distance, I'm vigilant. Could her head fit through the slats in that fence? If she fell, how far would the drop be? How soft would the landing be? Is that structure designed for a toddler or a bigger kid? If I don't need to be next to her, I observe from afar.

It would be so much easier to be by my daughter's side at all times, holding her hand, spotting her as she climbs her way through the park. Though I ache to protect her from every danger, I force myself to hang back. How will she learn what's safe if I'm always protecting her? How will she know how far she can jump if she never falls short?

I want my daughter to love to play for its own sake. I may stand quietly off to the side, but as she zooms down the slide, her mouth open wide in a jubilant smile, my heart rejoices.

This is the kind of mother I am.

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