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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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Seeing your baby for the first time is an amazing experience for any parent. For most parents, the months preceding this meeting were probably spent imagining what the baby was experiencing inside the womb, trying to paint a realistic picture on top of that two-dimensional black and white ultrasound photo.

But thanks to Brazillian birth photographer Janaina Oliveira and a baby boy named Noah, parents around the world are now better able to imagine what their baby's world looked like between the ultrasound picture and their first breath.

While most babies are born without their amniotic sac intact, Noah entered the world (via C-section), still cocooned inside his. This is known as an en caul birth, and while it wasn't the first Oliveira has captured through her lens, it is likely now the most famous of her photographs.

After she posted Noah's birth photos to Instagram, Oliveira's photos went viral, making headlines around the world.

This slideshow is amazing.

In a Facebook post, Noah's mom Monyck Valasco explains that she had a tough pregnancy with Noah, and is so grateful that he did not arrive too early.

Noah is now something of a celebrity in his hometown of Vila Velha, Brazil, but local media reports he was actually one of three en caul babies born at the Praia da Costa Hospital in just one month. Birth photographer Janaina Oliveira actually captured all three en caul births on camera. Little Matais arrived before Noah, and baby Laura came afterward, both en caul.

These photographs are as breathtaking as the babies featured in them and remind mothers around the world that our bodies were once someone's whole world. And now they are ours.

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Alexis Ohanian has made a lot of important decisions in his life. The decision to co-found Reddit is a pretty big one. So was marrying Serena Williams. But right up there with changing internet culture and making a commitment to his partner, the venture capitalist lists taking time off after his daughter's birth as a significant, life-changing choice.

"My understanding of showing up and being present for my wife was taken to a whole new level when Olympia was born. I was able to take 16 weeks of paid leave from Reddit, and it was one of the most important decisions I've made," Ohanian says in an essay for Glamour.

A nearly four-month parental leave is something too few American mothers, let alone fathers, get to take. Even when fathers work for companies that offer generous parental leave packages, they often don't use the benefit for fear of being sidelined or seen as uncommitted. A recent survey by Talking Talent found fathers typically use only 32% of the time available to them.

In his essay, Ohanian recognizes that he is privileged in a way most parents aren't.

"It helped that I was a founder and didn't have to worry about what people might say about my 'commitment' to the company, but it was incredible to be able to spend quality time with Olympia. And it was perhaps even more meaningful to be there for my wife and to adjust to this new life we created together—especially after all the complications she had during and after the birth," he explains.

(The GOAT's husband is making the same points that we at Motherly make all the time.)

He continues: "There is a lot of research about the benefits of taking leave, not only for the cognitive and emotional development of the child but for the couple. However, many fathers in this country are not afforded the privilege of parental leave. And even when they are, there is often a stigma that prevents them from doing so. I see taking leave as one of the most fundamental ways to 'show up' for your partner and your family, and I cherished all 16 weeks I was able to take."

👏👏👏

By first taking his leave and then speaking out about the ways in which it benefited his family, Ohanian is using his privileged position to de-stigmatize fathers taking leave, and advocate for more robust parental leave policies for all parents, and his influence doesn't end there. He's trying to show the world that parents shouldn't have to cut off the parent part of themselves in order to be successful in their careers.

He says that when his parental leave finished he transitioned from being a full-time dad to a "business dad."


"I'm fortunate to be my own boss, which comes with the freedoms of doing things like bringing my daughter into the office, or working remotely from virtually anywhere Serena competes. My partners at Initialized are used to seeing Olympia jump on camera—along with her doll Qai Qai—or hearing her babbling on a call. I tell them with pride, 'Olympia's at work today!' And I'll post some photos on Instagram or Twitter so my followers can see it too," Ohanian explains.

"The more we normalize this, on social media and in real life, the better, because I know this kind of dynamic makes a lot of men uncomfortable (and selfishly I want Olympia to hear me talking about start-ups!)," he says.

This is the future of family-friendly work culture. Take it from a guy who created an entire internet culture.

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Trigger warning: Some of these responses describe a women's experiences with child loss.

Anxiety is one of those concepts you can never truly grasp until you face it yourself. And, each person's anxiety can announce itself in different ways—for some, it's postpartum anger, while for others, it's an overwhelming feeling of worry about a pregnancy. This can be especially prevalent if you're at high risk, concerned about telling your boss or undergoing medical issues. If you suffer from anxiety, know you're not alone in this mama. In fact, women are twice as likely to develop an anxiety disorder than men.

These mamas shared how they manage and cope with their anxiety on Chairman Mom:

1. Hypnobirthing class

"I took a hynobirthing class at a nearby parents resource center—it was phenomenal. The class changed my emotional forecast for both the pregnancy and delivery. I uncovered a calm existence that lived dormant inside a very anxious body. For quick help at my fingertips, I love the Headspace app. My favorite quote pops up on the screen before I tap to complete a meditation 'Rather than the mind leading the breath, allow the breath to lead the mind. Keep glowing!'" —Jenny

2. Journaling

"It took my husband and I three years to have our IVF miracle baby after a devastating miscarriage last summer. I was wracked with anxiety for the entire duration of my pregnancy and it got worse as I got closer to his due date. The one thing that helped me was to journal. I wrote to the baby constantly about every step of the process and was very raw and real about the emotions I was experiencing each step of the way."—Anonymous

3. Set some ground rules

"[While I was on strict bedrest for 10 weeks] I tried to set ground rules for myself—I 'indulged' in worst case scenario/message board/Googling for exactly 30 minutes each day, and had to fill the rest of the bedrest time with other positive activities. I controlled for the factors I could, and just tried to chill out about everything else. Easier said than done, but I forced myself to breath deeply and try to limit the physical effects of my anxiety."—Milo

4. Therapy

"I feel like this could be my answer for many questions, but I say get to therapy. Anxiety can be a normal part of parenthood and it's a good idea to take the time before baby comes to build your tool kit and to feel like, even though it is full of unknowns, you have prepared your heart for the wild ride that is motherhood. I am an anxious person by nature, a worrier, a big feeler— learning that this is okay and that I can use it to my advantage has been empowering beyond measure. You are not alone and you will get through this. Hugs to you. If you are an "action person" and can't/won't get into therapy right now, this workbook has a lot of good, practical exercises."—Stratton

5. Reading this book

"I found a book called Finding Calm for the Expectant Mom useful. The major anxiety reducer for me during pregnancy was walking, because it was the only time I didn't feel sick early on and then later it was the only time the baby wasn't kicking me (which is supremely comforting and yet not). I found going with a mid-wife rather than a doctor helped alleviate a lot of anxiety. In Ontario (Canada) this is covered by OHIP (provincial health insurance). Midwives have way more time and patience. All appointments are booked for 30 minutes, so you never feel rushed."—Sian

6. Find a super knowledgeable OB

"I'm currently pregnant (second trimester) with two complications one of which can cause stillbirth. I found the best way to reduce anxiety was finding a super knowledgeable OB that I could talk to about treatments and milestones. Ask them about what kind of monitoring they'll do for you in the third trimester (NST/BPPs). Talk about contingency plans. I also found a doula that has been wonderful to talk with about the process of birth and the potential of NICU time and emergency c-sections (both not that uncommon with other women that have the same condition I do.) I whole heartedly recommend finding a therapist that you can talk with about your fears and anxieties. Look for ones who specialize in new moms. If there are any support groups for mamas with your high risk condition I also urge you to seek them out. Setting a limit for how much time you spend there is also extremely wise. And know that there are women who will experience loss in those groups. That doesn't mean you will." —Anonymous

7. Yoga, working out + meditation

"[After a miscarriage] what I've learned is that all that worrying didn't make a difference. It didn't make me feel any more prepared or okay once I lost the baby. And it limited how much I enjoyed those three months that I was pregnant. Next time I'm not going to read anything or Google anything or read any odds. I'm just going to take everyday as a gift. I know that's easier said than done. Yoga, working out, meditation. Being around people who don't know because then you can't talk about it or obsess about it. Warm baths, tea. Just be super super nice to yourself. Don't worry about what you should be eating or shouldn't be eating, etc."—Anonymous

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Having a new baby is incredibly hard. And beautiful and fulfilling and rewarding, of course—but definitely, definitely hard.

Especially the nights.

Watching the last rays of sunlight disappear would make my heart race. My 3-week-old baby didn't sleep for more than an hour and a half at a time and had zero regard for what time it was.

She was so tiny and helpless—and it was my responsibility to keep her safe and fed and healthy. For me, that was easier during the day. Because at night, it felt unfair knowing my husband and toddler were fast asleep a few rooms over.

The minute our newborn would wake, I would spring to action. Bottle, breast, pacing the floor, bouncing on an exercise ball, loud shushing into her tiny ear—I would do whatever it would take to get her to quiet down so she wouldn't wake the rest of the house.

The evenings also started to feel very isolating. It's hardly appropriate to call your mom or friend or sister at 1 a.m. when your baby starts spitting up a curdled milk mixture so hard it comes out of her nose. And even if I did call anyway, it wouldn't matter because they wouldn't answer because they'd be sleeping.

I was used to anticipating a lack of sleep each night, which was terrifying. I felt such dread knowing I would only get a collective two and a half hours of sleep before my toddler would wake up at 5:30 a.m, ready for his morning dance party.

Fear would strike me at night, too. An incapacitating, all-consuming fear that something might happen to my sweet baby girl while she was lying peacefully in her safe crib, in her baby-proofed nursery. I often wondered how I was even supposed to sleep with such intense worry on my mind.

I would stare for hours into the pitch black night, half of me thankful my baby was healthy, the other half of me terrified something would happen to her.

I'd feel irrational in the late hours of the night (or more likely, the wee, wee hours of the early morning) often reacting with full-on annoyance because as soon as she'd started to fall asleep I'd think, this is it—I can finally get some rest, only for her to wake up a few minutes later. I'd snap, "Seriously? All you do is eat!" at my tiny baby, which would automatically trigger intense guilt over what felt like such an uncontrolled emotional response.

"It gets better" and "sleep when the baby sleeps" are two sentiments I hope never to hear again in my life because—does it get better? Well, yes it does. Children don't usually turn into adults who only sleep for 90 minutes at a time. And sleeping when the baby sleeps sounds good in theory but it's impractical. Plus, neither statement helps at 3 a.m., TBH.

I went to extreme measures to quell my anxiety. I sent my husband to Walmart in the middle of a tropical depression to buy a rock 'n play. Then I sent him back when he returned with the version that didn't vibrate. I put a $300 Owlet monitor on a credit card. I used Amazon one-day shipping to obtain a copy of Dr. Harvey Karp's The Happiest Baby on the Block.

I eventually found there's no magic solution to aid in this season of parenting. It helps to find a community of women going through the same struggles. Prioritizing self-care and spending time connecting with your significant other are also healthy ways of dealing.

But I'm going to level with you—for the first three months of my baby's life, I didn't have time to seek out a support group, wash my hair or converse about one meaningful thing with my spouse.

I was in survival mode and the only thing that helped me was time passing and binge watching Downton Abbey.

And walks around the block. And coffee.

If you loved the newborn stage and came through it with fond memories—I applaud you.

If you gave it all you had and emerged on the other side with a baby who (mainly) sleeps through the night and is somewhat happy, most of the time—you deserve a standing ovation.

You managed to prevail in a time that required intense mental and physical stamina, and you nailed it. Great job, mama.

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