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My son is already becoming my caretaker—and it’s both heartbreaking and inspiring

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I once admitted to a physical therapist that when my pain was really bad, I didn’t do my stretches. I just couldn’t make myself get down on the floor and stretch, because when the pain was intense, I knew I would have a hard time getting back up off the floor.


“Just as long as you do something. Don’t give into it completely and stay in bed all day,” he said.

“I have a young son at home. It’s not even an option,” I told him.

I was lucky. The process of becoming a parent was easy for me. I got pregnant soon after we started trying. I felt healthy and strong, never hindered by morning sickness. I didn’t alter my activities at all, and in fact, continued to teach my fourth grade class until two days before my son was born. We got to the hospital at about 3:30 p.m., and at 9:48 p.m., our son, Ryan, made his entrance into this world.

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My body was a wonder. A literal powerhouse that had successfully sheltered and grown a new life. My body had done everything it was supposed to do. But that was then.

Now, this same body is betraying me and attacking itself. When my son was 3 years old, I was diagnosed with an autoimmune disease called Undifferentiated Connective Tissue Disease.

Now I deal with daily pain and fatigue in my legs. There is no cure. There are only medications to try and manage the symptoms.

Like most autoimmune diseases, mine is unpredictable. Pain one day doesn’t necessarily translate into pain the next day. Likewise, a day that starts off well can change in a moment. I never really know when it will feel as if a vice is squeezing my left leg, or when it will feel as if an elephant has sat down on my legs or when it will feel as if I am being slowed down by invisible shackles that are wrapped around my legs. I just know that, at some point, it will happen.

But this also means that my greatest blessing, my 9-year-old son, is also my biggest complication. I don’t rest like I should in my attempt to be an actively engaged mother. Almost daily, we play together outside—handball, hide-and-seek and two-player versions of kickball and basketball. I sit on our living room floor to help my son with large puzzles. We go on “dates” to the Natural History Museum, the Aquarium of the Pacific the Los Angeles County Museum of Art.

I do these things even though I hurt. Even though these activities intensify my pain. I do these things while I can, because no one really knows the course this disease will take over time.

The other day at the playground, I watched my son run over to the swings and climb on. I sat on a bench and watched as he pumped his legs back and forth, getting higher and higher. When he tired, I watched his legs stop pumping, I watched his swinging slow down, I watched him stretch his legs out and jump off. All without any help from me.

He moved onto the jungle gym, but I continued staring at the swings. I looked back and forth between the baby swing and the swing my son had just used. And it was those swings that really brought home for me the ways in which my support of Ryan has changed. Ryan used to swing on those same baby swings, gently being pushed back and forth. He got older, and loved to go higher, to be pushed “to the moon,” but still within the confines and relative security of that baby swing. When he got too big for those swings, we transitioned to the “big kid” swings, but even then he still needed me to lift him up and sit him down, to push him, to teach him how to pump his legs so he could soar higher.

Now, I support my son in different ways. I support his personality, his likes, his curiosities. I sit and watch YouTube videos of Blake Griffin’s top 10 dunks because my son likes basketball, especially the Los Angeles Clippers. My son and I read books about sharks because he’s interested in these creatures that lived during the time of dinosaurs.

I do these things not because I necessarily want to, but because he does. And I support him.

I know that my son’s increasing independence is a good thing; it’s age-appropriate. But, what does it mean that at the same time, I’m increasingly becoming dependent on him and his support of me?

The older Ryan gets, the more he understands that I have physical limitations. He knows that my legs are often hurting, that my legs aren’t as strong as they used to be and that there are certain things I cannot do—like take the 15-minute walk to the nearby basketball court.

Each week, my son and I go grocery shopping. He doesn’t fit in the top spot of the cart anymore. Now, he’s often pushing the cart for me. Putting the avocados in the plastic bag. Reaching for the can of soup that is on a bottom shelf. He might not know it, but he’s supporting me as I once supported him. He’s doing things for me, making things easier for me.

No matter how I feel, no matter what I can or cannot do, I will always be Ryan’s mother. That doesn’t change. The way I mother, the activities in which I participate, may change though.

And I have to give myself permission to know that it’s okay. Taking care of myself is sometimes in conflict with taking care of my son. Like most mothers, I put my child first. And so I push, do too much and play when I should rest.

Because I want to. Because I feel I should be able to. Because I feel my son deserves it.

And he does. But he also deserves a mother who doesn’t push herself to tears. A mother who knows that there are many ways to show her son her love. By letting my son see my vulnerability and weakness, I’m hoping that he’s learning life skills involving patience and understanding. I’m hoping that my son will grow up truly understanding that things are not always what they appear to be on the outside. Just because I may look OK on the outside, doesn’t mean I’m feeling OK on the inside.

It’s somewhat funny how watching my son play at the playground can really bring home certain lessons for me. For instance, I’m recognizing that a seesaw doesn’t need to operate in the same way that the scales of justice do. With a seesaw, both sides don’t need to be equal. In fact, when they are, the seesaw isn’t really as much fun. To truly experience a seesaw, one side does get higher than the other, but this allows both parties to participate. You need both people to make the seesaw work.

Earlier in my son’s life, our seesaw was tipped. I was supporting him. Our seesaw is now moving a lot more now; some days he may be supporting me more than others. But all days, we’re riding it together, making it work together, supporting each other so we don’t fall off.

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As a mid-Spring holiday, we never knew exactly what to expect from the weather on Easter when I was growing up in Michigan: Would we get to wear our new Sunday dresses without coats? Or would we be hunting for eggs while wearing snowsuits?

Although what the temperature had in store was really anyone's guess, there were a few special traditions my sister and I could always depend on—and it won't come as a surprise to anyone who knows me that my favorite memories revolved around food. After all, experts say memories are strongest when they tie senses together, which certainly seems to be true when it comes to holiday meals that involve the sounds of laughter and the taste of amazing food.

Now that I'm a parent, I'm experiencing Easter anew as my children discover the small delights of chocolate, pre-church brunch and a multi-generational dinner. While I still look forward to the treats and feasting, I'm realizing now that the sweetest thing of all is how these traditions bring our family together around one table.

For us, the build-up to Easter eats is an extended event. Last year's prep work began weeks in advance when my 3-year-old and I sat down to plan the brunch menu, which involved the interesting suggestion of "green eggs and ham." When the big morning rolled around, his eyes grew to the size of Easter eggs out of pure joy when the dish was placed on the table.

This year, rather than letting the day come and go in a flash, we are creating traditions that span weeks and allow even the littlest members of the family to feel involved.

Still, as much as I love enlisting my children's help, I also relish the opportunity to create some magic of my own with their Easter baskets—even if the Easter Bunny gets the credit. This year, I'm excited to really personalize the baskets by getting an "adoptable" plush unicorn for my daughter and the Kinder Chocolate Mini Eggs that my son hasn't stopped talking about since seeing at the store. (You can bet this mama is stocking up on some for herself, too.)

At the same time, Easter as a parent has opened my eyes to how much effort can be required...

There is the selection of the right Easter outfits for picture-perfect moments.

There is the styling of custom Easter baskets.

There is the filling of plastic eggs and strategic placement of them throughout the yard.

But when the cameras are put away and we all join together around the table for the family dinner at the end of the day, I can finally take a deep breath and really enjoy—especially with the knowledge that doing the dishes is my husband's job.

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


Our Partners

Last month Katy Perry and Orlando Bloom announced some big news: The engaged pair are expecting a baby!

Perry announced her pregnancy when the music video for her single, "Never Worn White" showed her rocking a bump and this weekend she announced she's expecting a girl...by posting a photo of Bloom's face covered in pink frosting.

She geotagged the photo "Girls Run the World" and captioned it "💕 It's a girl 💕."

Clearly, this man is thrilled about becoming a #girldad.

Perry is due in the summer, as she previously noted on Instagram.

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"Let's just say it's gonna be a jam packed summer..." she captioned her original pregnancy announcement.

"OMG, so glad I don't have to suck it in anymore," Perry tweeted after the big news went public.

"I am excited. We're excited and happy and it's probably the longest secret I've ever had to keep," Perry explained in a live stream with fans.

Of course not long after Perry announced her pregnancy the world changed due to the coronavirus pandemic. Because of the pandemic, Perry and Bloom have postponed their wedding, according to People and are pretty much just laying low at home trying to enjoy Perry's pregnancy as much as possible during this difficult time.

Perry recently told Stellar Magazine that the wedding is about more than throwing a big bash, so while it would be totally normal to be disappointed by having to postpone it, the mom-to-be seems to be in a good place regarding her nuptials.

She told Stellar: "It's not about the party. It's about the coming together of people who will hold us accountable when things get really hard. Those are just the facts when you're with someone who challenges you to be your best self."

The little girl Bloom and Perry are expecting will have a lot of people to love on her. While this is the first child for Perry, Bloom is already a dad to a 9-year-old boy who will soon be a big brother.

Congratulations to Perry + Bloom!

News

On Friday President Trump announced that the Centers for Disease Control is now advising people to wear a cloth mask if they need to go out in public. It's not a rule, he says, but a recommendation.

"It's really going to be a voluntary thing," President Trump told reporters. "I'm not choosing to do it."

First Lady Melania Trump is urging others to do it, tweeting, "As the weekend approaches I ask that everyone take social distancing & wearing a mask/face covering seriously. #COVID19 is a virus that can spread to anyone—we can stop this together."

What the CDC says about cloth face masks:

The CDC says it's recommending cloth face masks because recent studies show that people can have COVID-19 while asymptomatic, meaning they feel fine and because they don't know they are sick they might still be going about their daily routine in their community.

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Basically, masks don't protect the wearer as much as they protect people from the wearer (who might not know they are sick) by blocking respiratory droplets

"So it's not going to protect you, but it is going to protect your neighbor," Dr. Daniel Griffin at Columbia University, an expert on infectious diseases, tells NPR.

CDC experts are "advising the use of simple cloth face coverings to slow the spread of the virus and help people who may have the virus and do not know it from transmitting it to others. Cloth face coverings fashioned from household items or made at home from common materials at low cost can be used as an additional, voluntary public health measure."

They say if you're going somewhere where it's hard to maintain the proper social distance of six feet, like a grocery store or a pharmacy, then it's a good idea to wear a simple cloth mask.

"The cloth face coverings recommended are not surgical masks or N-95 respirators. Those are critical supplies that must continue to be reserved for healthcare workers and other medical first responders, as recommended by current CDC guidance," the CDC states.

"You may need to improvise a cloth face covering using a scarf or bandana," the agency notes on its website.

A DIY cloth mask is an extra layer of protection:

The CDC still says that staying home and practicing good hand hygiene is the best protection against COVID-19, but a cloth mask would be an extra layer of protection if you must go out to get food or unavoidable medical care.

According to Dr. Scott Segal, chair of anesthesiology at Wake Forest Baptist Health in Winston-Salem, North Carolina, certain types of fabric are better than others when it comes to making a mask. While he CDC says improvised bandanas or scarfs are better than nothing, Segal says DIY mask makers should aim a little higher for the masks to be effective.

"You have to use relatively high-quality cloth," Dr.Segal, who is researching this topic, tells NBC News.

According to Segal you don't want to use a knit fabric (like an old T-shirt) but rather a woven fabric. He suggests a double layer of heavyweight cotton with a thread count of at least 180 (like quilters cotton). If you don't have a cotton with that high of a thread count, line it with flannel.

For more tips on how to sew a fabric face mask, check out these instructions from Kaiser Permanente.

No-sew methods:

If you're not a sewer you can still fashion a mask, and there are plenty of no-sew tutorials online showing you how. Use heavyweight woven fabric like Segal suggests and make one of these without a sewing machine.

How To Make a Pleated Face Mask // Washable, Reusable, No-Sewing Required youtu.be

Should kids wear masks? Talk to your doctor.

The CDC is not recommending masks if you're just going for a walk around the block or playing in the backyard (which is the extent of most kids' outings these days). The masks are more for grocery runs, which many parents are opting to do alone these days.

But solo parents and those with partners who are in the military know that leaving the kids behind isn't always an option if you're the only adult in the home. If that's your circumstance, choose delivery options when possible to avoid taking your children to public places like grocery stores and pharmacies (the kinds of places the CDC recommends masks for).

If you are concerned that you may need to take your child somewhere where a mask would be required, call your pediatrician for advice on whether a mask is appropriate for your child's age and circumstances. Babies' faces should not be covered.

If you have no one to watch your children while you get groceries and cannot get them delivered try contacting your local government, community groups and churches for leads on grocery delivery help. They may be able to put you in touch with someone who can fetch groceries for you so that you don't have to take your children to the store with you.

News

Lizzie climbed up the playground stairs on all fours, walked across the small suspension bridge and slid down the big red slide at our neighborhood park. I followed just inches behind my 4-year-old daughter ready to catch her.

I had become her shadow by necessity. Her actions were often unpredictable and sometimes dangerous so my arms became her safety net. Her big brown eyes and unruly curly brown hair encapsulated her carefree spirit, and I adored her with a love I never thought myself capable of.

She walked over to the swings and stood there, stiff, her eyes glazed over. She didn't look to me for help. She didn't point, raise her arms up or ask me to place her in the swing. But I knew what she wanted—I sensed it.

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"Do you want to swing, Lizzie?" I asked in a gentle voice. She remained silent.

I didn't expect an answer, but I always asked in hopes today was the day she would choose to use her voice to form a word for the sake of communicating with me. I placed her in the swing anyway and pushed her to the exact height I knew she preferred.

A look of contentment came across her face and a giant smile curled her lips. She was in her happy place. This place was a place I wasn't allowed in—not yet anyway. She lived in an alternative universe inside her head, and after the park, we would spend the rest of the day inside using therapy techniques to pull her from this place into the real world. I missed my daughter and the connection we once had.

There were so many quirks I thought were hers alone, when in fact they were symptoms of autism spectrum disorder.

Here are five possible signs of autism parents should know about. If you notice something that concerns you, please reach out to your pediatrician.

1. Change in language

As a baby, Lizzie's language gradually changed from babbling to gibberish. "With typically developing language skills, infants will babble often as early as two to three months indicating first instances of intentional and social communication," says licensed clinical speech language pathologist Julie Liberman. "An early sign of autism may be seen in infants creating nonsense syllables without added social-communicative behaviors."

Lizzie lost her social-communicative sounds and began to mimic noises from her environment such as screeching sounds or sirens. She also developed a few sounds such as "diddle diddle" that she would repeat all day long. The transition was subtle and slow—enough that at first I didn't recognize that it was happening. .

2. Sensory processing issues

"Sensory processing is how our brain and body organize and respond to sensory information. Issues develop when we are over or under-responsive to sensory information which impacts the body's ability to organize it, or modulate it and so responses range outside of typical parameters and dysregulation is observed," writes licensed occupational therapist Rachel Wolverton.

Lizzie walked on her tiptoes, flapped her arms when she was excited and ran full speed into the couch cushions over and over again. Many toddlers do similar behaviors, and we thought she was just being quirky and adorable. As part of her diagnosis, though, we came to understand that these repeated behaviors were signals that her processing was under-stimulated. She needed these movements to help her body and brain function. This also works the opposite way, too. Many kids are over-sensitive to lights, sounds and/or touch, so they become easily overstimulated. They might cover their ears, melt down when clothes are put on their bodies or withdraw from crowds.

3. Lack of response to name

Lizzie displayed what I call "selective hearing." I would stand in front of her, saying her name with a raised voice and she wouldn't respond or look up. She appeared to be deaf, but as soon as the theme song from her favorite Dora the Explorer TV show came on, she would run from the other room to watch.

As autistic teen advocate Matteo Musso explains, "Because we hear your voice so much, we don't usually respond to our name. It's that you say our name the same way all the time. A TV is more auditorily complex. One-word, same voice, can get lost in our thoughts and in our brain."

4. Repetitive behavior

My daughter began lining up her toys by color and her green peas at the dinner table. We thought she was brilliant! She is brilliant, but as it turns out, not because of her repetitive behavior.

While many children love repetition—as any parent who's got their child's favorite bedtime story memorized knows—what I learned is that the kind of repetitive behavior we saw in Lizzie is one of the core symptoms of autism.

"Individuals with autism typically find much comfort in repetitive behaviors, giving them a sense of control over their environment in a quite unruly world," says Dr. Caroline W. Ford, clinical psychologist and director of the Fairhill School and Diagnostic Assessment Center in Dallas. As she explains, autistic children experience real difficulty when their repetitive behaviors are interrupted: "When asked to change or alter the repetitive behavior, many autistic children become overly anxious."

5. Loss of connection

One of the most beautiful moments between mother and child is the first time her baby looks into her mom's eyes. It was in that moment with Lizzie, the connection formed was so strong I knew I would be willing to do anything for her.

Slowly over the course of months, she became more and more distant. She wandered around the house aimlessly and didn't seem to need me at all. As long as there was food and drink available, she was content to be all alone. It was hard to measure because it was a feeling, a distancing, a loss of connection. I second-guessed my feelings regularly. Mothers have a built-in intuition with their children, which should never be underestimated.

After my daughter's diagnosis with autism at the age of two, we researched and implemented a 30-hours-a-week home therapy program (although it's important to know that early intervention supports can also be found through community organizations and school systems—you don't have to do this alone). Now, I'm happy to say, Lizzie has made good progress, and I've found (and offered) support in the generous community of parents of autistic children like mine. I even started a non-profit, United in Autism, which partners with local charities to bring community-building, emotional-support events to special needs moms all over the country.

My daughter continues to be a source of joy and amazement. Most importantly, I know now that my daughter and I are not alone—and we never were.

Learn + Play

Starting this weekend Target and Walmart will be limiting the number of people allowed in its stores to give shoppers and staff more space to spread out and adhere to social distancing recommendations during the coronavirus pandemic.

"Beginning April 4, Target will actively monitor and, when needed, limit the total number of people inside based on the store's specific square footage," Target notes in a news release.

Walmart's corporate message is similar: "Starting Saturday, we will limit the number of customers who can be in a store at once. Stores will now allow no more than five customers for each 1,000 square feet at a given time, roughly 20 percent of a store's capacity."

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At Target you will also notice staff wearing gloves and masks over the next two weeks as the company steps up its coronavirus protection measures.

Many people are choosing to stay home and order groceries online, but that's not an option for everyone as long lines at some Target's prove.

"We're incredibly proud of the commitment our more than 350,000 frontline team members have demonstrated to ensure millions of guests can count on Target, and we'll continue to focus our efforts on supporting them," says Target's Executive Vice President and Chief Operating Officer, John Mulligan.

Target is open this weekend but—along with Costco, Aldi, Publix and Trader Joe's—Target stores will be closed on Easter Sunday to give the essential employees in these stores a much-deserved break.

News
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