ML Interest Tag: disability

A Letter to My Son Whose Sister Has Special Needs

By Kim Mcisaac

My Dear Son,

Being an older brother to a sibling with severe autism has not always been easy. It’s a job you never asked for but one you took in stride. At times, it was very difficult, and that is putting mildly. Thank you for loving your little sister wholeheartedly. You were her light in the darkest of times, especially when her life was filled with sensory overload, and nothing made sense to her little body, and she was completely overwhelmed by our world. And when she would lash out and hurt you, and I would have to send you out of the room—you never got mad at her and always adored her.

Thank you for letting her follow you around and always being there to hug her and tickle her, doing whatever made her happy. Thank you for getting down on the floor with her and playing her way, for connecting with her in any way you could.

Thank you for being a loyal big brother and always protecting her when others had no understanding of autism, for loving her and trying to reach her even when she seemed unreachable, for never giving up, and for understanding that her brain worked differently and that it wasn’t her fault.

How could you understand this at 5 years old? You never stayed mad or blamed her.

Thank for being the happiest, easiest-going little boy, especially when my heart was breaking in to pieces trying to come to grips with a life-altering diagnosis. Thank you for understanding that we couldn’t go to playdates because her behavior was so unpredictable. Thank you for never taking out your frustration on her when I know you were disappointed, and for understanding how much extra care and supervision she needed and never complaining.

Thank you for going along with me when I needed that family photo, you know, the ones where you had to smile for fifteen minutes while I chased her and all but wrestled her down. Thank you for holding her tight so I could get that picture while she tried to push you away, kick or roll over you—you took it all in stride. You couldn’t have known how much it meant to me to get that picture. I just wanted a picture of my two beautiful children. I needed some kind of normalcy even though our life was anything but.

There are a thousand examples of how things went awry, things you lost out on, had to give up, had to leave in the middle of—and yes, it was disappointing at times. But your love for her, your connection, never wavered.

I tried my hardest to make it up to you. I tried to spend alone time with you, have others take you out so you could get a break, bring you places, spoil you. You had every video game and Pokémon card that could be bought. Your nana, your grandparents, and aunties saw it, too, and they tried to make it up to you, too.

But how can you make up for a lost childhood, for having to grow up too fast? You can’t. And I’ve felt torn in two at times. My love for both of you so strong, but her needs surpass yours, and there was nothing I could do to change that.

And then came your sisters: two girls, two years apart. A whirlwind you could say, and again you stepped up. Thank you for all the bottle holding, and baby loving, and dealing with all the madness that went along with it. And then things got better a little easier, and you got to be a different kind of big brother.

I’ve read about siblings of Special Needs children; they are sometimes referred to as “glass children.” It means that parents are so consumed with the special needs child that they look right through you and don’t even see you, as if you are a piece of glass.

I immediately asked myself, “Did I do that!? Did you feel invisible like you didn’t matter?” I have handled a lot but I don’t think I can handle this—my mama guilt is coming on full force, I already carry so much.

So I came to you and asked you. Looking you right in the eye, as I tried to hide the fact that my heart was shattering again even considering this. I asked you to be honest; I needed to know. And you told me that you felt like you missed out on opportunities that you could have had. If it wasn’t for having a sister with special needs, that your life would have been different. But you went on to say that it’s ok, and it’s not her fault and it’s not my fault, it’s just what is.

I cry as I type this because it feels like an impossible job to be pulled into all different directions for all these years and feeling that I didn’t get it right. There is no easy answer. But today it doesn’t matter to you, today you just love her for who she is just like always. Today you make time to hug her to make her laugh.

I know you don’t need thanks or even expect it but you sure deserve it. I am sorry that I couldn’t always be the mother I wanted to be for you, that I was pulled into the uncharted waters of having a child with a disability, and some days I could barely keep my head above water.

But you need to know that I thank you for being my life raft even though that was not supposed to be your job. I know this has made you stronger and more compassionate, you are a better person for loving her, for having her in your life.

Thank you for being the best big brother she could ever have.

Love,

Mom

Kim McIsaac , is a blogger at autism adventures with Alyssa . She resides in Massachusetts with her husband and four children .  She advocates and passionate about spreading autism awareness and educating and inspiring others . She likes to write , spend time with her  family and loves the beach . 

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I Have a Child with Special Needs But Sometimes, His Siblings Need Me More

By Jeniece Dortch

Confession: I am not an expert on all things parenting—yet I am proud in my imperfections. My world forever changed in 2005 when, at the age of 18, I gave birth of my firstborn son. Fast-forward to now and I’m currently raising five incredible children, the eldest having autism and epilepsy. On this journey, I have learned that although my intentions were pure, my actions were at times flawed.  

Parenting does not come with a playbook. No matter how many books you read, videos you watch and advice you receive, there will still be an underlying edge of uncertainty. Add multiple children. Add a disability. Add the second guessing: am I doing this right? How can I do this better? Are my children okay?

Experience is a very thorough teacher if you sit back at listen. For 10 years, it was just my older three children. Then 2015, I was expecting again, but this time I was carrying twins. The feelings of betrayal, guilt and doubt overwhelmed me. Can I do this?

I already spent three days a week in a waiting room: speech therapy, occupational therapy, neurology appointment, the list goes one—but I was not alone in these appointments. That’s when it hit me. 

Every appointment, his siblings accompanied him. Many of the seizures he experienced, his siblings were by his side. The feelings of helplessness and hopelessness were not just mine to bear. This journey was not just mine and his. His siblings shared in the pressures—the only difference is that they were still children, too.

I spent a great deal of time trying to “protect” my children from their brother’s disability. I thought I was doing them a favor by “taking care” of everything myself. Little did I know that I created a barrier between them and their brother fueling feelings of favoritism, isolation and resentment. These feelings were unknown to me but weighed heavily on them and began to surface in different ways.

I needed to change the way I parented my children, but that could not begin until I addressed the failures of the past.  I was pregnant, hormonal, guilty and hurting. I was trying to reach my younger children but scared to admit I was wrong. 

How do I tell these innocent super siblings that mommy noticed their pain? How does a parent press restart on the parenting journey? These are the three steps I took to bridge the gap in our family.

Apologies are healing.

As parents we feel the constant pressure of perfection. We fear being viewed as fallible to our children and our families. That must stop. I sat my children down one evening after their older brother went to sleep.

I looked them in the eyes and with a heavy heart said, “I am sorry. I know I spend a lot of time with your brother, but I want to hear from you. How do you feel?”

They responded with eyes looking at the floor, “Fine. I am okay, mom, I know he needs you.”

Insert a dagger in my heart.

My children were still considering their brother and his disability—his feelings—before their own.

I asked them to look me in my eye and said, “You need me. I am sorry if you do not feel I know you need me too.”

Tears formed in the eyes of these precious young souls.

“I miss you, mommy.”

We all cried a great deal that night. No, it was not the answer to every problem, but it was the beginning to a new wave. I spent that evening giving them permission to feel.

Feelings are important.

By opening the door to communication, I gave my children the freedom to feel. They knew that that there was no wrong way to feel regarding their brother. Yes, the time spent would never be equal, but the love from mom was the same. I was on their team regardless of how hard it was. 

They told me how isolated they felt. The expressed the burden they carried in weight of being the younger sibling but knowing they were on a higher level cognitively than their older brother. This was huge.

Education is empowering.

I opened the conversation to questions. I did not know what to expect, but their questions came back-to-back:

“What is autism? What is epilepsy? Why does he flap his arms? Will he die having a seizure?” 

The items I thought I was protecting them from were the same items they were trying to internalize. They had a million questions and I sat and answered every one the best way I could, ending our talk with, “If mommy does not know the answer, mommy will find the answer.”

Children in special needs family experience things that their peers never encounter. They mature faster because of the things they go though. If parents fail to connect and educate the siblings on the disability, they feel lost and unprepared. 

“What do we do when there is a seizure?”

They watched me all these years, but I never communicated the process. I never took the time to address their concerns and prepare them for the possibilities. Fail. We do not know something until we know something. 

Now, when someone questions why their brother is flapping his arms, they are equipped to respond: “My brother is stimming. Do you know what stimming is? Let me teach you.”

Looking back, I realized all the ways I could have parented them better, but I did not have time to wallow in guiltiness. My oldest child was not the only one with special needs. The siblings had special needs of their own. They required active attention. They needed me to put them on the family calendar. 

All the time I spent ensuring their older brother was okay, I missed that the siblings were not okay. I falsely assumed I was protecting them. I made a change to communicate even when it was uncomfortable.

Parenting is not a one size fits all. All children are different and if we desire to raise secure and strong adults, we must start with ourselves. Acknowledge that while our intentions are good at times our follow though is faulty. 

There is power in an apology. I learn daily, yet I make it a priority to address the concerns the siblings face. I am a stronger and wiser parent now. My children know that they matter and that our certainty is that they know they are not on this lifelong journey alone.

Jeniece is a fearless special needs mother of five fabulous children: Christian, Caleb, Jada, Rose and Raymond—all of whom rock her world and shake up her soul! She is the founder of Special Needs Siblings, a non-profit organization committed to supporting the siblings of disabled individuals.

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6 Ways to Encourage Inclusivity in Your Family

By Jennifer Landis

Photo: Erin Song via Unsplash

Inclusivity can mean a number of different things. Usually, it refers to including and considering those who are often excluded or marginalized—this can involve sexuality, gender, race, religion, ethnicity, and varying levels of ability. Ensuring inclusive environments makes the world a better place for everyone on a personal, intellectual and even professional level by ensuring that everyone feels welcome. Often, inclusivity is discussed in workplaces, schools, organizations and other public spaces, but it’s also important to teach inclusivity within your family and your household.

Being a good citizen in the world begins with the lessons you learn at home, and while your home is a more comfortable and relaxed place—perhaps with a more homogeneous mix of people than the world at large—it’s still important to teach inclusivity in your family so you can fully embrace the differences within your own household and in your community at large.

You never know where your inclusivity could really make a difference—from your child who could be exploring their identity knowing that they’ll come out to an accepting and loving support system, to guests in your home, to the people you encounter every day in the world. People come from all different backgrounds and experiences, and while you don’t have to know all the answers, making an effort to inform and educate yourself and your family can go a long way. If you’re looking to encourage more inclusivity in your household, here are a few ways to do it.

1. Surround Your Family with Diverse People

While the idea of being “colorblind” or “not noticing disability” might be nice at first, it can actually do more harm than good. People are different, and that’s beautiful. Making an effort to engage in activities and participate in inclusive spaces can expose your family to all different experiences. Looking for schools, activities, and social circles with people of different backgrounds and experiences can normalize variation and diversity for your kids, and even for you.

2. Encourage Empathy

One of the key points of inclusivity is thinking and acting with empathy. While diversity is about the presence of people of different backgrounds and experiences, inclusivity involves making the effort to understand their experiences, and empathy is an integral part of that action. While it’s impossible to understand the exact feelings associated with someone else’s experiences, even encouraging your kids or family to think from the perspective of others can be a great exercise in empathizing with someone of different backgrounds from your own.

3. Allow for Questions

Inclusivity isn’t just about normalization and diversity, either. It’s also about understanding and treating people like human beings who deserve respect. As long as questions are posed in a respectful manner and you’re prepared to listen, there’s absolutely nothing wrong with them. Asking someone what their experience is like adjusting to life in a wheelchair, celebrating different holidays or growing up in another country isn’t rude.

While there is a boundary between asking questions to understand someone’s experience and expecting someone to take on the emotional labor of educating you, the key is often honesty and respect. If your kids have questions you know the answer to, you can always educate them, too.

4. Model Good Behavior

You can’t expect your family to walk the walk if all you do is talk the talk. One of the best ways to teach inclusivity and encourage it in your household is to live a more inclusive lifest‌yle yourself. Support organizations, policies, and even politics that encourage inclusivity throughout the world. Spend time with people of various backgrounds and experiences and let your kids and family see. Sometimes, the best way to encourage inclusivity is simply by living it.

5. Prioritize Representation in Media & Books

Another avenue in which diversity and inclusivity is highly important is the media your family consumes. The kinds of people we see represented in films, shows, and books often shape our opinions and experiences within the world, and it’s important to use them as tools towards being more informed people. Try to read more inclusive literature and consume media that features all kinds of people. You may learn a lot from it.

6. Go the Extra Mile to Make Accommodations

Inclusivity is often about making the accommodations people need in order to make them feel welcome and comfortable. Many systems are set up specifically to cater to those in more privileged positions without regard to the needs of others, and advocating for more inclusivity often involves advocating for the accommodations necessary for people of different experiences and ability levels.

If your child has a friend or classmate who has a different diet because of religious reasons, needs physical accommodations, or has any other requirements, advocating on their behalf in public spaces and making sure they’re comfortable in your home can be really meaningful. It can make their experience better and model that behavior for your family, too.

In order to create a more inclusive world, change needs to start at home. By encouraging inclusivity in your household, you’re encouraging inclusivity on a wider scale, too. Raising respectful, knowledgeable, and empathetic members of society begins with you, and by encouraging inclusivity at home, you’re doing your part in creating a better world for everyone.

Jennifer Landis is a mom, wife, freelance writer, and blogger. She enjoys long naps on the couch, sneaking spoonfuls of peanut butter when her kid's not looking, and binge watching Doctor Who while her kid's asleep.  She really does like her kid, though, she promises. Find her on Twitter @JenniferELandis.

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11 Great Toys That Celebrate Disabilities

by Jamie Davis Smith

It’s no secret that children learn best through play and learning about disabilities is no exception. Fortunately, toy companies from American Girl to LEGO have diversified their lines to be inclusive so that every child can have a playroom that includes toys that are diverse as the children they will meet at the playground. Read on to find out about everything from dolls with Down Syndrome to a play diabetes kit to superheroes you may not have realized were disabled.

A Fully Accessible Schoolhouse

Playmobil

Playmobil knows that all kids should have the chance to go to a school where they can get around easily. This schoolhouse has everything from a working bell to a biology lab. Best of all, this set comes with a student who uses a wheelchair. Thanks to the school's ramp, elevator and accessible bathroom all students at this school can get to all of the classes and have fun with their friends. Kids who use wheelchairs will delight in seeing a school like their own.  Able-bodied kids will gain a better understanding of the challenges faced by their disabled peers just by playing school!

Buy it here, $101.60.

The Incredible Blind Superhero

Hasbro

Daredevil lost his vision as a child but in exchange gained the ability to use his other senses with superhuman accuracy making him "The Man Without Fear." Even though Daredevil cannot see, he is an expert in martial arts and a talented lawyer. Thanks to his powers he can defeat the bad guys on the street and in the courtroom even without sight. Some of the best toys for kids are those that show them that disability does not have to limit anyone’s power. A Daredevil figure with his iconic red glasses makes a great addition to any toybox to remind kids that anyone can become a superhero.    

Buy it here, $19.87.

Fashionista Barbie with a Prosthetic Leg

Mattel

Barbie can do anything from becoming a doctor to flying an airplane. Now Barbie is showing kids that she can do all that and more with a prosthetic leg or while using a wheelchair. These Barbies send a powerful message that a disability doesn’t have to stop a child from doing anything want. Because both dolls are part of the Fashionista line these Barbies also prove you can look cute while doing it! Read more about the line here. 

LEGO Minifigures

Lego

Everyone in LEGO City may be yellow but Lego minifigures come decked out in different clothes and accessories.  Some minifigures get around using their legs and some minifigures use wheelchairs. Some are just cute and some, like Darth Vader, Luke Skywalker also have disabilities.

Buy the set here, $72.96.

Doll with Autism

Lottie

The Loyal Companion Lottie Doll is based on a real child with autism. Just like many autistic kids, this doll likes to wear headphones when the sounds of the world become overwhelming. He also wears a t-shirt with the name of his autistic heroes and has a loyal dog who stays by his side to provide emotional support. Kids who don’t know much about autism can learn more by reading the included pamphlet about the boy who inspired this doll. Kids who are autistic will love playing with a doll who shares their diagnosis. Lottie Dolls also makes other dolls with disabilities, including one with a cochlear implant and the Sinead, a Lottie Doll based on a Little Person who is a writer for British Vogue. These dolls play an important roll in including children of all abilities in play at school and the playground too!

Buy it here, $19.95.

An Inclusive Party Puzzle

Orchard Toys

Sometimes the best way to normalize disability is to present it simply as one of many ways children can differ from one another. Some are boys and some are girls. Some are blonde and some are brunette. Some walk and some use wheelchairs. The Woodland Party Jigsaw puzzle shows happy children engaged in all kinds of activities regardless of ability. At the party depicted in this puzzle, one adventurous child dresses up like a pirate while another dances with a fox.  Among the many children at the party is one who uses a wheelchair happily feeding a deer. It may appear that there is nothing special happening at this inclusive party but that is the beauty of some of the best toys for children—they learn acceptance and tolerance naturally through play.

Buy it here, $27.76.

The First American Girl with a Visible Disability

Mattel

American Girl is a leader when it comes to making sure every child can have a doll that looks like them from dolls without hair to offering wheelchairs and hearing aids as accessories. American Girl’s 2020 Girl of the Year, Joss, is American Girl’s first doll whose disability is part of her story. Joss is hard of hearing and wears a hearing aid.  Her hobbies include surfing and cheer-leading alongside her hearing friends. Joss’s accompanying book explains that while she can do everything her friends can do her disability does pose some challenges, like having to ask her coach to use a microphone. On the other hand, her disability comes with some benefits, such as being able to tune out her annoying brother by removing her hearing aid anytime she wants some peace and quiet. Joss's accessories include items like a Nifty Cheer Backpack Set that anyone who loves cheer-leading would love, which underscores how every child can do with they love if inclusion is supported and valued. 

Order Joss here, $110 & up. 

Disabled Characters from Across the Galaxy

Hasbro

Some of the characters your child already knows and loves may be disabled. Nemo from Finding Nemo has one fin smaller than the other. Luke Skywalker lost one of his hands in an epic light-saber battle and has used a prosthetic hand ever since. Darth Vader is a quadruple amputee who doesn’t wear a noisy black suit just to be intimidating—it’s actually a complex life support system that helps him breathe and keeps him alive. Make sure your child has some of these popular disabled figures in their toybox.  A Darth Vader or Luke Skywalker hyper-real figure that shows all the details and even has removable hands is a great choice. Or, try a plush Nemo that clearly shows the difference in his fins. 

Vermont Teddy Bear Company

Most kids have ten fingers and ten toes. But some kids don't have quite that many and that's okay too!  Some kids are missing either because they were born without a limb or because needed one (or more) amputated. The Vermont Teddy Bear Company has been making bears for those with limb loss or limb differences for decades. These bears are just as soft and cuddly as all of the Vermont Teddy Bear Company's other bears. Choosing a bear from the Amputee Collection is a great way to promote the acceptance and inclusion of those with disabilities, even for very young children.

Shop the collection here, $59.99.

Annie the Doll with Down Syndrome: 

Selma's Dolls

Dolls are such a popular toy because they always allow kids to have a friend along and gives them the chance to act out all kinds of situations. Annie, made by Selma’s Dolls, is a soft, cuddly doll who happens to have Down Syndrome.  Annie comes with a storybook about getting to know kids who are different complete with conversation starters. Whether Annie looks like your child or not she can help make a more inclusive world a reality. 

Buy Annie here, $29.99.

 

American Girl's Wheelchairs, Diabetes Care Kits, Service Dogs & More

American Girl

American Girl has been a leader in representing all kinds of girls for decades. Girls with disabilities are no exception. American Girl dolls can truly look like children with a range of disabilities. Their accessory line includes a wheelchair, a service dog, a diabetes care kit, glasses, hearing aids, arm braces, asthma and allergy set and more. American Girl also has a doll without hair for kids going through chemotherapy or who have alopecia. These accessories aren't just for dolls that belong to children with disabilities. Every child will benefit from having their dolls use the same equipment their peers with disabilities use every day to help them better understand their friends' experiences.  

Shop the collection here.

—Jamie Davis Smith

RELATED STORIES 

23 Toys That Encourage Diversity and Inclusion

The 2020 Barbie Fashionista Line Is One of the Most Diverse Ones Yet

Target’s 2020 Adaptive Halloween Costumes Include a Mermaid & a Knight 

 

Images courtesy retailers

 

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Find Your Village: 13 Facebook Groups for Bay Area Parents

by Kate Loweth

Connecting with other parents online has become more important than ever. Working from home, social distancing and homeschooling can be isolating and overwhelming, so we’ve found over a dozen Facebook groups you can join to reach out and connect with other parents in the Bay Area. Read on to find that support, shared knowledge and camaraderie are just a few clicks away in a local online group for parents.

smiling Black mom with white baby - money-saving tips
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Bay Area Mommy Group
This robust group is for local mothers to mingle and meet, share events, plan fun activities and places to visit with little ones in the beautiful Bay Area.

Main Street Mamas: San Francisco
Over 14k moms are members of this group. The goal for the group is to create and promote a supportive parenting community, on screen and in real life. Members must be residents of San Francisco. 

Main Street Mamas: Peninsula & Silicon Valley
Main Street Mamas is the social and community arm of Sensible Sitters. This arm of the group is for mothers living in San Mateo or Santa Clara counties. There is also a Marin branch of MSM.

Kate Loweth

Outdoor Families of San Francisco Bay Area
This is a community of Northern California families who enjoy being connected to the outdoors as well as other like-minded families. If you enjoy the outdoors (hiking, backpacking, climbing, biking, kayaking, SUP, beach activities, camping, glamping or anything outdoors) and are interested in actively participating in discussions to learn and share, please join. 

{510} Families Group for East Bay Parents
This group is for parents in the {510} area code: Oakland, Berkeley, Alameda, Piedmont, El Cerrito, Albany, Fremont, Hayward and Richmond. It is focused on fun activities and local resources. 

San Francisco Parents of Multiples
The San Francisco Parents of Multiples Club is a non-profit organization formed to offer support to parents and expectant parents of multiples.

dad jokes for kids
iStock

SF Dads Group
Meet other San Francisco Bay Area dads! Stay-at-home dads, working dads, part-time at home dads, work from home dads, freelance dads, and involved fathers in and around the SF Bay Area are invited to socialize and interact with other guys who enjoy spending quality time with their kids.

PAMP Parents Group
PAMP is the super active Palo Alto Menlo Park Parents Group and this Facebook group is for members only. Here you can discuss group meet-ups, community events and more. 

Mommies of Marin (M.O.M)
This group of over 1k members supports mothers who live in Marin County. 

Bay Area Dads
Head to this group if you are a dad in the Bay Area looking to network with and meet other dads. 

iStock

Bay Area Special Needs Parents Group
This group is for parents in the Bay Area who have special need kids. They share local resources, tips, product recommendations and support. 

Autism Families Bay Area 
The purpose of this site is to keep families in the San Francisco Bay Area informed about fun, engaging artistic or recreational events that cater to individuals with special needs, especially those whose disability or behaviors may otherwise make "typical" events difficult or impossible to attend.

Hike it Baby San Jose
Hike it Baby is a non-profit organization dedicated to connecting families to nature with birth to school age children. This group meets up for hikes near San Jose. 

—Kate Loweth

RELATED STORIES

Find Your Crew with These Bay Area Mom Groups

10 Genius Ways to Keep the Kids Busy (Batteries Not Required!)

18 Epic Indoor Forts You’ll Want to Live In

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Why Being the Mother of a Son with Down Syndrome Became a Blessing

By Monica Berg

Shortly after an emergency C-section, I was informed that my newborn son had Down Syndrome.

His diagnosis affected me in many ways. I was shocked. I felt devastated. I was terrified. I felt betrayed by my body, dirty and damaged for not nurturing a healthy child. Feelings of inadequacy, of not being enough, surfaced. For eight months, I gave my body to my child. I did everything right and…it went so wrong. I was ashamed.

And Michael. My heart broke for my husband. He had always wanted a big family, but having one child with Down Syndrome significantly increases the likelihood of birthing another child with Down Syndrome. I felt like the dream of a large family was shattered, and it was completely my fault. Of course, he never thought this. I kept apologizing, saying over and over, “I’m so sorry.” Convinced I was a failure, I sank into my pain, retreating from family and friends.

A few days after he was born, we were given a list of the things Josh would never be able to do and things he would never become. The doctors explained how hard life would be for me and my family. As I listened to them talk about Josh’s limitations, I worried about my own. How would I care for a baby with a disability? What if he’s dependent on me forever? Will he have the capacity to understand or feel? Will he ever be able to speak?  The doctors encouraged us to hope for the best but expect the worst. Hearing what my husband and I heard from the doctors in the days after Josh was born could have broken us down and torn us apart.

At that moment, we had a choice. We could have given into the fear of what raising a child with Down Syndrome would be like. We could have chosen to believe the doctors and, in turn, assigned those limitations to Josh. Instead, I chose to be attuned to the beauty and potential of what he could become and, subsequently, who I would become. I chose to not let others’ expectations of Josh’s limits inform the way I thought or parented. In that moment, I chose Josh. I chose me.

It was a process, and I still had fears. I feared the future. I was terrified of raising a child with a lifetime diagnosis that I knew nothing about. I was even afraid of the judgments of others. Despite my lingering fears, I became more vulnerable, open, and fiercely inquisitive about the future.  I learned to be an advocate for Josh, and because of that, I learned to advocate for myself, powerfully.  I chose to embrace the happy reality of Josh, to enjoy the beauty of his soul and all he could offer the world. He is a person with a path and filled with ability—just like all children.

Despite the dire prognostications of doctors, we decided not to accept other people’s limitations in the form of well-meaning advice, and I became pregnant again. Though fears still arose during my daughter Miriam’s pregnancy, we welcomed a healthy baby girl into the world twelve months later. The dream of a large family was still possible. Because I was so committed to raising Josh without limitations, I taught all three of my children (Abigail, my fourth hadn’t come along yet) to refrain from labeling anyone. When my oldest, David, and daughter Miriam started to notice differences in Josh, and his differing ability to do things, I explained that everyone is different.

Everyone has strengths and weaknesses. For instance, Josh is great at basketball; he’s even better than some children older than he is. While he is an ace on the basketball court, he’s not quite as masterful in other areas that may even seem quite simple. It was years before any of my children learned the words Down Syndrome because I didn’t want it to change the way they interacted. I didn’t want that label limiting Josh’s potential. That choice allowed Josh to interact with his siblings and other children in a natural, organic manner. That inclusivity nurtured his potential and pushed him beyond the inherent physical challenges of Down Syndrome.

Because of Josh, I learned to love with a vulnerability I never knew existed in me. My marriage evolved into something stronger, more tender, more intimate. I grew less fearful, stronger, and learned to welcome change, even when it showed up in ways that made me uncomfortable. I learned to focus on ability instead of labeling anything a disability.

As for Josh? We could have chosen to believe what the doctors told us, and expected less from him. Instead, we chose to be attuned to the beauty and potential of who he could become. Today, Josh doesn’t look in the mirror and see limitations. He isn’t defined by a diagnosis. He is strong, self-motivated, healthy, and happy. Josh sees me and my oldest, David, working out all the time. Like us, he loves to exercise. Josh is remarkably fit, coordinated, and plans to become a personal trainer. Josh is a living example of never accepting anyone else’s opinion or beliefs about your inherent potential.

I may have learned about Josh’s potential limitations on the day he was born, but I have a lifetime to discover his gifts.

Monica Berg is an international speaker, spiritual thought leader, and the author of  Rethink Love and Fear Is Not an Option. She also serves as Chief Communications Officer for Kabbalah Centre International. She lives in New York with her husband Michael and their children David, Joshua, Miriam, and Abigail.

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Parents, We Need to Talk about White Privilege

By Jen Lumanlan

Editor’s note: Our Spoke contributor, Jen Lumanlan at Your Parenting Mojo, wrote this piece in March of 2019 but we are republishing it as its a timely and relevant discussion to have right now. 

Photo: monkeybusinessimages/iStock

 

My four-year-old daughter and I read a book about Dr. Martin Luther King Jr., recently, which told the typical story about social segregation (a cursory skim of lunch counters, water fountains, schools, followed by “I have a dream…”). But like most children’s books on this topic it left much unsaid.

When young children learn about Dr. King they are usually left with the impression that because social segregation is now illegal, structural racism no longer exists. So after we finished ours we talked about less visible but far more pernicious political and social segregation and how these continue today.

My daughter said she thought we should try to help black people through a donation of some of her pocket money portioned off for “Giving,” so I augmented her $4 with a larger sum of my own and shipped the total off to Black Lives Matter.

We’ve done our part, right?

Realizing I have white privilege in parenting

If you had asked me a year ago if I (a white mother of a biracial but white-presenting daughter) had white privilege in my parenting I would have said “Um, I don’t think so. What is that, anyway?”

The first inkling that I got of white privilege in parenting came from listening to a podcast in which the black host said that a lot of black parents—and particularly parents of black boys—would not feel safe allowing their child to have a tantrum in a public place.

I felt like a massive window had opened through which an incredibly bright light shone. The light prevented me from seeing anything else—yet—but I knew there was more to be discovered.

Of course my daughter has had tantrums in a public place. Of course I felt judged—like the passers-by were thinking that I should be able to control my child—but at no time did I ever feel like she nor I were unsafe: and nor did the thought that we might be unsafe ever even occur to me.

This, I learned, was what white privilege in parenting looks like.

An ongoing journey

Once I started looking for my privilege, I found it everywhere:

  • My daughter can take a snack into a grocery store and her lovey into a toy store and not be accused of stealing.
  • Unless we specifically look for books, TV shows and movies featuring diverse characters, any media we view is likely to feature characters that look like my daughter.
  • If my daughter and her friends want to play with Nerf guns then I don’t have to worry about her getting shot by a police officer who mistakes her for being a threat.
  • My preparation for going on vacation involves booking travel and a place to stay, not checking to see whether our destination is safe for my daughter.
  • My daughter’s preschool gives preference to families who already have friends in the school. It was very handy for us when we needed a spot at the last minute. Now I see it also makes it harder for non-white families to get in.
  • If my daughter is ever rejected from a place in a school or program, I can be pretty sure it’s because they don’t have space, not because “she just won’t fit in.”
  • I can choose a school based on the high test scores its students achieve and know that most of the children at the school likely look like my daughter and that the educational environment is set up for her success.
  • I have networks of friends, colleagues and even online parenting groups that are mostly white who share information on how to gain access to resources in the school system.
  • My daughter will be able to break rules like “no hoods up in school” without fear of detention, cumulative detentions leading to suspension and cumulative suspensions leading to expulsion.
  • I know that my daughter’s teacher will understand her when she speaks and that her contributions in class will be seen as valuable. Because of this, I know that if she is referred for special education services it is likely because she has a learning disability and not because the teacher doesn’t understand her or because she is perceived as ‘acting out’ in class.
  • If I believe that my daughter’s intelligence is at least average, I can probably get her admitted to a Gifted & Talented program where she will be surrounded by children who mostly look like her and where she will take classes that increase the chances she will be accepted into an elite college and later a high-paying job.
  • When my daughter learns about history, she will see the many contributions that people who look like her have made in the world.
  • When my daughter interacts with healthcare professionals, she will be believed if she says she is in pain.
  • If my daughter ever interacts with the criminal justice system, I can be reasonably sure that the consequences will be minimal—especially if I appear in court to show my support.
  • If I choose not to teach my daughter about prejudice or structural racism, there will be no serious consequence for me or for her.

By remaining silent about privilege, I am helping to perpetuate my child’s advantage in life. Because there’s only a certain amount of advantage to go around, right? Surely, if I help another child, then my own child’s chance at getting into an elite school and a high-paying job afterward must be necessarily reduced?

But getting good grades won’t be enough for success in the future: our children will need to know how to solve problems alongside people from many backgrounds. They will have to think critically, not just memorize names and dates. They will need to creatively innovate solutions to enormous problems, not just optimize the number of widgets sold. Our work to reduce our privilege—and allowing our children to see and understand this as we’re doing it—will be the thing that both benefits them and all children in the future.

What you can do when you recognize your own privilege

You can’t just read a book and consider your work with privilege to be ‘done.’ The work of understanding and mitigating your privilege will be a life-long practice. Here are three practical steps you can take in the short term:

Examine your own privilege, so you can truly see the injustices you have perpetuated, even if unintentionally. It’s only when you deeply understand your own role in the system that you can take steps to right the wrongs that your privilege has created. Layla Saad’s Me and White Supremacy workbook is an excellent resource to help you do this work (it’s available for free but please, pay her).

For resources specifically related to parenting, listen to my podcast episodes on white privilege in parenting and white privilege in schools (more episodes on related topics will follow in the coming weeks – if you subscribe, you’ll be notified when they’re released).

Look for areas of your life where you have power and focus your first attempts to reduce your privilege there. Write or call organizations with policies that give you an advantage and ask for the policies to be changed. If your child is offered a place in a free summer camp but you could afford to pay for a private camp, then send your child to the free camp and set up a scholarship at the private camp.

If you or your child witnesses prejudiced words or racist actions, don’t just withdraw your child to a ‘safe’ environment: make it clear that these words and actions are not to be tolerated. Talk with your white friends about privilege and about steps you can take together.

Listen to the voices of people of non-dominant cultures and lift these up (without making your voice louder than theirs). Make sure they can speak—and be truly heard—at PTA meetings. Don’t write their concerns off as ‘invalid,’ even if they are expressed in a different way than you express your concerns.

Elect them to positions of power. Help them to achieve their goals. You just might find that in doing this, you will take action that benefits all children.

Jen Lumanlan fills the gaps in her parenting intuition through research, via a Master’s in Psychology (Child Development) and another in Education.  Her podcast, Your Parenting Mojo, provides rigorous yet accessible information on parenting and child development to help parents tame the overwhelm and raise resilient, thriving children.

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5 Tips for When You Are a Parent and a Caregiver

By Kendra Madsen

Photo: Nikoline Arns on Unsplash

Being a parent is one of the most demanding jobs out there, but being a caregiver on top of it all can be completely overwhelming. You might feel like you’re drowning in responsibilities and have almost no time to meet your own needs.

The good news is, you’re not alone. Over 65 million people in America serve as caregivers in some way, shape or form. Whether you have a child with special needs, or are caring for an aging parent, there are resources available to help you. Let’s take a look at some of those resources, and some helpful tips for how to balance your time.

1. Hold family meetings

One way to find a healthy balance as a parent/caregiver is to hold regular family meetings. Your family needs to know that they are just as important as the person you are taking care of. Meeting together gives everyone an opportunity to share how they’re feeling and provide input.

Try to create an open environment where everyone feels comfortable sharing. You can also use this time to provide updates on any changes to your family member’s medical care or daily routine. These meetings don’t have to be super formal, but choosing a set day of the week or month can be helpful in managing expectations.

2. Ask for help

If there’s one universal truth about being a caregiver, it’s that no one can do it alone. Don’t be afraid or ashamed to ask for help. Help can take many forms and will look different for everyone, depending on your circumstances.

You might have the funds to hire a nanny to watch your kids part-time or pay a professional to take care of your loved one while you run errands. If you’re on a tight budget, ask family members for help or try trading babysitting hours with a neighbor.

There are also a myriad of resources available to caregivers depending on the illness or disability of your loved one. For example, the Alzheimer’s Association operates a 24/7 help line, and the National Alliance for Caregiving offers free guidebooks. Even Facebook groups can provide some relief from like-minded people.

Be sure to take advantage of community programs for your children as well. Many after-school programs offer financial aid, and organizations like 4-H or the YMCA can be extremely helpful.

3. Keep track of finances

Chances are, the person you’re taking care of has funds available to help ease the financial burden of being a caregiver. However, your time and money will be stretched thin, especially as a parent. Create a budget and stick to it, and save as much as you can. You never know when a medical emergency will arise.

If your children are school-age, look into getting financial assistance from the school lunch program. Some Title 1 school districts even offer meals during the summer to help out low-income families.

There are also a few options you may be able to take advantage of such as long-term care insurance and community outreach programs dedicated to helping caregivers.

4. Update medical coverage

Enrolling in Medicare (for those over 65 or on disability) can be tricky, which is why you should review your loved one’s policies. Make sure to update their policy during the annual open enrollment period or when any changes arise, and avoid penalties for late enrollment.

Your loved one may also be eligible for Medicaid—government subsidized healthcare—so be sure to find out the specifics of your state’s coverage and apply.

5. Take care of your mental health

Depression is a common side-effect of becoming a caregiver, which is why you should make your mental health a priority. Here are just a few ways to combat feeling depressed and overwhelmed with your circumstances:

  • Find ways to stay active

Chasing after toddlers is a workout on its own, but doing some additional cardio throughout the week will give you endorphins and build your stamina. Go on walks with your loved one if they’re able to leave the house and get your children involved. Yoga is another great activity for caregivers because it increases flexibility and relieves stress.

  • Eat a balanced diet

As any parent knows, this can be extremely difficult when time is scarce. If you have room in your budget, try a food subscription service like Hello Fresh or Blue Apron to take the stress of meal planning off your shoulders. Otherwise, be sure to work fruits and vegetables into your family’s daily routine wherever you can.

  • Get outside

Vitamin D is one of the best ways to fight off depression so take advantage of any opportunity to get outside, like checking the mail or walking the kids to the bus stop—just be sure to wear sunblock. For cloudy climates and winter months look into buying a happy light to keep indoors.

  • Take time for yourself

This advice probably sounds the least achievable, but carving even a few minutes out of each day for yourself can work wonders for your mental health. Read a page from a fun book, write in your journal, meditate or take a hot bath after the kids have gone to bed. Whatever you choose to do, make sure it’s something you enjoy.

  • See a therapist

If you do start to feel depressed, see a therapist right away. Therapy often carries a negative stigma in our culture, but there’s no reason to feel embarrassed about seeking help from a professional. If you had a broken leg, you would see a doctor to get it fixed. Mental health is just as important.

If you’re still feeling overwhelmed after reading this, don’t worry. With time, you’ll fall into a rhythm that works for your family. Just remember to seek help from friends, family, professionals, and organizations specific to your situation. Finding balance as a parent and a caregiver can be difficult, but it is possible.

Kendra is a writer for Eligibility.com who loves healthy living, the outdoors, and obsessing over plants. When she isn’t writing, Kendra can be found exploring the mountains with her puppy or curled up at home with a good book.

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