Amy Julia Becker's Blog, page 50

When One Child Needs More Attention

I’ve been receiving some great questions from readers lately, and I wanted to share my answers to some of the questions that might apply to lots of us. Here’s the first one, from another mom who has an oldest child with a disability and medical needs that require more of her time than the needs her younger kids have. She asked:

What do you do as a parent if one child needs more attention than the others?

And here are my thoughts: 

Marilee has more or less felt jealous of Penny throughout her life. And she has let me know it.

William has never put those sentiments into words, but when I ask him whether he thinks we favor one of them over the others, he immediately says yes. Penny.

I get it. Penny has needed more of my time for doctors’ appointments throughout her life. She doesn’t have friends who can carpool with her to dance, so I have been her chauffeur more than the other two. And she has needed more support, whether with cutting her food or folding her clothes or overcoming fear of thunder, than either of her siblings.

We can’t make the time even out. But we can acknowledge the feeling of disparity, even if only to ask Marilee and William how they feel and affirm our love for them. We love them equally but give them different amounts of time in relation to their different needs. And we can adjust the way we respond to them.

I now drive Marilee to school most mornings instead of making her go on the bus. This change came as a direct response to her sense of being less important to me than Penny. (It’s a long story of why in my mind it made sense for me to drive Penny but not Marilee to school.) 

Penny’s needs will probably always require more time than our other kids’, and I’ve had to trust that there is enough love, enough time, enough attention for each of them.

I’ve also had to trust that for our kids, having each other is a gift in and of itself.

More with Amy Julia:

Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny Free Resource:  Missing Out on Beautiful: Growing Up With a Child With Down Syndrome

If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook , Instagram , Twitter , Pinterest , YouTube , and Goodreads , and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platform. 

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3 Pieces of Advice for Parents of a Child With Down Syndrome

I have some advice for you! Here are three things I would do differently as the parent of a child with Down syndrome:

1. Pay more attention to self-care skills

I didn’t pay as much attention as I wish I had to helping Penny develop self-care skills. I’ve never been great about washing my hands, and I didn’t do a great job of passing that along to our kids. I get impatient with all the grooming—hair brushing and face washing and nail clipping and so on. If there’s any place where I am tempted to jump in and overcompensate for my child who learns things at a slower pace, it is in this area. But now that Penny is 17, I realize how much of a disservice it was to not take the time to teach and reinforce all of these habits. (I’ve also realized it is never too late. We are learning many of these habits now!)

2. Attend parent/teacher conferences with ALL teachers

I didn’t go to parent/teacher conferences with all of her teachers. I used to talk with Penny’s case manager and special education teachers, but not the head teachers in her co-taught classrooms. Then, when conferences moved to Zoom during Covid, I decided I would just park myself in front of the screen and take my six minutes with each and every teacher. Those few minutes of interaction taught me to always meet with all the teachers if I can. The head teachers in these classrooms need to be supported in teaching kids with IEPs (Individualized Education Plans), but they also need to be reminded that their job is to teach all the kids in their classroom. When I meet with these teachers, I am able to remind them of Penny’s presence in their classroom with her particular abilities and her particular gifts. 

3. Facilitate bike-riding skills

I didn’t sign Penny up for learn-how-to-ride a bike class. She fell off her bike when she was first on training wheels at age six, and she has never wanted to return to it. I’m glad I didn’t need to insist on bike riding for my own sake (there are certainly goals I have had for myself that underscore who I think I need to be as a mom and that aren’t really about her). But I now think that we gave up too easily, and I’m longing for a way for her to both join the family in an activity and move her body and get around independently. Once again, never too late! (We are looking into adult tricycles as well as flirting with the idea of the I-can bike program this summer. Stay tuned!)

More with Amy Julia:

Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny False Message: Disability is an inspiration.Free Resource:  Missing Out on Beautiful: Growing Up With a Child With Down Syndrome

If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook , Instagram , Twitter , Pinterest , YouTube , and Goodreads , and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platform. 

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Heroin(e): We Are All Broken and Beautiful

I’m lying in my bed today because I just had oral surgery. It’s not a big deal, but the anesthesia wipes me out, and it is possible that I will write or say or do loopy things as a result. Also, I need to be icing my face for 20 minutes at a time every 20 minutes, and it is hard to eat or read or type during those 20 minutes with an ice pack on my face. So I am doing something I never do. I’m watching lots of Netflix. I just watched a short documentary called Heroin(e) and I wanted to tell you all about it here because it was so compelling.

Heroin(e) follows three women who are responding with so much competence and compassion to the heroin epidemic in West Virginia. What I loved about it was the sense of common humanity I experienced.

We Are All Broken and Beautiful

Sure, I connected to the women who love the people on the streets. But even more so I connected to the men and women who are in recovery and using and walking the streets. There’s such an undercurrent of truth that every human life is one filled with brokenness and beauty. There’s so much pain and despair. There’s so much hope and promise. 

It’s a story of healing, and of the movements of healing. Honesty, humility, and so much hope. 

I want to stand on the side of healing—for myself and for everyone I encounter. And this film gave me one more glimpse of what happens when people choose to believe that everyone is broken and beautiful, worthy of healing, worthy of love.

More with Amy Julia:

Curated Reading: Putting Down the Algorithm6 Favorite Shows and Movies We Watched in 2022Friday Favorites and AJB Recommends

If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook , Instagram , Twitter , Pinterest , YouTube , and Goodreads , and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platform.

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False Message: Disability is an inspiration.

Disability is NOT an inspiration.

FALSE MESSAGE:

Disability is an inspiration to make other people feel good.

WHERE THIS FALSE MESSAGE SHOWS UP: 

Books. Magazines. TV shows. Advertisements. 

In the past few weeks, I’ve mentioned the ways people with disabilities can be reduced to a symbol of tragic suffering or as the butt of disrespectful jokes. But people with disabilities can also be reduced to inspirations. The disability community refers to this problem as “inspiration porn”—images and stories that exist for the benefit of the viewer and that fail to convey the full story of the person being represented. 

Amy Kenny writes (in her awesome book, My Body is Not a Prayer Request) about how she was expected to fulfill the narrative of “overcomer” in her school and church. She wasn’t seen as a full human—with abilities and needs, with bad days and good ones. She was a prop to make other people feel inspired. 

In addition to the images and stories, this misguided understanding of disability shows up in everyday interactions. People with disabilities are reduced to their inspirational value whenever they become “mascots” for their schools or communities and whenever they are treated like a beloved pet instead of the beloved human they actually are. 

TRUTH: 

Certainly, many people with disabilities have inspirational stories to tell. But if we don’t understand and engage the fullness of their experience—the hardships and the triumphs, the joys and the sorrows—we fall into the same trap of demeaning their humanity as we do with the false messages that reduce their lives to problems, tragedies, and jokes.

Needy. Dependent. Vulnerable.

Gifted. Beloved. Valuable. 

These are the truths of disability and the truths of our common humanity.

False Messages About Disability:

False Message: Disability is a problem to be fixed.False Message: Disability is a tragedy to be alleviated.False Message: Disability is a joke to be laughed at.False Message: Disability is an inspiration.

More with Amy Julia:

Memoirs/Books About God’s Logic of DisabilityS3 E15 | Who Belongs? Disability and the Built World with Sara HendrenHow God Thinks About DisabilityTelling a New Story About DisabilityS6 E3 | Down Syndrome and Belonging with Heather Avis

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Reading Black Literature as American Literature

I first read Toni Morrison’s Beloved in high school. It was one of the only books I had ever read by a Black author. I loved it. I went on to read it at least three more times.  

I loved reading white authors too. I loved The Scarlet Letter and Wuthering Heights and The Great Gatsby. In all of these cases, I soaked in the language and the characters and the way the authors created a world I could enter in from a distance of time and space. But Beloved told more truth than the others about both the horrors of and the possibilities for redemption within the story of America. Beloved’s haunting message was also a message of hope, if only we would look that horror in the face and seek to repair it. 

African American literature is American literature

So I sought out more Black writers in college through an Introduction to African American literature class, which turned into an African American studies minor because I just kept taking classes. I learned in these classes that African American history is American history. That African American literature is American literature. Without the voices of Morrison and Hurston and Baldwin and King, I could never have understood our nation or myself within it. And this understanding came not because these authors shamed me as a white person, but because they forced me to reckon with the complex reality of my humanity, of our humanity. 

I always live with the capacity for beauty and love and the capacity for evil and injustice. We always live within systems that will perpetuate evil unless that evil is named and resisted and overturned.

An Invitation for People Like Me

As we come to the beginning of Black History Month, I write this as an invitation for people like me, who have the privilege of living in a homogeneous world that often ignores the harmful reality of racial injustice, to engage with Black history. Read Strength to Love by Martin Luther King or Walking with the Wind by John Lewis or I Know Why the Caged Bird Sings by Maya Angelou or Just Mercy by Bryan Stevenson or The Warmth of Other Suns by Isabel Wilkerson. Read Beloved by Toni Morrison or Sing, Unburied, Sing by Jesmine Ward or Invisible Man by Ralph Ellison or Song Yet Sung by James McBride. (Go here for more book, film, and podcast recommendations for Black History Month.)

A Word of Thanks to the Truthtellers

And I write this as a word of thanks to the truthtellers of the past and the truthtellers of the present who expose us to hardship and pain in order that we all can move towards repair and redemption. The path toward healing is a path of honesty, humility, and hope. 

More with Amy Julia Becker:

Book, film, and podcast recommendations for Black History MonthS5 E12 | Racism: Can Learning History Bring Healing? with Lisa Sharon HarperS5 E10 | How Kids Can Fight Racism with Dr. Jemar TisbyS4 E1 | How Do We Fight Racism? with Jemar TisbyS5 E4 | What’s So Controversial About Critical Race Theory? with David BaileyS3 E1 | Waking Up to Privilege with David Bailey

If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook , Instagram , Twitter , Pinterest , YouTube , and Goodreads , and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast

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Active Listening in the Wake of Tyre Nichols

In the wake of the violent death of Tyre Nichols – a young man who died as a result of injuries sustained due to a traffic stop by five police officers – I’ve been asking how to think and pray and respond. The feelings are easy: horror, despair, anger. But the response is harder. 

The fact that I have so many questions about my own response has led me back to neither speaking up nor silence but rather to a posture of active listening. 

I don’t want to passively let the news pass me by. I don’t want to avoid the larger systemic questions. I don’t want to ignore the deep pain experienced by women and men across this nation who cry out in response to yet another act of unnecessary and fatal violence. But I also do not want to pretend to have the answers or to know exactly what to say or do. 

Rather, I want to take the time to listen, to turn my heart toward the voices of people who can teach me and lead me and guide me. (I’m including a list below of many of those people who you can follow if you’d like to join me in actively listening.)

The purpose of active listening, again, is not passivity or silence. Rather, active listening moves us towards lament and ultimately enables us to take an active response of love. 

Listen. Learn. Lament. Love. 

Here is a list of many of those people whom you can follow on Instagram:

@bethebridge 

@blackcoffeewithwhitefriends 

@blackliturgies

@jemartisby

@lisasharper

@raychang502

@thekingcenter

@sandravanopstal

More with Amy Julia:

Free Resource: Head, Heart, Hands (an action guide for participating in the work of love to heal social divisions)Free Resource: Movements of Healing: Honesty. Humility. Hope.People to Follow Across the Political Divides

If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook , Instagram , Twitter , Pinterest , YouTube , and Goodreads , and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platform.   

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Happy 12th Birthday, Marilee!

Marilee recently pulled out the measuring stick we use for our family and said, “Look at me in 2016! I’ve grown so much!” And then she said, “And look at you in 2016, before you started shrinking!”

She wasn’t kidding.

Apparently, I am shrinking already. 

But, far more to the point, she is growing. And growing into a beautiful, kind, funny, fun, insightful, delightful young woman. In everything she does, she is all in. On the field, on stage, in the classroom, in a friendship, in our family. Big feelings. Big thoughts. Sometimes, big disappointments. Always, big hopes and dreams. 

Last night, she told me she had found a new book to read. “No one is as good as me at judging books by their covers,” she said. 

We had a good laugh, but I also wondered at the truth of her statement. Because sometimes what you see on the outside does reflect what’s true inside the pages. It’s certainly true with Marilee. 

If she’s mad, you’ll see it. If she doesn’t forgive you, she will tell you. And if she is grateful and enthusiastic and filled with excitement, you will know it within moments. 

Today is Marilee’s 12th birthday. We could not be more grateful for who she is and what she brings into our lives. Happy birthday, Marilee!!!

More with Amy Julia:

What Marilee Taught Me About PrayerBig Feelings and Growing Up with MarileeWhy a Failed Shopping Expedition Was Still a Great Birthday Present

If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook , Instagram , Twitter , Pinterest , YouTube , and Goodreads , and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platform.

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Finding Places Where Everyone Belongs

Where everyone belongs.

That’s the dream. That’s the hope. That’s the space and the community and the future we long for.

Sometimes we catch glimpses of it. 

Penny and I took an intentional detour after a doctor’s appointment a few days ago to visit BeanZ and Co., a coffee shop and cafe in Avon, CT that a few people had mentioned to me over the past few years. Penny is seventeen now, so we have started talking with her about finding a summer job and about the type of work she might want to do in the future. 

So we stopped for lunch. The cafe was bright and open (sorry I didn’t take photos inside, but you can find more on the website and Instagram page!). The food was delicious. And at 2:30pm, thirty minutes before closing, half the tables were still full. Business, on a snowy Wednesday afternoon, seemed to be going well. 

We talked with Kim, co-owner and co-founder of the company, who has a daughter with Down syndrome. At one point in the conversation, Kim said to Penny, “I would hire you in a heartbeat.” And those were the words Penny remembered hours later when she told Peter all about the afternoon.

I would hire you in a heartbeat.

I don’t know whether Penny will get a chance to work at BeanZ and Co., but I do know that we are grateful for this little signpost that points towards the possibility of a world in which everyone contributes, everyone is seen and valued, and everyone belongs.  

More with Amy Julia:

Book:  A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny Free Resource:  Missing Out on Beautiful: Growing Up With a Child With Down Syndrome Disability and Respect: Look Her in the Eye

If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook , Instagram , Twitter , Pinterest , YouTube , and Goodreads , and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platform. 

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To Be Made Well and Disability

When we look at the stories of Jesus with people with disabilities in the Bible, it can seem like a really simple equation. Disability=bad. Curing=good. But one of the things I’ve learned over the past seventeen years of living with a daughter with Down syndrome and learning about the theology of disability is how that simple equation doesn’t, in the end, add up.

One of the reasons I wrote To Be Made Well was to explore the theme of Jesus as healer. I wanted to zoom in on the stories of women and men with what we would now call disabilities and try to understand what was happening there.

I learned that Jesus does not see disabilities the way our world does. That healing is not primarily about physical transformation (though it is about alleviation of physical suffering) but about a holistic work of reconnection. I learned that healing in the Bible is not primarily about physical transformation but about shalom, about relational connection and restoration. I learned that my understanding of what makes a human body, mind, and spirit ideal is a far cry from God’s understanding of human wholeness. 

Having a child with a disability has helped me see that disability is not a special form of brokenness in need of a special type of healing. Rather, what we call “disability”—like what we call humanity—is an aspect of God’s glorious and wondrous creation that retains marks of the brokenness and pain we all also experience in this human life. Penny’s presence in my life, and Jesus’ acts of healing love, have opened me up to see the ways that healing is for each of us, and for all of us.

More with Amy Julia:

Book: To Be Made Well: An Invitation to Wholeness, Healing, and Hope

Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny

Free PDF Resource: Movements of Healing guide

If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook , Instagram , Twitter , Pinterest , YouTube , and Goodreads , and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platform.

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Develop Your Spirituality by Starting Small

What if we had a way to alleviate depression and anxiety, to protect against substance abuse and self-harm? What if there were answers to the mental health crises we are facing as a society and especially among our teenagers? 

In Lisa Miller’s book The Spiritual Child, she says spirituality protects against depression, anxiety, and substance abuse at far higher rates than any other medication or intervention. 

FAR HIGHER than ANY other medication or intervention.

Miller defines spirituality as “an inner sense of relationship to a higher power that is loving and guiding.” Spirituality can come to us through religion. It can also come to us through nature, sports, other people, and practices of mindfulness and prayer. It cannot come through a focus on accomplishment, affluence, and achievement.

But how do we develop these practices for ourselves or pass them on to our kids? 

At the moment, I’m also reading James Clear’s Atomic Habits. He talks about how really small but consistent changes in our everyday lives are exactly the way to make major changes in our lives. 

Discover or Develop Your Own Sense of Spirituality

And so, if you are a person who would like to discover or develop your own sense of spirituality, James Clear would say start small enough to keep going:

Take two minutes a day to pray or meditate. Read one paragraph of a spiritual book or the Scripture from a religious tradition. Ask one question. Journal one line of gratitude. 

And for those of us who want to invite our kids to do the same, again we can start small:

A text asking how we can pray for them. A conversation about what makes us human and whether God is a part of that where we do more listening and asking questions than stating opinions. A word of thanksgiving. A word of apology.

We can take small steps towards life-changing spiritual practices that connect and protect both us and our children.

More with Amy Julia:

Free Resource: 12 Tips | How to Start Reading the BibleDomestic MonasteryS6 E10 | How to Receive the Time We’re Given with Jen Pollock Michel2 Intentions for 2023

If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook , Instagram , Twitter , Pinterest , YouTube , and Goodreads , and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platform.

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