Amy Julia Becker's Blog, page 32

Stepping Off the Ladder of Comparison

I’ve been writing about Penny for a long time now. Along the way, I’ve often written of her accomplishments. The cuteness of hearing her pronounce “medium-hard words” when she asked for them as a kid. The time she was a finalist in the school spelling bee. The surprise of seeing her en pointe in her dance performance. I love sharing these stories because they point to things that Penny loves, and yet I also feel concerned that they play into a narrative that suggests our value as humans comes through our abilities and achievements. 

It’s easy to set up a hierarchy of worth rather than remembering the far deeper truth of our common humanity, broken and beloved, limited and glorious, vulnerable and gifted.

I attended a gathering a few weeks ago where I was telling some people who didn’t know Penny about her. One woman asked me whether she is “high-functioning.” Another suggested that life for us must be particularly hard because of her presence in our family. In both cases, I don’t think I flinched visibly, but I did internally. I didn’t want to respond in a way that put Penny on a ladder where her skills elevated her above other kids. I didn’t want to drag our family down into hardship compared to other families. I didn’t want to play into a narrative of comparative or competitive value. But I also didn’t know what to say.

Having a child with Down syndrome has raised my awareness of injustices in this world. It’s helped me see how much we need social supports for education and therapy and health care and employment and independent living. But even more importantly, having a child with Down syndrome has raised my awareness of what really matters about being human. What really matters is that we have been created in love and for love. We get to receive love and give love. Through our abilities. Through our brokenness. Through our limits. Through our gifts. Love is the undercurrent that runs through each of us and all of us. And every time we set up a hierarchy based on functioning or verbal ability or income level or ethnicity, we forget and deny that power of love.

I learned early on in Penny’s life that I had constructed my own sense of identity out of my abilities, and as a result I lived in a fragile, frightened place a lot of the time, because those abilities could shatter and be deemed not good enough at any moment. And if they did, then who would I be?

I also learned that my true identity was one of belovedness that emerged not out of abilities but out of God’s love for me. And from that place of belovedness, I was invited to explore my abilities and offer them, in love, to the world. If those abilities shattered along the way, my identity did not.

I’m circling back to these twin truths of belovedness and belonging. When we know we are loved as we are, at our core, then we will be people who step off the ladder of competition and comparison and instead create communities of belonging.

More with Amy Julia:

False Message: Disability is a joke to be laughed at.The Deeper TruthHope Moments: Living Out the Way of Jesus

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

The post Stepping Off the Ladder of Comparison appeared first on Amy Julia Becker.

Climbing Off the Ladder of Comparison

I’ve been writing about Penny for a long time now. Along the way, I’ve often written of her accomplishments. The cuteness of hearing her pronounce “medium-hard words” when she asked for them as a kid. The time she was a finalist in the school spelling bee. The surprise of seeing her en pointe in her dance performance. I love sharing these stories because they point to things that Penny loves, and yet I also feel concerned that they play into a narrative that suggests our value as humans comes through our abilities and achievements. 

It’s easy to set up a hierarchy of worth rather than remembering the far deeper truth of our common humanity, broken and beloved, limited and glorious, vulnerable and gifted.

I attended a gathering a few weeks ago where I was telling some people who didn’t know Penny about her. One woman asked me whether she is “high-functioning.” Another suggested that life for us must be particularly hard because of her presence in our family. In both cases, I don’t think I flinched visibly, but I did internally. I didn’t want to respond in a way that put Penny on a ladder where her skills elevated her above other kids. I didn’t want to drag our family down into hardship compared to other families. I didn’t want to play into a narrative of comparative or competitive value. But I also didn’t know what to say.

Having a child with Down syndrome has raised my awareness of injustices in this world. It’s helped me see how much we need social supports for education and therapy and health care and employment and independent living. But even more importantly, having a child with Down syndrome has raised my awareness of what really matters about being human. What really matters is that we have been created in love and for love. We get to receive love and give love. Through our abilities. Through our brokenness. Through our limits. Through our gifts. Love is the undercurrent that runs through each of us and all of us. And every time we set up a hierarchy based on functioning or verbal ability or income level or ethnicity, we forget and deny that power of love.

I learned early on in Penny’s life that I had constructed my own sense of identity out of my abilities, and as a result I lived in a fragile, frightened place a lot of the time, because those abilities could shatter and be deemed not good enough at any moment. And if they did, then who would I be?

I also learned that my true identity was one of belovedness that emerged not out of abilities but out of God’s love for me. And from that place of belovedness, I was invited to explore my abilities and offer them, in love, to the world. If those abilities shattered along the way, my identity did not.

I’m circling back to these twin truths of belovedness and belonging. When we know we are loved as we are, at our core, then we will be people who step off the ladder of competition and comparison and instead create communities of belonging.

More with Amy Julia:

False Message: Disability is a joke to be laughed at.The Deeper TruthHope Moments: Living Out the Way of Jesus

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Penny in Her Own Words: What I Want You to Know About My Life

What does life for a 17-year-old with Down syndrome look like? In case you’re curious, I asked Penny a few questions about her life as we come to the close of Down Syndrome Awareness month. Here’s what she wrote:

What are three things you would want other people to know about you?

Ted Lasso is my comfort showI Saw Taylor Swift and Beyonce in concert. The concert was an amazing experience. I never thought I would get to see my favorite singer in concert. Been to a Broadway production of Hamilton. Hamilton on Broadway was just really fun as a whole family. 

What are some of your hopes and dreams for the future?

Hope:

I hope to find a boyfriend one day

Dream:

One dream that I have for the future is to travel to Huntington Beach, Cali or the Bahamas. I want to go to Huntington Beach because I think from pictures It’s pretty and some of my favorite youtubers live there. I want to go to the Bahamas because I’ve been told the water is clear and I just think it would be a fun vacation spot. 

What are your plans after high school?

We will be living in Watertown so one thing I plan on doing after high school is getting to know the Watertown Transition Program. The Watertown Transition program is a place where you meet new people and hopefully make new friends. Also it is like a class that I have now which basically is life planning. A question that I have is Will I learn the same things I am learning in Transitions class? I have had a summer job where I was working at a local cafe with some people I knew from school. I do eventually want to go to college but obviously not right away. I might want to live with close friends and we will figure out the place together. 

What are some things you’re really good at?

Some things I am really good at are:

Writing skills” My writing skills have improved this year by I am more descriptive and I have evidence to back up whatever I am writing.Public Speaking: I have been in 2 weddings in my life and I have made a toast at both.Cooking/Baking: On Tuesdays, I schedule in a cooking/baking time.

What are some aspects of life that are challenging for you?

Some challenges that I face are:

Keeping a conversation goingDealing with someone else’s family dramaSelf-Advocacy

How do you feel about having Down syndrome?

I feel like a normal person but I know sometimes other people don’t look at me that way. When others look my way or in my direction they only look at the disability side of me but I know that I am more than that. Sometimes it feels weird to have other people look at me funny. I can either talk to the person directly or just not say anything. 

How does having Down syndrome affect your everyday life?

I may need extra time on Homework or tests. Also I may need extra help in some classes. Down Syndrome can limit the friends that you make but I don’t feel that way personally. It also blesses you because you may have other people wanting to maybe be friends with you. Include you. It affects all three of those things. Time, Health and relationships. Because you may feel Isolated or not welcome but other people may notice you and want to include you. 

More with Amy Julia:

Penny In Her Own WordsPenny in Her Own Words: Inclusion and High School Senior ProjectPenny in Her Own Words: Dear Parent, Congrats!Penny in Her Own Words: What I Thought About Netflix’s Down for LovePenny in Her Own Words: Working at The Po Cafe

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Small Talk Turns 9

“Limitations, properly understood, lead to love.”

I don’t always live as though I believe those words. I would often like to overcome limitations rather than accept them. But those words also might be my favorite line from my book, Small Talk: Talking with my Children about What Matters Most. The book turns 9 today (although the audiobook is only a few months old, recorded by yours truly)! 

This is the book I call my parenting memoir, about how I was holding on to my old way of life, then letting go of it all (and making a mess of that) and then growing up into a new way of being. 

If you are in a season of spending more time with little ones than you thought you were signing up for, in a time of pressing up against your own limitations and wondering if love could ever be—somehow—related to them, in a moment of feeling like the ordinary hard stuff of life is just too much–Small Talk is for you. You can help me celebrate by buying a copy or sharing word of this book with a friend today!

More with Amy Julia:

Recording the Small Talk AudiobookReading Small Talk: Behind-the-ScenesHolding the Lines as a Parent

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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COGNOSCENTI | The future I imagine for my daughter

The future is uncertain. After high school, should Penny go to a community college? Will she be segregated and only socialize with peers with intellectual disabilities?

I experienced a similar sense of disorientation in the early days of Penny’s life. I didn’t know who to talk to. I thought we were all alone in the maze of new parenthood with a child with an extra copy of her 21st chromosome, when instead we were invited into a community.

Early on, fear shaped my imagination. Slowly, love began to reshape it.

I thought we would swim through fear forever, but instead we were called to walk on solid ground, with family and friends and pastors and librarians and shopkeepers by our side. And now as Penny approaches adulthood, I return to that scared young woman with that beautiful new baby, and try to remember what I have learned. I try to remember that love is stronger than fear — at least in our house.

I’m writing today for Cognoscenti. 

READ THE REST OF THE STORY HERE…

More with Amy Julia:

RNS | Why do I still go to church?TIME: Doctors Don’t Know How to Talk About Down SyndromeS7 E4 | Breaking Down Bias: Prenatal Diagnoses and Comprehensive Care with Stephanie Meredith

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Penny in Her Own Words: Inclusion and High School Senior Project

What does inclusion look like for a senior with Down syndrome at our local public school? Here’s one example, in her own words, from an interview with Penny about her senior project: 

Penny, can you explain what “senior project” is at your school? 

When you are a Senior there is a class called Senior Project which all Seniors have to take. In this class you should have some ideas as to what is important to you or what you like to do and incorpoate that into a year long Project which you will present at the end of the year. 

What have you chosen for your senior project? Why did you choose it?

My Senior Project is all about Event Planning. I chose this because I am known to be a planner for 2 specific going away parties and in the future want to work in the event planning business.

What are some examples of other people’s projects? 

I have multiple examples but I want to highlight 2 specific projects.

Classmate 1: 

He has a brain tumor and that causes seizures at any time. His Senior Project is getting a training dog so that if he has a seizure the dog can respond/react in a certain way.

Classmate 2:

She is intrested in Yoga and Meditation. So for her Senior Project all year she will be researching and fnding helpful information on her specfic topic which will lead to the final presentation at the end of the year.

What will you need to learn in order to accomplish your goals for this project?

I will need to learn to limit technology distractions and to try to really focus on the work that needs to be done. Also handing in work on time.

What has been challenging about your project so far? 

I haven’t started getting tons of information on Event Planning in particular so I need to read through the book that I got and find some helpful information.

Why are you excited about it?

I am excited about my project and class in general because in class there are teachers/para’s there who want to help you. I am excited about my project because I am looking foward to planning and hosting events.

What do you think you will get out of this experience?

I think I will find some helpful information on what I need to do next and throughout this whole expirence I will take my planning very seriosuly.

More with Amy Julia:

Penny In Her Own WordsPenny in Her Own Words: Dear Parent, Congrats!Penny in Her Own Words: What I Thought About Netflix’s Down for LovePenny in Her Own Words: Working at The Po Cafe

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,   Instagram ,  Twitter ,   Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Friendship: Judgment and Jealousy or Celebration and Compassion

I learned early on in Penny’s life that if I spent my days comparing her to other kids, I would find myself in a place of judgment or jealousy. I would either think I wasn’t doing enough as a mom to support Penny’s growth (jealousy), feel sorry for myself for having a harder time as a parent (another form of jealousy), or dismiss the hardships other moms faced with their typical kids (judgment). Either way, my comparisons moved me away from these friends I desperately needed.

I eventually learned that I needed to receive Penny as she was, with gratitude for her gifts and support for her needs. I learned that I could do the same for the other kids. And for myself. And for the other moms. I learned that if I actually believe our belovedness—that each and every one of us is beloved by God and a gift to one another—it would change everything.

With the shift from comparison to believing our belovedness, judgment and jealousy changed to celebration and compassion. When other kids won awards or started playing soccer or performed in a show, I could enjoy their work. When other moms confided their anxiety about their children’s need for ear tubes or their exhaustion after a sleepless night, I could show genuine compassion. When Penny was having a tough time, I could be honest with my friends about it and receive their compassion too. 

Judgment and jealousy moved us apart. 

Celebration and compassion drew us together.

Believing our belovedness changes everything. 

More with Amy Julia:

Finding Freedom From the Condemnation of ComparisonS6 E4 | The Beauty of Life Together with Willie James JenningsS6 E3 | Down Syndrome and Belonging with Heather Avis

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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4 Ways to Deal with Brokenness

The world feels shattered. Some days I feel shattered. What do we do with all our broken pieces? I’ve found that there are four ways to deal with the idea that as humans we are broken vessels.

Despair. See ourselves and our world as irredeemably marred. Throw away the pieces and wish it weren’t so.Strive. Try really hard to achieve and excel and perform well and somehow glue the broken pieces back together again.Be made new. Especially for Christians, this one seems spiritual and biblical, but it isn’t. Here we try to ignore and deny the brokenness and replace it with Jesus.Bring brokenness under the blessing of God. Assume that belovedness is the truth that runs deeper than brokenness. That love can piece us back together without ignoring or denying the broken places. That brokenness can even become beautiful and purposeful when it is embraced and healed by love.

More with Amy Julia:

7 Healing Practices: Personal, Spiritual, and Social5 Ways to Experience God’s Love and Practice PeaceMovements of Healing: Honesty, Humility, Hope

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

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform.

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Penny in Her Own Words: Dear Parent, Congrats!

This summer at Camp PALS, Penny had a chance to write a letter to a new parent of a baby with Down syndrome as a part of PALS’ Congratulations Project. Here is what she had to say:

Dear Parent, 

Congrats on your new baby! My name is Penny and I am a participant at Camp PALS. I’m proud of multiple things. I am proud that I made the cheer team twice, I’m proud that I meet new friends at PALS, I’m proud that I have a strong commitment to dance, I’m proud that I have maintained friendships through some really tough times in my life, lastly I’m proud that I had a boyfriend even though it didn’t last long. 

I like to listen to Taylor Swift and jam out with my family and friends. I also like to dance and have dance parties with PALS. Lastly I like to comfort friends when they are upset and they need a friend. 

In the future, I want to become a part of the party planning business, maybe in the future get a job. In the future I want to be close to family and friends when I live without my parents. In the future if Taylor Swift does another tour I want to go to a concert.

I love my life because my family and I went to a Taylor Swift concert. I’ve always wanted to go to a Taylor Swift concert!!! I also love my life because I have made new friends over the years, some at PALS like James, Chloe, and Kenny; have also made friends at other camps that I have been to over the years. Lastly I love my life because I have been attending PALS since I was 12. I have made many friends at PALS, Chloe and James in particular. 

The experiences that I have been to at PALS have always been my favorite. Dorney Park and karaoke are my favorites. The PALS community has always made me feel welcome. I love the friends that you make and all of the random dance parties I have been part of over the years at PALS. 

The friends that I have made at PALS always has my back. Alex always knows how to make my week even though there has been some ups and downs. Alex and Bridget have been over the top supportive and knows when I need a dance party. Thank you Alex and Bridget and James for making my PALS week even more special. The dance parties were much needed. 

Sincerely,
Penny

More with Amy Julia:

Penny In Her Own WordsPenny in Her Own Words: What I Thought About Netflix’s Down for LovePenny in Her Own Words: Working at The Po Cafe

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Trouble with Podcasting Set-Up

Visuals are not my forte. As a result, I love podcasting. Theoretically, it only involves words.

And that’s what I always tell myself until about ten minutes before recording, when I remember two things:

that I now use video to record podcasting andthat I am in a rental house with an office that includes a large portrait of Frida Kahlo right behind my head

So this is me, a few minutes before welcoming Curt Thompson into conversation, scrambling to find a neutral background. 

Somehow we still managed to have a great conversation about suffering and hope. I’m not sure it would have been the same with Frida looking over my shoulder!

More with Amy Julia

Love Is Stronger Than Fear podcast

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