Amy Julia Becker's Blog, page 19
August 12, 2024
Happy 16th Birthday, William
William turned 16 last week.
We ordered Indian food and ate ice cream cake and sang a song in his honor.
The chorus (set to Taylor Swift’s Getaway Car) might very well sum it all up:
“(Soon) you’ll be driving in your very own car,
Learning stick shift, it won’t always be hard
Where you’re going next is a mystery
Who you are right now is who you’re meant to be…”
(Tap the right arrow on the post below to see a video of us singing to William!)
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I’m still reminiscing about the day he learned to walk and the way he couldn’t say “r” and the eagerness in his eyes when he first began to know the difference between an oak, a maple, and a sycamore tree. Now, he is getting his learner’s permit and starting to think about college and tucking me in at night because he always goes to sleep later than I do.
Even so, he is just as wide-eyed and curious about the world as he ever has been. And we love him even more than we ever have.
P.S. He won’t actually own a car for a while, but his dad is planning to teach him on a manual transmission, and since I have never learned to drive stick, it’s going to more or less feel like his very own car all the same.
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August 8, 2024
How Politicians Talk About Disability Matters
As we head into another election cycle, I’m paying attention to the language politicians use to talk about people with disabilities. This is not a partisan issue. I’ve heard politicians on both sides of the aisle use disparaging or dehumanizing language when it comes to disabilities.
I’m not looking for perfection, but I am on the lookout for candidates who use language to lift up the most vulnerable among us. I’m listening for women and men who recognize the inherent dignity in people with disabilities. I’m wondering if there are politicians who believe and communicate that people with disabilities both belong and matter in our society. I’m paying attention to all of this both because disabled people deserve that respect but also because what we believe about people with disabilities often extends to the way we value all of our diverse human lives.
How politicians talk about disability matters. To all of us.
MORE WITH AMY JULIA:
Workshop: Reimagining Family Life with DisabilityS7 E15 | Bringing Politics Under the Power of Love with Michael WearS7 E 10 | Disability and the Language We Use with Andrew LelandLet’s stay in touch. Subscribe to my newsletter to receive regular updates and reflections. Follow me on Facebook , Instagram , and YouTube and subscribe to my Reimagining the Good Life podcast.
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The Wonder of Kindness and Joy on Planet Earth
Last year, after we returned from a week at Hope Heals Camp, I wrote that camp “is not a place where we lay out a message of salvation, but rather a place where we live out a message of belovedness and belonging.” Here we are, one year later, and again I am awed at the gentle, hidden, deep power of just a few days of life within an interability community.
At camp this year, I had the honor of presenting a series of talks from Jesus’ Beatitudes to the volunteers. The Beatitudes are Jesus’ proclamations of spiritual reality. They name unexpected spiritual truths, like, “The good life belongs to those who mourn…” and “You flourish when you are poor in spirit…” and “Blessed are the meek…”
I shared with the volunteers at the camp how those words could frame our time, and then I talked about what happens. I mentioned that if and as we live into Jesus’ words, three different things happen:
We move from the way of payment to the way of blessing.We all are lifted up.We participate in God’s work in the world.Our week at Hope Heals embodied all three of these truths, so I want to share a few stories to illustrate each of them.
1. We move from the way of payment to the way of blessing. The “way of payment” is a transactional way of being in the world, where I work for a certain number of hours and get paid what I am owed for that labor. The way of payment isn’t necessarily bad. It’s just limited. And it quickly becomes hierarchical, with some people on top and others on bottom.
The “way of blessing” is a way of being in the world where I trust in the abundance of grace and love and mutual giving and receiving.
I saw this truth lived out when our son William told me about a conversation he had with another teenager about the talent show. “Are any of the acts actually good?” the other kid asked. William paused and then said, “That’s not the point.”
The point of the Hope Heals Talent Show is not to showcase the best singers or dancers or basketball players.
The point is to celebrate each other as we are. The point is a demonstration of the kind of love and acceptance that every one of us needs.(Katherine Wolf says this simple event is one of the “most beloved, most profoundly life-giving parts of camp.” Watch these two minutes here and see why! Watch Penny’s full dance performance here.)
2. We are all lifted up.This truth is lived out all week long, but the most concentrated glimpse of it for me came on the final night. We happened to have a constellation of incredibly gifted Christian musicians—Sandra McCracken, Ellie Holcomb, Byron House, Kristian Stanfill, Jeff and Jourdan Johnson—leading us in song. Soon, one young girl climbed up on stage with them. Then, a young boy climbed into Jeff’s lap at the piano. A few more joined in, including our daughter Penny.
There was no ego claiming a particular spot on that stage. No one needing to prove themselves worthy. In fact, having kids and young adults with intellectual disabilities leading us alongside award-winning artists only enhanced the experience. It was a moment of everyone being lifted up together. (Watch here)
3. We participate in God’s work in the world. In the Beatitudes, Jesus describes the spiritual reality so many of us face: meekness, poverty of spirit, longing for justice and goodness in this world. And then, as soon as he finishes these statements, he goes on to say, “You are the salt of the earth… You are the light of the world…”
There’s a connection between these two sections. You—the very same ones who are bedraggled and humble and beaten up by life—you are the salt of the earth, the light of the world. You are the ones who matter. You are the ones who go from this place and take a message, and live a message, of gentleness and kindness and unfailing love. You are the ones who enact the kingdom of God.
The Wonder of ItKatherine Wolf, co-founder of Hope Heals, described a few of the teenage boys who led the cheering at the talent show. She said, “Well, yes, that happened on planet Earth.”
That’s the wonder of it. Kindness, love, joy, compassion, beauty, goodness—they all can and do happen on planet earth. Even among teenage boys.
And we are all invited to trust in that abundant goodness and live out of that place of abundant blessing every day.
Let’s be clear—we came home from camp and had 24 hours of total crankiness with one another. William and I got sick. Peter apologized to the whole family for having a bad attitude. Everyone was out of sorts. And I can still imagine Jesus saying to each of us, “Yes, you—even when you are sick or cranky or rude—you are the salt of the earth, the light of the world, the beloved ones.”
Maybe you’re wondering if joy and beauty can happen not just on planet Earth, but within your family. If you’re a parent or a caregiver of a person with a disability, I’ve created a workshop just for you: Reimagining Family Life with Disability. Check it out and register today! And please share with a friend.
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MORE WITH AMY JULIA:
LeBron James: “Being a Winner Is a Curse”The Good Life Belongs to the Ones who are Unimportant and OverlookedPenny in Her Own Words: Why Go to Hope Heals Camp?Let’s stay in touch. Subscribe to my newsletter to receive regular updates and reflections. Follow me on Facebook , Instagram , and YouTube and subscribe to my Reimagining the Good Life podcast.
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August 1, 2024
Summer’s opportunities to watch, listen, and read with abandon
We asked our kids last week what metaphorical season they are in right now. All of them seemed confused. Literal summer also pretty much always feels like emotional summer to them. It’s fun. It’s beautiful. It’s relaxing. The peaches are ripe and the days are long and the sunsets are plentiful and stunning.
Peter and I both said we feel like it’s early spring. We’ve come out of a long year, with a fair amount of loneliness and so much transition.
Even though I feel like I’m in a metaphorical early spring, with muddy patches and tiny green buds just hinting at the abundance that is to come, I am also receiving the goodness of the literal summer for what it is—the time with people, the food, and the opportunities to watch, listen, and read with abandon.
Favorite ThingsWhich leads me to a list of my current old and new favorite things. Before I share what I loved in July, here’s one of my favorite projects of 2024—the Reimagining Family Life with Disability workshop. I loved creating this, and it’s so encouraging to hear from participants who say the workshop is transforming how they think about disability and the ways they reimagine family life. I hope you’ll check it out and tell a friend about it!
And now my favorite things last month:
1. Chunky gazpacho.If you have a garden or a local farmer’s market with fresh corn and tomatoes, this is for you. Even better if you have 2-3 kids who can help you with lots of chopping in the kitchen.
2. Hydrangeas.I can’t believe the long lasting beauty of these blooms. Apparently they are having a bumper year here in the Northeast, and I am here for it in every sense of that phrase.
3. Rummikub.I loved this game when I was younger, and we’ve just pulled it out as a family. Penny and I usually play as a team, and everyone else has a fighting chance.
4. The Bear.I know critics haven’t loved season three as much as the first two, but I’m still enjoying this show and the exploration of all the unseen workers and the tension between caring for people and caring that things be done with excellence.
5. Inside Out 2.Again, I know the critics didn’t think it was as good as the first one, and I agree. But still this was such a great movie to watch as a family. We went out to dinner afterwards, and everyone shared who they related to in the movie and which emotions we see in each other. I was honestly so touched when I told everyone that I resonate with Anxiety and my family said that I remind them of Joy.
6. Rest for Your Soul.I loved this sermon from John Mark Comer about rest for so many reasons, and what stayed with me the most was the contrast he makes between restfulness and restlessness (not restfulness and exhaustion).
7. Blue Zones.I was fascinated by this conversation about “Blue Zones” where people live longer and healthier lives. One of the most striking things he said was that people live longer when they slow down.
8. Our Missing Hearts.I’m going to force myself to only share three books I’ve loved so far this summer. Celeste Ng’s Our Missing Hearts is a beautiful and haunting meditation on what happens when the state controls our families and the power of art as protest. (This one is also a good one for teenagers.)
9. Troubled.I’m reading Troubled, by Rob Henderson right now. After growing up in and out of the foster care system and then making his way to Yale and a PhD at Oxford, he has a sobering and fascinating story to tell. He argues that family stability matters more than anything else, including education, and that we should direct government policy/programs towards increasing family stability and emotional health. (Here’s a NYT video/story about his perspective if you want a short version of the argument.)
10. Truth Be Told.I have enjoyed all of my friend Patricia Raybon’s mystery novels because of their combination of Denver history, race relations, faith, and mystery. Her latest, Truth Be Told (which was mentioned in the New York Times!), is her best yet.
As always, I love to hear what you’re reading, watching, listening to, playing, and eating!
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LeBron James: “Being a Winner Is a Curse”
I couldn’t help but feel sad when LeBron James said in an ad for the Olympics that “being a winner is a curse.” He says it doesn’t matter whether you’ve won before, you are only a winner if you keep on winning.
He made me think of another Olympic athlete, from a century ago, Eric Liddell. Liddell said he didn’t compete in the Olympics in order to win. He didn’t compete in order to prove himself or convince someone else that his life mattered. He ran, Liddell said, because when he ran he could feel God’s pleasure.
LeBron James is inviting us to an impossible way of being where we are never enough.
Eric Liddell is inviting us to a way of blessing and abundance where discovering who we are and offering ourselves in love and delight to the world is more than enough. That’s how I want to live.
MORE WITH AMY JULIA:
Assume That I Can, Maybe I WillThe Good Life Belongs to the Ones who are Unimportant and OverlookedReimagining the Dream of a Family Bike RideLet’s stay in touch. Subscribe to my newsletter to receive regular updates and reflections. Follow me on Facebook , Instagram , and YouTube and subscribe to my Reimagining the Good Life podcast.
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July 29, 2024
What advice would you give someone who is trying to make a plan for their future?
Penny and I did a presentation together at Hope Heals Camp about taking steps to plan for the future. If you want great advice and info from an 18-year-old who just graduated from high school, keep reading! The Path process that Penny writes about transformed education and special education and disability support and person-centered learning for our family.
WorkshopBefore I share Penny’s words below, I want to make sure you know about my Reimagining Family Life with Disability workshop. This workshop invites families affected by disability, who may feel overwhelmed or lonely or inadequate or confused, to envision and work toward a good future for their family. We’re hearing from so many individuals about the beautiful ways this workshop is equipping them as parents/caregivers and helping their families. I can’t wait to reimagine family life together with you! Let’s get started!
Penny in her own wordsNow on to Penny’s reflections…
Can you explain to people what we do at a Path meeting?
At a Path meeting we talk about basically the future but also we highlight the hopes and dreams that you have right now. And maybe add some hopes and dreams for the future. We also review the achievements and go through the action plan.
Some of my achievements are:
Being on the cheer team for 3 years
Having amazing friends who have supported me
Senior Project ( Event Planning) skills
An action plan is you make a chart with important key takeaways from the meeting and you list those takeaways on the chart with the person who will help you go forward and complete that task.
Who are some of the people who come to a Path meeting?
Your support group, teachers, friends, counselor.
I am mostly in charge of inviting the people to the meetings but also a staff member can have a say as well.
What is the purpose of these meetings?
The purpose of a Path meeting is to think ahead to your future and try to plan ahead of time what you could do.
What are some of your hopes and dreams for the future?
Some of my hopes and dreams for the future are:
Travel to the Bahamas
Be a self advocate
Continue Writing
What are some of your fears?
Some of my fears are:
Being too independent- I guess it means being more mature like making my own appointments. Or it means being more responsible than I am right now.
Not being able to find a job based on my disability
People thinking I am younger than I actually am
People talking only to another person in the room about me when I am in the room and can answer their questions
Are there things you have worked on that address those fears?
I have had some previous work experience at Panera in Southbury and at the Po back in Washington.
Sometimes or more often the doctor will actually ask me the questions that I can easily answer for myself.
When I advocated about the whole Pointe situation.
Maybe give me some prompts for when I need to step in and say something. Especially if it’s about me.
What are some of the things we’ve worked on over the years in order to move towards your hopes and dreams?
We have worked on the following:
Me being able to do my own laundry
Putting my hair up In a ponytail
Cutting my fingernails and toenails
Kitchen skills
Navigating public transportation
How has your community helped you?
My community has helped me by providing transportation and giving me the opportunity to work at different job sites.
Also Tamara from church made me make a phone call to order dinner so that we could pick it up.
I also helped Dad by guiding him using the signs through the busy airport.
Is there any advice you would give to other people who are trying to make a plan for their own future?
A few more helpful PATH resources:Focus on your hopes and dreams and then worry about everything else later.
Our journey using the Path process
inclusion.org
pacer.org
MORE WITH AMY JULIA:
Reimagining Family Life with Disability workshop
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July 23, 2024
Penny in Her Own Words: Why Go to Hope Heals Camp?
After spending eight hours in the Philadelphia airport (a long, boring story), we landed in Birmingham and are now at one of our favorite places—Hope Heals Camp.
Before we left home, Penny wrote about camp and why she looks forward to it every year. Here’s Penny in her own words…
_
Q: Our family flies down to Alabama to participate in Hope Heals camp every year. For someone who hasn’t been to Hope Heals camp before, can you describe it?
PENNY:
Yes. The founders of Hope Heals have an incredible journey/story that you should read about someday. Hope Heals is a camp where any family affected by disability can come to gather and celebrate with each other in the midst of a massive heat wave.
Q: Why would anyone want to go to Alabama in July?
PENNY:
* You can make new friends.
* You can share your story.
* There is always a sense of connection and reuniting with others.
Q: What have you learned about yourself from going to Hope Heals?
PENNY:
* I started to enjoy the book that Katherine and Jay have written about their journey.
* I can make new friends and keep the old.
Q: What have you learned about other people?
PENNY:
Other people want to discover what the Path workshop is. [AJ here… Penny will help me present about PATH this week!]
The Path workshop started in the building of Shepaug Valley High School, and is a process about planning for your future and what your hopes and dreams are now. When we are at Hope Heals my role with the Path workshop is to share my experience with the other people there.
Q: What have you learned about God?
PENNY:
God is powerful in so many ways.
Q: What have you learned about disability?
PENNY:
There are many different kinds and forms of disability
Q: What are you looking forward to as we get ready for camp this year?
PENNY:
* Being reunited with all of my staff besties
* Helping Mom with the Path workshop again
* Being a camper and Volunteer
* Talent Show
MORE WITH AMY JULIA:
Penny in Her Own WordsPenny in Her Own Words: Senior PromPenny in Her Own Words: What I Want You to Know About My LifePenny in Her Own Words: Senior TripLet’s stay in touch. Subscribe to my newsletter to receive regular updates and reflections. Follow me on Facebook , Instagram , and YouTube and subscribe to my Reimagining the Good Life podcast.
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Online Course Now Available
After our daughter Penny was born and diagnosed with Down syndrome, I felt as though I could no longer imagine our future as a family. The messages I had heard about Down syndrome were negative and outdated. I didn’t have any idea how to think about who she would become or who we would become as a family.
Now, 18 years later, I can testify to the goodness of our family life. Not the perfection of it! But the goodness of three kids who bicker with each other and get jealous and annoyed, who bake cookies and play Clue and do the dishes together, who give and receive to each other and to us. And while there are plenty of factors that have contributed to that goodness, a lot of it comes down to having a renewed imagination for family life.
Over the years, we have learned to identify the negative messages our culture tells us about people with disabilities, and we have learned to replace those messages with a different understanding. Shifting our mindset around disability has helped us to believe in possibilities for our family’s future.
Last fall, I had a kind of epiphany. It really did feel like a lightbulb moment, when I realized that these 18 years of parenting has given me insight that I longed to pass along to other parents like me. And so I developed a workshop called Reimagining Family Life with Disability, which I was able to teach online for the first time in May.
Now, that same course is available in three different formats—live, virtual workshop, online course, and video teaching for groups. I would love for you to take it yourself or tell a friend about this opportunity. I’ve come to believe not only that life can be good for families affected by disability, but also that our whole society will be better if we learn how to reimagine family life and community life so that people with disabilities belong and matter.
I hope you will join me as we reimagine family life with disability.
MORE INFO / REGISTERRead more posts like this over on my Substack.
MORE WITH AMY JULIA:
The Good Life Belongs to the Ones who are Unimportant and OverlookedCreating Belonging Within FamiliesSometimes Holidays Are Hard for Kids With DisabilitiesPenny in Her Own Words: Camp PALS 2024Let’s stay in touch. Subscribe to my newsletter to receive regular updates and reflections. Follow me on Facebook , Instagram , and YouTube and subscribe to my Reimagining the Good Life podcast.
The post Online Course Now Available appeared first on Amy Julia Becker.
July 18, 2024
The Good Life Belongs to the Ones who are Unimportant and Overlooked
A few years ago, I was seated next to a businessman from New York City at a fundraising dinner. I asked him about his summer plans, and he told me they would travel to Paris for his wife’s birthday and later spend time on Nantucket. I felt a little sheepish when he asked me our plans in return. Our only family adventure that summer was a trip to Nauvoo, Alabama, for a week at Hope Heals Camp.
Hope Heals Camp exists for families affected by disability. Our family participates for one week every summer, and I look forward to it all year long. We don’t go because it fulfills some sort of community service requirement for our children. We don’t go because we feel like good people when we give of our time in this way. We go because it offers us an invitation to live within a deeper and truer reality than our everyday lives. We go because when we are there—bugs and humidity and camp food and all—we are truly living the good life.
On Sunday, the Becker family will return to camp for our fourth summer, and this time I get to share some thoughts with the other volunteers about the spiritual truths embedded within Jesus’ words in Matthew 5:2-13, this list of nine blessings that we commonly call the Beatitudes.
Maybe you’ve heard some of them:
These words seem so blatantly untrue.“Blessed are the poor in spirit… Blessed are those who mourn… Blessed are the peacemakers…”
Perhaps you, like me, have wondered what these words mean. They seem so contrary to our lived experience. They seem so blatantly untrue.
One translator suggests that the best way to understand these verses is by imagining Jesus saying, “The good life belongs to the ones who mourn…”
It is hard to understand why Jesus would say that life is good for the people who are unimportant and overlooked and oppressed. I can understand why he would say that God loves those people, or why he might promise God’s justice to them in the end, or why he might express compassion for their plight.
But why would he say that their experience, here and now, is a good one, one that embodies the way of blessing, one that points to the realm of God?
My desire to return to a sweaty campsite, surrounded by people who have experienced all the rejections and sorrows this world has to offer, has helped me to better understand Jesus’ message.
I want to be at camp because there’s an honesty, humility, and hopefulness embodied within the community.I want to be there because it connects me to a deeper reality than my everyday existence.I want to be there because I experience what Jesus describes when he says that the kingdom of God has come among us.I want to be there because it is a place where social dividing lines start to disappear, where status ceases to function as currency, where everyone is lifted up.I listened to a great conversation between Surgeon General Vivek Murthy and social-scientist Adam Grant this week, and I was so taken by Grant’s answer when Dr. Murthy asked him how he defines success. Grant said:
“I used to think it was achieving goals. Now I see it as living values.”
The Beatitudes, and the Sermon on the Mount, are Jesus’ way to live the values of love and joy and peace and kindness. For me, a week at Hope Heals is a chance to live those values too.
Jesus’ Beatitudes describe the people who are overlooked and unappreciated and ignored. And then he says:
“You are the salt of the earth… You are the light of the world.”
I didn’t connect the dots until very recently. The meek, the poor in spirit, the mourning, the persecuted. They are the ones who shine light into dark places. They are the ones who change the world. We—and even the broken and hurting parts of us—are invited to be God’s people on this earth, living out a spiritual reality that, in the words of U2 “has to be believed to be seen.”
An Invitation to Participate in the Good LifeMost of you who are reading this message won’t be joining me at camp this year (though I hope you’ll check out Hope Heals and consider coming next July). But all of us can participate in the spiritual reality Jesus proclaims. Greg Boyle, founder of Homeboy Enterprises and author of Tattoos on the Heart, says that the Beatitudes are not so much a spirituality as they are a geography. They are words that “tell us where to stand.”
Next week, at Hope Heals Camp, it will be easier than usual for me to stand in my own poverty of spirit and meekness. It will be easier for me to stand with those who mourn and those who hunger for righteousness. But for all of us, in our day to day lives, that’s the invitation…
To stand in the places of hurt and sorrow.
To stay with the parts of ourselves and the parts of those around us who need to be comforted, who cry out for mercy.
To imagine Jesus pronouncing a word of blessing on the ones who you most want to ignore.
To wonder whether there is peace and joy and love for you if, instead of walking away, you enter in.
Reimagining the Good Life`When our daughter Penny was born and diagnosed with Down syndrome, our imagination was shaped solely by fear. But over the past 18 years—through other parents, doctors, therapists, friends, and our faith—our imagination has instead been shaped by possibility. I want to share what I’ve learned with you!
So I created a four-session workshop that offers families affected by disability a way to envision and move toward a good future.I offered the first live, virtual workshop in May, and the response was so encouraging that we’ve been working behind the scenes to make this workshop available to more people!
Workshop registration will open NEXT week, with brand new options for you to choose from:Workshop (live, virtual) – Next cohort begins on September 18Online Course (self-paced)Video Teaching (group use)You’ll be one of the first to know when registration is open. Watch for an email next week!
I would love to hear from you. Leave a comment.
Read more posts like this over on my Substack.
MORE WITH AMY JULIA:
Creating Belonging Within FamiliesSometimes Holidays Are Hard for Kids With DisabilitiesPenny in Her Own Words: Camp PALS 2024Let’s stay in touch. Subscribe to my newsletter to receive regular updates and reflections. Follow me on Facebook , Instagram , and YouTube and subscribe to my Reimagining the Good Life podcast.
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July 15, 2024
Penny in Her Own Words: Camp PALS 2024
Penny, can you explain Camp PALS to people who don’t know anything about it? Who is it for?
Yes. Camp PALS is for young adults with Down Syndrome where they can make many new friends and create lifelong memories with them.
What does a typical day look like at PALS?
A typical day at Pals is the following:
Breakfast
Head off with your team to the first fun activity of the day
Lunch
More fun activities
Chill Time
Dinner
One more activity
Meeting and Reflection with team
What do you love about PALS?
I love the following:
Making new friends
Connecting with old friends
Creating lifelong memories
Do you think there would be any way for schools to learn from PALS?
Yes. They could learn the following:
Making connections
Including others
Realize what Is challenging for some people
Being more of an advocate
What was your favorite activity this year?
My top 3 favorite activities were:
Dorney Park
Dave and Busters
Karaoke
Can you tell me about the Congratulations project?
Yes. Every year with Pals summer and Holiday programs each peer and partner will get a chance to write a letter to an expecting mother and the child she delivers will have Down syndrome. To write about your life and simply encourage the mother to be positive about the outcome.
What would you say to someone who was considering being a volunteer or a camper at PALS?
If you want to become a volunteer at Pals, you need to be ready to hype your team up and stay close together.
If you want to be a camper at Pals, bring your positive energy and team spirit.
MORE WITH AMY JULIA:
Penny in Her Own WordsPenny in Her Own Words: Senior PromPenny in Her Own Words: What I Want You to Know About My LifePenny in Her Own Words: Senior TripLet’s stay in touch. Subscribe to my newsletter to receive regular updates and reflections. Follow me on Facebook , Instagram , and YouTube and subscribe to my Reimagining the Good Life podcast.
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