Don't call us heroes. Help us.
A conversation with two moms about caring for their disabled children
Thanks for reading and subscribing to “Made With Care,” a deep dive into the cultural roots of the care crisis and the transcendent might of care. I really care about care and so glad you do too. For more on the subject, check out my new book “When You Care: The Unexpected Magic of Caring for Others.”
NEWS: PAPERBACK COMES OUT ON APRIL 9! You can pre-order it here, and, IMHO, it makes a great gift for your mom friends, and moms, for Mother’s Day. It’s a way to say “you are awesome, you are doing something deeply interesting, meaningful, and essential to the functioning of the world. Your care is visible to me.”
On February 21, I was in Los Angeles for an event in honor of National Caregivers Day. It was at Chief, a women’s club and co-working space worthy of its address in the posh part of Hollywood and organized and hosted by parent-caregiver and disability activists Kelley Coleman (more from her below!) and Stephanie Bohn.
I sat on a panel with some amazing change-makers in the care world, including Tom Chiodo, producer of a new movie on caregiving for old, ill and disabled individuals co-produced and starring Bradley Cooper, and Jessica Patay, founder and executive director of We Are Brave Together (more from her below!).
The event was a fundraiser for the new Hilarity for Charity (Seth Rogan and Lauren Miller’s foundation) campaign to raise money for dementia caregivers impacted by the L.A. fires, and Domestic Workers United’s new campaign to support domestic workers also impacted by the fires. If you are able to donate, it’s a great way to feel part of all the good happening in the world right now.
The Most Invisible Caregivers
I have known Jessica and Kelley for a year now, and am in awe of their energy and big-picture feeling and thinking about being a parent-caregiver, which is the identity many parents with children with disabilities use. They’re also 10/10 community builders and we all have a lot to learn from them.
As a parent to two kids without a disability diagnosis, I was somewhat conflicted about writing a book that covers all kinds of care experiences, many of which are more demanding than mine. I could imagine readers thinking “you have no friggin’ idea, lady.” And I’m sure some did—but fortunately I haven’t heard from them. Everyone I have heard from who is in a more demanding care situation than mine has said something along the lines of “thank you for making my labor and love visible, and explaining how it became invisible in the first place.” Hearing that makes me feel the absolute best.
As a regular inhabitant of the care-verse, I have noticed how much the care conversation leaves out parent-caregivers. We tend to focus on professional caregivers, parenthood, or care for adult loved ones who are old, ill or disabled, and forget that for some parents, these categories are blurred. I really believe parent-caregivers are the most invisible caregivers of an already invisible group, and the first step to erasing invisibility is to listen to the invisible. Which is what I did, and you too can do, below.
These women are sensitive and smart visionaries, and it is an honor to get to share them with you all.
Below you will find my interview with:
Jessica, founder and executive director of We Are Brave Together, embodies resilience and compassion in her mission to support caregiving mothers worldwide. She is also the author and editor of Becoming Brave Together. Longer bio below.
Kelley is an author, advocate, speaker, and caregiver, with over a decade of experience advocating for and supporting caregivers and individuals with disabilities. She recently published the book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports. Longer bio below.
ELISSA: Let’s start with my favorite kind of story, care stories. Tell me who you care for.
KELLEY: I’m a parent and a caregiver. Some days they feel like the same thing, and other days they’re vastly different. Our two boys are 13 and 11, and our younger son has multiple disabilities. He requires full-time care and I’m his primary caregiver. He also loves airplanes and swimming, and is dazzlingly handsome.
JESSICA: I say that Ryan, now age 21 is the one who made me a caregiver. He was diagnosed with Prader-Willi syndrome at 5 weeks of age. He is absolutely amazing…and exasperating at times. He has changed me forever, and I am grateful for that.
ELISSA: What do you wish parents of non-disabled children better understood about caring for a disabled child?
KELLEY: I wish that parents of non-disabled children understood that being a caregiving parent is a rollercoaster. I happen to love rollercoasters … but when you’re on a rollercoaster all day every day for years, it can be a lot.
We need other parents to keep showing up for us, even when we don’t return calls or go on playdates. We need you to ask how we’re doing and to listen to the real answer. We need you to walk over and join us when everyone is playing together, but we’re on the sidelines with our kid who isn’t able to join in. We need to never hear “I could never do what you do.” Yes, you could. You’d do it because you don’t have a choice. You love your child, so you’d do exactly what we’re doing if you needed to. Also, if you want to be helpful and are at a loss, buy us a fancy coffee. We could use that.
We need you to walk over and join us when everyone is playing together, but we’re on the sidelines with our kid who isn’t able to join in. We need to never hear “I could never do what you do.” Yes, you could. You’d do it because you don’t have a choice. You love your child, so you’d do exactly what we’re doing if you needed to. Also, if you want to be helpful and are at a loss, buy us a fancy coffee. We could use that.
JESSICA: We are strong, brave, resilient, AND WE NEED HELP. This is not a one person job! Please see me and offer help. Extreme and extraordinary caregiving has made me a better human, and…I am TIRED. There are days I wish I could just be Ryan’s mom, not his caregiver.
Ryan will need 24/7 care for the rest of his life. While my love for him is as vast as the ocean, the long haul of caregiving is daunting for me, and for his siblings who will be responsible for him when my husband and I are gone. We need more systems, services and supports, nationally, for all caregiving parents and disability families. This altered parenthood journey is expensive, and while I am grateful for our family’s resources, my heart aches and screams for all the families barely surviving financially, mentally and emotionally.
ELISSA: What are one or two things you wish you could change about your caregiving today?
KELLEY: So much of my caregiving time ends up being spent on the endless paperwork—school, insurance, social services, and more. I wish I could spend my caregiving time just being with him and having fun as a mom. I look forward to the time with my son, even on the exhausting days. The paperwork, not so much. And I’m weirdly good at that part. Every time I sit down to have a paperwork day, I think about how the systems feel like they’re designed to make caregivers just give up. I know many who do. They’re just so overwhelmed, and I get that—deeply. I wish that the systems were designed and run by the people using the systems.
JESSICA: Ryan is about to exit the school district and the future puzzle we must put together to create a meaningful life for him is overwhelming. His rare disease requires him to be watched 24/7, and it makes finding a high quality day program and employment opportunities difficult.
If I had some wishes, I would wish for more adult programs and services that infuse joy, purpose and meaning, while keeping Ryan safe and stable of course, not just offer a glorified babysitting situation. I would give every disability family the financial and educational support they need: to care for their loved one, and to preserve their own mental health, marriages, relationships, and careers.
ELISSA: What are one of two things you would NEVER want to change about your caregiving today?
KELLEY: The fellow caregivers you connect with along the way are everything. The solidarity and community you find with others going through a similar experience gives you the energy to keep going. There’s a deep understanding that comes with having walked this path.
We also value the care recipient, and the connection we have with those we care for is enormous. As my son gains independence, we are involving him more and more in his own care and life decisions. That’s what you’d do for any child. But, because he will need care his entire life, we are making him a partner in that care to the fullest extent possible, even with his high support needs. Looking at him as an active part of his care—even in the smallest ways—makes the care that much more rewarding, because it’s an opportunity for him to grow into the best version of himself, not in spite of his disabilities, but with all of the parts of him taken into consideration.
JESSICA: I am who I am today because of Ryan and this crazy-beautiful caregiving journey.
I would not change the fact that caregiving enabled me to shift from WHY ME to WHAT NOW, which is why and how I created We Are Brave Together. I would add that the power of community had been forever cemented in my heart, soul and body, and I want that for all human beings.
ELISSA: If you could wave a magic wand and change one or two policies related to caregiving for disabled children right now, what would they be?
KELLEY: I wish for that magic wand every single day. First, all caregivers and disabled individuals (children and adults) would have healthcare coverage, without ever having to wait on a waitlist.
Second, paid care would be an automatic benefit, available to all who need caregiving above and beyond what a non-disabled child would require. Many parents have to leave the workforce to care for their disabled child. They do it with love and pride. And, they shouldn’t be expected to do that for free. Everyone still needs to put food on the table. I know too many parents who are struggling financially because the high level of their child’s care needs doesn’t allow them to work.
JESSICA: Everything that Kelley just said.
I would add that all caregivers would have the many (many!) resources they need to keep their mental, emotional and relational health intact. Access to coaching and therapy and respite and weeks/weekends off from caregiving SHOULD NOT BE A PRIVILEGE.
ELISSA: Any specific actions people might take today on the policy and culture change front?
KELLEY: We are at a crucial moment in time when major cuts to federal funding will have far-reaching impact. Everyone either uses Medicaid or knows someone who does. Call your elected officials, tell them your care story, and tell them that you are calling for zero cuts to Medicaid. Tell them you are a care voter, and ask them specifically what their policies are on care. Today I cried with a mom who’s scared her son’s seizure medications won’t be covered. She can’t afford them if they’re not. This is very real.
JESSICA: Honestly, this is not my wheelhouse. YET! Our organization's focus has been to educate caregivers on: true-self-care, the power of community, tools to incorporate into mental health practices, and having organic mentors to help them navigate the altered motherhood journey.
Our podcast focuses on storytelling, and offering practical and inspirational resources for parents. We have not yet delved into policy and law and activating changes in the many broken systems in our country. Someday, I hope to have an arm of We Are Brave Together dedicated to exactly this. I would encourage people to look to orgs like Caring Across Generations to be a part of their Carer Fellowship program and to take in the reliable information they are sharing and publishing.
ELISSA: If you could wave a magic wand and change one or two things about the way our culture views caregiving for disabled children right now, what would they be?
KELLEY: I like this magic wand of yours. I wish our culture had a fully inclusive view of the caregiving and the disabled children. It’s hard to separate the cultural view on parent caregivers from the cultural view of disability. We aren’t a tragedy and we aren’t an inspiration. Neither are our children. The tragic/heroic narrative needs to change. We need to truly value caregiving and we need to truly value disabled individuals.
My worth, and my child’s worth, doesn’t come from fitting into a box or fulfilling someone else’s expectation. We are all worthy just because we are here. We all contribute. All of our contributions are equally valuable.
Caregivers need to recognize their own value as well. So many of us feel like we aren’t doing enough. So many people have said to me they wish they had the energy or time or capacity to write a book. But, it turns out by writing a book, I was doing the exact same thing as all my caregiver friends: I was doing everything I could. That’s what I could do. And on the days when all I could do was feed my kids and change diapers, I need to allow myself to be proud that I did that. For the record, those are most days.
JESSICA: I would change the attachment of worth to someone’s contributions or abilities or achievements or employment. If we truly valued all human beings equally, for well, just existing, and not what they do or don’t do, we would be a more loving and accepting society. A more loving and accepting society would not view disability with pity, shame, and disappointment. If that were the case, parents would probably not be so devastated when a diagnosis is delivered.
I would change the attachment of worth to someone’s contributions or abilities or achievements or employment. If we truly valued all human beings equally, for well, just existing, and not what they do or don’t do, we would be a more loving and accepting society. A more loving and accepting society would not view disability with pity, shame, and disappointment. If that were the case, parents would probably not be so devastated when a diagnosis is delivered.
ELISSA: I think because we are such a disability- and dependency- phobic society, and parent-caregivers are so isolated, many people have little experience talking about disability or knowing the right way to offer help.
Can you give readers a few tips on how someone might approach you? Or be of help?
KELLEY: Everyone needs to be in community with disabled people, and to learn about disability from disabled people. That changes the narrative. Start by following disabled creators and leaders online. Follow organizations run by and for disabled folks. You’ll see the true narrative when you’re learning from folks with firsthand experience.
JESSICA:"I see you have a son with a disability. He is so handsome. May I ask his name? About his journey? About your journey? What has parenthood been like for you, if you feel like sharing?"
I am an open book, so this approach would not bother me at all. That anyone would approach us would be refreshing.
"Hi Jessica, I know we don't know each other very well yet, and I wanted to offer my support and help. I can imagine that parenting Ryan requires a lot of time, attention and advocacy. I would love to support you in some tangible ways. Can I bring a meal or help with any errands? Could I take Ryan out for a walk while you rest or attend to your other kids or tasks?"
Please avoid saying "I'm sorry" or cliches like "God doesn't give you more than you can handle" or "You must be pretty amazing and strong then..."
Or "I couldn't do what you do." If you had NO CHOICE, you WOULD DO what I am doing. Parents rise up because we love our children and we will not abandon them. It does not make it any easier, but we do what must be done.
Or "I couldn't do what you do." If you had NO CHOICE, you WOULD DO what I am doing. Parents rise up because we love our children and we will not abandon them. It does not make it any easier, but we do what must be done.
Offer something specific to do for another parent ( to do laundry, run errands, do chores, do the pharmacy runs) vs. saying "let me know if you need help" or "let me know if there is something I can do." That is too overwhelming for a caregiver to then have to figure out HOW or WHEN you can help.
ELISSA: Let’s end with a discussion of language. I’ve heard from some parent-caregivers that they don’t like it when all parents are called caregivers—to them, that label marks a clear and important distinction that they want recognized.
KELLEY: Language nerd here, who has learned a ton on my journey, largely from listening to disabled folks. Here’s what I’ve learned: Language is always evolving. And it’s messy. We need more words. Caregiving is vast. There’s not a perfect way to capture the experience, whether or not your children are disabled. One of my children is disabled and one is not. I get it. The parenting experience is wildly different. We all provide care for our children. So, let’s start from there.
Anyone who wants to call themselves a caregiver, I’ll happily welcome you to the care community and give you a list of elected officials to call about care policies. Odds are if your children don’t have the support needs mine does, then you’ll have some extra time to contribute. If you call yourself a caregiver, welcome to the club, and let’s move the needle for all of us.
JESSICA: I guess I don’t necessarily mind if all parents are called caregivers. And yet, I DO want parent caregivers of disabled children, teens or adults to receive the acknowledgement, support, help and care they need and deserve. We feel marginalized and forgotten. Who takes care of the caregiver? Oops, that is another topic!
ELISSA: In many ways we are just at the beginning of talking about care in meaningful ways, and figuring out how to do it. There is so much work to do.
KELLEY: We need to start with viewing caregiving as a job. Ideally, there would be policies in place that support the job of caregiving. The challenge I always find with the term “care” is that it’s historically seen as something that people (most often women) do for free.
If we could change the culture, we would not need to change the language. But it turns out that both culture change and language change can be an uphill battle. I think now would be a great time to grab that magic wand of yours to just fix this. Too many people don’t think about care as a job until they (often suddenly) need care or need to provide care. Care impacts all of us.
Too many people don’t think about care as a job until they (often suddenly) need care or need to provide care. Care impacts all of us.
JESSICA: PREACH Kelley!! I guess because I want more recognition and support and policy changes for caregivers worldwide, and I want value placed on caregiving, I don’t think of everyone as a caregiver. I do see a distinction. If your caregiving role and responsibilities require such daily vigilance, advocacy, and expense, or leads to isolation and potentially increased depression and anxiety, well that is the caregiver- life. That is not the risk or cost to everyone who cares. Everyone’s hard is their hard, but all caring is not alike.
ELISSA: Thank you both!!
Jessica Patay, founder and executive director of We Are Brave Together, embodies resilience and compassion in her mission to support caregiving mothers worldwide. Drawing from her own experiences raising a child with a rare genetic disorder, Jessica launched We Are Brave Together in 2017 to empower, strengthen, and educate caregiver moms in their diverse and difficult journeys. Since then, the non-profit has gracefully provided in-person and virtual support groups, workshops, retreats, an inspirational and resourceful podcast, for a growing troupe of almost 3,400 caregiving moms across all 50 states and 27 countries.
Kelley Coleman is an author, advocate, speaker, and caregiver, with over a decade of experience advocating for and supporting caregivers and individuals with disabilities. Her recent book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports was named NPR’s Book of the Day, has been a Top 100 Parenting Book on Amazon, and is being used at various organizations as the foundation for building parent caregiver resource programs. She lives in Los Angeles with her husband, two boys, and her son’s amazing service dog.
Such an important conversation Elissa.
I love this conversation! So many good, insightful, compassionate, loving thoughts and ideas. Thank you!