Summary: There are real differences between parenting and caregiving. Sara shares about the dichotomies of the responsibilities that we have and how those play out in our daily lives when considering traveling, hiring a babysitter and even just going to the grocery store. Noticing the differences in the roles allows us to give ourselves grace for this road we are on.
Key Moments:
[1:34] Parent diaper bag vs Caregiver care bag for a lifetime
[2:19] Parent babysitting vs Caregiver child care accommodations
[4:45] Parent to the grocery vs Caregiver grocery experience
[5:43] Parent vs Caregiver Vacations with special needs children
[9:14] Caregiving is tiresome and grace is needed
If you enjoyed the show:
Summary: There are real differences between parenting and caregiving. Sara shares about the dichotomies of the responsibilities that we have and how those play out in our daily lives when considering traveling, hiring a babysitter and even just going to the grocery store. Noticing the differences in the roles allows us to give ourselves grace for this road we are on.
Key Moments:
[1:34] Parent diaper bag vs Caregiver care bag for a lifetime
[2:19] Parent babysitting vs Caregiver child care accommodations
[4:45] Parent to the grocery vs Caregiver grocery experience
[5:43] Parent vs Caregiver Vacations with special needs children
[9:14] Caregiving is tiresome and grace is needed
If you enjoyed the show:
Ep. 154: Parenting and Caregiving Are Not The Same
If you do get to go on vacation, parents plan fun activities, and usually, they just do them. So, with a little planning, often as caregivers, we stay behind with the child with disabilities or special needs while the rest of the family spends a few hours or even the entire day enjoying an activity or destination. My family planned a beach vacation several years ago to celebrate our oldest son, Connors, graduating when he chose Bertil Beach. The first day, we went to the beach, and I overheard TJ, my son with disabilities, whispering to himself, "There are not a million ants crawling on my skin. It's only sand. There are not a million ants crawling on my skin. It's only sand."
Welcome to Take Heart, a podcast about creating space for connection, hope, and joy as a mom to a child with disabilities or special needs. We want you to feel connected and encouraged as we navigate this messy, emotional, joy-filled life together.
Hi, I'm Sara Clime. You're listening to episode 154. We're talking about what we wish we would have known at the beginning of this caregiving journey.
Personally, there are several key things I wish I would have known and accepted when I was first starting as a caregiver. First and foremost, I wish I would have recognized earlier that parenting and caregiving are vastly different roles. I love my children immensely. You would think I would have recognized the difference between caregiving and parenting my youngest son when he was diagnosed. But when I first became T.J.'s caregiver, it was like young parent Sara absorbed the parenting role into the caregiver role.
Parents understand that a lack of sleep and schlepping a diaper bag with everything but the kitchen sink will only last for a little while. Caregivers understand that it is part of their duties to schlep that stuff around, possibly forever. And a lack of sleep? Well, what sleep anyway? Some caregivers no longer understand the phrase getting a solid seven to eight hours of sleep per night. Then, if there are accidents, surgeries, hospital stays, medical episodes, and so on, then it could be weeks, if not months, before the caregiver gets to sleep in the same room as their spouse.
My oldest son got sick a couple of times a year, maybe. I took him to annual well-child checkups, vaccinations, and sports physicals. T.J., though, seemed to immediately need frequent visits to doctors, hospitals, therapy sessions, IEP meetings, clinical trials, advocacy, and educational conferences. Those aren't typical parenting duties. Those are caregiving duties. When I needed a night out with my husband for a date, pre-diagnosis, we hired a babysitter. Post-diagnosis, we asked for help so we could get a bit of respite.
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Having grandparents, aunts, or close friends watch our oldest son was simply a drop him off and plead that they didn't return him spoiled rotten. Dropping T.J. off was vastly different. It was more, here's a three-ring binder we call a care notebook. Here's a spreadsheet of medications and when he takes them. And it often seemed like we were moving him into their homes. That is if we went to someone else's home and not having them come to our home, because it was just easier than packing up the entire house.
Let's not talk about the lack of accessibility at other people's homes. For some of us caregivers, we don't just make a dinner and sit down at the table to eat as a family. Some of our children have feeding schedules that don't coincide with the typical family sit-down dinner. Then there are some of us whose children can't take the overstimulation of a kitchen in the midst of dinner preparation. The clanging, clattering, talking, the smells. So sometimes it means preparing and cleaning up the night before, once that child goes to bed or when they're in school.
Let's talk about extracurricular activities. That is if your child with disabilities or special needs can even participate. My oldest son wanted to play sports, so he did. Now, he didn't always play every sport well, but he eventually found out what he wanted to participate in and he stuck with it. Perhaps you have a child in clubs, band, or worship teams. Whatever the extracurricular activity is, as a parent, you most likely cheered them on, supporting them emotionally as they figured out their strengths, weaknesses, and passions.
Most of the time, until they turned 16 and drove to said activity, you were dropping them off and picking them up. Heck, I remember this time as my oldest son was at practice as a time I got to run errands. As T.J.'s caregiver, my husband and I learned how to advocate for him with organized activities. We petitioned boards to get certain activities, like scouting, changed to what he could do instead of expecting him to accomplish badges we knew were impossible for him.
Instead of dropping off children at practices and then cheering them on in the wind, snow, sleet, and 100-degree weather, like parents spend so much time doing, we as caregivers had to join forces with boards of directors, organizations, coaches, staff, and peers to get T.J. active in anything. And we had to stay. As a parent, your child wants to go with you to the grocery store. So they do.
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As a caregiver, you have to advocate for a disabled parking space that may have carts or even motorcycles parked at the blue lines. That is, if the actual disabled parking spot isn't already taken, that means your child in a wheelchair can't go into the grocery store. So, as a caregiver, you either circle the lot, get exceptionally creative at parking, or you simply go home and hope that whatever it is that you needed isn't necessary. Getting to go anywhere without a plan B or C, that is, if that place is accessible, your child has while it's near to impossible some days. But you don't know what's impossible, hunt to either spend 20 minutes trying to find alternate parking, just to realize there are curbs or other issues prohibiting access from that far off space. Or you can't even get the vans ramped down safely. Or you may get into the store only to be met with an epic behavioral, sensory episode in the middle of the produce aisle. Parents get to take vacations with the family. Caregivers have to plan in minute detail every aspect of their vacation with backup plans if accessible vans break down, an emergency happens, and we need a hospital, or we need a backup piece of durable medical equipment. Some parents can't take some of their children because of behavioral or emotional needs. And then, flying is one long praying session, hoping that whatever we had to check makes it back to us in one piece. All of that to say, there is a huge if when planning vacations.
Caregivers often don't have the resources to take vacations. Resources such as finances, time, energy, backup medical equipment, and so on and so on and so on, they are often in short supply. If you do get to go on vacation, parents plan fun activities, and usually, they just do them. Some with a little planning. For example, you go to the beach.
Parents walk out onto the beach carrying bags of towels, umbrellas, sunscreen, food, beverages, sand toys, or possibly life preservers of some sort. Caregivers bring all that while renting beach wheelchairs if the few available at that beach town haven't been rented. And if that beach town even has rentals. Along with the beach bags full of parenting items, caregivers worry about wrapping up breathing machines so sand doesn't get in them or any other crazy caregiving task regular parents don't think about.
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Granted, not all caregivers have to plan access, safety, and the overall physical ability of their child to participate. Often, as caregivers, we stay behind with the child with disabilities or special needs while the rest of the family spends a few hours or even the entire day enjoying an activity or destination. So, for example, my family planned a beach vacation several years ago to celebrate our oldest son, Connor, graduating high school. He got to choose the destination, and he chose Myrtle Beach.
The first day, we went to the beach, and I overheard TJ, my son with disabilities, whispering to himself, "There are not a million ants crawling on my skin. It's only sand. There are not a million ants crawling on my skin. It's only sand." And he kept repeating that. Well, immediately, I was like, this isn't going to work. So, beach vacation or not, it was a vacation where our oldest son got to choose, and we were celebrating him. Well, no matter why we were at the beach, T.J. and I immediately went inside, showered, put on different swimsuits and swim trunks. And then we went to the hotel pool while my husband and Connor stayed on the beach. That is vacationing caregiver style. That is not typical parenting.
Parents get to send their children off to college. They become empty nesters. Caregivers are torn between hoping they can become empty nesters and dreading it, all at the same time. We hope to retire and fear retirement.
Becoming empty nesters for some of us means putting our child in a facility, while some of us know becoming empty nesters means their child will no longer be with us on this earth. So while our friends are trying to find their new normal with an empty house, we are still packing bags to go places, not getting a full night's sleep, advocating for adult children to participate in anything society will allow them to, trying to get them a job without exceeding a threshold that would interfere with their disability rights and benefits and going to doctor's appointments, hospitals, therapies, and conferences so we know how to give care in the new stage we find our child in. So what would I say to younger Sara? I would say being tired and worn out from caregiving is natural. You are just fine. You are okay to not love this caregiving gig. That feeling is completely different from your mom role where you would do anything for your child. You would never sleep again if that meant your child would sleep and be comfortable.
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You would give up about anything for your child to self-regulate. You would move mountains and take on insurance companies, hospital board of directors, school administrators, bullies, and even the government just for your child to get the support they need and deserve. It's in those moments I would tell younger Sara to give herself grace. I may want to do anything and give up everything as T.J.'s mom, but I can't give up everything as his caregiver.
This is a long race. I am running a long and exhausting marathon. So we have to pace ourselves. We have to stop every once in a while and reassess what our body, mind and souls need. Oh sure, that's easier said than done. As a caregiver, we have to ask for support so we can give amazing care to our children. As caregivers, we don't always get breaks, but we are worth trying to get the support we deserve.
You are worse trying to get the support you deserve. I know it's one more thing to fight for, but I would tell younger Sara it's worth the fight in the long run. You are worth supporting. Once I settled in more to this concept, I would have given myself more grace when I wasn't 100% loving the caregiving aspect of my life. I would have recognized that I was thrown into the deep end, not knowing what end was up, and I would have let younger Sarah grieve the way she needed. I would have also started to take care of myself more when I learned to separate those roles. Obviously, caregiving and parenting roles do overlap, and they overlap often. But when they do, I would have told myself not to downplay or ignore the parenting. Just like other children, my son TJ needs to recognize that I have a life outside of him. Sure, part of that life is to care for him, but I also get to care for my other children, my husband, my family, and friends, and I get to care for myself. And I would tell young Sara that even if T.J. doesn't understand that all the time, it doesn't make it less true. Parenting as a caregiver can be a lonely place. Our other parent friends just don't get it. Our family don't fully get it. Even if they want to understand and they empathize with you. But unless you were a full-time caregiver 24 hours a day, seven days a week, 365 days a year, you just can't truly understand.
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So, as caregivers need to lean on each other, sure, we need non caregiver friends without a doubt, but we need other caregivers to speak truth into our lives as well. We need an older caregiver who's been there to say, Sarah, you can't do that all on your own, or you'll burn out. Or you are allowed to not enjoy this. That doesn't make you a bad mom. I could go on and on. The bottom line is that we need each other. No matter what our children's diagnoses are, we need each other so someone can say,
I get it. We need each other so we can feel seen, so we can feel heard, so we can feel loved, so we feel less alone. Thank you so much for listening to this week's episode. What is one way you can give yourself more grace as a caregiver? Take a moment to look yourself in the mirror today and say you are doing a great job. You are rocking this caregiver role. You don't love it? Well, that's okay. That doesn't mean you still don't kick butt at it.
What is something you wish you would have known earlier in your caregiver role? I'd love to hear it. Maybe it's something another mom and caregiver needs to hear, and we can share it here on our podcast. As always, we love your feedback and would love to hear from you. Please find us on Instagram at Take Heart Special Moms. Email us or leave us a comment on our website at take. If you haven't had a chance to check out our book, you can find it at your favorite online retailer. You can find links to those retailers at www.takeheartspecialmoms/books.