5 Tips on Being Good to Yourself, From One Special Needs Parent to Another

367
367

Lately, it seems self-care has become a buzzword. We all realize its necessity and purpose. But we also need the mindfulness to know what it looks like for our unique situation. To know what it looks like for you, you’ve got to slow down long enough to know yourself.

My self-care has changed drastically since having a second child four years ago. What worked and made me happy then doesn’t fit the bill today. What was once enjoyable — window shopping or maybe a spontaneous trip to a theme park — literally makes me cringe when I think about it today. I’m a greatly variable entity and, chances are, so are you. So stop right now and ask yourself, “Who am I?” You might be surprised at what you find.

Once you know who you are and what’s most important to you, explore your self-care options. Hint: If you don’t enjoy it, it probably doesn’t count as self-care. Other than that, there are few rules in this area. Your budget, whether and how often you are able to find trusted care for your children, your time constraints, your work schedule — all these things are factors, but ultimately, you choose.

Still balking at the whole self-care phenomena? Here are a few tips to send you in the right direction:

1. Self-care doesn’t have to cost money. 

We run a family budget so tight, it squeaks. Frankly, spending cash on myself when I know it’s straining our budget elsewhere doesn’t relax me. Other than an occasional McDonald’s latte or trip to the local discount store for a dollar bottle of nail polish or lipgloss, I tend to steer clear from self-care that costs money.

Some argue that errands aren’t self-care. But for a mom who has a child with autism and has been through a grocery meltdown, I can say with confidence that a grocery trip made alone with a coffee in hand can feel like total liberation. Whether you choose to leave the house or stay in, being good to yourself doesn’t have to strain your budget.    

2. Self-care can happen at home. 

I’m not good at leaving my kids. The only people who have ever babysat for us are immediate family members, and this only happens two or three times a year. As much I’d love to go out with my husband or even alone, sometimes it’s just not worth the stress. More often than not, daily self-care for me is getting to do my nails without interruption or sitting down to eat my dinner before calling the kids to eat. That may sound grossly simple, but you’d be surprised how relaxing it can be to sit and eat an entire meal without having to assist someone, cut up food, clean up spills and run for extra napkins half a dozen times before sitting down to your own (now cold) plate.

3. Self-care is not selfish. 

Becoming a parent doesn’t exclude you from anxiety, depression, stress or frustration. You’ll get angry with your children, your spouse and yourself. You’ll feel overwhelmed and under-assisted. More than once. You’ll feel no one in the entire world understands just how exacting and tireless the demands on your life can be. This is normal. In fact, I would raise an eyebrow at anyone who claims to have never felt this way.

Self-care is necessary for your mental, physical and emotional well-being. It’s not selfish to take a soaking hot bath when you’ve been carrying a colicky infant for more than 6 hours a day to lessen their screaming. It’s not selfish to send your wild and sugar-hyped kids outside to play so you can read a chapter of your book in the quiet.

4. Special needs parents’ self-care may not look like self-care at all. 

Getting groceries alone? Sitting down to eat dinner? Painting your nails? Getting a three-dollar coffee? Yes, I realize these probably don’t count as self-care to some people. I know a few parents with typical children who have their kids go to the grandparents for the weekend, go out for drinks after bedtime or get massages with their girlfriends. That’s great. This is self-care. More power to them! 

For me (and many of the special needs parents I know), these things aren’t always, if ever, possible. My child’s anxiety won’t allow them a sleepover with Grandma. For some, maybe respite care can’t come past 9 pm. Maybe they’ve had to pay co-pays and buy therapy equipment, and there’s just no money left for a deep-tissue massage (no matter how badly they could use it). Self-care is unique to the individual. Just remember to respect what it might look like for others.

5. Self-care can mean relationship care. 

This one is for all types of relationships: spousal, significant other, mother, father, sister, brother, etc. I talk. A lot. My husband does not. But he understands my need for verbal expression and listens and talks to me. He encourages me and validates my capability. It’s extremely likely he’s on the autism spectrum and verbal communication is not his favorite. I feel privileged and valued when he takes the time to talk with me. 

In turn, I try to communicate his way. I make an effort to do things that may not be priority for me, but matter to him. Most importantly, I do them not out of a sense of duty or obligation, but out of respect, caring and love. I want to build him up and validate his capability as he does mine. We are individuals with many differences, and we make a point to highlight the good in each other. Take advantage of your support system, whatever form it may come in. These people love you. Let them. And return the favor.

Lauren Cockrell the-mighty-07102015-002

Follow this journey on Where’s Mommy’s Coffee?

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

367
367

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Baseball Star Without Right Hand Shows the Boys Why They Shouldn’t Underestimate Her

461
461

Brittany Apgar isn’t like most of her teammates. The 11-year-old has played baseball with a team of boys since she was a toddler. But that’s not the only thing that makes Apgar special. She’s a terrific pitcher who was born without a right hand.

Apgar plays in the Greensboro’s Parks and Recreation “Bronco Divison,” and she’s on all-star and travel teams in Greensboro, North Carolina, according to NBC. The seventh grader bats with a prosthesis, and with the help of her dad and coach Tom Apgar, she’s adapted a pitching technique from Jim Abbott, a one-handed professional baseball player.

“It was a goal to get people to accept me for who I am and to know that they won’t take me for anybody different,” Apgar told NBC.

Check her out in the video below:

461
461
TOPICS
,
JOIN THE CONVERSATION

This Woman With Down Syndrome Is Paving Her Way in the Fashion World

1k
1k

Laura Green has always had a passion for fashion.

The 28-year-old with Down syndrome also has an eye for business. Now, she’s found a way to combine her interests — she started her own business selling fashion accessories.

Green, who lives in Cheshire, England, completed some college focusing on business and retail, but had to leave early because she was bullied, she explains in the video produced by The BBC below. After spending some time looking for jobs to no avail, she decided she’d had enough. That’s when she went on to pave her own way in the fashion world.

“I would say it’s very successful,” Green, who describes her style as “glitz and glam,” says in the video below. “I would say I’m living the dream.”

To hear more of Green’s story, check out the video below.

Related: He’s 23, Blind, Nonverbal. And He Started His Own Business.

1k
1k
TOPICS
JOIN THE CONVERSATION

Why My Life as a Cancer Survivor Feels Like a Ticking Time Bomb

5
5

Sometimes I feel like a ticking time bomb. I know I shouldn’t, but sometimes — late at night, when I can’t sleep — I do.

I know it’s better to think positively, and I’m pretty good at being my own personal cheerleader. But two years and counting since my breast cancer diagnosis and surgery, and 18 months after post-chemotherapy, I can’t help but think. I can’t help but overthink.

I’ve taken all the precautions. I’ve become more conscientious about my diet and exercise. I take Arimidex every morning to keep the estrogen level that originally fueled my cancer at bay. I take lots of vitamins. But still, that’s no guarantee.

I go for checkups when I’m supposed to, every three months to the oncologist and every six months to the breast surgeon. I go to support group meetings to bolster myself. I try to get enough sleep, despite the occasional night spent wide-eyed with dread.

I don’t have any symptoms, but I didn’t have symptoms when I was first diagnosed. I couldn’t feel the lump — smaller than a dime — even after it was pointed out to me. It turned out I had not one, but two types of breast cancer (DCIS — ductal carcinoma in situ — and invasive carcinoma). When my surgeon very prudently removed the entire mass during the biopsy, the margins still weren’t clear. Then I had a mastectomy with a chemo chaser for three horrific months, just to be sure they got it all. (P.S. They did.)

Cathy-Brown-the-mighty-06092015-003-750x561

For the most part, I feel confident. I’m a one-woman breast cancer survivor pep squad for others, as well as for myself. I proudly flash the cherry-blossom tattoo I got more than a year after my surgery to mask my pancake-flat left side and cover my mastectomy scar when reconstructive surgery failed.

But, in the back of my mind, there’s always that “what if.” What if it comes back?

If you’re diagnosed in Stage 1, like I was, the stats show your chances of recurrence are only 14 percent. Only. At first glance, that seems like pretty good odds — until you imagine standing in a roomful of 100 women and picture 14 of them disappearing.

Mine is not an idle fear. It’s a reality. It seems like every other day I hear about breast cancer recurrence, or worse, someone dying after their second bout. A family friend I grew up with. My haircutter’s mother. A neighbor. When breast cancer comes back, it comes back with a vengeance. Oftentimes, it isn’t discovered until Stage 4, already metastasized into the bones, lungs and beyond.

The five-year cancer-free anniversary is a huge milestone, but for many estrogen-positive women faced with recurrence, if it comes back, it generally returns right under the five-year threshhold. Will I be one of them? There’s no way of knowing.

But instead of curling up into a hard ball of anxiety, I’m doing just the opposite. I’m throwing myself into my work and writing at a breakneck pace. At 55, there are so many things I still want to do, so many stories I need to tell. I want to live to see my son graduate from high school, from college, dance badly at his wedding, hold my first grandchild.

When I wonder if I should get those crazily expensive Patti Smith tickets (she’s not getting any younger and neither am I), I usually just say, “Screw it!” and go for it, remembering how simultaneously drained and wired I felt getting a chemo infusion, how I promised I would deny myself nothing if I lived through this.

Sometimes I feel like I’m dancing as fast as I can, trying to outrace cancer in case it tries to visit me again. Maybe this time I can outsmart it. Maybe this time my body won’t be such an agreeable host.

I try not to live in worry. I try not to dwell on it. But there are times when I feel like a ticking time bomb. I guess I always will. But that’s better than the alternative — having the time bomb explode and not being here at all.

cathy-brown-mighty-chemo-conquer2-04102015-

This story by Catherine Gigante-Brown first appeared at ravishly.com, an alternative news+culture women’s website. 

More from Ravishly:

25 Pieces of Advice for Anyone Going Through Chemo

After Losing Three Sons

Why Do I Get to Be “Cancer Girl”?

5
5
JOIN THE CONVERSATION

The Day a Bodybuilder Came to My Aid

48
48

Growing up with cerebral palsy, my entertainment options have always been limited by the need for accessibility, but one thing I’ve enjoyed since childhood is going to the movies. Watching VHS tapes and DVDs at home is fun, but nothing beats sitting in a large, darkened cinema, eating popcorn.

While in high school, I spent many Saturday afternoons at the small movie theater near my cousin’s house. Sure, the releases were weeks (sometimes even months) behind the larger corporate theaters, but the staff always treated me with kindness and respect, happily pouring my drink into a bottle so I wouldn’t have to worry about squeezing the polystyrene cup too tightly. This particular request sounds simple, but it was often refused in other places because using bottles, regardless of the fact that they were exactly the same size (we measured), was “against the rules.”

Looking back on those times, one specific Saturday comes to mind. I can’t recall what we saw that day, but I do remember riding the elevator (or as we call it in South Africa, the lift) to the three-story shopping center’s second floor, where the theater was. After the show, we said goodbye to the woman in the ticket booth and headed back down the hallway, only to find the lift was now out of order.

As usual, our car was parked in the disabled bay on the roof and without the lift, the only way to get there was to climb two large flights of stairs. Being slowly hoisted upstairs in a manual wheelchair is something I avoid whenever possible, especially if it has to be done by one person. I find the experience deeply unpleasant because it must be done backwards and I’m fully aware that if the unfortunate hoister slips, I’m bound to get hurt somehow.

On that Saturday, we had resigned ourselves to this fate when a woman with a young daughter arrived and quickly realized our predicament. After thinking for a moment, she had the bright idea to go to the gym across from the theater and ask for help. (Why we didn’t consider that, I’ll never know.) Soon after, a friendly and rather muscular young man appeared. He said, “I’m not quite sure how to help, but just show me what to do.” Instead of doing the “backwards chair shuffle,” he and my cousin carried me to the roof and put me back in the chair once it had been brought up behind me by that wonderful woman.

I never did get the names of either the quick-witted mother or the helpful bodybuilder, but I’ll always remember their actions when I or someone else with a disability need to be reminded that many able-bodied people do care enough to help us when we need it most.

lachlan nicholson the mighty

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

48
48
JOIN THE CONVERSATION

These Artists Prove You Don’t Need 46 Chromosomes to Create Stunning Art

2k
2k

One organization is ensuring the world gets to see some incredible art created by people with Down syndrome.

After Suzie Moffat’s son, Max, was born with Down syndrome in 2007, she became increasingly fascinated with the creative nature of people with the condition. With a background in the art world, it made sense that Moffat, from Cheshire, in Northwest England, began to interpret this new perspective on the world through art.

“It was my way of trying to understand his condition,” Moffat told The Mighty.

Suzie & MaxMoffat
Suzie and Max Moffat (copyright Paul Moffat Photography)

She began working with the Down Syndrome Association in the United Kingdom to put a call out for artists.

“The idea originated just as a way to meet other families,” Moffat told The Mighty. “But, then I started to realize the talent was incredible and the artists deserved to be recognized.”

So Moffat and her partner, Paul Moffat, put together a small public preview exhibition in 2012. It was a success, and Heart & Sold was born.

Since then, Heart & Sold’s public acceptance has continued to grow — the Duke and Duchess of Cambridge even accepted one of their original works of art for Prince George’s nursery in 2013.

Heart & Sold’s goal is to support and encourages all kinds of artists with Down syndrome, from photographers and filmmakers to various types of visual artists and sculptors. Its staff works closely with the artists and their caregivers and are often thrilled to see them go off on their own to host successful solo exhibitions and receive commissions.

Screen Shot 2015-07-10 at 10.15.12 AM
Suzie Moffat with Heart & Sold artist (copyright Paul Moffat Photography)

The organization continues to grow — this fall it’s putting on exhibits in London and Manchester, as well as hosting its first international exhibition in New York City in October.

But despite all the exciting progress, Moffat says it’s really all about the art. Art, she says, that can stand on its own merits and doesn’t need to be defined by the condition of the person who created it.

“At the end of the day, who made the art, whether or not they have Down syndrome, doesn’t matter,” she told The Mighty. “It’s whether or not you want to put it on your wall.”

Check out some of the Heart & Sold artwork and artists in the images below: 

'Dollar Pancakes', photograph by Rachel Handlin
“Dollar Pancakes” photograph by Rachel Handlin (Copyright Heart & Sold on behalf of the artist)
Sunset & flowers, Cornwall
“Sunset & flowers, Cornwall,” acrylic painting by Tazia Fawley (Copyright Heart & Sold on behalf of the artist)
Dominic Bennett, Artist
Dominic Bennett, Artist (copyright Paul Moffat Photography)
Aurora Freeze, acrylic painting by Anthony Childs
“Aurora Freeze” acrylic painting by Anthony Childs (Copyright Heart & Sold on behalf of the artist)
Robert Dixon, Artist
Robert Dixon, Artist (copyright Paul Moffat Photography)
Sonic Screwdrivers, Ceramics by John Groarke
Sonic Screwdrivers, Ceramics by John Groarke (Copyright Heart & Sold on behalf of the artist)
unnamed-1
Amy Ellison, Artist (copyright Paul Moffat Photography)

 

Check out the Heart & Sold website for more information on upcoming exhibitions, or to learn more about the artists. 

2k
2k
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.