When My Daughter With Special Needs Felt Included at the Water Park

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Today, my aunt took us to a little water park. She called it the Splash Pad, so I assume that was its name. It was a flat, concrete area filled with fountains and all sorts of contraptions that sprayed water. My daughter, Namine, was very excited.

When we got there, I gave Namine the choice of staying in her wheelchair or scooting around. Scooting on pavement is nothing new to her — not to mention she prefers to move around on her own — so I helped her get down onto the ground.

I kept my distance at Namine’s behest. I wanted her to have fun, unhampered by a hovering dad. (I try not to be a helicopter parent.) Namine was so happy scooting through the water, splashing and playing, she didn’t even notice her ankle was bleeding. I don’t know if it was because her pain tolerance is high or if it was because she was just having so much fun, but she had no idea.

I didn’t notice right away, either. Because I’m colorblind, the pavement was the same color as the blood-tinged water. (It probably wasn’t to anyone else.) If Namine had shown some sign of being in pain, I would’ve noticed sooner. As it was, another child’s mom came up to me and told me that Namine’s ankle was bleeding. I went over to her, and sure enough, it was. So I picked Namine up and sat her on a bench.

Neither my wife, Jessica, nor my aunt had any bandages, so we thought we’d have to cut short our afternoon at the park. But to our surprise, several parents came up to us, offering Band-Aids. I dried off Namine’s foot and bandaged it, then told her she’d have to stay in her wheelchair for the rest of her time at the park. She was fine with that; she was just happy to be able to stay.

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What was it I wrote the other day about Namine being shy around people she doesn’t know? Apparently, she didn’t get the memo today. She wasn’t shy at all about going up to other kids and saying hi, running around with them across the park and generally having a great time.

Namine ran into a metal pole more than a few times due to having closed her eyes or ducking her head because of the water. Luckily, she never ran into a kid or over someone’s foot. (I can’t totally credit Namine with that, either; I did observe some kids darting out of the way of my daughter as she careened across the park, squealing with laughter.)

As much as Namine deliberately wheeled on through the waterfalls, I got just as wet. It’s a good thing I had my swimsuit on. I seemed to draw the fire from water-guns manned by kids eager to target a parent. Or maybe it was just that I was an adult who didn’t mind getting wet. Either way, Namine came to my rescue. She started to scold the kids spraying me until I explained to her it was OK. I didn’t mind. Well, after that, she joined in spraying me!

I was impressed at how the other kids included Namine. We’ve seen plenty of situations where some kids will include her, some will ignore her and some will be mean — either by pushing her out of the way or by simply saying insensitive things.

But not so today. Namine made a dozen friends today (even if she never sees any of them again) and had a great time playing in the water.

Paul Eiche the-mighty-07102015-003

Follow this journey on eichfam.net.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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.

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What This New App Will Do for People With Epilepsy

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Phil Gattone experienced his first epileptic seizure at age 4 in the middle of the night.

He went on to experience roughly 300 absence seizures a day, an unusually high number, until he had brain surgery and started medication when he was in first grade.

Between brain surgeries, Gattone lost his ability to speak. He had to relearn things that came naturally to other children his age, but because of his support system, he bounced back.

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“My friends and family encouraged me to do what I was passionate about and find things to take the focus off epilepsy,” Gattone, now 28, told The Mighty.

That passion was computers. He studied electrical and computer engineering at Southern Illinois University. Last April, at a hackathon — where teams work collaboratively to solve a challenge using technology — Gattone connected with a team of developers and designers, Elisha Phoenix, Nick Cowat, William Judd and Ross Chapman, and came up with the idea for a mobile networking site for people affected by epilepsy there.

“A lot of people struggle to find a support system, and that can make it really difficult to live with epilepsy,” Gattone told The Mighty. “That’s why we created Neurish.”

App users can create a profile, and the app will recommend similar people nearby, as well as offer a list of resources such as doctors and support groups.

“It’s not just a communication profile,” Gattone explained. “It’s a medium to get someone to physical resources that can help them even more.”

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Gattone hopes the app will foster mentorship within the epilepsy community and provide support to those affected by it, including friends, family and caregivers. He told The Mighty that many people don’t understand how common epilepsy is and that people with epilepsy worry about being judged for their seizures. One in 26 people in the United States will develop epilepsy at some point in their lives, according to The Epilepsy Foundation of America.

“There’s still a lot of stigma associated with epilepsy,” Gattone said. “We’re trying to erase that.”

Transportation is also an area he hopes to address with the app. Most states require drivers to be seizure-free for a period of time before they’re allowed behind the wheel. (Rules vary by state. Check The Epilepsy Foundation’s website for more details.)

Gattone and the Neurish team are currently working with a neurotech accelerator, Neurolaunch, and partnering with the Epilepsy Foundation of America to help make their big goals a reality.

“We feel really confident that we can help a lot of people,” he said.

Neurish is currently in development. Gattone estimates it will be available for free download for the iPhone by the end of 2015. Visit its website for more details.

Official Neurish Logo

h/t ARLnow

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

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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.

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

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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:

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

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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.

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

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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.)

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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.

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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”?

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