9 Tips for Keeping the Romance Alive in a Relationship

by Alicia Krage

Two years ago Alicia Krage wrote a guest post for our Easterseals national blog about some of the challenges and joys of being – and dating — someone who’s blind. She and Joe are still together, and I asked her if she’d be willing to write a post for Valentine’s Day with advice for others on how to keep a long relationship like theirs stay strong. Lucky for us, she said yes!

Ali and Joe.

by Alicia Krage

In the spirit of Valentine’s Day, I’m writing a post that focuses less on my disability and more on the foundation of the relationship that my boyfriend Joe and I have built. Joe and I have been together nearly three years now, and I’ve learned a lot of things during that time.

As it goes with any relationship, we’ve had our ups, downs, and obstacles. And we’ve had to make compromises. Over the years I’ve used what I’d learned from previous relationships to strengthen this one. Some of the things I learned were simple, some were difficult, and today I hope my nine tips might help readers who are in a longer relationship keep it going:

1. Prioritize and make time for each other. You’d be amazed at how little time Joe and I get with each other sometimes. There have been plenty of days when we were both so busy that the only time we saw each other was when we had dinner together at the dining hall for about 30 minutes. After that, it was back to schoolwork. Once things calmed down, we used our next free day to do a date night. Dinner, a movie, or sometimes we’d just have our own game nights here in the dorm. The goal is always the same: quality time together.
2. Remember that while you are partners, you are also friends. Having known Joe for seven years now, it’s weird to picture a time when he wasn’t in my life. Something that has always been a comfort to me is that we were best friends first. Date nights are fun, keeping the romance alive is important, but I also think it’s important to remember that you’re also friends. I love those moments that remind me that he’s honestly and truly my best friend in the entire world, and there’s nothing I can’t tell him. Heart to hearts at 1am will always be one of my favorite things to share with Joe.
3. Relationships are not always sunshine and rainbows. Relationships are hard and they take work. I’m usually the type of person that wants to solve things as soon as possible when we’re in a fight — I really hate going to sleep sad or angry. But sometimes it happens. Taking time to breathe, to calm down, and wait until you’ve worked out what you want to say before talking things over (without shouting) is much more effective than trying to solve it ASAP when your words aren’t coming out right.
4. Communication is key. Since we are both blind, I feel like this is even more important. We can’t look at the other person’s face right after we’ve said something to see their reaction, to know if they’re offended, or if something’s just not okay and they’re having a bad day. We need to communicate these things, because otherwise we literally have no way to know.
5. Encourage one another during new or challenging experiences. Joe and I have gone to a lot of new places — some local, some not — and it’s nice when one person is more encouraging and has a positive attitude about it. Whenever Joe has an idea of going somewhere or doing something new (the first time we went to the movies, for example) I’m always a bit nervous and instantly start worrying about what will go wrong. Joe always says the same thing: “We’ll figure it out.” I can hear the smile in his voice when he says this, and it’s all the assurance I need. There will be obstacles, but we’ll figure them out as we go.
6. Don’t just be comfortable with one another and slip into the same day-to-day routine. Surprise one another with things. Occasionally, when I’m picking up a cup of coffee for myself from Dunkin Donuts, I’ll grab a hot chocolate for Joe on the way out. Sometimes Joe comes back to the dorms with Culver’s custard for me. It’s nice to know that while you’re off doing your own thing, someone else is thinking about you.
7. Balance is key. You can have your own life and your own friends, and you should also want time to yourself. You should unapologetically want that extra space. Sundays are typically that day for me – homework at a coffee shop in the morning, relaxing in the afternoon, and then we usually meet up later in the evening for dinner at the dining hall. We need time to ourselves. Time to ourselves is important.
8. Be spontaneous. Don’t go to the same places all the time – try something new. One morning Joe and I went to a bagel shop that I discovered online — I’d read good reviews about it on Yelp. Now we go there on Saturdays. Not every Saturday, but on Saturdays when time allows.
9. Bring back some memories sometimes. Joe and I have had a lot of time together, and it’s nice to take a trip down memory lane. I still remember the precise day we had our first date (March 28, 2015) and where it was (IHOP). Now, every year on that same day, we have dinner at IHOP just like we did that night. Of course it’s different now, but it’s nice to go somewhere that brings back memories and takes us back to where it all began.

More posts by Alicia:

• How One Student Who is Blind Planned the Perfect Date
• “Dating someone who is blind is honestly not as hard as it sounds”
• Do I prefer to date people who are blind or not?

The Nora Project Connects Students With and Without Disabilities

by Beth Finke

My Seeing Eye dogs and I have visited dozens of elementary schools over the years that pair average kids with students who have disabilities in “buddy” programs. The school Whitney and I are visiting today takes that idea one step further.

At Glen Grove Elementary in Glenview, Illinois, students are paired with a fellow student who has a disability, but then these fifth-graders interview family members and others who spend time outside of school with their “buddy,” too. The students use iPads to record video of those interviews, and by combining them with video of their own interactions with their buddies, they create documentaries presented at the end of the school year.

The idea is the brain child of Glen Grove fifth-grade teacher Amanda Martinsen, who was awarded a Human and Civil Rights Award from the Illinois Education Association for a project the IEA described as “life-changing for students with conditions that sometimes make it difficult for them to connect with others.” A story from the Chicago Tribune explains:

“The Nora Project grew out of Martinsen’s concern that students like her cousin’s daughter who have Down syndrome, cerebral palsy, autism and a host of other medical conditions often experience difficulty making connections and friendships with other students in school.

Martinsen said she agreed that the project has been “life-changing” for many students, but not just those with special needs.

‘The change we’ve seen from students is they’re so much more aware of kids with special needs that are different from them,’ she said. ‘They are so much more accepting.’

One student said she had heard the term Down syndrome, but didn’t know what it was, Martinsen said.

‘She said she never thought she would have been friends with someone with Down syndrome, and now she is,’ she said. ‘I see them interacting with many kids. They’re high-fiving each other, asking how their day is.'”

As for me, I’ve been asked to come to Glen Grove Wednesday to share tips on using respectful language and appropriate questions during the interviews they’ll be doing with their buddy’s family members and friends. I’ll tell you one thing: I’m pretty sure I’ll learn more from these fifth graders and their buddies than they will from me!

Mrs. Martinsen’s award-winning project is named for her niece, Nora. To learn more about the Nora Project, visit thenoraproject.ngo. Documentaries produced by the students are available there under the Nora Friends tab.

The Impact of Stricter Guidelines on Service Dogs

by Beth Finke

Today’s guest blogger Bryana Peters studies animal science at the University of Illinois Urbana-Champaign. After graduate school, Bryana hopes to train service dogs, especially diabetic alert dogs like her own Labrador Retriever Leanna.

Leanna (left) and Bryana (right)

by Bryana Peters

If you were to take a screenshot of me right at this moment, I look entirely able-bodied. What the picture fails to represent is my pancreas failing me, my severe knee pain from a chronic pain disorder, my back aching from two bulging discs, and my left ankle swelling in my boot from complex regional pain syndrome, a disorder of the nervous system.

Many of my friends and peers are simply unaware of how difficult it is to exist with all of these disabilities. I have been in and out of hospitals since birth, had major back surgery when I was 16, and I experience a wide array of pain while presenting a picture of youth and happiness to the world.

Last year in June I started working with a service dog. Trained by Power Paws Assistance Dogs in Arizona, Leanna is primarily my diabetic alert dog, but she does light mobility work for me, too.

Working with a service dog has changed my life. She is my greatest asset when it comes to managing my multiple disabilities. She gives me much more independence and a sense of safety.

But here’s the problem: because I look able-bodied, I am often asked an assortment of borderline intrusive questions. Some examples:

• Who are you training her for?
• What’s wrong with you?
• Well, why do you need the dog?

Having Leanna by my side has presented a unique set of complications, no matter our situations. Many assume I am faking it, regardless of how well Leanna is behaving. Gaining access to many locations, including airports, for example, is met with skepticism. I am allowed to enter, albeit begrudgingly, once I explain the law. From there, I am stalked with peering eyes looking for any chance of a mistake – either on my own part, or on Leanna’s doing.

So it is absolutely exasperating for me to see other individuals with small dogs barely in a heel, barking at my service dog as we walk into a movie theater. On a plane, Leanna is in a tight tuck at my feet (left), sleeping, while a dog wearing a service dog vest jumps on people and begs them for food. Later, I hear barks and whines from their general direction.

I fight hard to teach the general public about service dogs and all the incredible work they can do, yet it is often an uphill battle. People who believe that their pet needs to be by their side at all times jeopardize my own and Leanna’s health and well-being. Many assume bringing a pet into a store or faking disabilities is a victimless crime. That could not be further from the truth.

Those of us in the service dog bubble have heard about Delta Airlines new stricter rules concerning Emotional Support Animals and service dogs boarding their planes. Essentially, Delta grew tired of passengers presenting untrained pets as service animals, and now they’re cracking down. I understand their frustration — it is one I share with them wholeheartedly.

Those who are blessed enough to receive a service dog to assist us to navigate our unconventional worlds have yet more mountains to climb due to others selfishness. Leanna and I are just starting our adventure together. I can only hope that those of us with real service dogs can reach a clear understanding with those who do not have them as to what the laws and expectations are. I am grateful to be able to pilot this world with four paws by my side.

More posts about service dogs:

• Why You Should Think Twice About Faking a Service Dog
• Stricter Rule for Service Dogs Goes Against the ADA
• A Tribute to a Seeing Eye Dog

An Accessible Way to Watch Super Bowl LII

by Beth Finke

I’m not much of a football fan. I am, however, a huge fan of new assistive technology, especially when you can try it out for free. So that’s why I’m going to attend AIRA’S Virtual Super Bowl party this Sunday

Aira calls itself a “visual interpreter for the blind,” and on Sunday Greg Stilson, a football fan who is blind will be at the game in Minneapolis sporting wearable smart glasses with an embedded video camera. Trained and certified AIRA agents who aren’t even at the game will use smartphone and portable WiFi hotspot technology to describe what’s in front of Greg remotely in real-time. Here’s how the AIRA web site describes it:

The trained agents see the world through the smart glass worn by the customer and describe the view. They respond to requests for information from the user, working at a specially-designed dashboard that efficiently connects to information via the video camera, GPS, and other sources of data.

Usually you need to subscribe to AIRA to connect with their trained sighted guides to have them describe stuff for you through their special glasses, but You don’t need to be an Aira subscriber to listen in this Sunday. Anyone can join the party starting at 6:00 p.m. ET by doing any of the following:

1. Call 1-877-568-4108 and enter passcode 536-565-714
2. Listen to the webcast
3. Listen on YouTube
4. Listen on Facebook Live.

If you want to let AIRA know about your Super Bowl experience, you can tweet them at @airaio on gameday using #airabowl.

What One Dad Learned From the ‘Welcome to Holland’ Poem

by Beth Finke

Guest blogger Keith Hammond is back! Keith is a manager at the adult day services program at Easterseals Serving Greater Cincinnati, and he’s the father of two children on the autism spectrum. He’s written a number of poignant posts for us before, and I’m delighted to have him back with another one.

by Keith Hammond

My wife and I have two children with autism. When you have children with a disability, this means many things. It almost certainly means you have friends, perhaps even family, who have children that are developing typically. The typically developing children are just what you expected to have, but don’t.

I meet many families who have a child who is just receiving an autism diagnosis. Having been new to the world of autism myself at one point, I know the natural tendency is to compare yourself and your children to your friends and their typically developing children. Sadness, depression and a deep feeling of loss are the natural results of these comparisons. You can sink into sorrow as if it were quicksand.

At some point, and maybe New Year’s is that starting point, you have to resolve not to compare yourself to others. Comparison is the thief of joy. Comparison steals the joy when your child accomplishes something positive, like a pickpocket grabs your wallet or purse. It only keeps you from fully appreciating the special things your child has to offer.

Let’s say your child with autism accomplishes something a decade after a typically developing child would have. Be proud and happy — your child worked that much harder for their achievement.

Obviously this is all very easy to say. Just as it’s easy to say your resolution is to lose weight, we all know people who say it and never lose a pound. I have no easy answers for anyone, but early on when my children were diagnosed, I remember someone sharing a poem with me written by Emily Perl Kingsley called Welcome to Holland. It’s a quick read, and a very poignant one, as well.

The poem compares having a typical child with having a child with a disability. The former is referred to as Italy, and the latter is Holland. You plan your whole life for a trip to Italy, and the plane lands and…you’re in Holland. And you live in Holland the rest of your life.

The learning of the poem is that if you just give Holland a chance, it’s a pretty neat place. They have tulips, they have windmills, and all sorts of fine and unique things that make Holland a special place. Likewise, your children have many unique characteristics and gifts that you can enjoy if you immerse yourself in them.

The poem acknowledges that losing Italy is still a loss. It’s the death of a dream, punctuated by your friends who constantly tell you how wonderful it is in Italy. I think at some point it helps to acknowledge you have suffered a loss, and some grief, even occasional grief, is to be expected. It helped me to know this is normal, and that this grief can be reactivated throughout your lifespan.

Right now on Facebook, I see friends of mine starting to have grandchildren. There is pain in the knowledge that grandparenting may not be my fate, though, hopefully, tinged with some joy for my friends. You don’t want to dwell excessively on these things, but some acknowledgement that it hurts a little isn’t such a bad thing, particularly if it helps you move on.

Another available comfort is that you’re not alone. Many families in your community face the same issues, perhaps worse than you do. Back in the day, the only time you’d run into these folks was at therapy appointments or support group meetings. Now, with social media and smart phones, you can stay in touch with kindred spirits as frequently as you like. There is strength in numbers and many times you can lift each other out of the pits of despair. That’s the cool part I’ve enjoyed about Holland: you meet a lot of nice people there, people you may have never met otherwise. Excuse me while I start up, “Heaven is a Place on Earth.”

More posts on disability and parenting from Keith:

• How a Father of a Teen with Autism Let Go of Traditions to Make New Memories
• How I Answer “How Was Your Father’s Day?”
• Here’s Who Loses Out if Medicaid Funding is Cut

Oh, the Places You Will Go:  Bridging the Gap Between Transportation and Youth Transition

by Sydney Palese

by Judy L. Shanley, Ph.D.

It is no secret that mentorship is important for young people. But only one in three youth in the United States currently has a mentor (Mentor, The National Mentoring Project). These numbers are even lower for youth with disabilities.

It is also no secret that mobility and transportation options are important  for youth to transition from high school to work, college, and the community. Yet little support (like mentorship) is provided to youth to enhance their engagement as decision-makers in transportation planning.

For this purpose, Easterseals, in cooperation with Partners for Youth with Disabilities, established the Transportation Advocacy and Mentoring Initiative (TAMI) project.

TAMI paired youth with disabilities from Massachusetts with  mentors from the MI PEAC Program. This mentorship program aimed to help youth with disabilities become active participants in planning and advocating for mobility and transportation services in their communities.

The mentoring pairs shared information about transportation options, barriers, solutions, and communication channels to influence transportation planning. The project also introduced youth with disabilities to careers in the transportation industry including mobility management.  Data collected before and after the participation of youth in TAMI indicated that mentoring positively influenced youth knowledge about mobility challenges and options and increased confidence in their ability to use their voices to influence transportation and mobility services.

Findings from TAMI and descriptions of the materials and strategies used will be shared in an upcoming national Webinar. Join us to learn how mentorship, transportation, and more can aid youth with disabilities in their transition into adulthood.

Leveraging Peer Mentoring Strategies to Increase Transportation Advocacy among Young Adults with Disabilities: Results from the Transportation Advocacy Mentoring Initiative

Thursday, February 15, 2018 from 2:00 PM to 3:00 PM (EST)

Register Here.

The Transportation Advocacy and Mentoring Initiative (TAMI)is supported through a grant from the Administration for Community Living and the Community Transportation Association of America. For more information about TAMI please contact Judy Shanley at 312-551-7227.

More posts about accessible transportation:

• A Global Perspective on Accessible Transportation in Taiwan
• Transportation Is Key For People with Disabilities in America
• Learning to teach people to travel independently on public transportation

Accessibility and Fashion: Are Designers Starting to Listen?

by Beth Finke

Last summer Erin Hawley hosted a Thrive disability and fashion chat on what it means to be a fashionista in a society that doesn’t always consider the accessibility of clothing and style. In a post Erin wrote after the chat, she urged designers to consider accessibility as an integral part of their design process, and you know what? The designers are starting to listen.

Recently TED published a talk by fashion designer Mindy Scheier. She’d put in years of work in the fashion industry at the INC collection and Saks Fifth Avenue in New York City before her son was born. Oliver was diagnosed with muscular dystrophy at birth, and the degenerative disorder makes it difficult for him to dress himself or wear clothing with buttons or zippers.

When Oliver started school, Mindy and her husband dressed Oliver in sweatpants and a t-shirt for school every day — it was the easiest thing to do. But then one afternoon Oliver came home from school demanding he wear jeans to school like all the other kids.

Mindy stayed up the entire night reconfiguring a pair of jeans for Oliver — opening up the legs to accommodate his leg braces and replacing the zipper and button with a rubber band. The smile on her eight-year-old son’s face as he headed off to school the next morning inspired her to start designing for people who have a hard time getting dressed. And that eventually led to Runway of Dreams, the non-profit she launched to educate the fashion industry about the needs of differently abled people. “Rather than designing my own collection, I knew if I was really going to make a difference, I had to go mainstream,” she says in her talk. “I believed that I just needed to educate the industry of the enormity of this population and the fact that these were consumers that simply weren’t being considered.”

And Tommy Hilfiger listened. When Runway of Dreams collaborated with Tommy Hilfiger, they took Mindy Scheier’s vision to market, making fashion history by launching the first mainstream adaptive collection: Tommy Adaptive.

“And the rest is yet to come,” she says, updating listeners on her son:

Today, Oliver is 13. He wears his adaptive khakis, his magnetic button-front shirt — he feels like the coolest kid around. My boy has total swagger.

Watch: What Life Looks Like From a Seeing Eye Dog’s Perspective

by Beth Finke

Click on the video to take a walk with me from my Seeing Eye dog Whitney’s point of view. 

I’m working with my fourth Seeing Eye dog now, and I’ve loved — and marveled at — each one. In order:

1. Dora, a female Black Lab
2. Hanni, a female Black Lab/Golden Retriever cross
3. Harper, a male Yellow Lab
4. Whitney, the 8-year-old female Yellow Lab/Golden Retriever cross who works with me now

I’ve long wished that everyone could see these heroic dogs get me past the tricky, nuanced things we come across every single day. Like getting in just the right position to let me buckle the harness, finding elevator buttons in our hallway, weaving through crowds on sidewalks, slowing down ever so gently when there’s a broken sidewalk or a heave in the pavement, those sorts of things.

And now, you can!

About a year and a half ago, a friend showed my husband Mike how a GoPro Hero camera works. A GoPro camera? “Yeah, people mount them on their heads when they do things like hang-glide, you know, or ride a motorcycle, whatever,” Mike said, explaining how GoPros can be mounted on drones, too. “They make really cool videos.”

As Mike explained all this out loud to me, it occurred to him that he might be able to mount the Hero on our hero dog Whitney. “We could get a dog’s eye view of what it’s like to be a guide dog!” It only took a little Googling to discover, sure enough, Hero sells a harness to attach a GoPro to a dog collar.

Our friend John was generous enough to loan us his GoPro Hero, and in 2016 we mounted the camera on my Seeing Eye dog. Whitney didn’t like wearing it very much, and the camera rocked back and forth as Whitney walked. There was no way to stabilize the camera, so we kept the walk short.

The video spent a year-and-a-half sitting on Mike’s laptop. He ran across it again over this past holiday break, and when he popped it open, the video was a lot better than he’d remembered. He did some editing, added some explanatory captions, and now, here it is, for you to admire!

The video covers a typical walk Whitney and I take around our neighborhood. It ended up longer than we thought — 14 minutes, to be exact — but I hope you’ll give it a look.

Message From the New CEO: A Look Ahead

by Angela F. Williams

Angela F. Williams

Easterseals and its clients nationwide reached incredible milestones in 2017! Our entire network strengthened its resolve to protect services for people with disabilities while expanding programs that impacted the lives of nearly 1.5 million people with disabilities including veterans and seniors, as well as their families.

Seeing these successes reaffirms how vital it is that Easterseals continues to make a lasting difference in people’s lives. Because we were there for them, our clients were able to achieve their goals – and set new ones. As we begin 2018, we are inspired and committed to create even more opportunities to assure that people with disabilities, including veterans and seniors, can live, learn, work and play in their communities.

As I join Easterseals’ national office as its President and Chief Executive Officer, I am honored and privileged to lead this life-changing organization, especially as we prepare to celebrate our 100th Anniversary in 2019. The need for Easterseals has never been greater! More people today are living with disability. As the nation’s leading disabilities advocate and service provider, we are driven to achieve our vision of a world that embraces and values people with disabilities – and one that assures they have access to the services and supports they need in their communities to reach their full potential.

I look forward to sharing our plans, work and successes with you in this blog throughout the coming months. I also welcome hearing the ways in which Easterseals could help you and the ones you care for.

Until then, as one of my first official acts as President and CEO, I testified  Thursday, January 18th to the House Subcommittee on Veterans Affairs. As a veteran, I am proud to share with Congress the impact that Easterseals is making in the lives of homeless veterans, delivering employment services for which we are distinguished, to help them find meaningful employment – often the first step in successful reintegration to their communities. In partnership with other community-based organizations, as well as the Departments of Veterans Affairs (VA), Housing and Urban Development (HUD) and Labor (DOL), Easterseals is a leader at the national and local levels in responding to the needs of veterans and their families – and the Homeless Veterans Reintegration Program about which I testified is just one example of the impact we’re honored to make in the lives of our nation’s heroes. I hope you watch my testimony here.

I look forward to getting to know you better. Together, I know we can make a difference!

Connect with Angela: LinkedIn | Twitter

• Request Angela Williams as a speaker for your event at angelawilliams@easterseals.com
• To set up an interview with Angela Williams, please email swatson@easterseals.com
• Read more about our new President and CEO, Angela F. Williams
• Learn more about Angela’s vision for Easterseals
  

Beam Us Up, Scottie: The Future is Here

by Erin Hawley

“Alexa, desk light on.”

The bedside lamp clicks on and illuminates my room in a warm glow. So begins my day as a disabled woman assisted by smart tech. From the moment I wake up, technology makes daily tasks easier for me and my caretakers.

I’m old enough to remember when cell phones were huge, gray blocks with a long antenna. When I was a kid, the internet was not a staple in homes or in public spaces. Controlling the lights in my room with only my voice, and communicating with people via voice-to-text and FaceTime was something I thought could only happen on Star Trek.

Alexa is Amazon’s version of Siri, a voice-activated digital assistant that can link with smart devices like light switches and other electronic items. Alexa is also paired to my phone, and I can easily turn lights on and off either by saying a command aloud or tapping the iPhone screen. I also use Alexa to stream music, read the latest news, make phone calls, order pizza (if I’m so inclined), and turn on my space heater. There are many other tasks she can perform that I haven’t tried out yet — Amazon is constantly adding new features.

Alexa’s formal name is the Amazon Dot, and Google has released a similar device called Google Home Mini. The Dot is an Amazon product and is extremely tied in with Amazon and all its services, and the Mini is tied into Google.

The advance smart home technologies highlighted at this year’s Consumer Electronics Show (CES) made Star Trek seem like a reality show. From refrigerators with large touch screens that tell you if you’re running low on milk to voice-controlled showers and bathtubs, CES 2018 showed us devices that could greatly benefit disabled individuals and their caretakers.

Someone with chronic pain won’t have to move as much to reach faucets or switches. Voice reminders and automated grocery lists can help those with memory loss. Mentally ill folks can activate calming music or order food without using up many figurative spoons. Smart tech can radically change the lives of disabled people, and the impact can be great.

You may have noticed my use of the word “can” in the previous sentence. I say it “can radically change,” rather than it does or it will, because these smart devices are usually a financial impossibility for disabled folks living on Social Security (SSI) wages. I would even say the smart refrigerator, for instance, is out-of-reach for most middle-class families. Amazon’s Echo is on the affordable end, but you then have to purchase smart plugs to get the most out of its accessibility features. I’m guessing costs related to the Google Mini are similar.

I worry that, as technology advances, the financial disparity when it comes to disabled people will leave them unable to keep up. Accessibility also means affordability. So often we can’t access the tools to improve our lives because they are behind a paywall.

What’s the solution? It’s complex. It involves looking at the very foundation of our sociopolitical system. But I think it’s a conversation that needs to happen if we are to see this tech available to all, especially those who are disabled.

More posts about technology and accessibility:

• Thankful For Online Friends and the Technology That Connects Us
• How do you vote when assistive technology fails at the polls?