Discovered I have autism at 50 then found the love of my life

by Jackie Orihill

I’m pleased to introduce Anita Lesko, who shares with us today how badly she wanted to find love before she knew she had autism, and how knowing her diagnosis may have made it easier. She found love with someone who also happens to live with autism, and their love story is breathtaking. Get a chance to talk to Anita and her husband in tomorrow’s Twitter chat on autism and relationships. #AskEasterSeals

To Us, Every Day is Valentine’s Day

By Anita Lesko

Being autistic makes our Valentine’s Day more special than most people could ever understand.  How could this be, you are thinking!  We live in what I sometimes call the “throwaway society.” People don’t seem to take relationships very seriously.  Infidelity, breakups, and divorce have become very commonplace.  It’s all the rage in Hollywood and reality TV shows, and plastered on magazine covers of the latest scandal.  I think this is all very sad.

Abraham and I love to spend hours talking, sharing our innermost thoughts and feelings with each other.  We both have spent our lives wishing, hoping, dreaming, of one day finding that special someone who would understand and accept us.  We’ve both been bullied, harassed, tormented, even threatened, because we are different.  We’ve both experienced extreme loneliness, lying in bed crying ourselves to sleep in the darkness.  The possibility of ever finding a mate seemed like only a dream.

I dreaded to go to restaurants on Fridays and Saturdays, traditional “date nights.”  There, everywhere I’d look, were couples hugging, talking, laughing.  All the very things I couldn’t seem to do, yet I didn’t know why.  After getting diagnosed with autism at age 50, at least I then knew why I was so socially inept.  The desire for a special someone still burned within me.

One day, at one of my Autism Support Group meetings, in walked my future husband.  Of course I didn’t know this on that fateful day!  He caught my eye, not just because he was tall, dark, and handsome.  There was something in his eyes that when I looked at him, I felt an overwhelming sense of peace and comfort.  I had never felt such a connection before.  We became friends that day, and our friendship grew stronger over that following year.

One beautiful crisp evening under a full moon, Abraham hugged me for the first time.  It was so magical, so intense, so delicious.  We both knew at that moment that we never wanted to let go of each other. I couldn’t tell where my body ended and his began.  We were united as one.  We found our special someone, and we didn’t want to let go.
We treasure our relationship so deeply, for it is something we both dreamed of yet thought we’d never find.  We take care of each other, watch over each other. It’s truly beautiful.  We can’t stand to be apart, which the only time we are is when we’re at work.  The rest of the time we are together, our little team as we call it!

To us, every day is Valentine’s Day.  We take time each day to do special things for each other, and share moments that we savor for the times we must be apart.  This Valentine’s Day, we woke up before sunrise, sat together, side by side, on a bale of hay and watched the sun rise, with steaming coffee in our hands, and gentle kisses.  Absolute bliss.

Get the details about the Twitter chat on love and relationships, featuring Anita and others, and also find more love stories with disability in the mix at easterseals.com/love.

Do I prefer to date people who are blind or not?

by Alicia Krage

I met today’s guest blogger Alicia Krage years ago when she and her mom attended a presentation I gave at a blind and low-vision fair here in Illinois. Alicia was an 11-year-old squirt back then, but she’s grown up now –she attends College of DuPage and will be transferring to Northern Illinois University in the fall to study criminal justice.

by Alicia Krage

People are curious about what it’s like to be blind. I usually get common questions like, “How do you travel?” and, “How do you watch movies?” But dating comes up, too, and more often than you might think.

I’m sometimes asked if I would prefer to date a sighted person or a blind person, or how blindness affects going on dates. It does affect it, but the relationships I’ve had are more affected by who the person is rather than whether they’re sighted or blind. Quite frankly, I don’t have a preference. I’ve experienced both, and I’ve learned something from each.

Dating a blind person does create a mutual understanding of day-to-day life and struggles, and you know with absolute certainty that the person is seeing you for you. Their first impression of you is strictly personality. That’s what I like about it the most, and that’s the biggest reason why I like dating someone who is also blind.

I met Joe in January five years ago when we were both attending a weekend event called Taste of College where students who are blind or visually impaired tour various colleges together. To be perfectly honest, with all the time that’s gone by, I don’t remember every little detail about that morning. I wish I did, though.

The funny thing about it is that Joe remembers it like it happened just yesterday. We talked about that weekend just a few days ago, actually, and hearing Joe talk about it was kind of like someone telling me a story about how they met someone for the first time. But that someone was me! I didn’t recall a lot of our first meeting, so listening to Joe tell the story was like reliving it all over again.

It took us a while to become friends — – after all, how much can you really discuss on a weekend when you’re spending most of it on college tours?

I saw him six months later at Summer in the City, a week long summer camp run by the same program that did Taste of College. I remember more about that. I was shy, he was confident. I was more introverted, he wasn’t. I think that’s why I liked being around him so much and I made more of an effort to come out of my shell and talk with him.

I liked the way he traveled and interacted with people so confidently and effortlessly; he didn’t let his blindness interfere with anything. If he was ever nervous about crossing the busy streets of Chicago or getting on the train, I never knew. (He’s still like that to this day.)

Joe and I met again one year later when we were both attending the Illinois School for the Visually Impaired in Jacksonville, Illinois, roughly 30 miles outside Springfield. It was a residential school, and we only went home every couple of weeks. Our friendship strengthened and we became the best of friends.

We’d been best friends for a few years before getting into a relationship, which was fine with me. Friends first is always best.

Stay tuned for part two of this post, when Alicia talks about when she and Joe decided to start dating and what their relationship is like now. And read more love stories at easterseals.com/love.

Little acts that show big love

by Bernhard Walke

Bernhard, his daughter Elena and his wife

Last year, Fr. Greg Boyle came to speak at the school where I work. You might recognize his name — he’s the Jesuit priest who founded and runs Homeboy Industries in Los Angeles. The mission statement on their website explains that Homeboy Industries “provides hope, training, and support to formerly gang-involved and previously incarcerated men and women” and that it allows them to “redirect their lives and become contributing members of our community. “

Homeboy industries employs hundreds of former gang members and provides essential services such as tattoo removal as well as professional and social-emotional counseling. It’s an incredible organization fueled by love and compassion.

When Fr. Boyle spoke at our school, he talked about creating a “community of kinship.” That got me thinking about the school I work at. I’ve been at this school for the past 13 years. It’s situated in a Chicago neighborhood that has a long history of gang activity, marginalization, poverty, and other social problems.

When I mention that I work in education in “the city”, people often respond with “Wow, teenagers? Low-income? Immigrant? The city? I don’t know how you do that!” My honest response is often, “Wow, I’m lucky that I get to do this! It’s a great responsibility.”

When I talk about my daughter Elena’s cerebral palsy for the first time, sometimes people similarly respond with “Oh, I’m sorry. That must be difficult. I don’t know how you do it.” Again, my mental response is similar to the one mentioned above. I’m lucky that I get to do this.

When my personal life sometimes collides with my professional life, both my daughter and the students form a community of kinship, love, and compassion that is authentic and palpable. Our students treat my daughter with the love and respect with which I believe we treat our students. It’s pretty simple, actually. If you want to connect with a teenager, treat them with kindness and respect.

One particular day, I had to leave early to drive home, pick up my daughter and return to school to pick up my wife (we both work at the same school) so that we all could go to Elena’s doctor’s appointment downtown. As I pulled into my parking spot, assembled Elena’s wheelchair, and planted her in it, I heard the 3:30 dismissal bell chime. I grunted and bemoaned that I would have to navigate my way through hundreds of high school students at dismissal in order to pick up my wife.

As I began to make my way through the halls, though, one of our senior boys who is typically very quiet and has a meek personality noticed me pushing my 5-year-old through the crowded halls and sprung to action, clearing a path like a border collie. He admonished other students, ”Hey! Get off your phone and pay attention! Mr. Walke is trying to get through with his daughter.” “Javier! Can you get the door and hold it open for Mr. Walke and his daughter?” “Mrs. Walke! Mr. Walke and your daughter are both here.” I thanked him for his unsolicited help and we were on our way to Elena’s appointment.

As we were driving back home, I marveled at the selfless love and care that this student demonstrated toward a young 5 year old that he had just met. I also remembered that this student had lost his mother at a young age. It was just him and his father at home. I like to think that we both realized that life doesn’t often go as planned, but it doesn’t mean that there is any less love in it.

I like to think that Elena brings out the best in all of us, including strangers. Almost every time I go somewhere with Elena — the grocery store, on a walk, or to the museum — strangers will look right at her and either smile from ear to ear, give her a high five, or introduce themselves. She just brings that out in people.

About a year ago, we brought our daughter to school for a mass. She was in her wheelchair, like always, and I remember overhearing, “Oh, that’s Mrs. Walke’s daughter — they look so much alike!” and “She’s so cute!” Not one of them mentioned that she was in a chair; they saw her, and not her disability. After the mass, students clamored around Elena to introduce themselves and talk to my wife and me about how nice it was to meet our daughter.

This was all happening in a school in one of the rougher parts of Chicago from kids who often deal with very adult issues. Again, the love and enthusiasm and the community of kinship that they create allows my daughter to be welcomed into society rather than left out of it. This for me is love.

after that experience at church, my wife (who is known for being a tough as nails teacher with high expectations) received an email from a student she’d never taught. The student began the email with a few words about my wife being known as strict but respected, and what she wrote next brought my wife to tears:

Today at mass I admired something more. I saw you turn to look at your daughter and the biggest smile came across your face. It wasn’t an “I’m proud of you smile” that a parent normally gives a child but a genuinely happy smile. Like suddenly you were on top of the world just looking at her. It was the most beautiful thing. I know it might be a struggle and to see your daughter be sick, like last year, but I learned something. God gives his hardest challenges to the strongest people. And Mrs. Walke, you are a very strong woman. So again, congrats on being a mom and just being the person you are. I hope your family is doing well!

It’s funny, adults often preach to teenagers and children that they don’t know the first thing about love, but it is acts such as these that demonstrate that they know a lot more than we give them credit for.

Read more about relationships at easterseals.com/love.

How President Obama’s Final Budget Affects People with Disabilities

by Jennifer Dexter

For nearly 100 years, Easter Seals has worked with the federal government to ensure that people with disabilities can live, learn, work and play in their communities.  A critical part of this work is making sure that there is adequate funding for the many important programs that support the health and well-being of people with disabilities.

February in DC marks the official opening of budget season.  This is the month when the President makes a budget proposal to Congress that outlines funding priorities for all federal agencies.  After that Congress must agree to a budget and then the appropriations committees begin the work of finalizing funding levels for every single federal activity.  This process can take up to a year.
On February 9, President Obama released his proposed budget for fiscal 2017, which begins on October 1, 2016.  Easter Seals worked hard to make sure that the White House and federal agencies prioritized people with disabilities.  While many programs were level funded from the previous year, there were some successes in the proposal including increased funding for:
•    Early childhood programs that Easter Seals supports including early intervention, preschool special education programs, Head Start, Early Head Start and the Child Care and Development Block Grant.
•    Incentives for state Medicaid programs to provide more home and community-based services.
•    The lifespan respite care program that helps caregivers for people of all ages get access to respite service and helps states enhance access to respite.
•    Specialized transportation services serving people with disabilities and older adults.
•    Employment programs to help connect people with disabilities to needed skills and jobs.
•    The Homeless Veterans Reintegration program that provides needed supports to assist veterans facing homelessness achieve employment.
Easter Seals appreciates the urgency for the federal government to be fiscally responsible and to strengthen our national economy. At the same time, we know that people with disabilities disproportionately rely on government services to live, learn and work in their communities. These services were created by government because the private marketplace would not meet the unique needs of people with disabilities. We will continue to work with Congress to help them make smart decisions about the real needs of people with disabilities as the final 2017 spending bills are developed.

To stay on top of legislation that affects people with disabilities, seniors and veterans, visit easterseals.com/advocacy and sign up for legislative action alerts.

I’m blind and she uses a wheelchair: Our marriage is a true partnership

by Beth Finke

Now for part two of Bryan McMurray’s Valentine’s Day post. Bryan is blind, his wife uses a wheelchair, and his post today describes some of the ways they work side-by-side to create a loving home together. A true partnership! (And in case you missed it, here was part 1, about meeting in an elevator!)

by Bryan McMurray

How is life now for us? Well, I still see as good – or as bad, I guess — as ever! My darling, well, with technology, she now uses a small power chair for inside the house. She uses an all-terrain power chair to shop and zoom around outside. She drives our minivan, and for seven months of the year she uses me (and the muscles I thankfully acquired from 15 years of high school and collegiate wrestling) to lift her in and out of our swimming pool.

So that’s an example of something we do outside together. Now let’s take a real-life example of how we work together when we’re inside at home: cooking.

I don’t mind cooking, as long as Joanna does it! She is happy to cook, but has to have everything right in front of her, within reach, so guess how that happens? Right! I cook! Well, actually, I get everything Joanna needs to use to cook arranged within her reach.

Does it work? We eat amazing healthy meals, I haven’t burned the house down (yet), and we love every minute we are together cooking and eating.

Well, there are those moments. Take the morning Joanna decided to organize her spice area and forgot to tell me she had left the big (I mean big) full bottle of garlic olive oil on the table where she cooks. I was wiping the table, fast and efficient-like, and, that’s right! That lovely-smelling bottle of garlic oil crashed in the middle of the floor!

Our little poodle jumped in the middle of the oil and glass, and, well, even those of you hardly paying attention to this love saga will have a good idea of how we spent the rest of that morning together.

I was able to retire early from my position at the University of Illinois in Champaign-Urbana five years ago due to budgetary constraints and inducements (all that means is they had no money and were glad to see me go). To think, now we get to live every day together, almost always together, and we love it. We spend much time — and both of our hearts — reaching out to and helping international students, and we do really live as if every single day was our last here on this Earth.

Is it wonderful, living with the darling girl I met when she was 18, who taught me about God and life and love and…hockey?!?? I love words, but have none to describe how wonderful, and fun, and amazing, and beyond words, it really is.

See more love and relationship stories and tips at easterseals.com/love. We’re adding new love stories all month long, too!

“Every love story is beautiful, but ours is my favorite.”

by Beth Finke

I met Bryan McMurray years ago when we were both in Champaign-Urbana at the University of Illinois. Bryan was born blind, and his wife Joanna uses a power wheelchair — she contracted juvenile rheumatoid arthritis when she was five. Bryan graciously agreed to write a Valentine’s Day post about their relationship, and this is part one of a two-part series.

by Bryan McMurray

We have a number of precious and very poignant plaques situated tastefully around our house out here in sunny Tempe, Arizona. I can’t read any of them. I’ve been blind all my life, but my darling Joanna reads them to me any time I ask. There’s one particular plaque I implore her to read often, just so I can hear her lovely voice recite it one more time. That plaque says, “Every love story is beautiful, But ours is my favorite.”

It began just like in the movies: we really did meet in an elevator. The elevator was in an intensive-French school located in a quaint little village called Val Saint Andre, just up a steep hill from a picturesque town in the south of France called Aix en Provence. I realized right away this sweet-sounding girl with the slight accent was in a manual wheelchair. That was fine by me. I am just a couple of inches over five feet tall, and I tended to like girls who didn’t have a big height advantage.

Back then, in the winter of 1975, I was 21 and a fourth-year junior at the University of Illinois in Champaign-Urbana. Joanna was an 18-year-old who, like me, loved languages and adventure and trying improbable things long before any law or Congressional Act mandated help for people with disabilities.

I quickly discovered that Joanna was a Canadian from a snowy city 500 miles north of Vancouver, British Columbia (hence that sweet little accent). One of her claims to “fame” was that at the age of 5, she’d contracted one of the worst cases of juvenile rheumatoid arthritis recorded in Canada.

We soon discovered that our backgrounds, our family and life experiences, even our disabilities, couldn’t have been more different and contrasting. I was an agnostic Hedonist child who’d grown up in a rough-and-tumble hard-drinking family on the South Side of Chicago during the late 60s. Joanna grew up in a home with a religious family who imparted strength and values to shine wherever she found herself. They did indeed shine brightly in France, and her strong, loving influence helped persuade me that her way and a road less traveled was the way I wanted to walk also.

We stayed close for several years, and even contemplated joining our lives together in marriage, but a set of unusual and extraordinary circumstances conspired to separate our lives. We experienced, in fact, such a dramatic separation, that we had no contact at all for 10 years.

Ah! But, this part of our story, with its whats and whys, must remain for another time, another campfire in another place. I will only say here, dear reader, that God brought our lives back together 22 years ago, through miraculous, unexpected ways. After that, we felt the liberty, the inexorable compulsion, to unite our lives in a marriage that every day grows more wonderful, more amazing, more of the blast we thought it might be all those years ago.

Stay tuned for part two of this blog post when Bryan gives examples of how he and his wife combine their skills to complete tasks efficiently around the house –like cooking.

See all of our stories on love and relationships at easterseals.com/love.

Why I love my dad (code name “Atticus”)

by Beth Finke

Anja (age 9) and her dad

We continue our exploration of love and relationships this month with a guest post by a 9-year-old friend of mine. Anja plays piano, writes stories, and loves to bake. She has a physical disability that doesn’t stop her from doing anything she wants to do. She’s a smart cookie! Here she is with a guest post about how much she loves her dad.

Valentine’s Day love for my dad

by Anja

I love my father. He is my “comforter” and an amazing dad. He is always the person I talk to when I am feeling down.

My daddy and I both love each other very much. We both love baking cookies. Just a couple of days ago we made his secret chocolate chip cookie recipe.

We have long discussions about business, entrepreneurship and Kevin O’Leary from Shark Tank. He and I also love history and the past. My favorite era in history to talk about with him is probably the William McKinley & Teddy Roosevelt era. So many great changes went through our country at that time; like when Teddy Roosevelt extinguished monopolies.

Talking with my dad tends to be where I feel most close to him. I always can ask him for advice and he gives the most positive feedback to me. We also are close via “code names.” I call him Atticus and he calls me Scout because we read To Kill a Mockingbird together. My dad is like Atticus because he never lies. He also is very encouraging and positive.

My entire family goes to fun parks over the summer. My daddy and I went down a very fast water-slide together. We both had an awesome time.

As you can see my daddy and I have a very close relationship.

Easter Seals is taking a look at relationships of all kinds, with disability in the mix. Love knows no disability and these stories prove it. Take a look at more relationship stories and advice at easterseals.com/love.

A tribute to my Uncle Gerald

by Beth Finke

Uncle Gerald

Valentine’s Day is around the corner, and to celebrate, we’re dedicating the next couple of weeks to posts about love and relationships. What better way to start than with this beautiful post about a young woman’s love for her uncle who had developmental disabilities?

This tribute shows that love and family know no disability, and wouldn’t it be wonderful if everyone saw past disability as Katie did.

Today’s post was written by guest blogger Katie Irey. Katie lives in Des Plaines, Illinois, with her husband Grady and their Border Collie Wick.

by Katie Irey

If you met my Uncle Gerald just once, you knew he was a lifelong Trekkie.

Gerald was 10 years old when Star Trek: The Original Series first aired. In the mid-1960s the show was ahead of its time in many ways, tackling interstellar adventure with a dose of morality, and taking a progressive point of view on things like diversity and civil rights at a time when society was less accepting of differences than today.

I didn’t know my uncle when he was a child, but I imagine he may have found some comfort in this TV community where it was okay to be different. In fact, it was celebrated. Spock was one of Gerald’s favorite characters, but Spock and Gerald differed in so many ways. Spock was Captain Kirk’s unemotional voice of reason and logic; to say that Gerald could be stubborn was putting it mildly.

But both Spock and Gerald were heading out on missions to “boldly go where no man has gone before.” From scouting to swimming to medaling in the Special Olympics for cross-country skiing, Gerald’s adventures were many, and preferably completed on his bicycle.

My earliest memories of my uncle coincide with the airing of Star Trek: The Next Generation in the late 1980s at my grandma’s home. Uncle Gerald kept my sister and me entertained with Star Trek episodes, cartoons, Transformer action figures and Atari games.

My cousins and I were the next generation, which our uncle was sure to remind us of repeatedly. My uncle was a character, always trying to make us laugh with funny faces and endless teasing. I appreciated the latter so much more when it was directed at my sister than at me.

Gerald had a nickname for everyone, but my sister Peggy was always Margaret, and I was always either Kathryn or Binker, a nickname I couldn’t shake no matter how hard I tried.

When Star Trek: Voyager aired in 1995, Captain Kathryn Janeway was the first female commanding officer, responsible for navigating her ship and crew on a perilous 75-year journey home. I was a teenager entering high school and was too preoccupied with sports and friends to pay much attention to the plot lines, or to my uncle, for that matter.

However, whenever we were together, he never failed to remind me that the Captain of the Voyager and I had the same name, Kathryn, that she was the first female Starfleet commander, and that maybe I could be a commander, too. This I believe was my uncle’s way of encouraging me to pursue my dreams, and letting me know how proud he was to be with me on my journey.

In 2001, the last televised series, Star Trek: Enterprise launched, a prequel to the original series. That year ushered in a year of change and new adventure for my uncle as well, leaving the comforts of home with my grandmother and transferring to a new mission in a nearby residential program. My parents became the officers of his ship, and the caregivers who took him to ball games, movies, and dances (and made sure he did his chores) were his crew.

Gerald’s mission became more challenging over the last 10 years as he faced both Diabetes and Parkinson’s. His hero Spock once stated that “creativity is necessary for the health of the body,” and Gerald found some solace in his coloring, which seemed to ease his tremor at times.

When my husband Grady and I visited him over the last few months, Gerald put on a brave hero’s face and smiled through his pain, showing his appreciation for his family and even slipping in a joke or two.

My Uncle Gerald passed in December, but his memory lives on in my heart. I can only imagine that he is in heaven now with his mom and dad and extended family surrounding him, his hands strong and steady, wishing that the rest of us “Live Long and Prosper.”

Read many other stories and tips about love, relationships and disability on easterseals.com/love.

Everyday technology that benefit people with disabilities

by Beth Finke

Stevie Wonder and the panel

It’s pretty cool that so many companies make assistive devices and can come up with special technology for those of us who have disabilities, but what I think is really cool are devices and technology that we can use the same way average users do.

So I was very interested in reading an interview with Stephen Ewell, the executive director of the CTA Foundation (an organization launched by the Consumer Technology Association) about how people with disabilities can use some technologies that are the same as what everyone else uses. “Some people want a special device designed specifically for them,” Ewell told Power More, a news site with technology, business, and gadget-geek information from the Dell Inc. “But in many cases they don’t want a device that’s different from anyone else’s.”

Power More asked Ewell about everything from robots to wearables, virtual reality to automated driving. I must say, my ears really perked up when I heard him say that CTA Foundation gives out around a half- million dollars a year in grants to non-profits that work to help people with disabilities use technology.

The interview is done in layman’s language. For example, when Ewell was asked what noteworthy assistive technologies he saw at the 2016 Consumer Electronics Show, he gave a simple answer: virtual reality. “When you look at the opportunity for particularly homebound individuals who aren’t able to leave their apartments or leave their homes on a regular basis that easily, I can see some really interesting opportunities to engage and see the world through the modern virtual reality.”

The interview really was interesting, and it gave me hope that I’ll be able to keep up with technology. Check it out.

Plowing through: Snow removal and accessibility

by Beth Finke

A story in The Gothamist last Monday questions why officials in New York City, a place where more people walk than drive, clears passage for cars over clearing paths for pedestrians.

For guide dogs, everything can look like a tunnel sometimes.

The subhead for the story reads “This does not pass Americans with Disabilities Act muster,” and I have to agree.

Those of you stuck at home in the aftermath of last weekend’s snowstorm may want to use your time inside to communicate and educate transportation professionals and community leaders about snow removal and accessibility. Easter Seals’ Project Action has developed a guide related to transportation and snow removal. The 24-page booklet highlights innovative policies and strategies used by U.S. and Canadian communities to improve accessible pathways and transit stops during winter weather.

Happy reading, and hang in there — it’s gotta melt sometime.