Madison, Wisconsin, is a super vacation spot for kids with autism (+ 4 others)

madison-wisconsinWith spring break coming up, you might want to take a look at this great article in Special Parent magazine from a couple years ago that I still reference today. The piece is called “Five Travel Ideas for Families with Kids on the Autism Spectrum,” and I appreciated the way the writer Cindy Richards acknowledges that it’s tough to predict what destination will work for kids on the spectrum — in fact, places that work for kids on one end of the spectrum don’t always work for kids who are on the other end and vice versa.

With that caveat, the author offers five suggestions:

  • Book a condo, house or suite (rather than a small, confining hotel room)
  • Visit during a less chaotic period
  • Look for places that offers special programs for special needs visitors
  • Visit a dude ranch (yes, this is a serious tip, and we love it!)
  • Consider Madison, Wisconsin

Richards goes into detail about each suggestion, and I was especially tickled to read about Madison. Our son’s group home is near Madison, and it’s a great place to go with Gus: vibrant, yet calming at the same time.

The article is spot on when it says, “The capital of Wisconsin has a small town feel, but a plethora of autism-friendly attractions and support programs.” And I’m giving the city of Madison extra points for having the wisdom to have an autism expert on staff. Richards quotes Judy Frankel (public relations manager for the city’s visitor bureau) in the piece, and Frankel has a son with autism.

Have any other suggestions for vacation spots you’ve found to be especially good for kids on the spectrum ? Leave your ideas in the comment section, we love to hear from you, the experts! And here are amusement parks with special needs passes.

 

A good video on how to guide a person who is blind

When it comes to walking a person who is blind or who has low vision safely to their destination, you need a certain set of skills. But help is often impromptu, with a “sighted guide” or “human guide” lending a hand, so to speak, in the moment, leaving it to the person who is being guided to provide quick instruction as needed.

Familiarity and common sense are often all that is necessary for sighted guide assistance to work just fine. That said, a little instruction can go a long way toward improving this particular skill set. This is especially true when vision loss isn’t the only factor to consider.

The Massachusetts Department of Developmental Services reports that one in four people who have intellectual or developmental disabilities also have some level of vision loss. They’ve released a video called “Let’s Walk Together” that demonstrates sighted guide techniques for assisting a person with both intellectual and visual disabilities.

From their website:

This collaborative video with DDS shows how human guide, also known as sighted guide, can be used by individuals with visual impairment, legal blindness, or deaf blindness in a variety of everyday situations including walking through doorways, on stairs, and safely getting into or out of a car and van. This video also addresses the unique needs of individuals with vision loss who use walkers or gait belts.

I think anyone working in the field of disability services or who has a family member with a disability can benefit from this instructional video. The techniques taught are solid. To my ears, the tone of the interaction between sighted guide and person needing assistance occasionally crosses the line between nice and patronizing, but it is all done in a respectful and professional manner. Give it a try!

 

A new way to share #LifesMoments and milestones

ES_Marquee-LifesMoments-022515-R3When I was a young girl, I heard my aunt tell my mom and a table full of women how excited she was that my cousin said a word. I think the word was “juice.” My aunt gave us a play by play of how she drew it out of him. She held a cup of juice just far enough that he couldn’t reach it.  Well, he must’ve been pretty thirsty so he said “juice.” I remember thinking, “What’s the big deal?”

I was maybe 6 or 7, so he might’ve been 3.  My aunt seemed ecstatic and hopeful. This was a moment for her.

I didn’t realize yet that my cousin had severe disabilities that impaired his speech and development. The truth is, any time I was with him, I never heard him say a word. So the day he said “juice” was a moment of promise.

Today, I’m a mom myself and I also work here at Easter Seals. Both experiences have helped me have a better understanding of my cousin’s genetic disease. More important, I think I have a greater appreciation for the moments that moms and dads celebrate. And how much they vary. I mean, the first time my kid drew a stick person, I almost called MOMA to negotiate his first exhibition. Our son’s interest and confidence in drawing and coloring came later than many of his peers, so we celebrated that achievement —  for him and for me. (MOMA, er, I mean MAMA loves a refrigerator full of pictures.)

Whether you are celebrating a child’s first steps,  first words, or first drawing, at any age, I’d never again think “What’s the big deal.” In fact, I say, shout it to the skies!

We all develop differently and encounter different challenges in life, so I’ve tried to stop comparing. Let’s just celebrate our achievements and have others cheer us on. I’ve got one way you can.

I’m inviting everyone and anyone to share their life’s moments on Twitter or Instagram or even Easter Seals’ Facebook page with #LifesMoments. Your story and/or photo may be featured on our wall of #LifesMoments so we can celebrate with you and your family. And if you’re feeling shy, that’s ok. You can check out our wall of life’s moments at easterseals.com/lifes-moments and cheer others on, too.

Visit easterseals.com/lifes-moments now.

 

The Wizard of Oz as imagined by a girl who is blind

Emily

Emily

Did you happen to catch that adorable Emily’s Oz commercial during Sunday’s Academy Awards presentation? Seven-year-old Emily has been blind since birth, and Emily’s Oz is about what she sees when she watches The Wizard of Oz™. The ad touts TV technology for people who are blind, and it features Emily describing how she envisions the characters in her favorite movie.

I am blind, too, and I sat with my sighted husband on the couch during the Oscars Sunday night and enjoyed Emily’s Oz right along with him, thanks to the efforts of companies like Comcast, who are creating opportunities for people like me.

Easter Seals’ corporate Partner Comcast has been hard at work over the past few years to make their products and services accessible to all. Take their new talking guide, for instance –it’s a new feature on the X1 platform that reads aloud selections like program titles, network names and time slots. DVR and On Demand settings, too! Blind users have the freedom to independently explore and navigate thousands of shows and movies – something that can be very difficult otherwise.

Many of us with visual impairments love film and television, we just don’t always have the opportunity to experience Hollywood to its fullest. I’m grateful to Comcast for its efforts, and hope this blog post about the talking guide increases awareness of this new technology among as many people as possible – the talking TV guide brings us one step closer to making entertainment just as compelling, captivating and fun for people with a visual disability as it is for others.

If you missed the ad during the Academy Awards presentation, you can find Emily’s Oz here. Robert Redford does the voiceover, and you can opt for video description, too.

 

Update on Chad

Chad Cunningham_BlogMy colleague Jackie Orihill interviewed Chad Cunningham last year for a story in the easterseals.com Love, Dating, Relationships and Disability series, and today we have an exciting update to that story.

A little background first: Chad was diagnosed with cerebral palsy when he was 18 months old. His parents were told he’d never walk, but while receiving therapy from an Easter Seals center in Peoria, Illinois, from age 18 months through 18 years, he belied that prediction. In his interview with Jackie, Chad
acknowledged that in some ways, dating was a bigger hurdle to overcome than learning to walk:

“I’d think, ‘Oh my gosh, is my date going to notice [that I have a physical disability] as soon as I get up from the table, and will that be the end of the date? How long will it take her to notice my disability? Will she accept me?’”

Jackie described Chad as “brawny with a big heart,” and said he didn’t start dating until his mid-twenties, when women started asking him out. He realized that the biggest barrier to his dating had been attitude. He’d been so concerned about being defined by his disability, and judged for it, that he wasn’t being open about it. From the story:

He decided to not be afraid to talk about his disability.
“My biggest dating advice to anyone with a disability is to love yourself first, respect yourself, and be willing to share who you are and where you want to go,” Chad says. “Don’t be afraid of rejection and keep the faith. The right person is out there.”

Sure enough, the right person was out there for Chad: he met Kindra in 2012, and when we caught up with him this year we found out they got married in August! Kindra’s three-year-old daughter Lydia calls Chad “Chaddy,” and they’re excited to grow their family– a baby is on the way in June. Congratulations, Chad, Kindra and Lydia!

 

Love and marriage lessons I learned from my own stories

candy-heartsIn recent weeks I’ve had the pleasure of interviewing some pretty exceptional people for our “Love, Dating, Relationships and Disabilities” series on easterseals.com, and the people I’ve spoken to have completely changed my perspective on what this love and relationships thing is all about.

These extraordinary individuals have taught me that love and relationships are not all about milestones and destinations. What makes love worthwhile is everything that takes place during the journey.

For Beth and Mike, a genuine conversation about Beth’s Type 1 Diabetes (and its potential complications) lead to Mike’s marriage proposal by the family Christmas tree during the holidays. That genuine conversation? It let Mike know that Beth was the one for him. Beth would eventually go blind as a result of her diabetes, but Mike vowed to be there throughout the journey.

For Palmer Williams, who is paralyzed from the waist down, it was the process of planning the little details of her outdoor wedding. Certain details needed to be modified during the planning process, but Palmer is resourceful, and her family and friends surrounded her with all the love — and help — she needed to make her wedding the amazing day it was. Example: Palmer’s concern about getting down the aisle was answered after her father built an aisle runner made of white plywood for his daughter’s special day.

And I’ll never forget the stories that were shared by the O’Sullivans and the Demers, two couples that have been married for 50 years. Their love has always been enough to withstand the challenges they’ve faced over the decades, including Alzheimer’s disease.

These stories taught me that everyone’s journey is different, and the entire “Love, Dating, Relationships and Disabilities” series has shown me that love is not a “one-size-fits-all” kind of thing. Love, dating and relationships can be challenging for people of all abilities, but once you’ve met the right person, it makes all of the challenges worthwhile.

Visit Easterseals.com/love for dating and relationship advice and stories. We’ve even got some very unique marriage proposal stories for you, too!

 

Big news, and dating tips, from our friend Bridget

Bridget Houlihan and her fiance George

Bridget and George

Last year around Valentine’s Day Bridget Houlihan wrote a piece for us about factoring disability into dating. Bridget has cerebral palsy, and while she thinks dating is fun, she also conceded that it can be difficult. “It can feel especially intimidating if you have a disability,” she wrote. “Or if you’re interested in going out with someone who has one.”

Bridget wrote about all the “what ifs” that came into her mind before mustering up the courage to ask her boyfriend George out on a date:

Things like “What if he doesn’t find me attractive because I use a wheelchair?” or “What if I need his help? Will that make me less appealing to him?”

Turns out George had questions of his own. He wondered what the best ways were to make Bridget feel at ease when they went out, he wanted more details about her cerebral palsy, and he wanted to know whether or not he should help push her wheelchair if he saw her struggling with a curb cut or incline. “I learned you can’t let the what ifs and questions stop you from pursuing someone you’re really interested in,” she wrote. “You’ve got to just go for it because if you don’t, you could miss out on something extraordinary.”

We caught up with Bridget again this year, and she had some extraordinary news to share. “George and I are engaged!” she gushed. He’d proposed at his birthday party in June, and the couple will be married on September 8, 2015.

“It’s a special day,” Bridget told us, explaining that September 8 is George’s parents’ anniversary, and it’s her parents’ anniversary as well. “We decided to make it ours, too,” she said. “We’re so excited!”

Congratulations to Bridget and George, and you can check out Bridget’s top ten dating tips here — five are for people with disabilities, and five are for those who want to date someone with a disability.

 

Highlights from a #PWDinmedia chat (that’s people with disabilities in media for the non-Tweeters)

pwdinmediachatcroppedWe are immersed in a world of pop culture.

This kind of world is great when you want to come home from a rough day and catch up on your favorite shows and movies on Netflix. But it can be disheartening when you’ve been exposed to the media since the day you were born and never see anyone like you represented in media images, characters and storylines — not even in your favorite shows. What unspoken message does this send?

Thrive, an Easter Seals community for young women with disabilities, focuses on a disability topic every month. In January, all the Oscar buzz and debate surrounding an able-bodied person playing a person with a disability in The Theory of Everything made disability representation the perfect theme for that month. We wanted to provide a space for young people to be honest about what they thought, and we were thrilled to see Twitter was on fire with people itching to voice their opinions on the subject. Journalists, bloggers, novelists, students, activists, as well as people with and without disabilities contributed to an amazing discussion. We reached over 100,000 users with the hashtag #pwdinmedia with about 500 tweets!

In case you missed it, here is one that got a lot of attention:

Q. What are your thoughts on actors/actresses without disabilities playing the roles of people with disabilities in TV & Film?
“It’s often hard for disabled actors to get roles of abled characters. Giving disabled roles to abled actors thus robs disabled actors of the very few roles they’re able to get. So it always bothers me. Also, it’s often very clumsily done. Abled actors may not use canes or wheelchairs the correct way, for example.” – Corinne Duyvis ‏(@corinneduyvis)

“When depicting disability we shouldn’t make people feel like they can ‘get out’ of the disability. I also want to stress over and over and over again that not all disabilities are ‘tragic’ and ‘life changing.’ I was born blind.” – Elsa S. Henry (‏@snarkbat)

“I want to see people born with disabilities play themselves too. Not just stories of those who had accidents.” – Schwartz Abdul ‏(@schwartzabdul)

And then there was this one:

Q. What ways has the media shown progress towards disability representation? What things need improvement?
“These days, I think there’s slightly more willingness by the media to go beyond the typical ‘overcoming disability’ tropes. But there’s still an almost complete absence of disabled voices in journalism today. Writers, get those pitches out!” – Elizabeth Heideman ‏(@Eliza_Heidi )

And this:

Q. How can media creators work to increase disability representation without relying on tropes?
“Include multiple disabled ppl w/ multiple disabilities and other intersections (race, age, gender) in production process” – Erin H (‏@geekygimp )

“First, understand the tropes. You have to know WHY they’re harmful so you don’t replicate them despite intentions.” – Kayla Whaley ‏(@PunkinOnWheels)

There were so many great conversations beyond the above selection of quotes, and you can get the complete summary when you check out the Storify for #pwdinmedia. Join in on the conversation — follow @ability2thrive on Twitter and and participate in our next chat — on disability beauty — February 26th 3 p.m. EST.

 

One mother’s relationship with her son who has disabilities

Gus and Beth.

Gus and Beth

Our 28-year-old son wears diapers. He can’t talk or walk. If his food isn’t cut into bite-sized pieces, we have to feed him. Gus’s genetic condition doesn’t have a name, like Downs or Asperger’s. It’s known by its clinical description: Trisomy 12p.

My husband Mike has loved his son from the day Gus was born. It took me a lot longer. Truth is, I was angry at Gus. He wasn’t the baby I expected. A baby was supposed to bring us joy. The way I saw it, Gus brought nothing but trouble.

I did therapeutic exercises with Gus. I cuddled him, played the piano for him. But none of it was heartfelt.

Until one night, when I was singing Gus to sleep. Suddenly understanding washed over me: None of this was Gus’s fault. “‘You didn’t want it to be like this,’” I said, starting to cry now. “It’s not your fault, is it?” Over and over I repeated it. “It’s not your fault, Gus.” I kissed and hugged him, finally able to love him and to tell him so.

Decades later, Gus communicates by crawling to whatever it is he needs. He can manipulate a wheelchair, too, and when he wants to hear music, he rolls himself to the piano. Gus laughs and sings with the tunes and claps with delight whenever he hears live music. He loves to hold hands, especially while swinging on a porch swing. But as Gus grew bigger, Mike and I grew older. Shortly after Gus’s 16th birthday, we realized it was time for him to move away. Mike and I placed him on waiting lists all over the country. A facility four hours away contacted us in 2002. They had an opening.

Gus cried his entire first weekend away. So did we. ‘It’ll take some time for us to all get used to each other,’ the social worker assured us over the phone. On our first visit, we found Gus happy and smiling, yet not quite sure what to make of these visitors on his new turf. I sang to him. He felt my face. Suddenly he burst out in laughter, realizing it really was me.

During that visit I stood him up to transfer him from the wheelchair to the car so he could join us for lunch, and I realized how much he’d grown. He was up to my chin.

As I leaned down to kiss Gus goodbye afterwards, he took off. Couldn’t wait to wheel himself back to his friends in the activity center.

Now, when we visit Gus, it’s all fun. No hoisting him onto the toilet, no muscling him into the shower, no changing his diapers. No drudgery. He seems relieved, too, finally allowed to do things independently of his parents. Hmmm…maybe Gus has more in common with other young men his age than I thought.

 

Who can I talk to about dating and disability?

Duke_kissability_front_cover_small.inddIn this abridged excerpt from the nonfiction book Kissability: People with Disabilities Talk About Sex, Love, and Relationships author Katherine Duke shares the moment that prompted her to create the book, which is based on opinions and stories from 40 different people with disabilities around the world.

Why I wrote Kissability

by Katherine Duke

Kissability grew out of a time when I was concerned — no, I was panicked — about what felt like a vast emptiness where my love life was supposed to be, and about how utterly clueless I was at trying to fill that emptiness. I hadn’t dated since college (hadn’t dated before college, either), and my efforts to start dating again were proving anywhere from disappointing to disastrous. I was facing the very real and terrifying possibility that I would simply never find another romantic partner ever again.

This possibility became the topic of a months-long bout of clinical depression.

I talked to my mother, my sister, and my friends about my concerns, and they did their best to reassure me. Dating isn’t easy for anyone, they said. Your wheelchair doesn’t matter; you have other qualities that people find attractive. You’ll find someone soon.

I couldn’t help but wonder: How do they know?

I appreciated their encouraging words, but they didn’t seem to understand why this issue was troubling me so deeply. How could they understand? None of them had pushed themselves through life in a wheelchair; none of them had any accessory or trait that so obviously marked them, in the public eye, as broken, as deficient.

I’d had cerebral palsy since birth and all manner of therapies, orthotics, and mobility equipment since childhood. I did not dwell in frustration or embarrassment about my CP. I did not wish it away (as I had with, say, my tendency toward depression, which I actually consider more debilitating than the CP). I did not see my disability as a repulsive or tragic flaw. But, as a single young adult, I was painfully aware that many other people, including potential dates and lovers, might see it that way.

Around that time, I happened to get back in touch, through the Internet, with an old friend who, like me, has CP and uses a wheelchair. He sent me a video message asking for an update on my love life. I wrote back and poured my heart out to him, describing my frustrations and fears and a particular humiliating incident that had crystallized them.

Within hours, he sent another video message in response. “Oh my God,” he said. “I was basically reading my story when I was reading your letter, and I can totally relate.”

This man, who was enrolled in graduate-level disability studies courses at the time, went on to speculate that our similar experiences, and our feelings about them, had a lot to do with our disabilities. Disabled people, he said, often have the same impulses and desires as non-disabled people when it comes to sex and relationships, but we don’t always have the same developmental and learning experiences at the same times as everyone else.

My exchange with this friend both comforted and intrigued me as no previous conversation had. I suddenly found myself wanting to talk to lots and lots of different disabled people, to figure out which common threads were — and were not — running through all of our self-images, social lives, and love lives.

I tried searching online for books and forums about disability and sexuality. Most of what I found seemed geared toward medical information and advice. While I’m very glad that such resources exist, they weren’t what I was looking for. Wasn’t there some place, some repository, some project, wherein people with disabilities could just express ourselves — simply share stories and feelings about this area of life?

Where do you go to find support regarding love, dating and relationships among the disability community? Share your insights in the comment section below. And visit easterseals.com/love for love, dating and relationship advice from people living with disabilities and their families.