Trusting our kids who are adult with disabilities to the world

Our son Gus was born with a rare genetic disorder called Trisomy 12p, and at first, no one was sure he’d make it past that first day. Thanks to excellent and skilled medical care, Gus did make it: today, September 3, is his 28th birthday.

Gus lived with us until he was 16 years old, and his dad and I went to visit him at his group home Saturday to celebrate. Here’s my husband Mike with a guest post about that visit.

Happy Birthday, Gus

by Mike Knezovich

Gus and Beth.

Gus and Beth

Every time we visit our son Gus in his little yellow house in the quiet little town of Watertown, Wis., we love seeing him. And we are always, just a little, discombobulated. Even after 12 years of his living away from us.

Gus is severely disabled. He can’t talk. He can walk a short distance, clumsily, using a walker, but he spends more time in his wheelchair—which he can propel and steer well enough to get around the little ranch home he shares with three other developmentally disabled guys, and with the staff of Bethesda Lutheran Communities, which operates the home.

He invariably recognizes us, letting us know by letting out a sort of shriek of joy, just as he claps his hands right in front of his face. He makes Gus noises—anyone who’s been around him knows what that means. For those who haven’t, I don’t think I can describe them adequately. But they tell you a lot—whether he’s happy, sad, puzzled, anxious.

When we visited to celebrate his birthday, he was especially pleased to see us. The shrieks and claps and laughs went on pretty much all afternoon.

Beth caught a few rays on Saturday.

Beth catching some rays

We walked him in his wheelchair to the little park across the street. We wheeled up to a picnic table, where Beth reclined to catch some rays. Some kids were there—and it was a scene that I remember well from my youth but which I rarely see today. They were anywhere from, oh, 5 to 11 years old. They were playing kickball on the baseball diamond, while their bikes sat parked near the pavilion.
There were arguments about in-bounds and out-of-bounds, cries of joy when some one kicked a good one. And then they broke up and reconvened to start a new game of dodgeball of sorts on the playground. It was a game that an outsider could only partly understand, but they clearly had crafted and memorized their own rules.

What really stood out about the whole scene: There was not an adult in sight. The kids had organized this themselves. It was straight out of our childhoods. During summer vacation, we’d leave early and come back late. Entertaining ourselves with invented games, getting bored, inventing new ones. It all was kind of quietly astounding, a dreamy escape to the past.

Gus enjoyed it all, too. He can tell when people are having fun, and he gets tickled by that.

While we sat and took in the breeze and the sun, a little guy— one I reckon to be 5—came by to pet Beth’s Seeing Eye dog Whitney, who was off harness. He told us about his dog. Pointing to Gus, he asked whether “that guy broke his knee.” After some back and forth, we surmised that his grandma had “broke her” knee and had been in a wheelchair, hence the question.

Our new buddy eventually returned to the playground, and we walked Gus back home. We said our goodbyes. It was a good visit.

When he first moved away, we’d stay longer, and usually stay overnight to see him again the next morning. Things changed when we realized: He’s happy to see us, but really, he’s got his own life now. Not like our contemporary’s kids—who are going off to college, starting careers and such. But it’s his life nonetheless. He’s happy to see us, we’re happy to see him. It’s our normal.

Always, I wish we lived closer than the 2-1/2 hour drive we have, so we could just drop by when we felt like it.

But always, I leave grateful that he has a home. That he’s done just fine out of our house. There have been glitches, sure, but there were glitches when he lived with us. We didn’t get everything right.

There was a time when I thought I could never let him live elsewhere. To trust him to the world. That’s what all parents have to do. In that way, Beth and I are like all parents who watch their kids leave. Except we’re not. Of course we’re not.

Years ago Beth, in her infinite wisdom, arranged for me to talk to another father who’d thought the same way about his son as I did—no one can take care of Gus like we can. Like I can. And that father ended up hitting an inevitable wall.

That helped me see ahead, and realize, I needed to learn to trust Gus to the world. For me, for Beth, and for him. So far the world’s doing a good job.

*Back to me, Beth. Every family living with a person who has a disability faces unique challenges. Early detection and intervention are the essential first steps, but there is also an urgent need for increased funding and services for children once they grow up. A number of our Easter Seals affiliates offer services for adults with disabilities, and you can search here to find out if the Easter Seals near you is one of them.


What happened to the blind triathlete?

I wrote a post here last month after the director of NYC Swim’s Brooklyn Bridge Swim decided that athletes with disabilities would have to pay an extra fee to swim in the race. My friend Eliza is a strong swimmer (she’s completed six triathlons) but she happens to be blind. The extra requirement for the swim across the East River was unfair to Eliza (and I agree!), so Eliza didn’t participate.That's Eliza on the right with Megan Leigh, one of her guides. (That’s Eliza on the right with one of her guides Megan Leigh.)

Eliza was disappointed, but she knew this was an opportunity to get word out by talking to the media about the struggles athletes with disabilities sometimes face when trying to compete. “We didn’t get to swim,” she said. “But getting the word out there made me feel a lot better about what happened.” She was glad the stories in the media drew attention to the issue, and pleased they generated conversation and support. “And you know what?” she told me with a shrug. “There are always bigger and better races to be raced!”

Sure enough, last Sunday, August 24, Achilles International volunteer Julie Bennett guided Eliza in a Half Ironman Triathlon in Old Orchard Beach, Maine. Eliza swam 1.2 miles in the ocean, rode a tandem for 56 miles and ran 13.1 miles. They finished at 6:03, one entire hour faster than what they were hoping for. Not bad for a young woman who only started racing in triathlons two seasons ago, eh? Her guide Julie says that after Sunday’s unqualified success, Eliza has “blossomed into one of our most dedicated and inspirational athletes.” I’ll say. Go, Eliza, go!


You’ve done the ice bucket, now take the lipreading challenge

My SO (Significant Other) and I went to an amazing birthday party at a bowling alley/bar last weekend, but the live band was so loud I couldn’t interact with everyone. I have an auditory processing learning disability, so loud background noise/music (and especially heavy bass) makes it impossible for me to hear more than one thing at a time.

I spent a majority of the night trying to lipread my friends, and I was only able to understand about 20 to 30 percent at best, and that was only if they didn’t have an accent or facial hair. I got to feeling so frustrated and isolated that I finally asked friends to speak right into my ear or write things down.

All this had me thinking: how well do people with hearing disabilities deal with lipreading, not to mention the expectations to be an expert at it? At a meeting a few months ago, our summer intern Sara introduced herself and explained that she is deaf. In response, some people spoke louder.

Kind of a face palm moment. Some of us assumed that if Sara was deaf, she could read our lips, and speaking louder would help Sara lipread. The ability to lipread is actually #4 on our Myths and Facts about People with Disabilities list:

Myth 4: All persons with hearing disabilities can read lips.
Fact: Lipreading skills vary among people who use them and are never entirely reliable.

In a very interesting article in the Stanford Alumni magazine, writer Rachel Kolb explains more about the pitfalls and benefits of lipreading. Kolb knows all of this firsthand — she has a hearing impairment and graduated from Stanford in 2012. In her article, she says even the best lip readers only discern about 30 percent of what is being said.

With all this in mind, I found a lipreading challenge on an American Sign Language (ASL) forum, and Cam (our social media guru here at Easter Seals Headquarters) agreed to take it with me. We had some surprising (and not so surprising) results, but before we share our scores, we have a challenge for you blog readers out there.

Cam and I challenge you to try lipreading, too. Take the lipreading challenge and then leave your scores and your reactions to lipreading on our Easter Seals Facebook page. Keep your eyes on the Easter Seals blog for a future post, where Cam and I will share our scores. I can tell you right now, one thing we both learned is that lipreading is not as easy as we thought it might be. Good luck!


Comcast Internet Essentials program increases family-focused digital literacy

Last year, I wrote a post about one of our fabulous corporate sponsors, The Comcast Foundation and its Internet Essentials program. I wanted to update you on this resource because the progress is remarkable!

Internet Essentials  offers low-income families in Comcast markets high-speed Internet service, a low-cost computer, and access to free Internet trainings. It’s an affordable solution that supports Easter Seals families and other families across the country, too. This can be a huge help, especially now that it’s time for back-to-school preparation.

The Internet Essentials program just goes to show how Comcast is working to expand digital literacy by bringing technology into every home. A blog post written by David L. Cohen, Executive Vice President and Chief Diversity Officer in Community Investment at Comcast, reports that the Comcast Foundation has connected more than 350,000 families to the Internet in the past three years. Three hundred fifty thousand families means 1.4 million individuals. That’s more than the population of San Diego or San Antonio, almost the size of Philadelphia, and more than the population of 11 states, including Maine, New Hampshire, Alaska, Montana and Hawaii!

New this year, Comcast will include up to six months of complimentary service for any new family that has not yet applied for Internet Essentials. Comcast knows there is no more important back-to-school supply than Internet service at home. In today’s classrooms, as well as in the workforce, students need to be digitally ready. Since Internet Essentials launched in 2011, Comcast has:

  • invested more than $200 million in cash and in-kind support to help close the digital divide
  • reached more than 1.75 million people through the program’s non-profit digital literacy partners
  • sold nearly 30,000 subsidized computers at less than $150 each.
  • distributed nearly 37 million Internet Essentials brochures at no cost
  • broadcast nearly 4 million
  • welcomed nearly 2.2 million visitors to the Internet Essentials websites in English and Spanish and the Online Learning Center
  • offered Internet Essentials to more than 30,000 schools and 4,000 school districts in 39 states and the District of Columbia.

The Comcast Foundation has also partnered with thousands of community-based organizations, government agencies, and federal, state and local elected officials to spread the word about Internet Essentials. They’ve dedicated $1 million in grants to create Internet Essentials Learning Zones, where networks of non-profit partners are working together to enhance public Internet access and increase family-focused digital literacy training in Atlanta, Chicago, Denver, Fresno, Miami, and Seattle, among others.

Thank you, Comcast. Your Internet Essentials program empowers people with special needs and their families and helping them to achieve the best quality of life possible.


Basic signs everyone should know

Lots of people who run across a person who is deaf, or a signer, find themselves wishing they knew a couple of basic signs.

I’m deaf, and I often wish people around me knew basic signs. That way I could briefly communicate with them if I needed to.

Some online links are great for learning to sign, but where do you start? American Sign Language is overwhelmingly visual and complex.

To start with the basics, we don’t sign words such as “are” or “is” or “a” or “to.” Those words are omitted to make it a visual language. We sign “how you?” instead of “How are you?”, “where bathroom?” instead of “Where is the bathroom?” and so on. English grammar brings awkward pauses in our signing. I hope this makes sense!

The most important skill you should know is how to finger spell the alphabet. With this, you can finger spell a word and ask for the sign that accompanies it.

Here are some important phrases in American Sign Language:

  1. Good Morning / Good Afternoon / Evening
  2. How are you? Good / Fine
  3. Have a good day / Have a good night / Have a good weekend
  4. Thank you/You’re welcome
  5. Can I help you?How can I help you?
  6. Where is _____? bathroom/food (eat)break roomofficefront deskconference room
  7. How do you sign [finger spell word]?
  8. Sorryexcuse me / please
  9. My name is [finger spell name].
  10. Nice to meet you!

With these phrases, you can have a short conversation with a person who is deaf and a person who is a signer. Those signs are not the only signs you should know, though. If you find yourself in a situation where you will have repeated encounters with a person who is deaf, I encourage you to learn more signs to carry on a longer conversation.

Here’s a link to many more signs that can be constructed into sentences. I hope you get a chance to use some of the signs you just learned! The American Sign Language is a beautiful language, and I’d love for you to be able to enjoy it as much as I do!

P.S. If you’re stuck with basic signs and do not have an interpreter present, do offer a pen and paper, or a computer/tablet to converse back and forth. You’d be surprised how much a simple gesture like that can mean to a person who is deaf.


Social media images of people with disabilities: exploitative or inspirational?

Stella Young is a comedian and journalist who uses a wheelchair, and I just heard her Ted Talk explaining why she doesn’t want to be thought of as inspirational (click here for the transcript). I really liked the beginning, where she talks about growing up in a small country town in Australia. “I had a very normal, low-key kind of upbringing,” she says. “I went to school, I hung out with my friends, I fought with my younger sisters. It was all very normal.”

When she was 15, someone in town approached her parents and wanted to nominate her for a community achievement award. Her parents thanked the guy and told him it was a very nice idea. Just one problem, they said. Stella hadn’t actually achieved anything.

“And they were right, you know,” she says, explaining to the audience how she got good grades and had an after-school job at her mother’s hair salon, but spent most of her time watching Buffy the Vampire Slayer and Dawson’s Creek. “I wasn’t doing anything that was out of the ordinary at all,” she says. “I wasn’t doing anything that could be considered an achievement if you took disability out of the equation.”

She claims the reason average people see people with disabilities as inspirational is because they see having a disability as a Bad Thing, and then she delivers the only line from her Ted Talk that I disagree with. She says, “Having a disability is not a bad thing, and it doesn’t make you exceptional.” I beg to differ.

I lost my sight when I was 26 years old. Adaptations like computers with speech synthesis, audio books, Braille and talking iPhones help, but being blind is a drag. I’d rather be able to see. And since only 0.5% of Americans are legally blind, like it or not, I am exceptional.

The rest of her talk was great. She explains how images on social media can be exploitive — the one of a little girl with no hands drawing a picture with a pencil held in her mouth, for example, or the child running on carbon fiber prosthetic legs. She listed some of the comments used with these photos:

  • The only disability in life is a bad attitude.
  • Your excuse is invalid.
  • Before you quit, try!

Young points out that these images and phrases objectify one group of people for the benefit of another group of people. She claims the only purpose for these sorts of images is to inspire average people, to provide them with pictures to look at and think, “Well, however bad my life is, it could be worse. I could be that person.”

That, she says, is exploitive. And you know what? She might be right.


Mannequins who have disabilities –why not?

As a young woman, I look to the media for almost everything—and everyday I’m being bombarded with images of how a young woman should look. You should be skinny but muscular. Not too much muscles or you’ll look weird. You should have a flat stomach, perfect butt and perfect bra size.

I know this is not realistic. Still, these images leave millions of young girls worrying about what’s imperfect about themselves. Images of young men in the media leave them struggling to better themselves, too. They’re supposed to be muscular with six-pack abs and amazing biceps so they can be the eye-candy/womanizer in their friend circle.

I often see magazines berating female celebrities for looking TOO skinny or fat, and I know that many young teenagers get called names on social media based on their weight. Being attacked due to your size or weight is just as wrong as being attacked because you have a disability.

Fact: in 2010, the average woman size was size 14…wait, what?! Yup. Even so, stores tend to carry more clothing in the sizes of zero and two (That’s 12 sizes below the average) instead of carrying more sizes in the double digits. Why? Because of this crazy concept of what the average size should be for women .

A few weeks ago I read Plus Model Mag’s article on REAL body image campaigns. These campaigns are taking place in department stores like Nordstrom and JcPenney, and I am THRILLED to see change, especially in 2014 (the peak of our social media era). My colleague MacKenzie Olsberg wrote a post here last December about Pro Infirmis, an organization in Switzerland for people with disabilities that created a series of mannequins based on real people.

Models and their mannequins

Models and their mannequins. Picture from

The mannequins were placed in the front windows of shops on Zurich’s main downtown street, Bahnhofstrasse, in honor of International Day of Persons with Disabilities on December 3 last year. The campaign was called “Because Who Is Perfect? Get Closer,” and it was exciting to see the beginning of an open dialogue about what really is a perfect body. Click here to see the process that went into making these unique mannequins. Perhaps one day in the near future, we won’t be disappointed when we try to look like the mannequin in the shop window.

I’ve also read several articles on Swiss’ mannequin body shape changes and on UK’s reform for bigger sizes mannequin models.

I’m thrilled to see changes happening, not only with the size aspect of women’s bodies, but for people with disabilities.

Often people who are not reflected in the advertisement or the mannequin sizes cannot see themselves in that store’s clothes, but with changes like these, now they can. These changes could help all of us feel better about our size, our body shape, and our disabilities.

So how about we start focusing on these sort of campaigns rather than linking to posts about skinny celebrities? It’s time to start embracing the normal, and the normal is ALL OF US. Let’s start supporting each other in this new path in the eye of the media. Let’s start embracing diversity and the differences of our bodies. Most of all, let’s start loving ourselves.


A.C. Moore is crafting a better world for kids

I just love crafting. I don’t often have time to craft, but when I get an idea for a project, I go all out. And when I go shopping for supplies, I walk down every single aisle. Maybe that makes me a binge crafter!

Crafting a Better World for All Kids
Each year my inner crafter gets excited for the promotion A.C. Moore, a specialty arts and crafts store, does for Easter Seals Make the First Five Count initiative. This year it’s a register donation program from August 15 to September 15, where customers can donate a dollar at checkout.

In addition to the register donation, customers who donate can partake in an A.C. Moore and Easter Seals #Selfie Contest – just take a #selfie with your signed pledge sheet, tweet or instagram @Easterseals and @officialACMoore between August 25-September 5th to potentially win an A.C. Moore Gift Card worth $25! A.C. Moore will announce four lucky winners, chosen at random, on September 8th!

With A.C. Moore, there’s great synergy between arts and crafts and learning valuable developmental skills. Whether it is with finger paint, chalk, crayons or construction paper, children love crafting and creating their own special works of art. Not only are crafts an enjoyable activity for children, simple crafting can also help children learn important skills that affect their overall development. And that’s not all: crafting provides a way for parents to observe their children’s developmental progress to make sure they are school-ready, too.

Easter Seals, a leading provider of early childhood developmental services, offers a free, comprehensive screening test to help guide parents through their child’s developmental years.

Parents can monitor their child’s milestones by taking the Ages and Stages Questionnaires® screening. the first five years of life lay the foundation for a child’s long-term success, so it’s important for parents to be in tune with their child’s development during those early years.


Remembering Robin Williams & Knowing that You’re Not Alone

Robin Williams’ death on Monday has brought mental health issues to the forefront, and a guest blogger who wishes to remain anonymous has generously offered to provide personal insight on the subject. Here’s the post:

The tragic death of Robin Williams and the reveal about his severe depression has left me reliving my own depression and the struggles I made back then (and continue to make today) to function and, well, keep going on.

I was first officially diagnosed with depression when I was 16 years old. If you’d looked at me then, you would have just seen a teenage white girl, living in suburbia with her loving family and with very little cares in the world beyond getting on honor roll once again. I was told by multiple people I had no reason to be depressed. Just smile. Just stop being sad. Just stop being dramatic. Just get over It.

I did not just get over it. At 17, I was contemplating ending my own life.

I didn’t necessarily have a method or an idea how to do it, but I wanted to cease to be. Maybe my life on paper looked idyllic, but that didn’t mean internally I was ok. I hated myself. I hated how I looked, I hated my school, I hated my family, I hated what made me who I was. Let me repeat that: every day, I hated the foundation that made me into the person I am. I hated the very fundamental things of myself. I was a giant ball of anger and despair.

Worse, for a period of time, even though I had been diagnosed with depression, I wasn’t getting the help I needed. That’s because a family member refused to believe I had depression. Perhaps they saw it as a failure on their part. Perhaps since it never happened to them, it couldn’t happen to me.

Hatred was the last emotion I experienced then, and eventually that hatred and sadness turned into numbness. Events that were supposed to make me happy didn’t. Events that were supposed to make me angry did nothing. I was no better than a ghost haunting the hallways of my family home, just wishing to move on but having no idea how.

I eventually moved onto college and started engaging in bad behavior. Underage drinking. Partying. Video Games where I would play for 18 hours a day and forget to eat. Questionable boys. Skipping class. No drugs, fortunately. I just needed something to take the edge off the numbness.

No one said a word about my behavior, because when things were darkest, I didn’t let anyone in. I presented a pretty convincing mask anytime I summoned the energy to be around people. All of this was minor at first, but with more bad decisions and the numbness of not having to feel the pain of my mistakes, I began to lose more and more. I ultimately lost a very dear friendship, and that’s when the weight of it all crashed down on me. I needed help.

It was rather surreal how easily I could get the therapy and medication I needed. I went to the doctor, said I was feeling a little blue and left with a prescription. I tried therapy and medication for a while, but they didn’t stop me from making bad decisions. The numbness didn’t go away, either, so I quit the medication cold turkey.

After a particularly difficult life event, I started self-medicating the numbness and pain away again. And then one night, when I was blackout drunk, I almost got hit by a car. That’s when I finally realized. I couldn’t keep living like this. I needed to either get things over with or get off the can, as my father would sagely say. So I got off the can.

I wish I could give a happy ending to this post, but like most things, everything is a process towards a goal. I stopped drinking for the most part, stopped partying and made a lot of apologies to people I forced away. Most have not forgiven me, and I don’t blame them.

I was seeing a therapist, but multiple times, my sessions got cut off right when we were making progress. And even when I had a therapist, you can’t keep them on call when a particularly dark thought lurks in at 3 a.m. I had no idea about depression and suicide hotlines at the time, so I felt truly alone.

It wasn’t until recently I realized that back then, even though it was a help to have the therapy and medication, I also needed someone I felt close to and trusted. Not just to listen to my problems, but just be that little light in my life that kept me going for one more day. Don’t let the darkness in your head consume you like it has already consumed the brilliant souls out there, Robin Williams included. There are always people who want to help you, who want to talk and listen to you and who love you for everything you are, even when you don’t. Get help.

Back to me, Beth Finke, here at Easter Seals. Easter Seals provides services and programs for mental health — in fact, mental health services is our fastest growing service area right now. We have 51 programs in 21 states, and they include services for children, adults and families. How each affiliate handles these services is different, of course, but many are focused on community. Easter Seals UCP North Carolina offers out-patient mental health services, and Easter Seals New Jersey offers many residential services. None in your state? Other national organizations can help, too. You are not alone.


Would this new app help you navigate an airport?

Living in downtown Chicago makes it easy for me to fly on my own with my Seeing Eye dog. We take a shuttle bus from downtown, check my bag at curbside, latch on to an airport attendant to guide us through security, on to the gate from there, ask my escort to help me find a seat near the jetway to hear where to go when it’s time to board, and…take-off! (The photo is my Seeing Eye dog Whitney and me waiting for a ride to the airport after a trip out west.)

An article in AOL Tech says San Francisco International Airport is about to unveil a product they say will make life even easier for those of us who are blind or have visual impairments find our way through an airport. Tthis fall the airport plans to unveil a Bluetooth beacon system to help passengers with visual impairments find our way through Terminal 2 using our phones “without asking for help.”

With this new app, when users with visual impairments walk past transmitters, the transmitters will send announcements through our phones about flight gates, information desks and power outlets and what the article calls “points of interest.”

I myself do not mind asking for help or being escorted to the gate, but I know that people who are blind are all different. Some of us are more independent (or more shy!) than others, and if this technology works, I guess we’ll all have more choices and more ways to navigate an airport.

And hey, if “points of interest” includes women’s restrooms at airports, I may give this new technology a try. Otherwise I can’t picture myself stopping, checking my phone, and listening to what it says in order to find something. For me, it’s just as easy to ask one of the thousands of people in the airport whether I’m at the right gate. But that’s just.

I do understand that accessibility features are often “downward compatible” and end up benefiting all sorts of people. Optical Character Recognition (OCR) and text-to-speech apps, for example. They were targeted for people who were blind when they first came out, and now lots of other people use those apps, too.

So who knows what will come of this new airport app? If anyone wants to fly me to San Francisco to check it out, hey, I’m willing — I can pack my bag and catch the shuttle with my Seeing Eye dog in a matter of minutes!

Tell us what you think of this technology in the comments section below!