Grateful…for autism?

FamilyIt has been eight years since we started our amazing journey with Scottie as the Easterseals 2008 National Child Representative. Time really gets away from us, but we frequently talk about the trips that we took and the amazing opportunities we had to meet and speak to so many folks about what Easterseals and autism have meant in our lives. We occasionally still get a chance to speak at some Easterseals events, and it is always an honor.

This month, as we prepare for another Thanksgiving Day together as a family, I am grateful for my busy family, our health and all the help, love, hope and opportunity that Easterseals has brought into our lives.

This time of year, I find myself reflecting on what I am most grateful for. I have so many things in my life that have truly blessed me. One of the most amazing blessings? Having an autistic son.

Now, I can’t say that I’ve always felt that way. Scottie is a teenager now and prefers being called Scott — he doesn’t mind “Scottie,” but he’s grown up! As the years passed since that initial diagnosis in 2002, I’ve grown more and more thankful for him and his diagnosis.

Many would think that I’m crazy — and maybe I am a bit, but he is such a tremendous joy to me and our entire family. He has taught me not to take the little things in life for granted, and by watching him grow and learn, I have learned so very much.

It’s simply amazing.

Sometimes, I wonder what life without him would be like, or even life without him being autistic, and I cannot imagine it. At this point I don’t even want to. I wouldn’t change a thing about him even if I could.

Being selected as the Easterseals 2008 National Child Representative not only gave a lot more people an opportunity to know and love our wonderful son Scott when he was still a little boy, but it gave us
— as a family — a chance to give back. I currently serve as the chairperson of our local Easterseals board of directors — we give back to Easterseals as an organization because they have given us more than words could ever express.

Staying involved with Easterseals also gives us a chance to offer hope to other families facing the darkness of autism. I hope that somehow, by seeing and hearing our story, there will again be light.

So, as we gather to celebrate this Thanksgiving, I will give thanks for Scott and his sisters, Sarah and Carly, as well as my husband Shannon and all of our extended family — including our wonderful Easterseals family.

 

Our new Illinois senator uses a wheelchair

WheelchairThe 2016 presidential election is getting so much attention that some of the more interesting state and local races seem to be somewhat overlooked. The Senatorial race here in Illinois is a good example. The votes have been counted, and our next senator from Illinois will use a wheelchair.

Democratic Senate candidate Rep. Tammy Duckworth served in Iraq and lost both legs when a rocket-propelled grenade struck the helicopter she was co-piloting in 2004. After her victory over incumbent Senator Mark S. Kirk in yesterday’s election, Tammy Duckworth will be only the second woman to serve as senator of Illinois.

An article in the Chicago Tribune during tammy Duckworth’s campaign pointed out that running a Senate campaign involves lots of travel and complicated logistics. From the article:

Duckworth said she and her staff have a pre-event checklist to make sure the site is up to their standards — and that means making sure even the bathrooms are wheelchair accessible.

“I don’t go to any place that isn’t accessible even though I have artificial legs that I can walk in; it’s on principle,” she said. “If someone in a wheelchair can’t get in it, I’m not going to do an event there because just because I can get in there doesn’t mean somebody else can.”

The article said Duckworth often heard from voters who question her ability to serve. A question about using a wheelchair in public during the campaign came up when she first ran for Congress. “I’m not ashamed I’m in a wheelchair. I earned this wheelchair,” she said. “I’ve always insisted it’s not something that we hide.”

Congratulations to Tammy Duckworth — we look forward to having someone like you represent us in the U.S. Senate in 2017.

 

Chance the Rapper wants us to vote: What to do if you have any problems tomorrow

Chance the Rapper’s giving a free outdoor concert later this afternoon here in Chicago along with Twin Peaks, Malcolm London, and Chance’s brother Taylor Bennett. It’s for a good cause: Chance got these acts together to remind people to vote Tuesday, if they haven’t already. I’m a fan of Chance the Rapper, and I’m a fan of voting. I’ll be there.

Chance is on the GOTV case.

Chance is on the GOTV case.

I wrote a post here last week about times I’ve had problems accessing the talking voting machines at our local polling place in the past, and though I’m hoping for the best tomorrow, I’ll be heading to the booth armed with special phone numbers just in case.  Easterseals has put together a comprehensive resource for people with disabilities to use on election day, which includes a wallet card with important numbers on it for you to take with you to the polls. Take a look.

These are some of the hotlines that’ll be ready to help people with disabilities who have problems voting:

  • U.S. Department of Justice, Civil Rights Division, Voting Section: for complaints related to ballot access, call 800-253-3931. TTY: 877-267-8971
  • Lawyers’ Committee on Civil Rights under Law Election Protection Hotline: For help with disability/access issues, call 866-OURVOTE (866.6878683).

Here in Illinois, Equip for Equality will have advocates available by telephone to answer questions about any voting problem people with disabilities might experience. You can call them when the polls are open tomorrow at 800.537.2632, or TTY at 800.610.2779.

In some previous elections my issue with the voting machine couldn’t be resolved, and my husband, who can see, had to sign an affidavit to be able to help me with a written ballot. Voting specialists on these hotlines recorded details and referred my issue “to the proper authorities for follow-up action.”

My hope is that the follow-up worked, and that things go smoothly tomorrow. Not only for me, but for all of us at the polling places. And if not, it is reassuring to know there are people on these hotlines ready to help.

 

Blind, but entitled to cast a ballot — op-ed piece in the New York Daily News

Thanksgiving is coming soon, and many of the posts we’ll be publishing on the Easterseals national blog this month will be devoted to the people and things we are grateful for. What better way to start than with an op-ed piece published in the New York Daily News this week?Much to my happy surprise, they didn’t edit out my favorite line of the whole thing: “Most of us aren’t fortunate enough to have a spouse named Mike.” This month –and every month of the year –I am grateful to my husband, Mike Knezovich, for adjusting to my blindness along with me. The op-ed explains — here is Blind, but entitled to cast a ballot” in its entirety:

By Beth Finke

Monday, October 31, 2016

I Voted Today stickerI lost my sight in 1986, to a rare condition called retinopathy. By then I’d already voted twice, in national elections, as a fully-sighted person.

Struggling to adjust to blindness, I was determined not to lose my ability to vote — not just casting a ballot, but the act of voting itself.

Going to the polls is essential. There’s no substitute for the feel of a voting device in your hand or the sound of your vote actually registering, a certainty that voting by absentee ballot can’t provide.

For three decades now I’ve searched for a voting experience equivalent to the one I enjoyed when I could see.

It’s a fair expectation. People who are blind are guaranteed that right by law — many laws, in fact, including at the national level alone: the National Voter Registration Act, the Voting Rights Act, the Help America Vote Act and the Federal Rehabilitation Act.

The technology has existed for many years, too. Text-to-speech software translates the candidate selections on the ballot into spoken choices; a special keypad then enables blind voters to choose their candidates by touch, with the selections confirmed by voice again before the ballot is cast.

Some places — like New York City — have more or less that setup, with ballot-marking devices that allow people who can’t see to make their choices in private.
But in many places, blind people can’t choose candidates on their own. The systems may work in theory, but they don’t in practice.

During the last 30 years I’ve made my way to the polls many times, each time hoping to recapture what I felt emotionally, and what I could actually do, before I became blind. What I experienced were more journeys of trepidation than fulfillment, not to mention the convoluted measures needed to approximate an act guaranteed by our Constitution.

We’ve come a long way of course since 1988, when I first voted as a blind person. The technology back then was punch card, so my husband Mike joined me in the booth, selected the candidates for me and placed my hand on top of the stylus so I could physically punch the ballot on my own.

In a subsequent election, Mike was away on business. I made it to the polls myself, but quickly discovered how much assistance I’d need without him. Two judges — one Democrat, one Republican — crowded with me and my seeing eye dog into the tiny polling booth.

I didn’t bother asking them to put my hand on the stylus so I could punch the card myself, just allowed a third party to vote for me with a second third party to witness.

Yes, I cast a ballot, but the experience was invasive and overheard by many.

Text-to-speech software became available in the mid-2000s, and the news coursed quickly through the blind community that we could now vote independently and privately. I live in Chicago, and the city sponsored free trainings at Chicago public libraries. I spent many hours there, getting a feel for the machines and practicing with the buttons on the handheld device.

When I arrived at the polling station in 2008, the technology was in place but no one could operate it. There’d been no training of staff in the sequences needed — enabling the software, activating the audio, even finding the headphones that ensure privacy of selection.

So backwards in time we went. Once again my husband Mike had to sign an affidavit, accompany me to the booth, read the candidates’ names out loud and hear my choices in response, as did everyone else within earshot. The same scenario repeated in 2012 during the national elections.

Next week we again have a national election of great import, and again, my hopes are raised that I’ll be able to exercise the same basic right that sighted people do — to vote in private without public assistance. Millions of Americans with disabilities share this ambition. . Instead, we need to rely on larger systems and resources. “Save yourself the trouble,” some suggest with a shrug. “Vote absentee.”

On a purely technical level, I won’t vote absentee as it’s historically fraught with challenges, including ballots getting damaged or lost, and in many cases not even counted.

It’s the larger imperative that compels me to the polls, however. People need to see me voting. The astonished comments I hear from people waiting with my seeing eye dog and me in queue tell me they really do want me to vote.

Those of us with disabilities can’t let others forget about us. In the not-too-distant past, people with disabilities did stay home, not just on voting day, but perpetually. We can never go back to those days, and voting publicly is one way to ensure we don’t.

Finke is the interactive community coordinator at Easterseals
headquarters in Chicago and the author of two books.

 

‘If I knew then…’ 5 Tips for Teens with Autism

Kelly and her cat

Guest blogger Kelly Hutchins

Guest blogger Kelly Hutchins shares her five tips for young people with Autism in today’s post… things that she wishes she’d known when she was a teenager. Now a pastry chef who recently completed her studies at the French Pastry School in Chicago, Kelly is eager to share her own experience living with autism and to inspire others to do the same.  In addition to sharing her delectable confections with friends and family, Kelly is an avid cat lover, PAWS volunteer, and self-advocate.

Being a teenage girl is tough. Being a teenage girl on the autism spectrum can be brutal. Here are 5 things I wish I had known when I was in high school.

Everyone around you is just as insecure, especially the bullies.

The most insecure people are usually the biggest bullies. The only reason a person would do that is if they are insecure with themselves. I’m not excusing the actions of bullies, rather I want to reassure people who are bullied that you are stronger than the people who want to bring you down.

The two keys to success are to work hard, and be kind.

Yes, some people manage to bully their way to the top, but they are few and far between. Conan O’Brien once said “If you work hard and are kind, amazing things will happen”.  And I can tell you from personal experience that this is 100% true. The bullies usually don’t make it to the top, and when they do they never stay there. Everyone you meet on the way up, you will also meet on the way down. The people who end up with real success and happiness are the ones who work hard and are kind.

Don’t be afraid to make your needs known.

Making your needs known can be very intimidating, but it gets easier with practice. You may be a minor, but it’s your life, and your future, so you deserve to at least be heard. If you need help with taking notes in class, or if you need testing accommodations, you need to tell your parents and guidance counselor.  Nothing comes of nothing, so speak up, because your needs are important.

Dressing like everybody else won’t make you happy.

Use high school and college as a time to experiment with your own personal style. If there is a time to be wild, it’s now. I spent the first two years of high school trying to look like everybody else and all it did was make me miserable.  The only way to win the game is to stop playing, and start enjoying yourself.

You are stronger than you know.

The things you now see as your weaknesses may very well turn out to be some of your greatest strengths. So embrace who you are, and speak up for others and yourself. You are not a wallflower, you are a beautiful and unique human person. You will be surprised at just how strong you really are, if you give yourself a chance.  Remember that all great people were once teenagers.

 

Cute wheelchair costume! But who is it for?

Girl in cook costume

Elena’s costume this year is inspired by one of her favorite movies, Ratatouille.

A colleague’s husband wrote a column for the Chicago Tribune about navigating the city as a modern dad on his mundane weekend errands with two kids in tow. In his essay, Jeremy Manier took note of strangers approaching him during the trip and reacting to his parenting by exclaiming “What a Dad!”

It’s in these simple and regular events that fathers often get more praise than mothers because, perhaps, the bar is set low for men. Regardless, Manier dubs these simple acts of parenthood as “What a Dad!” or “W.A.D.” moments. Here’s an excerpt from Manier’s essay:

Be assured, mothers, this is not some self-satisfied father’s lame attempt to horn in on your Day. In fact, after the second time it happened, I started thinking the huzzahs aimed at me actually reflected badly on dads and our iffy history of child care.

If I’d been a mom, no one would have noticed me feeding my infant son with my preschool daughter at my side. That’s what mothers do, right? But being a man, I got credit just for showing up and not losing either kid in the electronics aisle.

Because my young Elena has a very visible disability, I would argue that my W.A.D. moments are even more pronounced than Manier’s. A trip to the grocery store to pick up milk, vegetables, and dinner? “What a Dad!” Flying a kite with my daughter? Total W.A.D. moment. Speaking to the parents in Elena’s class about her disability? W.A.D.

My proudest W.A.D. moments for the last few years have certainly been Elena’s Halloween costumes. I have to admit that I have truly been knocking it out of the park. I found her disability not only as a challenge to my creativity, but also as an opportunity to come up with something witty within the constraints of her mobility.

Elena wasn’t able to sit independently early on in her life, so her first year trick-or treating she came as a lobster in a pot. The next year she was a bag of money stolen from a bank. And last year? I converted her wheelchair into a construction vehicle. She came as a bulldozer.

Elena’s costume this year is inspired by one of her favorite movies, Ratatouille. Continuing my streak of Halloween excellence and creativity this year, I’ve converted her wheelchair to a full stove and oven. Elena will don a chef’s hat and apron while (hopefully) sitting comfortably behind a stove — I made that stove out of wood that fits over her wheelchair.

Elena premiered her costume a few weeks ago at the 2016 Easterseals DuPage and Fox Valley fashion show. The theme this year was Hollywood. After blogging about Elena for the last year, she’s kind of turned into a local celebrity (well, at least in my mind) and we were given a table right next to the runway.

Elena rolled down the runway with her three cousins, two who dressed as servers and one who joined Elena dressed as a chef. Her cousins smiled and waved as they slowly walked down the runway, but I couldn’t help but notice a slight grimace and hint of discomfort on Elena’s face. Clearly, she was uncomfortable in her chair. She was not enjoying the spotlight as much as I thought she might.

The Easterseals fashion show is wildly successful and celebrates children of all abilities, but I wondered. How much was Elena herself enjoying the event? Days before the event she had been experiencing what we call “bad body days” — times when her body just doesn’t listen to her and ultimately causes her pain or discomfort. Was it that? Or was it that maybe, just maybe, she just didn’t want to be a chef for Halloween? I’m not really sure.

What I did realize, however, is that I never asked Elena what she wanted to be for Halloween. Is it an awesome costume? Yes. But for whom? For Elena? Or for me?

I had completely neglected Elena’s opinions and voice. It was then that I realized that my W.A.D. moments were perhaps for myself and not for my daughter.

We tried on the costume last night and she seemed to be happy, so right now it gets the green light for this year’s Halloween. But if she wakes up on trick-or-treat day and decides to be Elsa from Frozen, one of my goofy costumes, or even the eponymous Princess Elena of Avalor, that’s fine, too. Regardless of the choice, I want it to be hers. What a kid!

 

Halloween costumes with wheelchairs and walkers? Try Industrial-strength Velcro

girl in costume

Rocket girl!

A blog called Ability Hacker published a post linking to ours about Halloween costumes and heralded the merits of industrial-strength Velcro when it comes time to come up with costumes for kids with disabilities and special needs. Post author Amy said that when doing costumes incorporating her daughter’s walker, one of her favorite clever and crafty tips is using industrial-strength Velcro.

“The stuff is amazing,” Amy writes. “Super sticky back to hold it on, and the Velcro holds super secure.” She says regular craft Velcro can’t hold a candle to it, and to prove her point, she links to costumes she’s put together for her daughter with her walker in year’s past:

Halloween is just a week away, and industrial-strength Velcro might be exactly what you are looking for to make that special costume do what it’s supposed to. Happy costume making!

 

7 Halloween Tips for Kids with Disabilities

Halloween is coming, and for some parents of children with disabilities, it’s a holiday that can come with a bit of stress. With that in mind, I’m offering some tips to help your child — and you —enjoy Halloween this year:

Batman costume in wheelchair

A child in a Batman costume.

    1. Let your child’s interests shine. Help your child choose a costume that reflects his/her interests
    2. Learn to incorporate your child’s wheelchair into his/her costume. If your child uses a wheelchair, a lot of great and creative ideas can incorporate the chair into their costume.
    3. Do a trial run before the big day/night. Some costumes might be unexpectedly uncomfortable or cumbersome, and you’d hate to wait until 5 minutes before you’re about to leave for school or trick-or-treating to find that out!
    4. Before Halloween, put your child’s costume on and take a long walk around the house, or the block. This will help make sure that your child is comfortable and will be able to enjoy the costume and move in it easily.
    5. Talk to your child about what they might expect. Sometimes Halloween means your child is exposed to things that might frighten him/her: Haunted houses, scary costumes or noises. Talk to your child about things they might encounter during trick-or-treating, and practice self-calming skills in case they do get frightened while out that night.
    6. Research the sorts of treats your child can eat. Many children with disabilities may have food allergies or sensitivities that limit the treats they’re able to eat.
    7. If your child is non-verbal, Halloween can be a great opportunity to work on initiating communication! Program your child’s communication device to say “Trick or treat” or ask his/her teacher to design a picture symbol your child can use as he goes door to door.
Elena in lobster costume in a pot

Bernhard’s daughter, Elena, in a lobster costume.

Easterseals blogger Bernhard Walke’s daughter inspires him to come up with unique costumes for her every year. Tiny Elena wasn’t able to sit independently early on in her life, so her early costumes were made knowing her mom or dad would be carrying her. One year they came as chefs with Elena as a lobster carried in a pot,

The next year Elena’s aunt sewed pieces of green felt rectangles together to transform her niece into a bag of freshly pilfered cash for her parents, dressed as robbers, to show off.

Elena’s costumes became even more exotic after she graduated into a wheelchair. Last year her father used a collection of cardboard, wood, duct tape, zippy ties, and obnoxious yellow construction paint to convert Elena and her wheelchair into a bulldozer. “After a few nights painting, sawing, cursing, and imbibing a few beers, I transformed her wheelchair into a heavy-duty earthmover,” he laughs. Be sure to check out six-year-old Elena’s costume this year.

 

How does that white cane work, anyway?

Donna

Donna at age five.

White Cane Safety Day (also named Blind Americans Equality Day by President Barack Obama in 2011) was celebrated over the past weekend, and when I read her Taking on college and getting around campus when you can’t see it post, I took note when guest blogger Alicia Krage mentioned that at the local community college she used to attend, many of her fellow students had no idea what her white cane represented. “Some people didn’t even understand what it was,” she wrote. I’m here to try to explain.

The white cane is a mobility tool used by people who are blind or who have low vision to get about independently. Think of the cane as an extension of your arm to reach out to things on the ground and in front of you. The white cane helps you find obstructions and get around them safely.

Here’s how it works: the person holds the cane in their dominant hand, roughly centered in front of the body, and the cane is swept from left to right in a pattern about shoulder-width. It sweeps to the left as the right foot steps and back to the right as the left foot steps, thus clearing the pathway before each step.

Through the feel of the tip of the cane against the ground, it is possible to detect changes in surfaces, grates and man-hole covers, steps and curbs, and obstacles such as poles, signs, planters, and trees. Each person decides how fast to walk based on their comfort level in making adjustments to the obstacles found with the cane

As I grow older, I find that I move a little slower to allow for reflexes that aren’t quite as sharp as they once were. On the other side of the spectrum, there are people who are blind or have visual impairments who use a cane to aid them in taking their daily run!

My first experience with the white cane was when I was five years old. A neighbor who was blind was attending college and studying law. He came to visit my mother to talk about all the potential for leading a fulfilling life as a person who is blind, and he brought a child-sized cane along. I remember him showing me how to hold it and sweep it back and forth in front of my feet to alert me to obstacles and steps, but I confess that I was not giving it the attention it deserved.

At five years old, I was the mistress of my environment which consisted of my house and a large front and back yard. I knew where the swingset was, along with where all the doors, steps, furniture, trees, plants, and other such landmarks were in my domain and had been navigating them successfully without a white cane as a blind person since the age of three.

The need to use a cane to get around was not something I embraced at an early age. I had a hefty dose of imagination, however, and easily turned this ever-so-practical tool into a wand, a sword, or a bat. When propped on other objects (such as dining room chairs) my white cane became a pole to jump over.

My mother was no one’s dummy. She quickly identified the child-sized white cane as a weapon of mass destruction. The mobility device was banished to some place well out of my reach until I started school.

In elementary school I received more instruction on how to navigate larger environments – the school campus, for one. It wasn’t until I was 16 years old, however, that I got my first comprehensive training on how to use the cane. This is known as orientation and mobility training, O&M for short. The purpose of O&M is to teach people who are blind to safely and independently navigate the world using the white cane. The summer training program culminated in learning to use public transit independently. That is undoubtedly the single most important set of skills I have learned throughout my life.

Later on I decided to train with a guide dog, and the basic skills I learned in O&M were necessary to make that transition successful. I never completely stopped using my white cane, though – I still use it in certain situations. I’ve also gone long periods of time between guide dogs in which I returned to using the cane full time.

I can’t emphasize enough the role of independent mobility in my life. When I learned that I could walk around unfamiliar places, cross streets and take trips on the bus by myself, my confidence soared. Not only was I confident about my ability to travel, but this confidence flowed over into other things I wanted to accomplish such as going to college, getting work, developing a career, having a family, and so on. I knew I could accomplish all of these things because I had the skill I needed to get to all the places I needed to go.

So when I hold a cane in my hand, I don’t think of it as a symbol of blindness. It represents my ability to take off and do what needs doing!

 

Taking on college with a disability, part two

Ali and Joe.

Ali and Joe.

Alicia Krage’s guest post last week about her decision to transfer from her local community college to Northern Illinois University in DeKalb got a lot of positive attention. She’s back today with a post about moving from home to a dorm and settling in to university life.

by Alicia Krage

My move in day was August 17. My parents, along with one of my sisters, helped me move into my dorm room at Northern Illinois University (NIU).

I had requested a single room with my own private bathroom, and I got one. It is a decent size, and I’m happy to have so much space.

The move took several hours, as did running through a few routes — from the lobby to the elevators, from the elevators to the dining hall. After all that, I was exhausted.

It wasn’t until my parents and sister left that it finally started to sink in: I was on my own. Instead of being nervous, I was unbelievably excited.

My boyfriend Jo is blind, too, and he’s been studying at NIU for two years now. Having Joe here is a big help. After my family left, he offered to run through some routes with me, despite knowing my family had helped me earlier. I declined.

But then he thought up a different task: How will I know the difference between my room key and bathroom key? My mother had already put a sticker on my room key to tell the difference, but Joe helped me figure out another method just in case the sticker we used might fall off –which it did a few days later.

He showed me the teeth on my room key and then my bathroom key and pointed out that the teeth were more curved on the bathroom key. That is how you can tell the difference. I was impressed! This method works perfectly.

Getting to classes isn’t as bad as I thought it might be. Most of my classes are in one building on campus, but that building is big. It can be intimidating — and confusing.

I’ll often stop others in the hall to ask for assistance, and over and over again my fellow students cheerfully say, “Of course!”

Now I often run into people who have already offered me their arm and led me down the hall somewhere or another once before. We might not be friends, but I’m glad I’m a familiar face on campus.

The dining hall is also wonderful. I was already familiar with their accommodations and procedure from my frequent trips to visit Joe the past two years. The dining hall is a short walk from the elevator (which beeps for every floor). Someone is always at the front counter where your card is swiped, and they often greet me by name (again…I’m glad I’m a familiar face).

A worker swipes my card, then uses a walkie-talkie to request assistance from a student worker. The student worker then leads me down the ramp and into the food court, where they ask me where I want to go.

There’s Traditional, which has a different menu every day, Pizza and Pasta, The Grill (which has the same thing every day), among other options. They fill my tray and seat me directly by the ramp. That way I can easily exit when I’m finished.

I’m sitting in my dorm room typing this, and it’s amazing to look back on all of this and realize that it’s only been a little over a month since I moved in. I’ve had the most amazing start here, and I’m so happy knowing there’s so much ahead of me – so many new experiences, challenges, and many more wonderful people to meet.