‘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.

 

An Open Letter to the Presidential Candidates

Randy Rutta

Easterseals CEO Randy Rutta

Disability issues have taken center stage this election season — and it’s high time they did.

At Easterseals, we believe every American deserves to live with dignity and independence. That means we champion the issues that impact more than 56.7 million Americans living with disability, along with the estimated 62 million eligible voters in this year’s electorate who have a family member with a disability.

At this pivotal moment, we are compelled to amplify the voices of people with disabilities, and those impacted by disability, to make sure the issues that they care about most are heard — now, and long after the polls close.

With that in mind, we reached out to our clients and supporters to learn more about what they face — from access to affordable healthcare and early intervention services, to accessibility and economic well-being. Read More…

 

Taking on college and getting around campus when you can’t see it

Girl with backpackYou might remember Alicia Krage’s guest post last February about the joys and challenges of being blind and dating someone who is blind, too. Alicia lived at home while attending her local community college. She transferred to Northern Illinois University in DeKalb this semester, and her post today is about her decision to make that change.

by Alicia Krage

I got accepted to Northern Illinois University (NIU) in January, and my excitement was at
an ultimate high all summer long.

I struggled through the spring semester at my local community college. My courses at College of DuPage (COD) were difficult, and I was eager to be elsewhere. I lived at home while I was attending COD and felt ready now for more freedom and independence.

Northern Illinois University is located an hour away from my family. My boyfriend goes to NIU, and I have a lot of other friends who go there, too.

The knowledge that I’d get to see them every day and have face-to-face interactions with them instead of chatting online made me long for fall. I wanted to be surrounded by my closest friends.

However, contrary to the way that might sound, having a wonderful social life wasn’t the only thing that made me want to attend such a big school. What really attracted me was how well-known NIU’s Disability Resource Center is. As far back as my eighth grade year I can recall hearing about blind students attending NIU. I had considered going there myself after I toured the school seven years ago, but back then I was intimidated by the large campus — more than 20,000 students go to NIU.

My boyfriend is blind, and visiting him at NIU gave me first-hand knowledge of the resources and wonderful transportation services available for students with disabilities there. When I was still at COD, I’d take a train trip to see him every 12 days. I’d stay the weekend, get home on a Sunday, and
leave about 12 days later for another visit. After so many visits, I had a change of heart and applied. And am I glad I did!

When I arrived here in August I spent the first few days touring campus. I was amazed, impressed, and very happy with everyone’s reaction to a blind student walking around campus. When I attended my local community college, I’d get frantic apologies when I’d accidentally run into someone, and all sorts of unusual reactions to my white cane, too. Some people didn’t even understand what it was. It was clear I was one of very few blind students at COD.

Here at Northern Illinois University, things are different. When I walk around campus here at NIU, several people (often at the same time) stop me and offer to help. Many are very familiar with sighted guide techniques. Students here just seem very accustomed to seeing a white cane or even a guide dog.

The social aspect is fantastic. Almost all my close friends live in my building, and if they don’t, they are a five minute walk or a 10 minute drive. We use what’s called the husky Line Freedom Mobile, which is a free door-to-door Para transit service for NIU students with disabilities. It will take you anywhere in the area, and off campus after 5 p.m.

I’ve already found my favorite coffee shops and music venues, and I’ve been to pretty nice restaurants. I have yet to explore so much more!

Stay tuned for Alicia’s next post, where she’ll be describing what moving day was like and how she manages to get from class to class at such a huge college campus without being able to see.

 

A dad’s perspective: First day of kindergarten, part two

As promised in Bernhard Walke’s previous post, here’s part two of his story about his daughter Elena’s first day of kindergarten this year.

Elena

Elena on her first day of school.

by Bernhard Walke

As we spotted Elena’s aid in the school yard, we settled into line, talked about first day logistics and nervously waited for the students to enter the building. I looked around and saw some students beaming with excitement to start the first day, others clinging to a parent with subtle hesitation, and a few in outright and unapologetic hysterics.

I looked down at Elena and saw that she was still beaming with excitement. “This girl is ready for kindergarten,” I thought to myself. “She’s gonna be great.” And with that, her aid whisked Elena away and rolled her up a ramp that had been installed especially for her.

She was off to a new chapter in life, and I went off to work.

During my 35 minute commute to work, I thought a bit more about Elena’s classmates. For many of them, this might have been their first day of school ever. For Elena, she has been in school in early childhood special education since the day after she turned three years old. Thanks to the help of Easterseals DuPage and Fox Valley and so many others, the school experience was nothing new to Elena.

After a month in full day kindergarten, there have been many highs, but some lows, too. Still, I realized very early on that it’s all worth it. Just two days after school began, Elena, her mother and I were running around town doing our mundane weekly errands when four of her new kindergarten friends dragged their parents over to meet Elena. In a world where this five-year-old girl is most often recognized first by her chair, I was pleased and overjoyed by the fact that her classmates recognized my daughter first and foremost for exactly who she is: their friend.

 

Is Disability Finally Having its Moment?

Randy Rutta

Easterseals CEO Randy Rutta

The pulse and pace of disability is being featured more prominently in the public discourse, and more than ever before. Could this be the moment people in the disability community have fought for?

Last year, you’d be pressed to find an accurate portrayal of children and adults with a disability in scripted television. Today, the sitcom Speechless, about a “new” kind of family and starring an actor who really has a disability, is one of the most promising shows in the Fall TV lineup. And A&E’s Born This Way, that chronicles the lives of young adults with Down syndrome, received the Emmy for best unscripted reality television series. Read more on my Huffington Post blog.