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

Anja (age 9) and her dad

Anja (age 9) and her dad

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

Valentine’s Day love for my dad

by Anja

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

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

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

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

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

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

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

 

A tribute to my Uncle Gerald

Uncle Gerald

Uncle Gerald

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

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

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

by Katie Irey

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

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

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

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

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

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

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

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

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

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

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

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

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

ES_eNews_Love-012216-R1Read many other stories and tips about love, relationships and disability on easterseals.com/love.

 

Everyday technology that benefit people with disabilities

Stevie Wonder and the panel

Stevie Wonder and the panel

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

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

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

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

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

 

Plowing through: Snow removal and accessibility

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

Photo of Beth and her guide dog making their way through a shoveled, tunnel-like path.

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

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

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

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

 

Did the ALA pick the best 4 children’s books about disabilities this year?

emmanuel's dream book cover of boywith 1 leg riding bikeFour children’s books about disabilities have been honored this month by the American Library Association (ALA) as “outstanding books that portray emotional, mental, or physical disability experiences.” The four books awarded with a 2016 Schneider Family Award are:

  1. Emmanuel’s Dream: The True Story of Emmanuel Ofosu Yeboah by Sean Qualls and Laurie Thompson. Emmanuel Ofosu Yeboah’s true story was also turned into a film called Emmanuel’s Gift, which was narrated by Oprah Winfrey.
  2. Fish in a Tree by Lynda Mullaly Hunt. This book by the author of One for the Murphys teaches readers that “everybody is smart in different ways.”
  3. The War that Saved My Life by Kimberly Brubaker Bradley. A story set during World War II about a nine-year-old named Ada who has never left her one-room apartment.
  4. The Unlikely Hero of Room 13Bby Teresa Toten. A novel for young adults about teens dealing with obsessive-compulsive disorder, this book also won the Governor General’s Award in Canada.

fish-in-a-tree-book-2016Schneider Family Book Awards are given out on an annual basis to books that best portray some aspect of living with a disability (or that of a friend or family member). The disability in the winning story can be a physical, mental or emotional one, as long as the book emphasizes the artistic expression of the disability experience for children and/or adolescent audiences.

Congratulations to this year’s winners!

 

What is your biggest challenge of the day?

Beth talking to a crowd of 200 kids

Beth at the elementary school giving a talk

My Seeing Eye dog Whitney and I started our new year of elementary school visits in a big way: we took a commuter train to Elmhurst (The Chicago suburb where I grew up) and gave a presentation to 250 kindergartners, first-graders, and second-graders. All. At. Once.

Whitney usually leads me to the train station in downtown Chicago on her own, but when my gem of a husband, Mike, said he’d accompany us to the train that morning, I had five reasons to swallow my pride and accept his generous offer.

  1. Freezing temperatures — if Whitney and I found ourselves lost or turned around for just a few minutes, we might have ended up with frostbite!
  2. Snowy slippery sidewalks
  3. Salt (Mike can spot it on the roads and help us avoid those areas so it doesn’t end up in Whit’s paws)
  4. The train we needed to catch left at 7:40 a.m., which meant we’d be approaching the train station precisely when commuters were getting off trains and rushing to work
  5. And oh, yeah. I still have a cast on my broken left hand.
Seeing-Eye dog Whitney sitting at Beth's feet

Whitney at my side while I give my talk to 250 kids

The kids at Lincoln School were sweet, polite, and very curious. The Q & A part of the presentation was entertaining, as always. A sampling of their questions:

  • What does your dog like to chase?
  • How can you tie your shoes if you can’t see them?
  • How long did it take you to learn to read and write Braille??
  • How do you write if you can’t see?
  • Do you shop by yourself?
  • Can you write cursive?
  • Does Whitney ever slip on the ice?
  • Does your dog keep you safe from other things?
  • Do you always have to say your dogs name before you tell her what to do?

To answer that last question, I picked up Whitney’s harness and told the kids that when you’re training at the Seeing Eye school they teach you to always say your dog’s name before giving them a command. “If I just say the word ‘right’ like I just did there, Whitney doesn’t even notice, but if I say, ‘Whitney, right’….” I had to stop talking right there, mid-sentence. Whitney had immediately flipped right and was guiding us toward the hallway! “I guess the Seeing Eye knows what they’re doing,” I said with a laugh. The kids laughed right along. Whitney was a big hit.

To me, the most thoughtful question from the kids was this one: “What is your biggest challenge of the day?”

My days have been particularly challenging lately with this cast on my hand, but my husband Mike and other friends and co-workers here at Easter Seals National Headquarters have made my one-handed days far less challenging than they would have been otherwise. Huge thanks to all of them. With any luck I should have this *&)#! cast off my hand by this Wednesday. I have my fingers crossed — the ones on my right hand, at least.

 

Keeping disability news coverage alive

Karen Meyer image courtesy of ABC 7 NewsA Disability Culture class from Chicago’s DePaul University used to take a field trip to my apartment once a semester to get a glimpse, so to speak, of what it’s like to be blind and live in a big city. The class was taught by Karen Meyer, who is deaf. She can read lips, and I learned to use a lot of gestures and always face her when we talked.

In addition to teaching at DePaul, Karen was a reporter for Chicago’s ABC 7 (WLS-TV) News until she retired. DePaul classes stopped coming over every semester when Karen retired from there, too, and moved to sunny California. Knowing how unusual it is for a TV news show (whether local or nationwide) to ask a reporter to focus on disability issues, I pretty much assumed ABC-7 would discontinue its disability beat altogether.

I’m happy to say I was wrong. ABC 7 in Chicago has kept their disability beat, giving it to special projects producer Sylvia L. Jones and Hosea Sanders, a prime-time anchor at the station.

In a story in the Columbia Journalism Review this month, Jennifer Graves, the president and news director for ABC 7 said that they had a long history of serving the disability community through Karen’s reporting, and they want it to continue. “Karen Meyer blazed the trail for that kind of reporting,” she said. “When she retired, we felt it was important to continue to tell those stories.”

Neither Jones or Sanders has a disability, and Jones acknowledged she reports from a “position of ignorance.” She says she won’t pretend to be an expert, but she understands full well there is a community out here that needs to be heard. From the Columbia Journalism Review:

Being on the beat has changed how Jones sees the world, she said, making her more attuned to the subtle ways people with disabilities face discrimination. “I definitely look at the world through a different lens,” she said.

Kudos to ABC 7 in Chicago for staying with the beat. As they say in the broadcasting biz…stay tuned.

Does your local news cover disability issues? Do they do it well? Let us know in the comments section below.

 

To Don’t List: 5 things parents of kids with special needs should NOT do this year

School is back in session after the holidays, and things are slowly getting back to “normal” – whatever that is, right? Rather than burdening parents with a list of things to add to their to-do lists for the new year, this seems the ideal time to remind parents to avoid the traps they can fall into when raising kids with special needs.

FriendshipCircle.org logo with purple ringThis “to-don’t” list originally appeared on the Friendship Circle Special Needs Resource blog by Rivka Caroline. I hope it does exactly what this guest blogger intended it to do: help parents of children with special needs breathe easier, live more calmly and feel more taken care of.

A ‘To-Don’t’ List For Special Needs Parents: The Classic Cheat Sheet

Caring for our children with special needs is often a full-time job, which leaves little time and energy for the wholesome nurturing of ourselves; the tired, overworked and undernourished special needs parents. I’m talking chocolate, caffeine, shopping; whatever you need to get you through the day.

As a veteran special needs mom of a 10 year old, I know that there is no shortage of items on your to do list. Therefore, I propose a list of “To- Don’ts” that hopefully will help you breathe easier, live more calmly and feel more taken care of.

Here are the five classic lessons I have learned (often the hard way) that should be on your ‘To-Don’t’ list at all times:

1. Don’t Burn the Midnight Oil
Sleep deprivation is a form of torture.

After a long day of running to therapy appointments, dealing with meltdowns, negotiating bedtime plea bargains or just being a special needs parent, it can feel like a hero’s victory when you finally reach the touchdown of a quiet house and sleeping children.
Then you want to start your day because it’s, once and for all, peaceful!
Logical? Yes! Practical? No!

Sleep deprivation is an actual form of torture and while 1:00 am may seem like the perfect time to check your email, rearrange the den or clear that pile of clutter by the front door, it’s just not a good plan. Stop that! Run yourself a relaxing bath, curl up with a good book and/or go to sleep.

If you do need to burn the midnight oil once in awhile, combine it with an afternoon nap on the following day. Just don’t do it every night, for goodness sake!

2. Don’t Make Dr. Google Your Best Friend
Googling your child’s symptoms will not empower you or give you useful tools. It will destroy your soul and give you nightmares. If you really want to network, join a Facebook support group. There is more wisdom, camaraderie and hope in these groups than you can ever dream of finding on one of those random websites.

3. Don’t Try and Be Normal Every Day
Some days you are just going to be weird.
Life is challenging enough without the added emotional load of a child with special needs. Some days you are going to rock it and some days you are going to be awkward. Your job is to constantly be aware of what ‘hat’ you are wearing so that on off days, you don’t crush your friend, your kid’s teacher or the person in front of you at Starbucks who can’t decide if he wants chocolate or cinnamon.

4. Don’t Become that Toxic Friend
Don’t become that person who has no empathy left once she becomes a mom of a child with special needs.

Yes, you may have had the equivalent of an emotional amputation, but that doesn’t mean that your friend with a different injury has no pain. On really rough days, you may not be able to access a whole bunch of empathy. You always have the right to ignore the phone and call the person back later. However, on most days, you should be able to hear a good friend’s troubles without turning into a psycho.

If you are really struggling with this issue, perhaps invest in a few therapy sessions before you ruin relationships with all those you hold dear.

5. Don’t Ignore Your Spouse
You don’t want to know the statistics of how many marriages of parents that have children with special needs fall by the wayside (don’t Google, see #2). Make sure that you schedule date night at least twice a month and the coordinate babysitting in advance.

Do not make this a family business meeting about your children. You can do that another time. Have fun, laugh, bond and connect with another. This is honestly the best gift you can give yourselves and your child with special needs.

 

Easter Seals on the State of the Union Address

“Real opportunity requires every American to get the education and training they need to land a good-paying job.” —President Obama

POTUS seal with eagleEaster Seals couldn’t agree more with this statement by President Obama in last night’s State of the Union Address.

One essential element in real opportunity is high-quality early education. Easter Seals, the nation’s leading provider of inclusive early education, where children with and without disabilities learn and grow together, is a proud partner for millions of families of young children. We know all young children have great potential, and with the rights supports as early in life as possible, they will lead meaningful and productive lives of their choosing, contributing to their communities.

We hope all policy makers will embrace early education as a priority. Parents need information about the progress their child is making in all areas of development – whether language, physical or social-emotional development. Early identification of developmental delays or disabilities can make the difference between a life of independence and a life of dependence. That’s why we offer a free online screening tool to help guide parents through life’s earliest milestones.

Easter Seals thanks President Obama for his continued advocacy on behalf of our nation’s youngest children. We will continue to work with policy makers from all political parties at all levels of government to ensure all children get a great start in life.

 

 

Review of Autism in Love documentary, and how to watch it now

autism-in-love-show-poster-2016Last night’s airing of Autism in Love on PBS comes at a time when reality-based documentaries about people with disabilities are hot. Like Born This Way, The Undateables, and Little Couple, this show aimed to portray the joys, struggles, and commonalities people with disabilities encounter throughout their lives. Autism in Love, more specifically, was about the lives of four adults with autism and their quests toward romantic love and acceptance.

The program follows three stories: Lenny, a single guy from Los Angeles; Lindsey and Dave, a couple from Washington, DC; and Stephen, a recent widow from Saint Paul, Minnesota. What struck me, initially, was the simple nature of the documentary. There is light music played throughout, but the focus is really the words and body language of the cast, with occasional contributions from their parents. The camera and audio linger long after they answer questions posed to them off camera. This allows the viewer a chance to see how these individuals process and respond to conversation. At times, more is said when silence fills the screen, and I found that very powerful – it allows the viewer to connect to the person, to see how they communicate through expression rather than words. A strong theme in Autism in Love is the different ways we connect to each other, and how those ways are equally important in forming relationships.

Parts of this show are difficult to watch – namely Lenny’s story. He struggles to find acceptance of himself, and wants to be with a woman who is not independent; he feels they are “above” him. You can see he is angry both with his situation (single, living at home) and his diagnosis. Lenny wants to be a “normal, regular person,” and feels alone and trapped in his life. This part was the most raw, and shows exactly why acceptance and breaking down stigmatization of autism is so important. We also had Stephen’s heartbreaking story, being married 17 years and his wife dying from ovarian cancer.

Lindsey and Dave both have autism, and have been dating for eight years. They fall on different areas on the spectrum, and their relationship is built on that mutual understanding of each other’s autism and routines. While Lindsey often finds it hard to communicate with Dave, they have their own ways of making it work. I admittedly shed a tear at the end, but I won’t say why!

The only problems I had with the program were its lack of diversity and the inclusion of the parents’ voices. I wish we could have heard from couples from different cultural backgrounds. And while I think it is important to include parents in the conversation on disability (or here, autism), their interviews in Autism in Love felt unnecessary. By including them in this documentary, it momentarily shifted the focus away from what I wanted to hear – the stories of these engaging individuals told in their own voices and mannerisms.

Autism in Love is a wonderful documentary that looks at the different ways individuals with autism build relationships. It was truthful, and didn’t sugar-coat anything; there was no unnecessary use of the word “inspirational” here, and I think that was intentional. Heartbreak and happiness are universal emotions when it comes to love; but for many individuals with disabilities, that road is bumpy, filled with potholes imposed by a society that continually shuns difference. We face challenges within ourselves as well, and self-acceptance is one of those hurdles. Autism in Love allows its viewers to see the real lives of adults living with autism, centering their voices and shattering stereotypes. I highly recommend watching it!

You can find it on iTunes, Amazon, VUDU, and the PBS website. Please let us know what you thought in the comments below!

Related Content:

Also check our Easter Seals love and relationships (with disbaility in the mix) collection at easterseals.com/love.

See the latest autism statistics by state.

Find Easter Seals resources for living with autism at all stages of life and learn what is autism.