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

by Beth Finke

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.

This “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

by Randall Rutta, President and CEO

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

Easter 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

by Erin Hawley

Last 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.

I hope my dictation device doesn’t get me fired!

by Beth Finke

There’s ice on the sidewalks here in Chicago. I fell. Broke bones in my left hand. Ouch!

Not easy typing or editing blog posts with one hand in a cast, but my colleagues — along with my manager Jackie — have stepped in and really helped out. Thank you all.

I’ve already written a post here about how people who have visual impairments can use Siri to send text messages and make calls on iPhones. Now, while those fingers in my left hand recover, I’ve started toying around with another dictation feature on my iPhone: the microphone on the keyboard.

Sorry, Itzhak, no offense intended.

So far, for me, dictating long emails and text messages using the microphone has been more accurate than using Siri. Don’t get me wrong, though. The microphone still comes up with some mischievous typos.

Or would those be “talkos?”

By far the most embarrassing dictation mistake came when I wrote Jackie, my boss here at Easter Seals, to tell her I was going to hear Itzhak Perlman give a presentation about disability and the arts in downtown Chicago on Wednesday. I suggested I might write a post about that event for the Easter Seals blog. The message she received? It identified the renowned violinist and conductor as “It sucked.”

Jackie has a good sense of humor, but odds are that she will not welcome me dictating posts to the Easter Seals blog any time soon!

And odds are you blog readers will not welcome a blog post where I just talk on and on and on, either, but if, after reading all this, you are still interested in giving dictation a try, here’s how :

1. Go to Settings.
2. Swipe until you get to “General.”
3. Swipe to Siri, and then turn Siri on. (Even if you don’t want to use Siri at all, you need to turn it on for any speech recognition to work.)

From now on, any time you see the small microphone icon next to the spacebar on the iOS keyboard, dictation is available. . . Tap anyplace you can type text, and then tap the microphone icon to start dictating. When you’re finished, tap “Done,” and…viola!

Oops. I meant, “voila!”

Sigh.

If you are blind and use the speech synthesizer VoiceOver (like I do), listen for the space bar on any keyboard that appears, and swipe left once. You’ll hear the word “dictate.” That’s where the microphone is. Double tap there to start dictation, and then two-finger double-tap to finish.

For everyone, sighted or not, if you want to include punctuation in your dictation, all you need to do is say “exclamation mark” or “period” or “comma” and so on. You can say “new line” to dictate a return character, and “new paragraph” to add two returns. Best of all: if you are using the microphone rather than Siri, you can always go back to the QWERTY keyboard to fix typos or add a word or line the old-fashioned way.

Now only if I’d taken the time to do that when I wrote to Jackie and told her the violinist sucked…!

Your resolution is to eat more ice cream for a good cause

by Beth Finke

We’re six days into the new year — time to throw those resolutions out the window! You can enjoy some ice cream without feeling guilty by supporting Easter Seals at your local Friendly’s restaurant. This year’s campaign runs January 11 through February 13 featuring your favorite Valentine’s Day Cards good for five free Kids Cones or a coupon book with a $1 donation to Easter Seals.

All the way up to Valentine’s Day, you can support Easter Seals programs for kids every time you visit a Friendly’s restaurant and donate $1 to Easter Seals. You’ll be rewarded with a sheet of Valentine Cards that can be redeemed at Friendly’s for 5 free Kids Cones or a coupon book.

Funds raised in Friendly’s Cones for Kids program support Easter Seals Children’s Programs in all Friendly’s markets. Friendly’s successful campaign for Easter Seals is an annual tradition where guests and employees across the restaurant chain help change the lives of thousands of children of all abilities through their efforts. The campaign has raised nearly $29 million to date — more than $300,000 in 2015 alone — to benefit Easter Seals programs across the region.

So go ahead and enjoy some ice cream at a Friendly’s restaurant near you. Every time you and your family visit Friendly’s between January 11 and Valentine’s Day, you can help support essential Easter Seals programs in your community. Schedule your ice cream out now!

Learn more about Easter Seals partnership with Friendly’s.

Find other ways you can support Easter Seals in 2016 right here.

Bringing people with autism into the election dialogue

by Katy Beh Neas

This election year, Americans have the unique opportunity to influence the future of our great country as citizens go to the polls to elect the next President of the United States. With primary season just weeks away, our potential future leaders are now sharing their roadmaps for the next four years—shaping the policies and causes they believe to be most valuable to our country’s future success.

Today, one candidate proposed an initiative that brings the issues and concerns of individuals with autism into the election dialogue. We are very pleased to see the needs of children and adults with autism emerge as a presidential campaign issue in 2016, and hope candidates of both parties will make the needs of all people with disabilities, including those with autism, a national priority.

Easterseals, the nation’s leading provider of autism services, is a proud partner for millions of families living with autism. We know individuals with autism can and do lead meaningful lives—our clients are proof of just that.

We’re especially proud to see policy leaders concur with our priority on early intervention. Through the advocacy of public leaders like our 2016 candidates, we can change the national conversation on early childhood development. Early identification of autism and other developmental 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.

From a local perspective, you can learn about support available to people with autism in your community by checking out our updated autism state profiles. We publish these reports each year to give policy leaders, organizations, clients and supporters an idea of the services, resources and laws that affect people with autism in every state.

Stay tuned for more information and coverage of the presidential election from Easterseals this year.

Book review of A Snicker in Magic

by Elsa Remak

Here’s another book review by our public relations and social media intern Allison Mulder with her look at how authors approach disability in their stories.

by Allison Mulder

Until I started reading A Snicker of Magic, I had no idea it featured a character with a disability.

Possibly because author Natalie Lloyd doesn’t depict the disability as a huge, interruptive, “inspiring” moral lesson for the main character. Instead, she presents the disability as totally normal.

In A Snicker of Magic, Felicity Juniper Pickle’s mother moves their family back to her old hometown, Midnight Gulch, TN, a town with only faint traces left of the wonders that used to thrive there — “snickers” of leftover magic. One of these traces is Felicity’s ability to see words hovering around her, given off by people and places — “words people are thinking about, or words they want. Some words glow, and some dance. Some have wings, and some have zebra stripes.”

In another case, Felicity’s friend Jonah Pickett hints at having a certain “know-how” for what people will need — though it’s not clear whether this is true magic or just his innate thoughtfulness. Jonah also uses a wheelchair. Why? We’re never told.

Jonah’s disability is depicted with a light touch — sometimes so light that it almost risks the reader forgetting about it. But subtle lines bring us back — a line about getting on and off the bus, for instance — just long enough to remind us before moving on with the story.

I like the way A Snicker of Magic aspires to help normalize his disability. Felicity is never terribly taken aback by the wheelchair. It never turns into some heavy-handed after-school special. There’s even a line where she asks Jonah, “How do you play hockey?”

Jonah starts to answer, “I play my own way…I can’t stand up to hit the puck, obviously, but I can—”

“I didn’t mean that,” she says. “I mean that it’s too hot here. There’s no lake frozen enough to skate on.”

I feel like this tiny exchange says a lot about what Jonah is used to people asking. It hints that his disability is something that affects him every day, to the point that he expects questions to center on his disability, not his feelings. Through Natalie Lloyd’s adept writing, readers learn that Jonah’s disability is not the only thing about his character that’s important. Jonah has a wheelchair. But he also has a father away in the military. He has secret responsibilities helping people in town as an anonymous do-gooder, the Beedle. He has a know-how. He’s a fully fleshed-out character, and I think this would be a great read for someone who wants to see disabilities portrayed without that being the sole focus. Present, though perhaps not explored in great detail.

It’s also a ridiculously cute book, which I enjoyed a lot.
For a taste — or maybe a “snicker” — of the novel, Natalie Lloyd recently wrote a Thanksgiving short story about Jonah that you can read for free. Enjoy!

And if you have any thoughts about how to strike the balance between normalized portrayals of disability or more detailed descriptions of the experience, please share in the comments!

Just say hi

by Beth Finke

I always end the presentations I give to civic groups and college kids with a Q&A session. “Here’s your chance,” I tell them. “Ask me anything about what it’s like being blind.” In addition to the questions I get about whether my other senses improved after I lost my sight, how I know what colors I’m wearing, stuff like that, I’m always asked what to say to a blind person waiting to cross the street. “Should I say anything?” they’ll ask. “Is it rude to see if they need help?”

My answer? I like it if you say hello. “If we’re out there getting around on our own with a white cane or a guide dog, you know we’ve got chutzpa; we’re not shy.” I tell them that if they say hello, I know there’s someone there to ask for help if I need it. “Otherwise I can just say hello right back and carry on.”

People with disabilities are in the minority. It’s understandable that you might be unsure how to start a conversation with one of us, so I was pleased to hear recently that a new campaign to help people lose their fear of interacting with people who have disabilities has released a series of short videos encouraging people to “Just Say Hi.” Spots feature television hosts Gayle King and John Oliver and actors William H. Macy and Michael J. Fox. The videos are appearing on CBS stations nationwide and in some New York City taxis and train stations. You can look and listen to the videos online, too. And if you ever want to start a conversation, these videos make it simple: just say hi.

How our child with disabilities takes us where we never dreamed

by Bernhard Walke

My wife Rosa and I have worked in education ever since we graduated from college, which gave us summers free to travel extensively — as single people, and then together as a married couple. Rosa and I both subscribe to the philosophy that “you never take a trip, the trip takes you.” This approach led us to fresh anchovies and wine straight out of the bottle in the Cinque Terre, fresh carnitas and tortillas in the markets of Mexico City, and an after hours private tour of the Sistine Chapel in Rome. We’ve been very fortunate.

Now we try to use this same approach with parenting. We don’t take Elena places, but rather she takes us. Maybe this is the case with parents of children who don’t have disabilities as well? We simply just don’t know.

Elena and Rosa at the Art Institute of Chicago

When Elena is home during breaks from school, it is not possible to tell her to go off and play by her self. She simply can’t. And truth is, we’re not as entertaining as her school friends are. If Elena is left in her chair, stander, or walker without someone to play with, she gets bored. And frustrated.

So Rosa and I are charged with providing productive and stimulating activities in which our daughter can fully participate. During winter, spring, and summer breaks from school, Elena takes us to — and sometimes restricts us from — places we never expected.

Some of the greatest gifts we’ve received for Elena have been memberships to the Brookfield Zoo, the Field Museum, the Morton Arboretum, and the Art Institute of Chicago. These memberships provide Elena with close encounters with majestic giraffes, journeys through Pre-Columbian South America, dog-sled demonstrations, and some of the best visual art in the world. Again, we are very fortunate.

Rosa and I agree that we visit and discover more things than we thought we would because of the things Elena “can’t” do. Without Elena, I am quite sure we would never have spent so much time watching a peaceful lion slumber in the middle of the winter at the zoo, nor would we have rediscovered our love for early 20th century Expressionist art. I know that. Nonetheless, I was overcome with a sense of melancholy over Thanksgiving break when we were rushing to the Art Institute on a dreary and rainy Saturday morning.

On trips like these we have to worry about how Elena will eat in her wheelchair. Will they have food that she can eat? Will there be enough room in a downtown restaurant to accommodate her chair? Will they mind us sitting for 90 minutes because often that’s how long it takes her to eat? I am aware that taking any 5-year-old out to lunch can be a difficult task, but outings like that are hardly ever, ever in the cards for us. Wouldn’t it be so much easier if we could just go out to lunch with our 5-year-old rather than rush home to feed her?

My melancholy was broken by my wife’s guffawing over a particularly funny remark on NPR’s Wait, Wait, Don’t Tell Me on the car radio. I shifted into first gear. We continued on our journey to the Art Institute.

It wasn’t until we parked that we realized we’d arrived at the museum just as it was opening. Hardly anyone was there. Most were still shopping in the post black Friday chaos.

We rolled through some of our familiar exhibits: early colonial Latin American Art, Contemporary American, and then found ourselves once again in French Impressionism. Sure, we’d seen Monet’s “Haystacks” a hundred times, but when I looked over at Rosa she beamed and whispered, “Look, we’re alone in a room of Monet’s! How cool is this?” I almost burst into tears.

My melancholy had left me thinking I existed in a binary world of cans and can’ts, yeses and nos. As I looked around me at six of the 25 “Haystacks” that exist in the world, I didn’t see that binary world anymore. I saw magenta, violet, lilac, grey, orange, emerald and all shades of these colors of life that I’d never experienced before.

I was all alone in a room with my daughter, wife, and Monet. Elena brought us there because of all the things she struggles with. Inasmuch as I often think about what we have lost, Elena has taken us to places we would never have been and introduced us to the most compassionate and loving people. Thanks to Elena, we’ve experienced events beyond our imagination. So yes, breaks from school can be exhausting, but I’m thankful for the time. We are indeed very fortunate.

Read Bernhard’s previous blog post about a device that helps Elena speak with her eyes.

12 holiday travel tips for families with special needs

by Sara Croft

End-of-year holidays often require traveling to visit friends and family who live far away. Spending many hours in the car or getting on an airplane can be challenging for families with special needs. Easter Seals Crossroads in Indianapolis has compiled tips from their behavior analysts, therapists and respite providers that can help make holiday traveling a more enjoyable experience for everyone involved.

Before the airport:

1. Make sure you pack everything your child might want/need in a carry-on bag, including a change of clothes. Create a sensory pack with their favorite calming toy, stuffed animal, object or blanket. Sensory items are a great relief for kids who may become anxious due to first time traveling and fear of the unknown.
2. Discuss what the experience of the ticket counter and the security check might be like to the child before you arrive at the airport. You could simply talk to the child about it, discuss it with them, or use social stories to aid in the explanation.
3. Make sure you call TSA Cares at 1-855-787-2227 at least 72 hours before boarding the plane to ask any questions you may have. A TSA Passenger Support Specialist can be requested to provide on-the-spot assistance. The TSA has a helpline for individuals with special needs. (https://www.tsa.gov/travel/passenger-support)
4. Try to book flights when your child is generally the most able to handle a change in routine. For many children this may be in the morning when they are not tired and overwhelmed from a long day.
5. Ask your doctor for a letter describing your child’s condition especially if your child has an “invisible condition” such as autism. It might be helpful to show documentation of the disability to airport security or flight attendants. Visit the TSA’s website and print the disability notification card that you can present at the TSA screening. (https://www.tsa.gov/travel/special-procedures)

At the airport and on the plane:

6. To make your walk to the gate easier, approach the check-in or information desk to ask for a ride or shuttle to your terminal.
7. Inform TSA of your child’s disability and how they might react to security screening or waiting in long lines. Most airports have a family line or will allow the parent and child to be screened together.
8. It might be a good idea to bring noise cancelling headphones for the airport and the plane to help drown out some of the loud noise in the airport and the airplane. Sunglasses can block out the harsh bright light in airports and create a calmer environment.
9. Bring your child’s favorite music or no mess activity to keep them entertained on the plane. Colorful string beads, bags of beads, and items that light up are great additions for the traveling sensory pack.

On the road trip:

10. If your child escapes from their seat easily consider getting covers for the seat belt buckles and remember to check the child locks on the door.
11. Make sure your child is prepared for the road trip by creating a social story about the trip to read for them. This story may need to be read several times prior to the actual trip.
12. Have a visual aid to represent how many hours you have traveled and how many are left. A timer can help your child countdown the hours or minutes until the next stop or activity.

These tips can make holiday traveling easier for children, their parents, and other passengers. It is never too early to plan ahead, no matter how far your trip will take you.

For more information, visit the transportation section of Disability.gov to start planning your trip today.

This post originally appeared on Disability.Blog, the official blog of Disability.gov. Disability.blog features weekly posts from experts like our Easter Seals blogger Sara Croft, who address important topics for people with disabilities, their families and others.