Drum roll! Our 10 favorite blog posts of 2014

by Beth Finke

It’s been another great year here at the Easter Seals blog, and to celebrate, the Easter Seals blog team and I are sharing links to our ten favorite posts from 2014. Those of you who missed them the first time around can read them now, and those of you who liked them when they were originally published can link to them again. Cheers!

1. Our social media intern MacKenzie Olsberg taught video game newbies like me what it means to be a “non-playable character” (NPC) in her post about Taimi, a character in Guild Wars 2 who has a noncurable degenerative disease. To Mackenzie and many others, she was a groundbreaking character, especially since people with disabilities are not often seen in video games. This was easily the most viewed Easter Seals blog post of the year.
2. Easter Seals President and CEO Jim Williams wrote a post applauding our partner CVS Caremark for making the bold move to stop selling tobacco products. And our readers applauded right along with us.
3. After Easter Seals took the Massachusetts Thrive mentorship program online, we posted a letter that Thrive’s program coordinator Sandy Ho wrote to her younger self. This mentorship program and its support resources for young women with disabilities are now available nationally – visit easterseals.com/thrive.
4. In November, we asked some of our staffers at Easter Seals Dixon Center, the military and veterans’ arm of Easter Seals, what Veterans Day means to them. Their answers made us proud, and we published them in a Veteran’s Day post.
5. We also introduced a new blogger, our resident autism guru, Cathy Pratt, PhD. Her initial posts have been a hit and we’re excited to post more from her in 2015. Her latest post shares 16 ways to prepare your child with sensory issues for the holidays.
6. Eileen Dombrowski’s post on Halloween costumes for kids with disabilities was a huge hit, as were the adorable pictures!
7. Sara Heidenheimer, one of the veteran’s featured in our Veteran’s Day post, also wrote a Fourth of July guest post sharing her Fourth of July playlist – what fun!
8. One of the many posts we published about intimacy during Valentine’s Day week was written by Katie Banister, a woman who lost feeling from her shoulders down as the result of an auto accident. The post was titled “But how?” and broke new ground for Easter Seals.
9. In June 2014, Easter Seals headed to Capitol Hill to advocate for the Workforce Innovation and Opportunity Act, and Easter Seals’ Sara Croft wrote a great recap of our Washington, D.C., visit, which included meeting with Senator Tom Harkin.
10. Our frequent blogger and public relations manager, Rachel Talen, left Easter Seals to become a teacher. Her post that explains why she chose this new path is touching and inspiring. (We miss you, Rachel!)

What’s in store for 2015? Sign up to follow the Easter Seals blog and find out. Happy new year!

What?! Ridesharing services don’t have to adhere to ADA?

by Beth Finke

A few weeks ago my Seeing Eye dog and I took an Uber ride to a special “accessible” performance of the play Great Expectations. (Uber is an app for ordering a taxi or other car service.) From the Victory Gardens Theater website:

Wednesday, December 10 at 8:00 PM
Access Services include: Audio Description, Closed Captioning, Wheelchair accessibility, free UBER Transportation

All things being equal, I’d rather just walk.

I’ve written here before about my concerns regarding ridesharing services when it comes to picking up people with disabilities. I’ve used ridesharing services with non-disabled friends before, but I’d never tried using the service on my own. I’ve been curious to see how a Uber driver would react to a rider with a service dog, so, gee, if the ride to the theater would be free, that night seemed like the perfect time to try it.

Regular cab drivers are required by law to pick up people with disabilities who travel with service dogs, but since ridesharing drivers are independent contractors driving private vehicles, they don’t have to adhere to the Americans with Disabilities Act. The Uber website says it like this:

We leave the decision whether or not to transport pets at the discretion of your driver. When traveling with a pet, we recommend calling your driver as soon as you’ve placed your request (tap the arrow next to your driver’s information, then “CONTACT DRIVER”) to make sure they don’t mind taking your pet.

A number of legal complaints have been filed alleging Uber discriminates against people who are blind and people who are visually impaired people who use guide dogs. The cases are still pending, but in the meantime Uber announced that they’ve launched a new platform to “train uberX partners on the necessary knowledge and safety requirements for those with accessibility needs.” People like me who might need special assistance were instructed to link to UberASSIST on the Uber app so a driver who’d been through the special training would come pick us up.

My husband Mike can see, so he took a photo of Whitney in her Seeing Eye harness standing next to me to use on my Uber account. He helped me plug in the special promo code and find the Uber ASSIST link on my talking iPhone, but I was so intent on simulating what the experience would be like on my own that I wouldn’t let him come out on the sidewalk and wait for the driver with me. “You can watch from inside the door there to make sure I get a ride, but you have to hide,” I told him.

When I heard my talking iPhone call out “Uber driver arriving in three minutes” I headed outside with Whitney and waited. And waited. And waited. Finally I heard the door to our building squeak open behind me. “He’s right there,” Mike whispered.

“But I’m blind!” I scolded back. “I want him to have to figure out how to let me know he’s here!” Just then my phone started ringing.

• Uber Driver: Beth! It’s your Uber driver. I’m here.
• Me: Yeah, so am I.
• Uber Driver: Where?

I’d been standing as tall as I possibly could, with Seeing Eye dog Whitney right at my side. Didn’t he see our photo on his app? Wasn’t it obvious I can’t see? I gave our address, the one the magic app is supposed to give to the driver, and explained that I’m blind, and I can’t see him.

• Uber Driver (sounding confused): Oh. Well, I’m right here in front of your building.
• Me: But remember? I’m blind. I can’t see you.
• Uber Driver (still sounding confused): Oh.
• Me: Can you open the door and call out or something?
• Uber Driver: Oh! Sorry. Yeah. Okay.

My driver got out, called my name, Whitney led me to the car, our driver opened the back door, I got in, buckled my seatbelt, called Whitney to come in to sit on the floor at my feet, and we were off. On our ride I complimented my driver’s big car, told him Whitney appreciated all the room she had on the floor, and asked him if he’d received special notice that we’d asked for an Uber ASSIST vehicle. He had no idea what I was talking about.

I spent most of the rest of the ride explaining what Uber ASSIST is, how it’s supposed to train interested drivers on the best ways to assist people with disabilities or special needs. “I’ve never heard of that,” he said, adding that he thought the idea was “really interesting.”

Uber ASSIST has some work to do. We were late for the audio tour they’d planned before the play, but the condensed audio tour the show’s actors and actresses squeezed in for me was very helpful, and the performance was absolutely wonderful. Sighted friends who met me there said they’d drive Whitney and me home afterwards, and so I told myself, what the heck, Uber ASSIST wasn’t all it was cracked up to be, but at least the ride over was free. But then I got up the next morning and checked out my Uber ASSIST online receipt. I’d been charged for the ride.

Eyebrows up! A simple online complaint to Uber support clarified the error, my fare was adjusted to reflect the value of the promotion, and an updated receipt was sent to my email address so I could use my talking computer to check out the breakdown.

All’s well that ends well.

Book review: Marlene Brill’s “Speech and Language Challenges: The Ultimate Teen Guide”

by Beth Finke

I am pleased to introduce Speech-Language Pathologist Marsha Boyer as a guest blogger today. Marsha has 21 years experience working with children of all ages and is the founder and owner of Speech Connections, Inc. in Greenwood, Indiana.

Ambitious and impressive

by Marsha Boyer, M.A., CCC-SLP

People can have such a wide variety of communication difficulties — I had at least a dozen required text books to read and know while studying for a degree in Speech-Language Pathology, so I was curious about how Marlene Brill could possibly address the wide variety of communication difficulties a teen may have in a way that could keep a young adult interested.

She definitely hit the sweet spot with her young adult non-fiction book Speech and Language Challenges: The Ultimate Teen Guide. The book provides the academic definition of each area while keeping the topic concise enough to maintain the attention of a teen. Brill’s book also offers additional resources (support groups, other books and websites), that expand the topic or offer a place to go for help.

Personal accounts from teens assure the young readers they are not alone. Additionally, stories relating the personal struggles of well-known young adults encourage readers to continue to think positively while experiencing the same struggle.

The steady increase in the number of bilingual speakers in the schools makes the chapter that talks about bilingual speakers especially important. Ms. Brill not only explains the difficulties that bilingual speakers experience, but, more importantly, she provides suggestions to help teens better connect with their bilingual peers.

It’s pretty ambitious for an author to try to tackle all of this in one book, and Marlene Brill did an impressive job.

Visiting aging relatives? 3 things you should look for

by Beth Finke

Holiday visits with aging parents or grandparents may offer the first opportunity in several months to evaluate changes in older family members’ lives and notice signs that could indicate a need for increased support. When home for the holidays, it is important to assess the needs of your aging loved ones so you can ensure their safety and security at home.

1. Make sure your loved one is eating regularly and maintaining a clean household. Ensure all food is fresh and edible and that the pantry is fully stocked. Also, check that the house is tidy, in good shape and not a safety hazard to your relative.

2. Be aware of any changes in your loved one’s personal hygiene and medication schedule. Watch for changes in personal habits such as infrequent bathing, not shaving or dressing inappropriately for the weather. Also, familiarize yourself with any medications your loved one might be taking on a regular basis and make sure they’re taking them on schedule.

3. Check to see that your loved one is maintaining their typical routines and activities with ease. Does your loved one still attend their weekly bingo game, visit with friends and run necessary errands? Check with neighbors and friends to see if they’ve noticed any differences in behavior. Also, if your loved one still drives, take a drive with them and make sure they are able to drive safely and comfortably in the local area.

If you can’t make it home this holiday season, here are a few ways to care for your aging loved ones while far away:

1. Create a support network within the community to help you care for your loved one. Work with neighbors, friends and medical providers to set up a schedule where someone can check on your loved one consistently and provide them with anything they might need and are unable to get themselves.

2. Consider working with a geriatric care manager. Many long-distance caregivers find it helpful to work with geriatric care managers to arrange caregiving services. These eldercare professionals can help assess needs and coordinate services in your loved one’s area, whether it be arranging a one-time move or a long-term care relationship.

3. Create a caregiving plan and involve your loved one as much as possible. Include other family members, friends and care managers while creating a plan for your loved one. Establishing a firm schedule will help your loved one adjust and will spread responsibility between all parties involved.

Learn more about caring for your aging relatives by downloading Easter Seals’ Loving Conversations, an online guide full of resources for adult day services and solutions for common transportation challenges.

10 ways to make holidays easier for children with developmental disabilities

by Beth Finke

The holidays can be an especially difficult time for people with developmental disabilities. And who can blame them? Changes in routine, different demands, new foods, sounds, textures — what a challenge!

A post I read years ago on the ABA4Autism or other Neuropsychological Disorders blog serves as a good reminder when holiday time comes for our grown son Gus, who has severe and profound disabilities. The post offers tips to make the winter holidays better:

1. Try to keep your child in his or her usual routine as much as possible.

2. Sensory over stimulation — the lights, sounds, smells, and even the relatives who want to hug your child — are the main culprits during the holidays. Eliminating or minimizing these culprits are your best bet. Plus, you may want to talk to your family about how to greet your child when they arrive, too.

3. Instead of limiting the holiday decorations, some families who have children with autism or other neuropsychological disorders wait until Christmas Eve to put up their tree and decorate.

4. Some families let their children with autism or other neuropsychological disorders do all of the decorating. Children with autism or other neuropsychological disorders may line up or stack decorations rather than decorate in the traditional way, but so what. Let them enjoy the activity in their own way.

5. Rather than try to do the Christmas shopping with children with autism or other neuropsychological disorders in a crowded, noisy mall, many families shop by catalogue or online and let the child point to or circle the toys he/she wants. Websites, such as www.stars4kidz.com, offer a variety of toys for children with autism or other neuropsychological disorders. Just type “autism toys” in your search engine.

6. Tactile toys are often a better choice for children with autism or other neuropsychological disorders. Toys that make sounds or involve too much stimulation or are too complex may not cause an aversive reaction in the child. As I mentioned above, there are websites that sell toys designed for children with autism or other neuropsychological disorders. Try ordering some of these toys and then let your child select the ones to play with as they are unwrapped.

7. Talk to relatives before they come over about the best way to behave with children with autism or other neuropsychological disorders. Have them read my article, “What Horses Tell Us About Autism,” which is available for free on this website.

8. Generally, kids with autism or other neuropsychological disorders do better in the morning than in the late afternoon or evening when they are tired. It may be better to schedule Christmas events at these times.

9. The parents of children with autism or other neuropsychological disorders need to relax themselves. Often the child with autism picks up on the parents’ stress and that is enough to ruin Christmas.

10. And last but not least, realize that you are probably not going to have perfect food, perfect decorations and perfect gifts. Christmas with children with autism or other neuropsychological disorders may not be traditional, but it can still have real meaning. (Sometimes I wonder if children with autism or other neuropsychological disorders know that Christmas has become too commercial.)

We’re off to Wisconsin soon to celebrate an early Christmas with our grown son Gus in his group home. I’ll keep some of these tips (especially the one reminding parents to relax!) in mind.

Related Resources from Easter Seals:

Get unique gift ideas for caregivers, which includes parents of children with and without disabilities.

8 ways to prevent toy obsession by children with autism

by Cathy Pratt

As promised in a previous post, here are some suggestions about gift lists and what to do if your child begins to obsess about a particular gift or toy they want.

• Make a list with your child of what he or she wants for the holiday.
• Include the store or website where the gift can be purchased
• Don’t forget to add the price and other critical information about the gift.
• Organize the list with a small box at the end or beginning of each item.
• Share the list with family members or friends who want to “register” to purchase gifts by putting their initials in the box.
• While you wait for the holidays to arrive, be specific and direct about the number of times each day a child can mention a toy or gift they are obsessing on.
• Try giving your child 5 poker chips and allow them to exchange one poker chip for 5 minutes of talking about the desired gift.
• Above all, be clear about your intentions. If you have no intention of purchasing a specific toy, do not tell the child that they might get that gift — it will only lead to problems in the future.

Most important, remember to relax and not get unduly stressed. Your son/daughter may in all likelihood react to that stress. And most of all, have a wonderful holiday season!

Airport travel resources for people with disabilities

by Beth Finke

Here’s a quick reminder that if you’re flying this Christmas, the Transportation Security Administration (TSA) has ways you can get help navigating airport checkpoints. The TSA’s Passenger Support Specialists Program trains select Transportation Security Officers, Lead TSOs and Supervisors to take on the extra responsibility of helping passengers who may be in need of extra help at security checkpoints. From the Transportation Security Administration website:

More than 2,600 Passenger Support Specialists at airports across the country assist passengers who require additional assistance with security checkpoint screening.

Passenger Support Specialists receive specialized disability training provided by TSA’s Office of Civil Rights and Liberties, Ombudsman and Traveler Engagement. Training for Passenger Support Specialists include how to assist with individuals with special needs, how to communicate with passengers by listening and explaining, and disability etiquette and disability civil rights.

The site encourages travelers who need special accommodations or are concerned about checkpoint screening to ask a checkpoint officer or supervisor for a Passenger Support Specialist to provide on-the-spot assistance.

Travelers can request a Passenger Support specialist ahead of time, too, by calling the TSA Cares hotline at 855.787.2227. Many of you won’t be traveling until next week or so, but since TSA recommends you call approximately 72 hours ahead of travel to give them a chance to coordinate checkpoint support with a TSA Customer Service Manager at the airport, I thought it best to publish this now…happy trails!

11 ways to help your child at holiday gatherings

by Cathy Pratt

Holiday family gatherings are right around the corner. Here are some tips to help make them more pleasant:

• Prepare a photo album in advance of seeing the relatives and other guests.
• Go through the photo album with your child while talking briefly about each family member.
• Allow the child access to these photos at all times.
• Know your child and how much noise and activity they can tolerate. If you detect that a situation may be becoming overwhelming, help your child find a quiet area in which to regroup.
• Prepare family members for strategies to use to minimize anxiety or behavioral incidents and suggest ways to enhance your child’s participation in the day’s activities.
• Help family and friends understand your son or daughter’s preferences, whether they prefer to be hugged or not, need calm discussions and so on.
• To minimize behavioral outbursts, coach others to remain calm and neutral if your child becomes upset.
• Avoid introducing your child to any new demands these next couple weeks — holidays already place extra stress on children.
• Try to maintain a sleep routine, meal routine, and other important routines.
• Practice opening gifts ahead of time, taking turns and waiting for others.
• Role play scenarios with your child in preparation for them getting a gift they do not want.

As for those last tips about opening gifts, I highly recommend using a visual turn taking card to help with that process. the New Social Story Book by Carol Gray (2010) contains a number of social stories on gifts.

Above all, know your child. Know how much noise and other sensory input they can take. Know their level of anxiety and the amount of preparation it may take. Know their fears, and know those things that will make the season more enjoyable for them – and for you. Happy holidays!

Looking for special toys for special kids

by Beth Finke

It’s just the first week of December, and the holiday commercials are already in full force. I remember watching all those ads while my son Gus was growing up, wondering if any of the toys advertised on TV would appeal to him. My husband Mike and I spent hours and hours searching catalogs, visiting toy stores, playing at music shops, filing through hardware stores, perusing gift shops, looking anywhere and everywhere to find a toy Gus might like, something he might want to explore.

Therapists told us it was good for Gus to be stimulated by different things. We gave him mobiles, wind chimes, tambourines — anything we could find that was colorful and made noise. By the time he turned 9 or 10, though, we just plain ran out of ideas. And as Gus grew, it was more difficult to muscle him in and out of stores on holiday shopping sprees. I still remember wishing for one place I could go for a list of toys especially good for kids with special needs. With a list like that, who knew? Maybe Mike and I might find something out of the ordinary for Gus, something we would have never thought of on our own.

Toys “R” Us to the rescue! The Toy Guide for Differently-Abled Kids is a free toy-selection guide for parents and friends of children with disabilities. Items featured in the Guide promote the development of specific skills, such as auditory, language, visual, fine motor, thinking and social skills.

Our son Gus is 28 years old now, living happily with three other guys in a group home in Wisconsin. I’m kind of out of the toy-buying loop now, so if any of you readers have other go-to places to find special toys for special kids, please leave a comment. I’m all ears.

16 ways to make holidays easier for a child with autism

by Beth Finke

I am pleased to introduce our new blogger Cathy Pratt. Dr. Pratt is the Director of the Indiana Resource Center for Autism, and today’s post is the first of three we’ll be publishing by her about holiday tips

Social stories and visual supports for the holidays

by Cathy Pratt, Ph.D., BCBA-D

While many happily anticipate the coming holiday season, families with sons/daughters on the autism spectrum also understand the special challenges that may occur when schedules are disrupted and routines broken.

The following tips were developed with input from the Autism Society of America, the Indiana Resource Center for Autism, Easter Seals Crossroads, Sonya Ansari Center for Autism at Logan, and the Indiana Autism Leadership Network. We update our list of suggestions annually, and our hope is that by following these few helpful tips as the holiday approaches, families may lessen the stress and anxiety created by the holiday season and make it a more enjoyable experience for everyone.

• Preparation is crucial for most individuals. At the same time, it is important to determine how much preparation a specific person may need. For example, if your son or daughter has a tendency to become anxious when anticipating an event that is to occur in the future, you may want to adjust how many days in advance you prepare him or her.
• Preparation can occur in various ways by using a calendar and marking the date of holiday events, or by creating a Social Story that highlights what will happen at a given event.
• Prepare a photo album in advance of the relatives and other guests who will be visiting during the holidays. Allow the child access to these photos at all times and also go through the photo album with your child while talking briefly about each family member.
• If your child has difficulty with change, you may want to gradually decorate the house. For example, on the first day put up the Christmas tree, then on the next day decorate the tree and so on.
• Engage them as much as possible in the decorating process. For some it may also be helpful to take them shopping with you for holiday decorations so that they are part of the process.
• It may be helpful to develop a visual schedule or calendar that shows what will be done on each day.
• It may also be helpful to inform them of the process for removing decorations, since this process may be disruptive for some individuals as well.
• If having decorations around the house does become disruptive for some, it may be helpful to revisit pictures from previous holidays that show decorations in the house.
• If such a book does not exist, use this holiday season to create a picture book
• Consider involving your son or daughter in the process of decorating the house.
• Once holiday decorations have been put up, you may need to create rules about those that can be touched and those that cannot be touched. Be direct, specific and consistent.
• Understand that with some individuals, decorations may not be feasible.
• If you are traveling for the holidays, arrange to have the child’s favorite foods, books or toys available. Having familiar items readily available can help to calm stressful situations.
• Use social stories or other communication systems to prepare them for any unexpected delays in travel.
• If your son/daughter is flying for the first time, it may be helpful to bring your child to the airport in advance to help them become accustomed to airports and planes
• Use social stories and pictures to rehearse what will happen when boarding and flying.

You can see examples of numerous visual supports on our website, and stay tuned for my next holiday post about ways to respond to a child with autism who begins obsessing about a particular gift or toy they want.

On a related note, Easter Seals also offers unique gift ideas for caregivers, including parents who care for children with and without disabilities. Many of the ideas are free and all are from the heart.