Easter Seals means “aloha”

by Brandi Salas

I had the pleasure of participating in the Make the First Five Count Spokespersons Network and Affiliate Marketing Partners Meeting in Chicago a few weeks ago. Thirty-degree temperatures and freezing cold Chicago wind might have pushed the teeth-chattering and ear-numbing limits of this island girl, but the warmth of the personalities, and the very intelligent, altruistic people at Easter Seals and its affiliates got me through.

These individuals tirelessly dedicate themselves to the well being of children and adults with disabilities and special needs, and they’d fit in perfectly with my fellow residents of Hawaii. In Hawaii, we pride ourselves on living through “Aloha,” which means “hello,” “goodbye” and, most importantly, “love.”

Many think of Hawaii as a place of paradise, a never-ending tropical vacation. But the truth is my dear island Oahu is becoming over-populated with a growing crime rate and homelessness. The cost of living is rising and we often come across families that do not have the means to afford proper care for their loved ones.

So if the lives of island locals are not what others perceive them to be, where does the “Aloha” lie? The proof is in the way we interact with each other. Our passion and manner in which we come together to help a struggling member of our tight-knit community is “Aloha.” When I see our therapists, social workers, activity coordinators and caregivers interact with our participants here at Easter Seals Hawaii, I’m reminded that it is people like them that uphold and sustain our island values as well as the mission of Easter Seals.

During the meeting in Chicago, we discussed how many know the Easter Seals name but often forget or are unaware of what we do for others. I am confident in stating, “Easter Seals means Aloha.” The people I met at that Chicago meeting are proof that despite economic hardship and limited resources, “Aloha” will always prevail. We help and guide those with disabilities and special needs to reach their full potential. There is nothing more satisfying than being a stepping stone to make that happen.

And so, if you ever walk past Easter Seals Headquarters office in gusty Chicago, expect to be greeted with one of the most powerful quotes I’ve ever known, “Your life and mine shall be valued not by what we take … but by what we give.” That quote comes from Edgar Allen, the founder of Easter Seals. I’m a true believer.

Watch out, world — I’m feeling crafty again

by Rachel Talen

I can’t believe it’s already been a year since I wrote a post here confessing my obsession with crafting and how that obsession created a special place in my heart for Easter Seals’ partnership with A.C. Moore Arts & Crafts. Time sure flies! A.C. Moore’s Make and Take crafting event is back again, and I love the theme for this year: Crafting a Better World for ALL Kids.

From now until April 27, you can support Make the First Five Count and Act for Autism, too, by donating $1 at checkout (don’t forget to thank your cashier for helping Make the First Five Count) While you’re at it, why not bring the kids to your local A.C. Moore store on April 20 from 1:00 to 3:00 p.m. That’s the day of their free “Make and Take” craft event, and the kids can make a Creative Hands® foam name sign to take home.

Since launching the campaign as part of its Crafting a Better World program in 2010, A.C. Moore customers and store team members have raised almost $500,000 for Easter Seals. Today, one in 88 children are diagnosed with autism, and there’s an increasing need for funding, services and support. I encourage everyone, the crafty and non-crafty, to show your support by pinning the image pictured here. You can visit Easter Seals’ Pinterest page to see more, too!

At Easter Seals, every day is World Autism Day!

by Patricia Wright

The United Nations declared April 2nd World Autism Awareness Day back in 2007, and now, six years later, Easter Seals is embracing UN Secretary-General Ban Ki-moon’s message for World Autism Awareness Day 2013:

World Autism Awareness Day has succeeded in calling greater international attention to autism and other developmental disorders that affect millions of people worldwide. The current session of the United Nations General Assembly has adopted a new resolution on this issue, demonstrating a commitment to help affected individuals and families. The resolution encourages Member States and others to strengthen research and expand their delivery of health, education, employment and other essential services.

There continues to be a growing demand for services and supports to ensure individuals with autism experience a high quality life. Having high profile organizations such as the United Nations taking an interest in autism increases visibility to the needs of those living with autism.

April 2nd is an important day for autism, and Easter Seals will continue to send the message every day that individuals with autism deserve to experience life to the fullest.

From “non-verbal” to “social butterfly”

by Beth Finke

The story below was featured in our April eNewsletter. We love sharing Easter Seals stories like this, so if you’d like to receive our eNews every month, sign up here.

At 28 months, Kai couldn’t walk, speak, or make contact with others. His parents were told he would be non-verbal and would probably require long-term care. They looked to Easter Seals for help.

Kai began autism services and showed amazing progress after only nine months. Talking was his first noticeable change. Because he was able to communicate, he had more meaningful interactions with family and other children, and began to enjoy activities. No longer isolated, Kai is now a social butterfly! He enjoys playing games and is also on target with spelling, counting, reading and writing.

When young children with special needs and developmental delays are diagnosed and receive early intervention services, they are able to build lifelong skills and achieve their dreams. That’s why Easter Seals is fighting to get children at risk the support they need to build a foundation for a lifetime of learning. Visit our Make The First Five Count site. Read stories about other kids like Kai and access our free developmental milestones screening tool.

Keeping up with Ben

by Rachel Talen

I was very moved to hear that Easter Seals’ 2012 national adult representative Ben Trockman had written a post on his own personal blog on the anniversary of the motocross accident that caused his spinal cord injury. After I read it, I asked if I could excerpt parts of Ben’s post here on the Easter Seals blog. Ben graciously said yes.

I was introduced to Ben at Easter Seals Celebration of Giving in San Diego last May and was immediately struck by his positive attitude, not to mention his wit. And his charm! So now I’m one of the lucky ones to call Ben a friend. There’s no doubt his personality is magnetic: he wins over every crowd he speaks to. My grandparents attended the event in San Diego, too and had the honor of meeting Ben. They were so taken by him that they asked me for his photo. One year later, it’s still on their fridge!

I highly recommend you join me in regularly reading Ben’s blog: he is so active that it’s the only way to keep up with him.

In the post about his accident, Ben writes that when he was a teenager, he and his brother rode dirt bikes with their dad just about every weekend. On race weekends, their mom would come too, joining other motocross moms to set up tents, get the food together and eventually help strap up a boot or two.

Ben was 17 years old on March 19, 2006, the day his family traveled together to Poole, Kentucky for a race. “The track at Poole was extremely poorly designed,” Ben wrote. “We as a family had always said we would never race there because of the quality of the track. But, for some reason, that weekend we decided to go ahead and race there.”

Race officials cancelled the race after realizing there weren’t enough racers to fill the track, but after a little lobbying, the officials changed their minds. The race was back on.

Most of the people in the race that day were either family, friends of Ben, or guys Ben knew from previous practices or races. He recalls that “after a little stretching, some warm-up starts, and chugging an energy drink, I competed in my last motocross event.”

Ben doesn’t go into details about the accident, only saying that he was unable to breathe on his own immediately after the wreck. His father performed CPR for nearly 30 minutes before LifeFlight arrived to fly him to Deaconess Hospital in Evansville, Indiana, where it was determined that he’d broken his C1 and C2 vertebrae and suffered a spinal cord injury.

Ben was eventually transferred to the Shepherd Center in Atlanta for three months, and then after a short stint at home he shipped off for three months of rehab at the Kennedy Krieger Institute in Baltimore, where he worked with the same doctor who treated Christopher Reeve. From Ben’s post:

Since the day of my injury, so many things have changed. I’m not that cocky, stubborn 17-year-old boy anymore. I am now a 24-year-old man living with a disability in a much different world than in 2006.

I cannot pop out of bed every single morning and do what I please. It takes somewhere around an hour and a half, and two nurses to get me up. Then, I have to have someone who knows exactly how to take care of me, drive me to where I need to go. Whether I am going to class, where I am now a junior at the University of Southern Indiana, traveling to therapy, or driving to a speaking engagement.

Either way, things just are not as effortless and simple as what they used to be, but I am still living and breathing.

Ben uses his blog post to thank all of the people, friends, family, nurses, therapists and total strangers who helped him along the way. “I would not be here, living my life happily, not living in regret, without the people who have supported me along my travels,” he says, adding that at age 24, he’s accomplished more with his life than he ever imagined before his injury, including his year as a national adult representative for Easter Seals. “During my travels as the local and national representative, I have met some incredible people that are destined to be lifelong friends.”

What color am I wearing?

by Beth Finke

People stare at my Seeing Eye dog and me sometimes. Who can blame them? We’re an unusual pair! But as long as they’re watching, I want to look good.

So when I heard that the Segal Design Institute at Northwestern University was looking for projects to help people with disabilities, I suggested they have their freshmen engineering students try to come up with some easy way we blind folks could keep track of the color of our clothing. Right now I put a safety pin in the tag of anything I own that is black, and a paper clip on anything white. I wear other colors, too, and I memorize what color those other things are by the feel of the clothing.

My proposal got a thumbs-up, and after my Seeing Eye dog Whitney and I visited Northwestern to explain what I needed, one engineering class there divided into four different groups to tackle my problem. They visited our apartment a couple of times to take a look at the way I arrange my clothing now and to ask questions that would help with their research. Freshmen in other Design Thinking and Communication class sections were working on other projects for people with disabilities at the same time. Here are some examples

• A man who uses a wheelchair wanted an easier way to fold up the footrests when it came to transferring into a car or a regular chair
• A man with cerebral palsy was looking for a more efficient way to pull his trousers up on his own
• Occupational therapists asked for a device that might encourage their clients with Parkinson’s disease to do finger exercises on-the-go
• The Rehabilitation Institute of Chicago hoped a class could figure out a way for clients with visual impairments to know how fast (and at what speed) they were walking on exercise treadmills
• a woman who uses a wheelchair and enjoys outdoor concerts was looking for a way to slide from her chair onto the lawn, then get back into her chair again on her own when the concert was over.

Whitney and I traveled to a Design Expo at Northwestern to hear all of the students present their completed projects. When the students working on my color identification challenge had visited our apartment in February with prototypes, they ranged from carabiners to iron-on tags to QR codes that my talking iPhone could read to me. Seeing (okay, touching) what these four teams had come up with in the end made me glad I’d come out of the closet about my wardrobe woes! All four teams had expanded on my tried and true safety-pin method, each team inventing different things to hang from the pin to correspond to the color of the item.

The “Fantagstic!” team came up with acrylic shapes on cloth tags. They reasoned that cloth tags would be lightweight, so I could use two or more at a time to identify multi-colored items. The tags another team came up with were laser-cut acrylic shapes called “Depindables.” The “Code of Many Colors” team used small glass beads on the safety pin: one bead means black, two beads mean white, and so on. “Tag Team” was the only team to use traditional Braille code on its tags — the other teams learned from research that a majority of people who are visually impaired do not read Braille. The tags that all four teams came up with had all been tested to withstand high temperatures in the washer and dryer.

Judges from engineering firms were on hand to decide on winners for each proposal, and the winner for mine was … drumroll, please … Tag Team!

The Tag Team system is more than a label to safety-pin onto my clothes. It’s also a way to organize my closet and laundry. Tag Team includes a laundry hamper that holds a number of mesh bags, each bag with a tag attached that corresponds with a single color. They figure doing laundry will be easier if I don’t mix all my clothing in the hamper, only to have to resort it all again when the wash cycle is over. “All you do is put your clothes in the bag it belongs in, take the bag out, tighten the string, and throw the bag in the washing machine.”

I had to hand it to ‘em. But if you ask me, all the teams at the design expo were winners. These kids are just freshmen, and not only have they learned about design process, but also how much it can mean to work together to help people with unusual, unique, and unmet needs. I was the biggest winner of all, though: I got to work side-by-side with these talented and thoughtful young people, and when design expo was over, I walked out with custom-made prototypes of all the tags!

Folks I talked to from the Segal Design Institute at Northwestern University told me they’re always looking for new project proposals from people with disabilities and organizations who work with us. If there’s something you need and you live in the Chicago area, submit a proposal soon. If you don’t live near Chicago, I strongly suggest you encourage a college near you to start a similar program. Working with this one at Northwestern was, well … fantagstic!

A Mom’s blog … with reasons not to “freak out”

by Rachel Talen

Here’s Kelly with another terrific guest post.

Happy to share my birthday month this year

by Kelly Zatlin

March has always been my favorite month … it’s my birthday month! Come to find out, though, that March is also National Developmental Disabilities Awareness Month. How cool is that?

I became aware of this when I read a blog called To The Max on Parents.com. To The Max is written by a mother, Ellen Seidman, whose son Max has significant disabilities. Her post called If Your Child Has Developmental Delays: 5 Reasons Not to Freak Out was published during this special month to “help increase your awareness about why you shouldn’t let delays get you down.” She gives great reasons for parents not to “freak out” and also cites studies from Easter Seals. In one post, she brings attention to the work we do at Easter Seals AND helps spread awareness about developmental delays. I think we love this woman!

It’s definitely hard for any parent to hear the news that their child has a disability or is developmentally delayed in some way. Ellen has been through it all and she knows just how difficult it can be, but after going through it herself, she also knows that it doesn’t have to be as tough as you may think. Why? I’ll give you the quick version, but I also encourage you to read her post for even more information. Some reasons not to freak out:

• Because children’s brains are impressionable and malleable
• Because you have resources
• Because there is comfort in numbers
• Because there is no rush to the finish line

In the early stages, Ellen was left with no hope from her doctors when she needed it the most, but eventually, she found that hope for her son and for her family through early intervention services. The harsh reality is that more than one million children who are at risk of developmental delays go undiagnosed every year, which keeps them from receiving services that could help tremendously. Ellen, like Easter Seals, wants people to know that doing something early on can make all the difference in the world and will give their child a better chance at the happiness and independence they deserve.

Our Make the First Five Count campaign here at Easter Seals promotes early intervention and, as the name implies, encourages tracking development in the first five years of a child’s life. Ellen brings up a good point that each child develops at their own pace, but one of the ways Easter Seals helps parents track their own child’s development is through our Ages and Stages Questionnaire, which is a free online screening tool. I’m not even close to being a parent, but I can’t stress enough how important it is for parents to utilize the Ages and Stages Questionnaire to track their child’s developmental milestones, whether or not they think their child may have a disability. Ellen knows what she’s talking about when it comes to early identification, and I’m so glad she wrote this post in honor of my birthday month … I mean, in honor of National Developmental Disabilities Awareness Month. Reading her post was like eating the birthday cake I never got this year, just without the calories!

Awarding good values!

by Bob Glowacki

We just completed our annual employee awards here at Easter Seals Southeast Wisconsin, and this year we gave four of our 200+ staff members the Living Our Values award.

The Living Our Values award recognizes staff members that go above and beyond in living the values of our affiliate: welcoming, humility, respect and integrity. The award is one I created within the first month I became CEO/President here in Milwaukee, and I was especially moved by the way each one of this year’s four award-winning individuals lives our mission.

One therapist in our early intervention services connected two families together because each had twins with special needs. Her goal was to help them learn from each other and feel less isolated. One of our management team has grown and expanded our workforce services so that in 2012, 17 individuals now are employed in community employment. She was also responsible for expanding our Project SEARCH to a new hospital in 2013. The growth of our job placement has been phenomenal over the last two years. We started with just a handful of success stories in 2010, and now 90 individuals are moving toward community employment.

Another staff member dealt with a family who had been evicted from their home and was living in their car. The children could have been taken from their mother, but this staff member found housing and the family remained together. Another individual started a knitting class at our Workforce Training Center, and the hats, mittens and scarves were donated to a local agency to help those in need.

These staff members represent the creativity, dedication and compassion of Easter Seals staff members across the country. Our awards mark a year in the life of Easter Seals, but the impact of caring staff like these last a lifetime.

We’re in business here at Easter Seals Capper Foundation

by Jim Leiker

Coleen Jennison is the consummate volunteer and has woven her way into our hearts, reading books to the preschool children we serve.

Our Business Support Center is a mail production site that provides full and part-time work for people with disabilities. The Business Support Center offers a variety of services to meet the needs of the business community by providing professional, quality products and services, and the article In Topeka Business highlights the work that adults with autism at Capper Foundation do (spending time organizing and assembling toys and kids’ meal components) to support Kid Stuff Marketing for restaurants all over the world. We appreciate all that Tara Dimick (editor of Topeka Business magazine) and Melissa Brunner (author of this article and WIBW TV news anchor) do to create awareness of our Adult Services program and in engaging community members.

Coleen Jennison (Easter Seals Capper Foundation’s Board Vice-Chair and chair of the Greater Topeka Chamber of Commerce Board of Directors) is on the magazine’s cover, and she’s interviewed in the story as well. Coleen Jennison is the consummate volunteer and has woven her way into our hearts reading books to the preschool children we serve. We are truly blessed by the caring, generous members of our community.

Can I bring my white cane through security?

by Beth Finke

I got a helpful comment to the blog post I wrote about the Transportation Security Administration’s Passenger Support Specialists program. The man who commented is blind, and he said I might benefit from using my talking iPhone to go to TSA’s mobile site before I head to the airport later this month.

I gave it a try, and … Eureka! I found an extremely helpful option there right off the bat: the TSA offers a Can I bring my … through the security checkpoint? feature where you can type in names of items to learn what you can and can’t take through security when you fly. The results let you know if the item can be carried-on, put in checked baggage, or if it’s not allowed for plane travel at all.

For me, I might type in stuff like “metal dog food bowl,” and “Braille slate and stylus” to see if I can carry them through the checkpoint or whether I have to check them in a bag. For now, let’s try “folded white cane.”

Okay, here’s what came up:

Some mobility aids may require specialized screening. To expedite your travel, notify the Transportation Security Officer of your need for special assistance at the beginning of the checkpoint screening process. At any time during the screening process, you may ask for a private screening area.

The response went on to say that even if an item is generally permitted, it may be subject to additional screening. In the end it might not be allowed through the checkpoint anyway if it “triggers an alarm during the screening process, appears to have been tampered with, or poses other security concerns.” The site said the final decision on whether to allow any items on the plane rests with TSA and suggest you notify the security officer of your medical condition or need for special assistance at the beginning of the checkpoint process.

The TSA Contact Center (TCC) recently extended its hours, and representatives are now available Monday to Friday, 8:00 a.m. to 11:00 p.m. Eastern time, and weekends and federal holidays, 9:00 a.m. to 8:00 p.m. Eastern time. The TSA encourages passengers to contact the TCC with questions about TSA procedures, upcoming travel or to provide feedback or voice concerns. I may have to give them a call. When I typed in “metal dog food bowl” no such items were found. I tried “bowl” and while it didn’t answer my question about metal dog food bowls, I did learn I couldn’t bring a bowling ball along in my carry-on bag if I wanted to. The response said “sports equipment that can be used as a bludgeon are prohibited in the cabin of the plane.”