“Easter Seals was our raft”

by Beth Finke

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

An Army Reserve Specialist about to be deployed to Afghanistan for a year, Richard Mariello was worried about leaving his family behind.

“We were nervous,” his wife, Lynn, says. “We aren’t your typical family.” Indeed, in addition to their teenagers, the Mariellos have fostered more than 20 children over the years.

Fortunately Easter Seals was able to help the family through predeployment, deployment and after Richard returned home. From gift cards for necessities like groceries and gasoline, to connecting the family to sources for home repairs, Easter Seals provided one-on-one support.

Today Richard is happy to serve as the Easter Seals 2013 National Adult Representative.

“We felt like we were swimming,” he says. “We’re strong swimmers but sometimes we got tired and needed a life raft. Easter Seals was our raft.”

When you support Easter Seals, you make it possible for us to meet the pressing needs of America’s heroes: military, veterans, their families, and families of the fallen.

Art, technology & autism

by Patricia Wright

I was introduced to Second Life, an online virtual world, several years ago. There has been a lot of discussion and research about the use of Second Life to support individuals with autism. Second Life also has a rich arts community. Recently the Second Life art, technology and autism community has aligned with the new Guardian Autism Art Museum.

Easter Seals has championed creativity within the autism community with our two Sketch-a-Space competitions — in 2010 and 2012. This new museum provides another forum to celebrate the creativity of those living with autism. I look forward to visiting the galleries, seeing the art and admiring the creativity.

Ben’s D.C. Travel Diary, Part 2

by Rachel Talen

I’m pleased to present Part 2 of former adult representative Ben Trockman’s D.C. visit diary. Ben recently returned from a trip to Washington, D.C. where he met with legislators and members of the disability community in his mission to make airline travel more accessible.

My D.C. Travel Diary, Part 2
by Ben Trockman

Wednesday, May 15

Our second day of meetings started with Lee Perselay and Andy Imparato, who are two top staffers to Sen. Tom Harkin of Iowa. Sen. Harkin was the Chief Senate sponsor of the Americans With Disabilities Act, and the main author.

Our meeting with Lee and Andy was absolutely the most informative and overall the best meeting we had while in D.C. They gave us information about a similar project that had started with a man in Oregon, working with Boeing on creating a more accessible airliner.

They also gave us additional “inside” information on the true difficulty of passing legislation of this sort and what it will really take to convince the airlines that this change is necessary. We also discussed different strategies of publicizing the issue.

Overall, we left that meeting with a lot of great ideas on the next steps on whom to contact and how to proceed.

We then had a quick lunch with Tony Young, who is the involved with NISH, which is an organization dedicated to improving employment opportunities for individuals with disabilities. Although, the NISH mission does not directly correlate with our cause, Tony is also a quadriplegic and he has traveled via the airlines numerous times. Therefore, we had some time to share a few stories while just simply making a genuine connection for future discussion.

We then took the Russell buildings’ elevator upstairs to meet with the Chief of Staff to Sen. Dan Coats. I once again pitched my idea, and we had a semi-brief discussion on different issues relating to my proposal.

Our final meeting of the trip was with a few folks from the Department of Transportation. The DOT building is about a 15 minute Metro ride across town right near the D.C. Nationals baseball park.

Now, as much as we wanted our last meeting to be the most positive, in this case, it was not. We could certainly tell that the DOT folks directly follow the rulebook.

They brought up safety concerns (something we expected), the issue of how much it would cost to upgrade the airliners, and they even threw in information on how the airplane floor is probably not equipped for the weight of a power wheelchair. They also asked what the demand might be for an improvement such as this, although I was thinking to myself that this is more of a human rights issue than a demand issue.

If anything, the meeting with the Department of Transportation certainly leveled out our expectations for the future. It is going to be a long fight to improve the airlines for individuals like myself with disabilities.

There are many steps ahead, but this is something that I will never give up on. It is a change that has to be made, a change that my family and I were willing to drive 12 hours to the nation’s capital to speak with these leaders about.

Although, this may not happen as fast as we all may want it to, the initial steps have been taken. We are spreading the word and reopening the issue; the conversation has been started. I look forward to reporting back more positive news in the future.

Never give up, never slow down and always move forward.

Ben’s D.C. Travel Diary, Part 1

by Rachel Talen

I’m pleased to present Part 1 of 2 guest posts by our former Adult Representative Ben Trockman. Ben recently returned from a trip to Washington, D.C. where he met with legislators and members of the disability community in his mission to make airline travel more accessible. Ben’s diary originally appeared on his blog, Ben’s Opinions. Check it out!

My D.C. Travel Diary, Part 1
by Ben Trockman

Sunday, May 12th

Early on Mother’s Day Sunday, my family and I finished loading up the coolers, packed the cars full of our favorite road trip snacks and set out for our trip to Washington, D.C. Our mission to spread the word of the necessity of increased accessibility of airline travel for individuals with disabilities had commenced.

After somewhere around a 12-hour drive, traveling the length of the Bluegrass State, rolling and bending back and forth through the hills of West Virginia and a short trip through Maryland, we finally made it to our hotel, the Crowne Plaza Hamilton in the nation’s capital, about 10:00 p.m.

Monday, May 13th

We planned the trip in a way that we had a free day between Sunday, the travel day and Tuesday and Wednesday, which was jam-packed full of meetings. So, my family and I had the opportunity to meander through D.C., taking in the sights of the beautiful monuments and centuries-old government buildings — my personal favorite being the nation’s Capitol building.

After seemingly walking halfway around Washington, DC taking in the sights, my family and I decided to end the evening a bit early. The plan was to meet Jennifer Dexter, the VP of Government Relations at Easter Seals at 10:30 the next morning at the Easter Seals D.C. Headquarters (which, luckily for us was only a block away from our hotel) to prepare and discuss our schedule for the big first-day.

Ever since I came up with this “harebrained” idea of improving airline accessibility, Easter Seals has taken strong interest. They have been there every step of the way, including the hard work of Jennifer Dexter, who arranged most all of the meetings while in DC.

Tuesday, May 14

The first meeting on Tuesday was with Kelly Buckland, who is the CEO of the National Council on Independent Living. Kelly as a quadriplegic, as well and he provided an extensive background of information on some of his involvement/mishaps with the airlines. Kelly also gave us a few different contacts with whom he has made over the years that I believe will be truly beneficial for our efforts in the future — a good start to our day.

We then loaded on the Metro and headed towards Rep. Susan Brooks (IN) office in the Longworth House building. We were honored to have Rep. Brooks present at the meeting. Rep. Brooks is truly a lovely and down to earth person. After pitching my proposal, we had a very substantive conversation full of interaction. In fact, she suggested connecting us with someone at Boeing to delve deeper into the issue.

After about a 45-minute conversation with Rep. Brooks, we headed to the Senate side of the Capitol to meet with Katie Campbell in the office of Sen. Joe Donnelly (IN).

Our meeting with Ms. Campbell was a bit shorter, and not quite as interactive as what we had with Rep. Brooks, but still a good meet. It was a bit of a strange meeting, being that Sen. Donnelly has not yet moved into his permanent office. So, I had to meet with Ms. Campbell in the hallway outside of the Senators temporary office; although, it was a lovely hallway.

The final meeting of the day was with Rep. Larry Bucshon (IN). When entering his office, I was very surprised to see that he was sitting right there behind the door. We did not expect the congressman to be present for the meeting, although I am extremely glad that he was present.

Rep. Bucshon is on the Transportation and Infrastructure Committee, therefore he was able to provide some extensive background information and also tell us a bit about what he thought was the appropriate way to continue forward; the possibility of amending the Air Carrier Access Act, among many other ideas.

That was probably our best meeting of the day, the congressman showed a lot of interest, and I truly believe he will be a great ally in our future. He even took the time to snap a few photos before the end of his day; we left his office a little after 5:00 p.m.

Stay tuned for our next blog post, in which we’ll share Part 2 of Ben’s D.C. Travel Diary, and his second day of meetings with legislators and policy makers in Washington, D.C.

In Zach’s words

by Bob Glowacki

I wanted to share with you a wonderful success story about one of the children receiving services from our autism services. Zach is a 10 year old boy, who started shortly after autism program began and has made HUGE gains. He is now in a mainstream classroom with less need for special education services.

Zach was unable to answer questions about himself when we started Applied Behavioral Analysis with him. He had a difficult time forming a complete sentence. He was recently asked to talk in front of his school about what it’s like to have autism and some of things people can be aware of to help those living with autism feel welcome. Some great advice for all of us.

Zach wrote the following:

Autism: a documentary of autistic children
In this document, we will study about children with a thing called autism. Autism is when a child’s brain works differently than others. Let’s say it like this — a child might not know the math problem 3/6 1 whole, but autistic children might know. They sometimes are extremely intelligent that they get accepted into charter schools! They might get very picky about their food a lot, so they might only eat pancakes for breakfast, grilled cheese for lunch, and pizza for dinner, or something like that. They can struggle very horribly when their alone. They can sometimes not struggle. There are people called “therapist” that help autistic children at home, school and even at the park! They can believe in things most of the time, like a talking dog. When they get older, they are normally (well sometimes) bullied A LOT because they have autism. If they tell others they have autism, the other child will understand a lot. They can never understand how things work if they see what they are doing with help from a therapist. Therapists are people that teach the child what they need to know in life. Autism is always not bad or good all the time. They have meltdowns sometimes when things get bad, confusing or mean. Here are some things to help the child: never be rude to him/her. If they do, always help them when needed. And last but not least, always be his/her helper through changes in life and cheer him/her up when sad. That’s the end of this documentary.

Five therapy activities parents can do during the normal routine

by Sara Croft

Editor’s Note: Sara’s post originally appeared on the Easter Seals Crossroads blog. Check it out!

Occupational therapy can play a key role in helping a child meet developmental milestones. There are times when it is appropriate for an occupational therapist to visit a family in their home, or times when a child needs to visit Easter Seals Crossroads to use specific equipment in our sensory and therapy rooms, but some therapy activities can be conducted by a parent during their child’s normal daily routine.

We asked two of our occupational therapists, Teri Maloney and Claire Werner, for a short list of therapy activities that can be done during activities of daily living.

1. Utilize bath time for more than just cleaning. Use bath bubbles or bath crayons to practice letter formation and handwriting in a fun environment. Also during bath time, allow your child to practice hand strengthening by wringing the bath water out of a washcloth.
2. Use tweezers instead of forks during dinner and pretend they are chopsticks! Another great way to practice hand strengthening.
3. Cooking can take a lot of upper body strength, so bring your child into the kitchen and allow them to measure and pour liquids or stir the cookie dough batter (Then reward them with a cookie!).
4. Yoga is a great way to help strengthen the upper body and the core, and can also be very calming for kids with high arousal sensory issues. Practice yoga near bedtime as part of a routine to get ready to sleep.
5. Learning to hold a toothbrush in one hand and squeeze toothpaste with the other helps a child practice bilateral coordination.

How do you integrate therapy into your child’s daily routine? Leave a comment and let us know!

Are you considering occupational therapy for your child, or are you unsure if your child is in need of therapy services? Consider taking the free online Ages & Stages Questionnaire, a tool that will help you see if your child’s developmental progress is on time.

Learning from our mistakes

by Rachel Talen

My fabulous Marketing & Corporate Relations intern, Kelly Zatlin’s internship may be over, but she still had one more blog post to share.

Mistakes Kids Make
By Kelly Zatlin

When I was a teenager, I was the definition of a “goody-too-shoes.” I never got in trouble, I never stayed out past curfew, and I always ate my vegetables (ok, that part is a lie…I slyly shoved them under my plate when my mom wasn’t looking). The point is, I never got into trouble beyond “do your homework!” or “make your bed!” I always wonder, though, if things could have turned out differently for me if I went to a different school or hung around a different group of kids. Maybe I wouldn’t have the same opportunities that I have today.

Though I maintained my mostly reputable behavior throughout my teenage years, I knew a few kids in high school and in college who did end up in the slammer, whether it was because they were truly “bad apples,” or because they were going through some tough times and transitions in life, or because they were teenagers making foolish mistakes because they feel “invincible.” Some of them now have trouble getting quality jobs, maintaining quality relationships with friends and family and living successful lives because of mistakes they made.

So what does this have to do with Easter Seals? Well, Easter Seals is all about early intervention for all kids, whether they have autism, developmental delays or need some intervention services. With these services, children are less likely to be held back a grade, less likely to need special education and more likely to graduate high school. It has been proven that these individuals are less involved in crime and delinquency as well. According to Easter Seals Facts and Figures, “Early care and education for vulnerable young children keeps kids in school and helps them find jobs; it keeps kids in communities out of jail.”

Easter Seals recently learned of a campaign that is trying to change the way kids are dealt with when they make mistakes. According to their website, MistakesKidsMake.org, many are thrown into jail for non-violent crimes, and they don’t necessarily get the intervention or the help that they need. Because of the mistakes they make when they are young, blind to their faults and narcissistic in nature, they end up with tarnished records that make it hard to live successful lives later on.

Mistakes Kids Make is trying to change the way teens are dealt with when they do things like shoplift, vandalize, consume alcohol underage, etc. Their website lists the stat that only 5 percent of kids who are arrested commit violent crimes, while the other 95 percent who don’t, get the same fate of a tarnished record.

While I personally believe kids should pay for the mistakes they make so that they can learn from them, different crimes should be dealt with in different ways. Kids who commit crimes deserve some sort of punishment, but they also deserve a chance to redeem themselves.

Mistakes Kids Make isn’t saying that kids shouldn’t be held responsible, but they want to go about it in a different way. They say on their website: “hold kids accountable? Yes. Teach kids responsibility? Absolutely. Help kids become their better selves? Let’s do it. But not at the cost of their chance for a good education, a good job, and a healthy, productive life as they grow.”

Mistakes Kids Make has the same goals as Easter Seals: to give all kids the chance to live greater lives filled with opportunities to reach their full potential. While Mistakes Kids Make deals with different issues than Easter Seals, they have the same end goal: to make life count for kids early on, so that they can live better lives in the future.

Start Early program supports Wisconsin families

by Bob Glowacki

We often get calls here at Easter Seals Southeast Wisconsin from parents who recently received an autism diagnosis for their child. Their first question is usually, “what do you recommend for my child?” That’s quickly followed by, “how is it funded?” Conversations usually start with talking about the importance of early intervention services and the Make The First Five Count Campaign. Best outcomes are a result of early intervention services, many of which range from 20-40 hours a week. As you can imagine, 40 hours of therapy is costly … right around $50,000 to be exact.

Some insurance policies cover autism therapy; however the majority of children are utilizing Medicaid funding. Here in chilly Wisconsin the wait list is approaching two years. When we let families know their child may not be eligible to receive services for another two years, we feel terrible. After brainstorming ways to support families in another capacity, we’re thrilled to be launching our new Start Early program.

Start Early is targeted for families who recently had a child diagnosed and are unable to start services right away. It’s an intensive, four-week class that gives families the tools to help their child while they are on the wait list for services. Classes focus on the basics of autism, how to target communication, handle maladaptive behaviors, IEPs (Individualized Education Programs), toilet training and other topics that we feel are the main things parents may struggle with at first.

The biggest benefit of the Start Early program is that families will have access to current, research based information on how to begin teaching their child skills! In addition, parents will learn that all behaviors serve a function, making it not only easier for them to manage problem behaviors, but also to understand why they are occurring. During each session, families will attend a 90 minute presentation followed by time to work one on one with a Board Certified Behavior Analyst. During this time, the family will be able to practice the techniques they were taught during the presentation. Families will develop familiarity with the principles of Applied Behavior Analysis (ABA), which will make the transition into receiving services easier for both parent and child.

Parent training is a key piece of Easter Seals Southeast Wisconsin’s in-home ABA program. Board Certified Behavior Analysts (BCBAs) and Senior Interventionists work to train the line interventionists to best implement the programs, but they also work with the parents to explain why ABA is effective, what the programs accomplish, and the functions of all the behaviors a child can display. The families that we serve love to share amazing stories of their children excelling and learning new skills both during and outside of therapy sessions. Start Early will allow families to have that information up front, before they finish the long wait for waiver funding.

Help us get a message to Congress

by Jennifer Dexter

Easter Seals has led the way since our founding to get more people the services and supports they need in their home and community. Almost 100 years later, we are still fighting to help people get what they want and need. I’m responsible for leading those efforts here in DC. I need your help in getting a message to Congress.

Long-term services and supports — like adult day services, personal attendant care, assistive technology, transportation and housing — are critical to helping people with disabilities of any age. Our current system forces people to spend down their financial assets until they reach poverty before they can receive the help they need. It fails to provide realistic opportunities for personal planning, and support to families and caregivers. We can and must do better.

Easter Seals needs your voice to help to make it easier for people to access long-term services and supports. We are partnering with other national organizations in sponsoring a petition to Congress. Please follow the link below and add your name to the thousands of supporters who have already signed the petition!

Tell Congress: Address Financing for Long-term Services and Supports.

Thank you for your advocacy!

Help us make progress!

by Beth Finke

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

With 50 million people with disabilities across the country, the need for Easter Seals life-changing work continues to grow. But we are making progress every day thanks to you. We encourage you to help us call attention to the experience of people with disabilities, and to raise awareness of and advocate for the services they need.

• The president’s budget recommends a much-needed increase for the federal early intervention program. But we need to convince Congress that this program needs to be a high priority. Sign our Make The First Five Count petition. Help us break last year’s record of 40,000 signatures!
• Spread the word about our Ages and Stages Questionnaire. To date, thousands of parents have used this free online developmental milestone tool to track their child’s development.
• It’s Spring and that means thousands of supporters like you are signing up online for Easter Seals Walk With Me events across the country. Find an event near you and join in the fun!