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.

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.

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.

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.

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.

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.

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!

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!

Like so many of our other interns, Kelly came in a little unsure. She is leaving us a pro, though, and I’m so proud of her. Good luck with your future endeavors, Kelly, and keep writing!
 

A few weeks ago I was looking through Ellen Seidman’s Love that Max blog and came across a post called 5 Love Stories to Celebrate. One of the love stories in particular caught my eye, so I read their story and watched their wedding video. Within minutes, my eyes were glossy and I was sniffling at my desk. Luckily, everyone in my cubicle area was at a conference so there were no witnesses.

Ian and Larissa met in college and knew right away that they were meant for each other. They talked about marriage early on and planned to marry once they were finished with college. After ten months of dating, Ian got in a terrible car accident that caused significant brain damage and left him in a wheel chair. At first he couldn’t communicate and needed assistance to do everything from eating to dressing.

Larissa moved in with Ian’s parents to help out. For four years she stuck by his side, knowing their relationship would never be the same, but also knowing their love for each other would never change either. To Larissa, the only thing the accident changed was Ian’s outward physicality; it didn’t change who he was and it did not alter an ounce of the love she had for him.

For four years Larissa told herself that if Ian reached a point where he could communicate with her in basic ways, she would marry him and continue on the life they had planned before the accident occurred. She knew full well how difficult it would be to watch her friends marry men who could dance with them at their weddings and drive them to church on Sundays, but her commitment to Ian did not let those things get in the way.

Larissa was very honest in a blog post she wrote about their relationship, sharing the real challenges she knew she’d face:

Marrying Ian meant that I was signing on to things that I don’t think I ever would’ve chosen for myself — working my whole life, having a husband who can’t be left alone, managing his caregivers, remembering to get the oil changed, advocating for medical care, balancing checkbooks, and on. The practical costs felt huge, and those didn’t even touch on the emotional and spiritual battles that I would face.

Ian and Larissa were married on a warm august evening underneath her parent’s trees in the mountains, surrounded by their family and friends. “The decision to get married was one of the hardest but simplest decisions we’ll face,” said Larissa. “I’ve heard that choosing marriage for anyone can raise doubts and fears. I think a disability takes those normal fears, and multiplies them.”

Their beautiful and emotional ceremony was filled with tears, both happy and sad. “Even though we chose marriage, we chose it sadly,” said Larissa. “Sorrow has been a permanent resident in our 20s.” Larissa shares with her readers that even though sorrow has been such a big part of their life, they find hope and faith and believe wholeheartedly that they do not walk this road alone.

This story hit a soft, almost liquid spot in me because I recently got engaged. I like to think that the love my fiancé and I share is just as strong as theirs, and faced with this same situation, we would have the strength and enduring love that Larissa and Ian display.

I’m sure it’s much easier said than done and I can’t imagine being in her shoes, but I think she is such a great example of what commitment and love really mean in a day and age where people often throw out what’s broken, rather than try to fix it.

Here at Easter Seals Crossroads, summertime gives me an opportunity to see those same sorts of relationships created for the children who participate in CampAbility or Camp R.O.C.K.S. What’s great about camps through Easter Seals is that they have therapeutic benefits. Both CampAbility and Camp R.O.C.K.S. have physical, speech and occupational therapists working alongside the kids. Easter Seals is also the largest provider of recreation and camping services for people with disabilities in the country.

When kids are separated from their parents for the first time, they gain a sense of independence and start to trust themselves and their own instincts. Camp environment allows kids to participate in teams, discover what they’re interested in and meet a new circle of friends.

Last year I had my first visit to the Camp R.O.C.K.S. in Martinsville, about 30 minutes south of Indianapolis. This two-week overnight camp allows young people on the autism spectrum to meet others like themselves and participate in fun activities such as swimming, hiking, high ropes courses, basketball and outdoor camping. The climbing wall was my favorite outdoor activity. The campers were so brave — I’m not so sure I would have made it to the top!

Camp staff coached the campers as they climbed upward, giving them words of encouragement. Some campers had made strong friendships and were practically inseparable, so they climbed the wall together.

On my drive home from Camp R.O.C.K.S. I reflected on my own camp experiences and related them to the fun and lifelong relationships that these kids are engaging in now. Do you have a similar camp experience you’d like to share? Leave a comment on this blog and let us know!