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.

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.

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!

Meeting Avril Lavigne

by Joy Durkee

I grew up listening to my brother recount great memories from his experiences at camp, and then I began asking my mom when I was going to be able to go to camp, too. She was hesitant at first, but after much research, she came across Easter Seals Camp. That began my 20-year relationship with Easter Seals, leading to many wonderful opportunities and events for me.

I first attended Easter Seals Camp when I was 9 years old. Since then, I’ve talked to groups about Easter Seals and camp, I’ve done radio interviews, I’ve been in training videos for various companies, and I even participated in a sailing regatta in Long Beach.

Camp was my first experience away from home for more than one night, and I’ll be honest: the thought of going away for an entire week was definitely nerve-wracking, both for me and my parents. I definitely dealt with some homesickness, and my parents were anxious all week to come pick me up. Looking back, I am so thankful that my parents didn’t let their fears keep me from one of the most wonderful experiences of my life. In addition to meeting some incredible people and becoming part of the Easter Seals Camp family, I also learned some invaluable skills:

• Taking care of myself
• Being more independent
• Improving my social skills
• Interacting with others

Thanks to what I learned from my years at camp, I was able to go to a four-year college and live independently in the dorms. The people who work so hard to make camp happen every year are some of the most incredible people in the world.

Easter Seals Camp is completely volunteer-driven. Directors, nurses, counselors, and counselors-in-training come from all over the country at their own expense. They work their tails off so that people like me can have a week where we have no limitations.

It never ceases to amaze me (and truly touch my heart) to see how many of those volunteers continue to come back year after year. Many of them have been coming at least as long as I have.

Last year I got the surprise of a lifetime: I got to meet Avril Lavigne! Ever since I heard Avril had created a Rockstar Club for Easter Seals, I thought in the back of my mind that it would be awfully cool if she came up to camp someday. I never thought it would actually happen though!

Meeting Avril Lavigne is a moment I will never forget. I was so touched by her humility and her genuine interest in all of us. She was determined to do whatever she could to help make camp even better and allow more people to experience this amazing place.

The unconditional love and support that I have received from everyone at Easter Seals and at camp is unparalleled. Easter Seals Camp is truly the happiest place on earth!

He and his team hiked through rocky, snowy terrain in below-freezing temperatures for 10 days to accomplish something really amazing. Eli’s father was at his son’s side on the 70-mile trek, and he reported Eli actually led the way at times. “We were dragging. We were experiencing our own sense of disability as we went up into the mountains,” he said. “He led us all the way to base camp.

Over 2,000 people from all over the country signed a card Easter Seals sent to congratulate Eli on his achievement, and we want to congratulate his family, friends and experienced guides here as well. Support like that is crucial for any person to achieve their dream, whether the dream is climbing the world’s tallest mountain or taking a first step during physical therapy. Way to go, Eli, and way to go, team!

Carrying his son in his arms

by Kelly Zatlin

During Monday’s terrible bombing at the Boston Marathon, many at Easter Seals and around the country were immediately concerned about the condition of Team Hoyt, the famous father and son marathon duo in which the father, Dick runs with his son Rick, who has Cerebral palsy. Being new here, I wasn’t aware until this week that The Hoyt Foundation is a partner with Easter Seals.

Thankfully, Team Hoyt remained unharmed. Just one mile from the finish line, they were told to stop because of an explosion. Not knowing what to do or where to go, the father and son were helped by a stranger who took them back to their hotel in his SUV. Dick had to carry his son into the hotel because Rick’s wheelchair got lost in the chaos of everything.

The Hoyts and the 30 other members running in support of Team Hoyt remained unharmed at the race. This was Team Hoyt’s 31st run in the Boston Marathon, and they are quick to say it won’t be their last.

While what happened in Boston taught us that there are some awful people in this world, it also taught us that there are some really fantastic people who want to help, serve and be there for others. Even now in this sad time after the 2013 Boston Marathon, Team Hoyt and the good that they do can be an inspiration to people around the country. The events of this week aren’t going to stop Team Hoyt from running marathons, and it’s not going to stop other athletes with disabilities from taking part in marathons and triathlons, either.

An online support group called My Autism Team describes itself like this:

A social network to make it easier for parents to connect with each other and exchange insights about providers. Our philosophy is to make it easy for all parents to get to the answers they need.

I’ve found My Autism Team to be a fantastic resource to parents raising a child with autism. Their site features four main sections:

• 1. Find Providers
• 2. Find Parents
• 3. Question & Answer
• 4. Activity

With more than 40,000 parents on the My Autism Team site, there is a wealth of expertise from other parents. Parent-to-parent support is important, and social networking provides another opportunity to build connections and a community of support. Check out My Autism Team and see if it’s a site that works for you.

Your donations at Hair Cuttery in April will go twice as far to help us Make the First Five Count to support Easter Seals services, early identification, early intervention and screening services.

Dennis Ratner, Founder and CEO of Ratner Companies, parent company of Hair Cuttery, pointed out in a press release that many Hair Cuttery associates have young children and know firsthand how important the early years are for their continued success in life. He’s right. The first five years of life really count, yet every year, more than a million young children with unidentified delays and disabilities enter school with learning and health issues that put them far behind their peers.

That’s why Easter Seals created Make the First Five Count®, to engage parents around the importance of early identification — because children only receive services when parents follow their instincts and take action early if something doesn’t feel quite right. And now, with your donations and Hair Cuttery’s support, Easter Seals will continue to help children and adults with disabilities receive important services so they can live, learn, work and play in their communities.

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!