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!

A love story you won’t find in a fairy tale book

by Rachel Talen

Recently I said goodbye to my fabulous Marketing & Corporate Relations intern, Kelly Zatlin. During her 3 1/2 months at Easter Seals, Kelly grew to love Easter Seals’ mission and became her own kind of advocate for people with disabilities. She’s an awesome writer and we love her thoughtful blog posts.

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.

Never too early to start planning for summer camp!

by Sara Croft

When I was a kid, going to summer Camp brought me out of my shell. I learned there were other kids out there with interests similar to mine. I loved to play piano and practically any musical instrument you put in front of me, and camp was a great way for me to meet fellow budding musicians. Many of them are my friends to this day.

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!

Siblings Matter

by Rachel Talen

You might remember my post about the Siblings Study, which helped us better understand the challenges adults who have siblings with disabilities face.

Well, Easter Seals long-time corporate sponsor MassMutual really wanted to dive into this issue by raising awareness about siblings with disabilities and offer ways to help with financial planning for caregivers.

To celebrate siblings and provide financial and educational resources for those who are caring for a sibling with a disability, MassMutual is speaking out over social media.

They’re encouraging everyone to share what their sibling means to them. It can be on Facebook, Twitter or Instagram — just use the hashtag #siblingsmatter any time from April 30th to May 31st. Even if you don’t have a sibling, you can still post about friends and family who are like a sibling to them.

And, it gets better! Once the hashtag has been used 10,000 times, MassMutual will donate $25,000 to Easter Seals to supports its mission of providing help, hope and answers to the more than one million children and adults living with disabilities and other special needs each year.

If you have a sibling with a disability, they can find helpful information, connect with others in similar situations or access help from a MassMutual SpecialCare expert by visiting facebook.com/massmutual or massmutual.com/specialcare.

A summer camp recommendation from an expert!

by Rachel Talen

Here’s a guest post by camper Joy Durkee about one very special time at Easter Seals Camp in Southern California.

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!