Debby Boone’s “friend-raiser” raises awareness of our services for adults with autism

by Paula Pompa-Craven

A story in Westside Today earlier this month mentioned Easter Seals Southern California and a Santa Monica Beach Club event hosted by Debby Boone, a singer best known for her hit You Light Up My Life.

Seven-time Grammy winner Debby Boone hosted more than 30 old and new friends of Easter Seals Southern California (ESSC) at the Beach Club in Santa Monica in May to generate greater community awareness for local services for people with autism and other developmental disabilities. Guests included TV and radio personality Geri Jewell, comedienne Kathy Buckley, and musician Tobi Forrest.

The event raised awareness for people with autism and other disabilities. It also let people know about the services we provide for employment, pre-school and after school programs and services that help adults learn basic daily living and social skills. It was great to have an opportunity like this to let people know that in addition to our programs for children, our services help adults with autism, too.

Yours truly on sports TV

by Maurice Snell

Hello blog readers! If you enjoyed my post a few weeks ago about spending time with actor Joe Mantegna and White Sox manager Ozzie Guillen, you’re going to love this one.

Turns out that after Ozzie Guillen and Joe Mantegna visited the Easter Seals Metropolitan Chicago’s Therapeutic School and Center for Autism Research, Comcast SportsNet did a segment about their commitment to people with autism and Easter Seals Metropolitan Chicago.

If you go to the Comcast SportsNet Web site and click on the video called Ozzie Guillen Lends a Hand in the Fight Against Autism 6/16, you’ll see a segment starring yours truly. Enjoy and…go White Sox!

King of the house: happy Father’s Day!

by Beth Finke

It’s Father’s Day this weekend, and to mark the occasion I’m updating you on a father whose son was recently diagnosed with autism. You might remember my post about children’s book author Jim C. Hines — he is a wordsmith, but in his most recent autism-related post, he admits his son’s diagnosis has left him struggling with one particular word.

One thing I’ve noticed about myself: I can say Jackson is on the Autistic Spectrum. I can say he has Aspergers Syndrome. But I have a really hard time saying he has autism. My brain just rebels at that point.

Jim’s honesty about this could give license for the rest of us to talk about our own feelings without worrying we are wrong to feel the way we do, or that we are in denial, we are bad parents. Quite the contrary.

We’re still looking into options and trying to figure out what he actually needs. It’s not about “Autistic children need _______.” It’s about “Jackson, who happens to be ASD, needs _______.”

One of those needs is to improve his hand-eye coordination and fine motor skills. Building with LEGOs seems like one way to work on that. I’ve also started him on regular LEGO Star Wars video gaming therapy. Now if I could only get him to stop blowing me up …

Jim ends his post with one last story about Jackson, who he describes as very rule-oriented:

My wife was teaching him to play checkers. He did quite well … and then he got his first king, at which point he announced, “but kings make their own rules!”

Indeed. Sometimes, the blogosphere can seem pretty Mom-heavy … so let’s shout out a happy Father’s Day to all those cool dads out there … it’s your day!

Meet the magnificent Monti, Milwaukee’s Walk with Me ambassador

by Bob Glowacki

It is seldom that you come across a 3-year-old that has already lived through so many medical struggles, but that is the story of Monti Taylor. Monti has been fighting battles his whole short life, and he and his family have not given up. Not even once.

The first struggle began the day Monti was born. He was born prematurely, but weighed in at a healthy seven pounds. Monti developed feeding problems and jaundice, however, along with other complications that led to weeks in the intensive care unit.

When he was finally able to go home, he spent his early months on a monitor for postnatal apnea. There were other medical challenges along the way but Monti overcame them and began growing in to a strong, smiling, happy boy.

After turning 2, things began to change. Monti exhibited decreased attention and communication skills. Monti’s doctor suggested that he be tested for autism, and he was diagnosed in May of last year.

Monti’s parents enrolled their son in our Birth to Three program here at Easter Seals Southeast Wisconsin and received autism therapy services. His mom noticed immediate progress and Monti, now age 3, attends Grantosa Drive elementary school and continues to make progress in his language and social skills every day.

Monti’s family and his teachers are very proud of this happy, loving little boy and are very grateful for the help he and his family received from Easter Seals.

Monti is just one of many examples of the success of early intervention therapies for children with autism, and the help doesn’t end after early intervention. Easter Seals will be here to provide support services for Monti and his family as he grows, and as his needs change in high school, with employment and beyond.

Monti has been selected as an honorary ambassador for Easter Seals Southeastern Wisconsin’s Walk With Me event this Friday evening, June 18th. Money raised through this Walk will be used to provide direct services for individuals with special needs in Southeast Wisconsin. Please visit and consider donating to our walk — your support will go far beyond just one evening of walking and it will forever make a difference in the life of someone like Monti.

Learning more about autism in China

by Patricia Wright

Today I head off to Nanjing, China on an autism education effort to provide professional development in autism treatment. I’ll be working with the Five Project, an organization of people with career backgrounds and personal interest in adult literacy, special education and mental health. The founders and Board Members of the Five Project are hoping to help meet the needs of individuals with disabilities and special educational needs in China, and for Chinese-speaking families in the United States. The Five Project and its team members have been working and developing relationships in China since 1992. During this 2010 trip, the Five Project will be working with the Sanxin School in Nanjing to increase evidence-based practice into their curriculum.

The needs of people with autism are vast here in the United States and throughout the world. Traveling to countries to learn about autism treatment has been a wonderful experience. Autism exists in every culture, but it is certainly perceived and treated differently throughout the world. Spending time in other cultures and learning about other practices is always exciting. I have never traveled to mainland China, and I am looking forward to learning about the approach to autism treatment there. And the best part? Meeting new students and families! As every teacher knows, working with the kids is always the most fun!

Back to you in a few weeks with pictures and stories about this experience.

Special Siblings — author Mary McHugh needs to hear from you

by Beth Finke

I’m pleased to introduce my friend Mary McHugh as a guest blogger. Mary is the author of 17 books, including Special Siblings: Growing up with Someone with a Disability.

Advice to Teens Growing up with a Brother or Sister with Special Needs
by Mary McHugh

I need your help for a new book I’m working on. The book is called Special Siblings: Advice to Teens Growing up with a Brother or Sister with Special Needs. It’s the sequel to my previous book about my brother Jack who had cerebral palsy and brain damage.

In that first book, I interviewed people of all ages as well as professionals in the field to write a book that would be a friend to siblings of people with disabilities. After Special Siblings was published, a lot of people told me there was a real need for a book that would concentrate on teenagers who have siblings with special needs. So I’m interviewing teens and experts in this field to find out the latest research, the best resources, the feelings and needs of young people who find themselves in a family with a brother or sister who has some kind of disability.

I have already talked to a lot of teens and am impressed with their ability to cope, their creativity in helping their siblings achieve and reach their highest potential, their important place in the family, and what they need from their parents — mainly more information and more responsibility in their sibling’s care. If you are a teen or a professional who counsels teens, I would love to talk to you. I won’t use your name unless you want me to so you can be totally honest in your feelings, good and not so good. One of my primary aims in this book is to reassure teen siblings that their feelings of embarrassment, resentment, or guilt are normal, that all of us siblings feel that way from time to time. So far, teens seem to be pretty positive about their feelings about their siblings, mostly because there is so much more information out there about people with disabilities so there is more understanding among people who don’t live with this situation.

But I need to know how you feel. What would help you the most in this book? What do you want other people to know about you? Even if you don’t read this book yourself, what would you want your parents to know? What would you want therapists, counselors, teachers, social workers to know that would be especially helpful to teens?

Help me make this a truly teen-friendly book, full of good resources, helpful information, practical suggestions on how to deal with your sibs, your parents, your friends, and strangers who stare at your brother or sister. Tell me your plans for the future and how your sibling will be involved in your life.

If you would like to be interviewed by me — either by phone or email — email me at mmchugh655(at)aol(dot)com and either tell me your phone number so I can call you, or ask me to send you some questions to answer by email. I want this book to really help people and I could use your wisdom, your creativity, and the special knowledge you have because you grew up with a brother or sister with special needs.

Thank you!

A.C. Moore crafting a new world for people with autism

by Patricia Wright

I have a lot of talents. Crafting, however, is not one of them. Asked to use my hands to contribute to the crafting community, I stretch out my finger, press a button on the computer keyboard, and link to Etsy. Etsy is my “place to buy and sell all things handmade” — I link there regularly to purchase cool earrings from crafters.

So when the fabulous crafting store A.C. Moore Arts & Crafts decided to work with Easter Seals to promote autism awareness and raise funds to provide services and supports for people with autism, I wasn’t too sure. I mean, I know a lot about autism, I just wasn’t sure how autism and crafting could connect. Well … this simply proves that I have a lot to learn!

A.C. Moore champions the message Crafting a Better World in their cause marketing work. This message is a great match for Easter Seals and autism awareness. In April, A.C. Moore provided autism awareness and education to every customer who purchased something at their check-out stand. That month they also hosted a free Make and Take crafting activity that involved a jigsaw puzzle. The puzzle piece is almost ubiquitous with autism awareness, and A.C. Moore’s jigsaw craft made the autism and crafting connection I was wondering about! The event was extremely popular in communities. Not only did A.C. Moore educate thousands of customers about autism, they also raised $141,000 for Easter Seals to use to deliver local autism services.

The top fundraising store for this campaign was in Delaware, and a few of us from Easter Seals were able to travel out there earlier this month to celebrate with the store. Through collaboration with corporate partners like AC Moore, Easter Seals is able to educate and serve so many more people with autism. And, I got to visit a craft store for the first time ever. Who knew there were so many cool things at A.C. Moore? I will definitely be making a return visit!

Time with Joe Mantegna is “a great kind of fun”

by Maurice Snell

Summer is almost here, ladies and gentlemen, and June is off to a great start here at Easter Seals Metropolitan Chicago’s Therapeutic School and Center for Autism Research. Last week Easter Seals Metropolitan Chicago welcomed two people to the school, actor Joe Mantegna and White Sox manager Ozzie Guillen.

The White Sox game the previous night, June 1, 2010 was declared Joe Mantegna and Ozzie Guillen Easter Seals Metropolitan Chicago Autism Awareness Day, proclaimed by Governor Pat Quinn (D-Illinois). Pre-game festivities featured Joe throwing out the ceremonial first pitch. Just for the record, it was a strike, just a little bit inside. The Governor and Easter Seals Metropolitan Chicago CEO F. Timothy Muri also recognized Joe and ozzie for their generous efforts.

I was fortunate to spend time with Joe Mantegna and the rest of his family in his private skybox at the ballpark. Overall, it was a great kind of fun! The following day, both Ozzie and Joe stopped by the Therapeutic School for a press conference about constructing Phase Two, a therapy pool and fitness center for the clients. Joe Mantegna has a daughter with autism, and Ozzie Guillen is board member here at Easter Seals Metropolitan Chicago. They discussed their commitment to help raise $8 million to build the second phase of the Therapeutic School and Center for Autism Research.

I was fortunate enough to give the grand tour to the most distinguished guests and they both enjoyed having me as their tour guide. They had the opportunity to visit some classrooms and spend time with the students, including Noah Martin — you might remember the post I wrote about Ozzie Guillen hosting Noah and his family during Spring Training earlier this year. It was an enjoyable day for the staff and students; it’s something we all can remember.

Once again, it was a pleasure to welcome back Ozzie and Joe to the Therapeutic School. I thank them both for their generous support of Easter Seals!

Speaking the same language, part two

by Patricia Wright

In my last post I promised to give blog readers more details on the Second International Congress on Persons with Disabilities I was fortunate enough to attend in Guadalajara last week, so here goes!

My colleague Beverlyn Mendez, the Chief Operating Officer at Easter Seals Southern California, joined me to give a presentation on augmentative and alternative communication (AAC). We were also able to share time with our colleagues from the Confederación Mexicana de Organizaciones en Favor de la Persona con Discapacidad Intelectua (CONFE) to discuss how we can most effectively provide services and supports to individuals with disabilities.

And the good news is that Beverlyn actually speaks REAL Spanish as opposed to the “fake” Spanish I try to get away with. This, of course, is just one quality among many that Beverlyn possesses — she also has an amazing understanding of how to work collaboratively to meet the needs of people with disabilities. She was such a valuable asset to the trip to Mexico, as she really appreciates working collaboratively to promote the best outcome.

With international work, we have the opportunity to learn so much. One of my learning opportunities from this trip was that the natural supports that exist in Mexico within extended family are amazing! Two of the more memorable people I met In Guadalajara were our two hosts from CONFE: Javier Quijano Orvananos and Maria Quijano Orvananos. Yep, they are brother and sister. Their family has a long history of supporting people with disabilities, as they have a brother who was born with Down Syndrome.

Easter Seals was able to share some of the communication strategies we are currently using in the United States with individuals who don’t develop spoken language. There are lots of different ways to communicate. Some people with autism point to pictures or symbols to tell people with they want. Others use sophisticated computer devices with touch screens that have pictures, symbols and words on them. The person with autism touches the screen on the computer, and the computer generates a voice — the computer talks! Pretty funny that I was in a country where I don’t speak the language and I was talking about communication, don’t you think? Good thing the topic was autism so that I at least had some content knowledge!

All in all, an absolutely wonderful and rewarding trip. Having opportunities to learn together like this makes all the difference in the world.

When it comes to autism, we speak the same language

by Patricia Wright

I love speaking in another language, even when I’m not proficient. Some people might view this as a deficit, but I have no shame — I just go for it! I’m sure I sound like a two year old but hey! Better than not trying at all, right?

I was able to try my Spanish last week at the Second International Congress on Persons with Disabilities, held in Guadalajara, Mexico. The Congress was aimed at professionals, parents, therapists, doctors, volunteers and anyone who is keen to learn more about the latest developments in the treatment and care of people with disabilities. Easter Seals was delighted to be in attendance.

Easter Seals has recently established a relationship with Confederación Mexicana de Organizaciones en Favor de la Persona con Discapacidad Intelectua (CONFE). CONFE is a national network of 160 associations in Mexico that share a mission: to be a factor for people with intellectual disabilities and their families, and see that they have a life of greater quality and social integration.

Easter Seals is delighted to be working with CONFE. Through our sharing of ideas, strengths and needs we can learn together to ensure people with disabilities in the United States and in Mexico have the best opportunity for a high quality life.

I’ll share more about my trip in a blog post next week, but right now, I’ve gotta go. Hasta luego!