Autism voice on the National Council on Disability … confirmed!

I came home from China to some good news: on June 20th, the U.S. Senate unanimously confirmed Ari Ne’eman to serve on the National Council on Disability (NCD) alongside President Obama’s seven other nominees.

Founder and President of the Autistic Self-Advocacy Network (ASAN), Ne’eman is the first person with autism to serve on the NCD. The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism, and Ne’eman is a good fit for the council.

You might recall from my post last March that his appointment had provoked a bit of controversy. His confirmation has been eagerly anticipated by the self-advocacy community since his nomination last December, and I join them in congratulating Ari and all the new members of NCD for their appointments to such an important post.

 

Adults with autism are behind the success of Harry’s Buttons

Making buttonsWhen Harry Engnell Jr. graduated from high school in 1998, his parents found few supports available to help a young person with autism find work and make other transitions to adulthood.

Harry’s dad knew his son liked repetitive tasks, So he bought him equipment to start making buttons as a hobby. Harry Jr. loved making buttons, and so did many of his friends with autism. And thus, a business was born. From the HarrysButtons.com Web site:

Our buttons are “hand-made” primarily by people with Autism at Easter Seals Metropolitan Chicago Adult Vocational Programs.

Together we make beautiful 1 1/4″, 2 1/4″ and 3″ round buttons for any occasion, campaign, or promotion. Tell us what you’re looking for and we will custom make it for you, with pride.

Easter Seals micro-enterprise coordinator Kelly Anne Ohde oversees HarrysButtons.com and can’t say enough about what Harry’s parents did to make this all happen for their son. “When they couldn’t find work that suited him, they created a solution,” Kelly says. “Now that solution is changing many lives.”

Learn more by visiting HarrysButtons.com.

Read Wendy Murphy’s biography.

 

Horse Power

In addition to my job here moderating the Easter Seals and Autism blog, I keep a personal blog about my writing life and the childrens book I wrote. A few weeks ago I sat on a panel about blogging at the Southeast Wisconsin Festival of books. During the panel I mostly talked about my personal blog, since the festival was about books and all. I did manage to bring up the Easter Seals and Autism blog at least once, though. Okay, twice. Maybe three times! All I know is that I brought up autism enough to draw the interest of a librarian in the audience.

Alli Chase is the Library Director of a small rural public library in Eagle, Wisconsin. She also volunteers with Horse Power Healing Center at Jericho Farms, in Eagle. Horse Power is a pending non-profit that works with kids and adults with autism and other disabilities. “Maybe you know folks who would be interested in knowing about this kind of program?” she asked. I said I did.

I contacted Ali when I got back home and she directed me to this wonderful story on the Jericho Creek Farms site written by the mother of a boy with autism.

Brindley, who is now 10, has severe autism and limited speech. It was my hope that riding a horse would motivate Brindley to speak more, learn new responsibilities, and practice some social skills. I had no doubt in my mind that this would be an awesome experience for him, given the fact that the few times he had been on a horse, his smile was always lit with a special joy.

In preparing for our first trip to Jericho Creek Farm, Liz (Brindley’s home therapist) wrote a social story for Brindley that we read to him a few times, so that he knew what to expect from the experience. This helped reduce Brindley’s anxiety, which often accompanies his excitement.

On Brindley’s first trip to the farm he was introduced to Chaheetah, a white and speckled Morab horse with a gentle disposition. He was taught how to brush the horse, and after his dad helped him on to Chaheetah, the horse was led around the arena.

Brindley was taught the commands,wWalk on!” and “whoa!” so he could learn how to make the horse go and stop. His face was filled with happiness and pride.

Brindley has completed four lessons now and has learned to brush his horse and thank Chaheetah when the lessons are done. He puts the helmet and saddle away at the end of each lesson and always gives Chaheetah a treat before he leaves. His mother reports Brindley has retained the new vocabulary he’s learned, and that spontaneous language has occurred at the farm, not only concerning Chaheetah, but also about the kittens who live in the barn.

One day Brindley indicated we should take one of the kittens home when he spontaneously said, “Orange cat, Mama home.” Brindley has initiated conversations at school and on the bus about the “white horse,” and how it is the day to “ride Chaheetah.” He has taken an interest in sharing his new world with others and I can’t be more thrilled.

Gee, you never know who you might meet at a book festival. I’m sure glad I ran into Alli the librarian!

 

Selfless moms on Facebook

Visit Easter Seals on FacebookRemember that post I wrote about a month ago? The one that questioned whether mothers of kids who have autism and other disabilities are more selfless than other moms? Well, it got tons of comments on Facebook.

You may already know that Easter Seals has a fan page on Facebook, but did you know that Easter Seals and Autism blog posts shows up on our Facebook wall too? They do! And they spark great conversations.

Check out this sampling of comments from Facebook fans in response to that selfless mom post, for example:

MAGUI: Well … I do not think I am better than any other mom, but my child with Autism does not sleep … my days usually run in between 17 to sometimes 24 hours a day. I’m most definitely not a better mom because I have a child with special needs, but I definitely do a lot more than an average mom … I love my daughter with all my heart so the extra work, the meltdowns, the tantrums, the aggressivity, the sleepless nights, the therapies, the ARD meetings, the learning of Special Ed class, special ed laws, nutrition, doctors, so on and so forth are for her … I might not be better, but I do more than the average mom.

MERCEDES: I don’t think we are better, but I do think we have more challenges actually, we deal with the normal challenges and the special needs ones

BEK: Magui, you put it beautifully: “I might not be better, but I do more than the average mom.” I’m guessing that’s what the original article/list was trying to say but they couldn’t figure out a way to do it without a million footnotes and explanations …

ELIZABETH: I’m seeing a lot of “normal” mom and “average” mom/kids in the comments here. I agree that parenting a child with special needs has unique challenges, I don’t particularly like be labeled as an “average” or “normal” mom because my child does not have special needs. We each face our own set of unique challenges as parents, whether those challenges are brought about by our children themselves or other circumstances within our families and communities is irrelevant.

In addition to featuring our autism blog posts on Facebook, Easter Seals shares the latest news and posts disability etiquette and facts there too. It’s enlightening to visit the Facebook page and find such great conversations taking place. It’s quite a community. People are sharing their own experiences and thoughts.

If you’re already a member of Facebook, visit our wall and click the “like” button at the top of our page. Our posts will be included in your wall feed. Not on Facebook? That’s OK. You can still see our posts. If you want to comment or join the conversation though, you’ll need to sign up for your own account. Whichever way you find us, thanks for reading and responding to our blog!

 

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

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

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!

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

MontiIt 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

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

Mary and her brother JackI’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!