I am the father of two wonderful kids, Molly and Tommy, and I know the worries all parents have, the dreams we have for our children and the fearful moments. Will they fit in with the other kids at school? Are they getting good grades? Am I bringing them up right? I heard a good quote recently, that the good parents are always asking themselves, “Am I doing the right thing for my child?”

I’m not sure how to conclude this blog post except to say I have tremendous respect for those families living with autism. I admire their strength and dedication. Their love for their children is amazing. When families pull together like this it is truly heroic. When I see families like this at Easter Seals Southeast Wisconsin, it makes me more committed to providing services that will lighten the load on such tremendously caring parents and loved ones.

The book begins with an explanation of what autism is, and what it is not. From there the author explains the diagnostic process and autism treatments. My favorite chapter is the one that answers common questions asked by parents of children with autism. Terms, references and resources are found at the end of every chapter, which helps parents key in on issues one at a time.

I can’t say that this book will take away all the fears and worries parents will have about their newly-diagnosed child, but it sure will help parents know what questions to ask when working with doctors and therapists.

The struggle for equal opportunity for Americans with disabilities is an essential part of our country’s commitment to civil and human rights for all Americans, and no legislator understood that better than Kennedy. He will definitely be missed, but his legacy will be felt for generations to come. My prayers go to his family and to our country.

Easter Seals and Autism — For families living with autism, this site provides “help, hope, and answers.” Topics include what happens when children with autism become adults with autism, the link between disabilities and homelessness, book reviews and autism support.

This news about our Top 50 status comes at a time when a nurse practitioner friend of mine is visiting. Through this friend, and from the care our son Gus has received from nurse practitioners over the years, we have come to trust, value and respect the work of nurse practitioners. It is an honor for our Easter Seals and Autism blog to be recognized in this way. It is flattering to think that when students who want to become nurse practitioners have questions about autism, they might just turn to the Easter Seals and Autism blog for “help, hope and answers.”

One essay was written by Tom Keating, a Ph.D., who specializes in assistive technology. He says his perspective is strongly influenced by his role as primary care provider for a brother with autism. Another author, Ann P. Kaiser, wrote an essay called Transition about her brother, who wasn’t diagnosed with autism until adulthood.

The essays by adult siblings of people with autism were not all sugary-sweet — the authors reveal both positive and negative aspects of growing up with someone who has autism. That’s what I liked best about the essays — they were honest.

Thicker than Water gave me an insider’s view of the decisions so many siblings have to make in regards to their families. All in all, an interesting and eye-opening read.

Along with other Easter Seals affiliate and national staff members who handle state government relations, I networked with state legislators, learned about the issues facing my state legislators, and educated legislators and their staff on issues facing Easter Seals.

I also wear the “autism spokesperson” hat for Easter Seals New Jersey, so I participated in a session for legislators called Autism Spectrum Disorders: State and Federal Policy Trends. The session was sponsored jointly by Easter Seals and the Association of University Centers on Disabilities (AUCD).

Our session began with George Jesien, executive director of AUCD, and Jennifer Bogin, project manager for AUCD, who discussed research, education and services for individuals with ASD. They were followed by Denise Rozell, assistant vice president for state government relations for Easter Seals. Denise detailed what’s new with state legislators and encouraged them to link to our 2009 State Autism Profiles. The profiles provide factual, objective descriptions of what the 50 states, D.C. and Puerto Rico are doing for people with autism.

After Denise, Pennsylvania Representative Dennis O’Brien and Maryland Representative Kirill Reznik captivated the audience with stories of how they advocate for people with autism. And then it was our turn: Charlie Briggs, assistant vice president of adult and community services for Easter Seals Goodwill Northern Rocky Mountain and I were prepared to discuss our state’s accomplishments and share some personal stories. The reason I say “were prepared” is that the session ran long. By the time Charlie and I were supposed to speak, attending legislators and their staff needed to get on their way to the next event. Bill Gates was presenting immediately following our session! And while fans of Charlie and me would agree that we are two of the most engaging and amazing speakers, we recognized that we are not the great Gates. We let our fans move on.

What I had wanted to share with the audience was my viewpoint as a parent of a child with ASD — to help them understand why all of this matters. Two of the speakers had discussed “the cliff,” the feeling that many families experience when their child with autism turns 21 and the scope of services changes dramatically (for the worse).

My son is only 12 so I haven’t seen that particular cliff yet. But trust me, I’ve had many hair-raising experiences already with other cliffs. I’ve been on the edge, frustrated by the lack of available services my son desperately needed. That feeling is something you never forget. You want to give up and jump off. And, sometimes, you want to push someone else off with you while you’re at it!

I’m a resourceful person with a graduate degree in special education. I have a lifetime worth of contacts and experiences with supporting people with disabilities. I’m a blessed person surrounded by friends, family and colleagues who would all do whatever was necessary to help my son and me. I have a roof, a job and health insurance. But I still couldn’t find the services that would meet my son’s needs. If I can stand on the edge of that cliff and consider how much easier it would be to give up, one can only imagine what it’s like to be in a more challenging situation.

Whether you are a legislator, a friend, a supporter, a fan, a family member, or someone with ASD, you can’t ever give up. You can’t let the cliff get the best of you. Resisting the urge to jump can make you stronger. Let the cliff make the best of you, use your strength to give it all you have — ensure that people with ASD all over this country get the services they need. If we work together, maybe fewer people will end up living on the edge.

The child born in 1980 – the year the American Psychiatric Association first added autism to its list of known mental disorders – is now nearly 30 years old.

The story tracks a couple of young adults with autism, including Eric Foley. Eric graduated from high school at age 20. He has lived with his parents Rob and Donna Foley ever since.

Rob and Donna have worked hard to leave Eric financially secure, but for Donna, the question of Eric’s future is not as simple as money.

“I’m 60. I’m not going to live forever,” Donna said. “Who is going to care for him? Who will treat him with tolerance and patience? Who will love him?”

The story credits our Easter Seals Living with Autism Study for providing quantifiable information about the services and supports that families living with autism desperately need.

In 2008, Easter Seals conducted a national study and found that 1.5 million Americans have an autism spectrum disorder. Twenty percent, or 300,000, of those people are age 22 or older.

The details of the study told a story that parents of children with autism have known all along.

• 76 percent of teenagers with autism over the age of 16 have never looked for a job.

• 79 percent of parents of children with autism are “extremely” or “very” concerned about their children’s future independence. Of “typical” parents, by comparison, 32 percent are equally concerned.

• 79 percent of adults with autism still live at home.

Easter Seals stands out as the nation’s leading provider of services and support for children — and adults — living withautism. The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has autism — is an overwhelming concern about the life-long supports their child with autism may need. More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working internationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating with government to encourage financing for research and improved access to services and supports for people with autism.

Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps. There is an urgent need for increased funding and services — especially for adults with autism.

We want to help change all of this and make a difference for families living with autism today. Help us change the lives of people living with autism by becoming a volunteer or donor — visit www.actforautism.org to learn more about autism, read the findings of the Easter Seals Living with Autism Study, and find services at an Easter Seals near you.

Dan seemed on a normal developmental track for his first three and a half years until things went haywire. His speech suddenly stopped. He sat in a corner gnawing on his shirt. His parents first thought it would pass, then that it was a hearing issue, and finally the cold, terrifying diagnosis came.

The Mulvaney’s local Long Island school district didn’t know what to do with Dan. They told his parents that Dan would be better off at home or a “special school.” Dan’s parents thought differently. They didn’t want their son in an institution. They wanted him in a local school. They wanted him to live in his own house.

So instead, with the assistance of the district’s head of special education, Mary Tatem, they pushed and prodded, became total pests, made themselves and the district crazy but ended up with the best education Dan could hope for, one where he ate with other kids and became part of their world — good for him, good for them. And along the way, Long Beach transformed itself from a district that barely knew how to deal with special-needs kids into one of the best in the region.

Dan graduated from Long Beach High School last Sunday and will be moving into a group home with three other guys later this summer.

Dan and his parents, like so many this time of year, will start anew with both a new set of possibilities and unalterable ties to the life they’ve somehow suddenly, miraculously outgrown.

Congratulations to Dan, and congratulations to his parents.

One father I rely on for insight on this topic is Matthew Baldwin. Baldwin runs the blog Defective Yeti. The blog features posts on politics, writing, movies and the like. After Baldwin’s son was diagnosed with Autism Spectrum Disorder (ASD), Defective Yeti started publishing posts about autism, too. I’ve referred to Defective Yeti in an Easter Seals autism blog post before, and when I started searching on Sunday for something father-related, I was confident Baldwin had written something interesting I could link to belatedly about his relationship with his son. Sure enough, Matthew Baldwin does not disappoint. In a Defective Yeti post about a month ago, Baldwin links readers to an op-ed piece he wrote for The Morning News last month about the new Star Trek movie.

As I watched this film last Saturday and Mr. Spock walked onto the bridge with his stiff demeanor and his formal language, my initial reaction was: “Oh man, that guy is so Asperger’s.”

Baldwin goes on to point out that Spock’s difference from the rest of the crew is central to his character. The difference is largely mental, Baldwin says, and that’s part of the cachet.

He is a man of two worlds, and cherishes the dual nature of his heritage. Unlike Data (the android in Star Trek: The Next Generation who was forever pining to “be more human”), Spock is perfectly comfortable with who he is — not a bad message to send to kids whose neurological state is classified as a “disorder.”

Baldwin describes the way Spock views and analyzes the world in a different way than the rest of the crew. Though Spock’s insight helps the crew face challenges, he is criticized for being impassive and labeled an “unfeeling automaton.”

So too have those with ASD been habitually misunderstood, their reluctance to socialize mistaken for aloofness, their difficulty making eye contact interpreted as signs of deviousness. Emotions run deep in half-Vulcans and persons with autism alike, even if they are not always apparent to the untrained eye.

At the end of his op-ed piece, Baldwin acknowledges that some people with autism might not appreciate being compared to movie aliens. Still, Baldwin says, Spock gives him hope for his son’s future.

All I can say is that, as the father of an autistic son and a lifelong member of the Trek-curious club, the new film filled me with hope. Watching Kirk and Spock — two men with vastly different worldviews — form a friendship based on mutual trust and admiration, I found myself thinking, “that’s the future I want my child to grow up in.

Hope you dads out there had a happy Father’s Day last Sunday, and that you enjoy many, many more in the future. Live long and prosper.

While Easter Seals has been facilitating day programs in the Milwaukee area for many years, we are new to the Kenosha area in terms of providing direct care. Susan Klawien coordinates our new inclusive Adult Day Center in Kenosha, and I am pleased to introduce her as a guest blogger. Susan will share her thoughts on how the program operates and the level of support necessary.

Adults with autism thrive at new inclusive adult day center
by Susan Klawien

Our Kenosha Adult Day Services program is set up in an organized fashion — from a daily schedule of activities, to the room layout. There are places for our participants to receive sensory breaks within the room. We also give our participants the opportunity to select the activities they wish to do. This promotes independence and choice.

Through our collaboration with the YMCA, we have jobs for the participants, such as folding towels and sheets, caring for the indoor plants in the fitness area, and planting seeds in the gardens. They also learn specific activities of daily living skills each day.

Being an inclusive environment at the YMCA helps our participants adapt to surroundings and changes. YMCA patrons and staff have been welcoming in their daily interactions. Children in the YMCA’s after-school, day care, and summer camp programs have been curious, but have also shown respect and understanding.

Communication is a big factor. Some of our participants understand through sign language or verbal cues, others use different methods. Board maker pictures of the daily schedule are on the wall, and we use a dry erase board to list activity options. The options are erased after completion.

Adults with autism can — and do — lead meaningful lives. Easter Seals believes that with proper supports, adults with autism can all live, learn, work and play in their communities. Families living with autism need supports after their loved ones leave the school system. Providers need to prepare for the future strengths, needs, hopes and dreams of those individuals living on the spectrum.