An update on Maurice’s summer

It’s been a while since I last posted a blog to the Easter Seals and Autism Web site. I haven’t really traveled outside of Illinois lately, but I will soon. However, I am excited about the changes at Easter Seals and how that will affect many Chicagoans (and Americans as well).

It wasn’t until the last week before summer break — Father’s Day to be exact — that I participated in a 5K Run and Walk to raise awareness about autism. I was fortunate to reunite with the people who work for Easter Seals Joliet and they were thrilled to have me and the family come a long way to join them. At first, I was nervous because I haven’t sprinted in a long time; I feared that I was out of shape and couldn’t keep up with the others. But fortunately, I did not dare to run; I contributed by walking with the other walkers and help spread the message to the town that the children need our help today. Our mission was to gather everyone up in the community and work hard to reach the ultimate goal. In the end, everyone has reached their goal.

Another great thing I’ve discovered: I’m beginning to see the new Easter Seals Metropolitan Chicago Therapeutic Day School and Center for Autism Research come to form. We just had the groundbreaking ceremony this past October — my, how time flies! The construction people have been working like clockwork putting the new school together. One week, I just saw pictures of the day-by-day construction on the Easter Seals Metropolitan Chicago Web site. Then one week later, they began building up from the ground, up to the second floor of the building. We have to give the construction workers credit for doing a job well done. This is already a start of a greater future for Easter Seals in Chicago and the nation.

As for traveling, I’ll be back to it soon! My next trip is back to Dallas, Texas for a fundraiser for Easter Seals in Greater Dallas, so I’ll hope to report to you about it soon! I wish you all a great summer!


Celebrating independent living on Independence Day

This Fourth of July will be the fifth year our son has lived independently of us.

Our son Gus is 20 years old. He communicates by propelling himself to whatever it is he needs. When he wants to hear music, for example, he scoots to the piano.

Gus doesn’t talk or sing, but he does laugh and poke at the piano keys with whoever is playing the tunes. He claps with delight whenever he hears live music. He loves to hold hands, especially while swinging on a porch swing.

When Gus became a teenager, we needed more help with him at home. We found suggestions and advice about in-home services but as Gus continued growing bigger, my husband Mike and I grew older.

Shortly after Gus’ sixteenth birthday, we realized it was time for him to move. We started researching services for adults and eventually decided a group home would be best.

Gus cried his entire first weekend away. So did we, but we thought it best to leave him alone for a while and give him a chance to adjust to his new life independent from his parents. The transition from our home to a group home wasn’t easy, but it turned out well. For all of us.

On our first visit, we found Gus happy and smiling, yet not quite sure what to make of these visitors on his new turf. I sang to him. He felt my face. Suddenly he burst out in laughter,
realizing it really was me. It was a good visit. As I leaned down to kiss Gus goodbye, he took off. He couldn’t wait to get back to his roommates in his new home.

Now when we visit Gus, it’s all fun. No talking him into sitting on the toilet, no muscling him into the shower, no changing his diapers. No drudgery.

Gus seems relieved too … he’s finally allowed to do things independently of his parents.

Hmmm … maybe Gus has more in common with other 20-year-olds than I thought.

Happy Independence Day everyone!


Book review: Paula Kluth’s “You’re Going to Love this Kid!”

Cover of 'You're Going To Love This Kid!'

Students with autism are becoming more frequent members of general education classrooms. You’re Going to Love This Kid!: Teaching Students With Autism in the Inclusive Classroom, by Paula Kluth, Ph.D., is a unique resource dedicated solely to inclusion and individuals with autism.

Kluth’s book is engaging and informative. The intended audience is classroom teachers, but parents and other professionals working towards inclusive schools will be interested in this book as well.

The opening chapter of the book includes first-person accounts of students who experience autism. These individuals give the reader clarity and insight from a first-person viewpoint about the experience of having autism. Kluth then addresses inclusive schooling and the ins and outs of the Individuals with Disabilities Education Act (IDEA).

Kluth addresses the role of the teacher, placing emphasis on the educator’s ability to support inclusive schooling. Another chapter addresses collaboration, describing how all members of an educational team can cooperate to promote an inclusive school.

Kluth provides practical and creative methods for solving some of the challenges that individuals with autism present in an inclusive environment. Solutions for adapting classrooms to support student participation in classwork, as well as school routines and social activities, are provided.

Another excellent chapter addresses literacy and the importance of literacy instruction for students with autism. And another focuses on challenging behavior, emphasizing a positive approach and encouraging environmental and sensory accommodations to promote positive behavior change.

Kluth provides helpful hints from veteran teachers and individuals with autism throughout this vibrant book. You’re going to love this kid provides a positive view of how inclusive education can be achieved for learners with autism. The mixture of practical solutions with inspiring real-life stories is an excellent resource.


Easter Seals’ P.L.A.Y. Project and Carson’s story

I was recently in Ann Arbor, Michigan with my colleague Julie Dorcey from Easter Seals Michigan. We were there to meet with Richard Solomon, M.D. to prepare for an upcoming presentation. Easter Seals staff and Dr. Solomon will be giving the presentation on the P.L.A.Y. Project (Play and Language for Autistic Youngsters) at a session on July 12 at the Autism Society of America’s (ASA) National Conference in Phoenix, Arizona.

The P.L.A.Y. Project is an autism intervention for young children. Dr. Solomon developed this parent-coaching model, designed to be carried out in a family’s home, based on the developmental, individualized, relationship-oriented (DIR) approach of Stanley Greenspan, M.D. Easter Seals provides this intervention in 19 locations across 12 states, including five sites in Michigan.

We got around to talking about some of the children participating in the P.L.A.Y. Project in Michigan — and that’s how I learned about Carson’s story.

Here’s what Carson’s mother says about the P.L.A.Y. Project, and how it has positively affected her child and family:

    “Trying to get into Carson’s world was impossible….

    We worked very hard to provide security and a comfort zone for Carson, and we especially wanted him to express his needs and wants to us.

    We continued to work with Carson, and hoped and prayed so much for the little things we often take for granted with babies and toddlers. Little things (or so we thought) like affection, silliness, acknowledgement, laughter, etc.

    Absolutely nothing we tried would work.

    Then we discovered Dr. Solomon, Easter Seals and the P.L.A.Y. Project.

    It’s because of the P.L.A.Y. Project that we now have a son who is so affectionate and engageable, among other things. I can’t tell you how many times a day — without prompting — Carson says to me, “Mommy, I need you,” or “Mommy, help me,” or “Mommy, tickle me,” or “Mommy, hug me.” It brings tears to my eyes just typing these phrases.

    Carson is truly a happy little boy who has made such tremendous progress with the P.L.A.Y. Project. My husband Rob and I will forever be grateful to Dr. Solomon and his P.L.A.Y. Project and Easter Seals Michigan.

    Each day brings us so many heartwarming surprises.”

It’s great to hear stories from people who have benefited from Easter Seals’ services! Julie and I will be back in July to blog about our presentation at the ASA’s National Conference.


Media and myths

Recently I saw this article on the ABC News Web site titled “Media Coverage May Perpetuate Autism Myths.” Most of the article is related to the continuing discussions over the role of vaccinations in the cause of autism.

Although the article briefly draws attention to the benefits of treatment, they’re not yet making that next critical connection — to the importance of funding for treatments and further research into effective, evidence-based interventions.

I see that Congress recently funded the Combating Autism Act. It’s my sincerest hope that the federal government finally acknowledges the fact that autism is treatable and that millions of people need treatment. This can be done by spending some of those research dollars on studying current treatment options to determine which ones really are effective.


Adults and autism: society needs to step up

This opinion piece in the San Francisco Chronicle details the concerns shared by many parents of children with autism and other disabilities. What happens when these children grow up … and grow out of government-provided support?

In 1989, I began my career teaching high school at Spectrum Center for Educational and Behavioral Development — now known as Spectrum Center. It was my job to educate young men and women with autism age 16 to 21. I perceived my job to be preparing my students to lead productive meaningful lives upon graduation. I thought my students would emerge from high school with the skills I had encouraged them to learn and the support in place to have a job, live with the greatest degree of independence possible, and enjoy their adult lives. My students had significant challenges including difficulty communicating, aggression and self-injury. They required support to ensure participation in daily life activities — clearly these supports would be in place for them to achieve this meaningful life upon graduation from Spectrum Center.

I was sadly mistaken.

Support for adults with autism is abysmal. The good news is that I was in California where the Lanterman Developmental Disabilities Services Act entitles adults to some support. Most states have no entitlement services — there is no guarantee that adults with significant developmental disabilities will receive support after age 21 for the majority of individuals in the United States.

The expectations from the social service agencies were not that my students would lead meaningful lives. Lives that would include supported employment opportunities to learn and develop new skills, recreational opportunities and supported living. The expectation was that my students would be cared for somewhere — sometimes in a large congregate facility … sometimes in a large day program where the expectation was to sit quietly with groups of 20 or 30 other individuals with developmental disabilities. Sitting quietly was not an area where my students achieved a lot of success. I didn’t deem this to be a great result of my hard work prior to graduation. I’m sure my students with autism were not overjoyed with spending their lives in these facilities either.

I’d like to think that by now, almost 20 years later, our society would have decided that individuals with significant needs should have those needs met through the social service system. Unfortunately, not much has changed since 1989. California still has the Lanterman Act where some services are provided. The rest of the country continues to end entitlement services at age 21 — even for those with the most significant disabilities.

We must take action. Our society must step up and achieve the goal set forth by Hubert H. Humphrey 30 years ago: “The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those in the shadows of life, the sick, the needy and the handicapped.”

Currently in Congress, programs important to Easter Seals and adults with disabilities are slated to having their funding maintained, with no increase for inflation. A few programs, including Vocational Rehabilitation State Grants, are poised to receive only modest increases. Please ask your legislators to make funding for people with disabilities a priority.

Learn more about Easter Seals’ services for adults with autism.


Adults and autism: Our kids might outlive us

When my husband and I visited our son in his group home recently, I couldn’t get over how much he had grown. He’s a healthy boy! Well, really –- a healthy young man. And though many of us who have children with disabilities don’t like to think about it, it’s likely our children will outlive us.

While most people know about wills, few are well-versed in special legal and estate-planning matters when it comes to benefactors who have disabilities. My husband and I set up a special needs trust when our son was still in grade school. Our son will turn 21 this year –- taking a look at that document again is on our “to-do” list … we need to make sure nothing changes now that he’ll be an adult.

With your hands full trying to raise and advocate for your child, it’s hard to find time to prepare for one very likely possibility: a child with autism might outlive both parents.

The National Information Center for Children and Youth with Disabilities, a federally funded clearinghouse in Washington, D.C., offers estate planning advice when a child has a disability.

I found two pieces of advice from their list especially helpful:

  • Find a lawyer who specializes in legal and estate-planning matters for people with disabilities. For referrals, contact a local disabilities group or your local bar association.
  • Ask your lawyer about a “special needs trust” or similar arrangement that enables parents to leave assets for a child’s long-term needs and still preserve the child’s eligibility for valuable government benefits such as Social Security payments, health care, subsidized housing and personal attendant care.

It’s hard to add yet another thing to a “to-do” list, especially when it concerns something as morbid as death! But knowing our son has a special needs trust set up for him gives my husband and me some peace of mind.

Mass Mutual, one of Easter Seals’ national corporate partners, offers additional resources for people with disabilities and their families.


Reflections of a Grandfather on Father’s Day

Marguerite Colston is the Director of Communication for the Autism Society of America and the mother of Camden, a 7-year old boy with autism. Margi is one of our new friends from the Autism Society of America and has been generous with her time, advice and wonderful stories of Camden. When talking of Father’s Day, she immediately offered that her father, Camden’s grandfather, would love to share his thoughts about being a grandfather.
— Ellen Harrington-Kane

Reflections of a Grandfather on Father’s Day

By Bill Kirst

My grandson, Camden, is 7 years old and has Autism. But you know, he doesn’t even know it. I call him affectionately the “little guy.” My wife and I live in a condo on the 5th floor, and when he visits us, he always sees the trip up and down the elevator as an adventure. When he arrives on our floor and I open the door, he accelerates past us and goes into his routine — bouncing on the sofa, turning over the toy box and running back and forth down the long hall to the bedroom. He smiles at me like the cartoon character Stitch as if to say, “Grandpa, see if you can catch me.”

On special occasions such as Father’s Day, my daughter always dresses him in a classy outfit — such as corduroy pants, a button down shirt and a white sweater vest. Wow, does he look like Prince Charming — and he is!

On each and every day, but especially on special occasions like Father’s Day, I reflect on our family situation and pray for him and his mother — my daughter. While he will not grow up to play little league or later serve his country — as a soldier, sailor, airman or Marine, I am blessed to have him as my grandson. He is and will always remain my hero and my “little guy”.

And some day I hope he will have his own condo — so when the family visits him, they will enjoy the ride up and down HIS elevator!


The boys of summer

Jeff Sell is the Director of Chapters and Membership of the Autism Society of America, as well as a former board member — and the father of twin boys with autism. I first met Jeff at a conference on services for adults with autism where he was a speaker. Since then, he has been another great friend of Easter Seals as we help Easter Seals affiliates connect with their local Autism Society chapters. Jeff’s stories of his experiences with his boys have been educational and eye-opening — and always shared with an optimism and, often, a little humor.
— Ellen Harrington-Kane

The Boys of Summer

by Jeff Sell

When Ben and Joe were born it was one of the happiest days of my life. I’d always dreamed of having a son, but on that day my wife, Paula, and I were blessed with two precious sons.

I stopped by a sporting goods store that day and bought two small baseball gloves for my new little shortstop and second baseman. Perhaps my behavior was a bit premature, but I had already planned out their future. They’d play for the Yankees and turn a double play in under 2.4 seconds.

Little did we know how significantly our lives would change just two and a half years later when the boys were diagnosed with autism.

When Ben was around nine months old, Paula noticed him acting differently and that he’d stopped responding to her voice. Over the next year, we came to realize the severity of Ben’s problems. Ben is a “profoundly” autistic young boy and possesses some of the classic characteristics that accompany autism: to date, he has never spoken a word, we have experienced gut-wrenching moments of him displaying self-injurious behaviors, and we are still trying to toilet train him at age 13. However, I have no doubt that he is smarter than me!

Joe continued to develop at a normal pace and was meeting all of the expected milestones. Then, around the age of 24 months, he too began slipping away. Today, Joe is able to speak but has significant language deficits and is considered to be on the “higher end” of the autism spectrum.

Paula and I handled the autism diagnoses differently. She was much more accepting. She pushed ahead and dealt with the news head-on. I felt sorry for myself and for what I perceived to be the loss of so many dreams that I’d concocted for my sons. I couldn’t understand what had happened to my twin boys. Why was this happening? How could I “fix” my sons? Would they ever play baseball or engage in the “normal” activities young boys enjoy? Typical Dad thoughts, I suppose.

I soon learned, however, to focus on the positive, rather than the negative. Ben and Joe have two sisters, Natalie and Gracie. There are plenty of stressful times involved with raising four children, two of whom have autism, but the glass is always half-full, not half-empty.

A Mother’s Care
Paula’s job is certainly the toughest job by far. She’s a teacher, cook, scheduler, chauffeur, nurse, doctor and an advocate — and she excels in each role. She’s also actively involved in the boys’ individualized school programs, working closely with their teachers. There’s never a dull moment in her day.

The boys’ needs vary because they are on opposite ends of the spectrum. Because of this, Paula and I share a unique insight into the issues that often divide our autism community (i.e. the most effective interventions). We notice that what may work for Joe may not work for Ben, be it a biomedical treatment or behavioral intervention. Their school programs are very different as well. With confidence, we can say we’ve seen firsthand the array of issues families of children with autism face.

A Father’s Voice
I am on a never-ending quest to find solutions to some of the global problems facing our autism community and will speak out on nearly every important issue. The boys were the reason I became involved with the Autism Society of America, where I served on the board for nearly 5 years, was elected as the 1st Vice President for the Society and was also the Government Relations Committee Chairman. Now, I’m a “staffer” for ASA and am one of the lucky ones that can say, “I love my job.”

My wife and I are indeed blessed. Our oldest daughter Natalie is a healthy 14-year-old. Ben and Joe are now 13 and Gracie is a 9-year-old fireball. We can’t think of a greater joy than the love we see flowing though the roots of our family. Also, we have been gifted with friendships from so many talented and dedicated giants in the autism world.

The boys continue to add to the dynamics of our family and make it “extra-special” with their unique personalities and needs. They impact our individual character and remind us to appreciate family and friends most of all, rather than money or material possessions.

They may not be headed for the Big Leagues as I had once planned, but the joy I experience from coaching Ben and Joe’s “special” little league team far exceeds anything that I could have ever imagined.

I am one lucky Dad.

Happy Father’s Day!


The Greatest Gift

Mike Barbour is an Assistant Professor of Nursing at Florida State University. He loves to travel, has a love for theatre and is the father of two. I met Mike in his role as Dad — I’m friends and colleagues with his daughter Amy. I had the pleasure of sharing time and space with Mike when he and Amy’s brother Ian came to visit her home in Hawaii. What a pleasure it was to see this family in action during their visit. Ian is celebrated by this family for the man that he is — funny, engaging, energetic and a person with autism. Mike shines in his role as Dad with both Ian and Amy.
— Patricia Wright

The Greatest Gift

My son Ian is 21 years old. With Father’s Day fast approaching, I reflect on how life with this wonderful boy has affected me. Ian lives with autism and Fragile X Syndrome. His IQ is extremely low, so his understanding of Father’s Day as a holiday is quite limited. In fact, excessive talk, planning, etc., about special days makes him extremely nervous. I choose to keep it “low key.”

When Ian came into my life, I was in denial about his condition. As a registered nurse, I was trying (pretending) to champion the way for meeting his needs. As a professional, I found myself to be totally inadequate in securing the resources he desperately needed. My wife proved her strength during this time as she opened doors for early intervention opportunities. In addition, Ian was blessed with a 7-year-old sister, Amy, who adored him just because he was her younger brother. Ian’s strong bond with Amy helped him to develop and achieve milestones as much as anything else we provided for him. The bond they had was truly amazing! Amy later chose to make special education her life’s work. She completed graduate school at Florida State University and now works in a school on the island of Oahu.

In the early years, I sought various sources to help me cope and learn. One of the best things I found was an essay written by Jim Sinclair. The essay, entitled, “Don’t Mourn for Us” was published in “Our Voice,” the newsletter of Autism Network International, in 1993. I just needed to accept Ian for who he was, and Jim’s poignant writing allowed me to view the world differently through Ian’s eyes. As Jim collectively described those living in the world of autism, “We are alive. We are real. And we’re here waiting for you.” Reading Jim’s essay, the works of Temple Grandin, and others, helped me rethink my life. This newly-discovered consciousness permitted me to really explore the world of such a remarkable, funny, loving, unique, and interesting young man who was a part of me. The journey has completely changed and enhanced my life.

Ian has given me the perspective to focus on what matters most — every day and every minute. Through him, I have been able to polish my relationships with other people, become quite a good cook, feel music with passion, raise beautiful plants, and relax. Through the years, we have done so many things together. During some of our excursions and travels, I discovered that in addition to his love for sports, he also enjoyed the opera. I remember watching a tear roll down his cheek when he heard a baritone sing his favorite piece, Nessun Dorma (the finale from the Puccini opera, Turandot). I’m sure he thought the piece was performed solely for him. Ian has shown me that, sometimes when the sky is gray, we can all feel better by eating a cheeseburger and just “chilling out.” He is filled with joy and it is highly contagious!

This year, Father’s Day is very special because Ian graduated from high school. He will still spend the upcoming year in the school system working on possible job placement. What will happen after that is uncertain, but he has developed and improved his skills tremendously in the past year, so I feel very positive about his potential. For the actual Father’s Day holiday, I will spend the weekend with him and just enjoy every minute. I’ve been able to achieve and exceed many goals in my life. But without question, being “Dadzo” to Ian is the greatest Father’s Day gift any man could ever receive.