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“Honey, an ABC News Film Crew is Coming on Monday …”

August 18, 2010 14 comments

This post is written by Liz Bell, mother of Tyler Bell, who was recently featured in an ABC World News Today segment on preparing adolescents with autism for adulthood. Liz is married to Peter Bell, Autism Speaks Executive Vice President of Programs and Services.  They have two other children, Derek and Avery. Liz is a member of the Autism Speaks Family Services Committee and was the primary author of the School Community Tool Kit. In addition, she serves on the Parent Advisory Committee for the Autism Speaks Transition Tool Kit which is under development and scheduled to be launched this fall. Liz is also a representative on the New Jersey Governor’s Council for Medical Research and Treatment for Autism.

Great, we might share the intense teaching and planning required in making the future of a young man with autism a little less uncertain. We can highlight the variable needs of this growing tide of soon-to-be adults with autism.

But “yikes!” How will my 17-year-old son behave in front of complete strangers with a camera in his face all day? What if this complicated message gets garbled, highlighting the challenges but not the gifts, the needs but not the opportunities?

Thankfully, Tyler greeted that camera with a grin on his face, and followed the flow of a familiar daily schedule in his hard working, innocent way. The ABC team turned eight hours of filming into a three-minute segment that helps to profile the needs of young people like Tyler, and hopefully initiates consideration of their place in the world. Now online, the story has sparked a conversation, which is a great thing.

But we need to keep talking. Some online comments outline the variable needs of the autism population – from college graduates who have trouble keeping a job to complex children with no language and few functional skills. We need options for all individuals on this broad spectrum. Other comments offer traditional ‘solutions.’ He can get Medicaid, sign up for get SSI, set up a special needs trust. True, these programs may provide some money, until it runs out, but how do you maximize its ability to provide a meaningful life, to establish supports that will take over once we are gone? You can place him in a sheltered workshop or a group home. Perhaps an option for the handful of individuals for whom there is space and funding, but this old model of isolated care won’t accommodate all of our kids…or be what they want. And that is the part of the conversation that we really need to move forward. How do we create the systems, opportunities and community mindset that will allow all individuals with autism the right to be safe, but also engaged, fulfilled and happy?

During that day of filming, while the rest of us were self conscious, for Tyler the camera was superfluous. But the cameraman was not, quickly noticing that, despite how hard it clearly is for Tyler to learn, he exhibits pride in accomplishment. For him, competence breeds confidence, so we teach him skills that make him feel useful and valued. We strive to fulfill his needs for humor, exercise, beauty, and joy. We want to develop a future that will allow Tyler to grow, not just to be taken care of, and to flourish.

Visioning this is a lot of responsibility for a parent, so we employed group brainstorming in a MAPS session, expertly facilitated by Dave Hasbury of Neighbours, Inc., where we explored Tyler’s strengths, likes, and possible opportunities, to keep us working in what we hope to be the right direction. We are heartened by a team of people who now have a shared perspective of where he might go.

But it is still mostly up to us to make it happen. We learn as we go. We build on strengths and we layer on, tiny step by tiny step, experiences and skills that help to create more independence, more joy. We immerse Tyler in the world and build a community that better understands him. We look to what motivates Tyler, and find ways to use his gifts to provide meaningful contributions to society and a sense of belonging. We reach out for help.

Last year, we asked the friendly owners of our local Rita’s Water Ice store if Tyler might have a volunteer job. We explained that job sampling is a big factor in strategizing for Tyler’s future. Since they had already opened their hearts to Tyler as a frequent customer, they gave him a Rita’s hat and the chance for us to work with him, as he worked for them. This year, it’s a paid job – just an hour or so a week, but an opportunity to punch a clock, have a boss and be ‘professional.’ Does he do the same work as the other teenagers there? No, but they value his smile, the fact that he joins them in dancing when they are so moved, and that he doesn’t pull out his phone to text in the middle of his shift. Yes, these are gifts, as is the perspective of Tyler’s Rita’s bosses, who recognize and celebrate his contributions.

And so Tyler earns a paycheck, the most important predictor of paid work after graduation. But he doesn’t work for that – it’s his favorite Cotton Candy water ice that compensates him for a job well done. And his pride.

After the filming, the rest of our family decided that we aren’t cut out for reality TV – life is complicated enough without having to turn off a mic to use the bathroom. But we would like to continue to be part of this conversation, in visioning meaningful lives for all families living with autism. After all, our children have a right to an amazing future.

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Tune In – ABC World News Tonight

August 16, 2010 8 comments

In a story scheduled to air tonight, ABC World News Tonight with Diane Sawyer will feature Autism Speaks Executive Vice President of Programs and Services Peter Bell and his family in a segment on preparing adolescents with autism for life as adults. ABC recently spent the day following Peter and his wife Liz at home as they build a transition program for their 17 -year-old son Tyler, who has autism. The segment will highlight the challenges many families face in preparing their children for adulthood when educational entitlements go away and services are limited and opportunities are few. For more information on what Autism Speaks and other organizations are doing to improve the outlook for adults with autism, please visit Advancing Future for Adults with Autism.

Click here to find the viewing time in your area.

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In Their Own Words – A Tale of Two Cities: Trials and Tribulations

August 5, 2010 4 comments

This “In Their Own Words” essay is written by Kate Marts, an adult who has Asperger Syndrome.

Living with Asperger Syndrome and peripheral neuropathy isn’t easy; however, I somehow naturally deal with it. When I was eight years old, I was diagnosed with acute lymphocytic leukemia (ALL). At that time, “Asperger Syndrome” was not even translated into English; as a result my diagnosis was ADHD. Post treatment, I was the social kid who was a bit awkward functioning wise who had a love for people. I was an innocent 10 year old just like every other kid; however the fact that I had ALL would back me up in life time and time again. How my life would play out the next 20 years, no one could ever fathom.

I found out what it’s like to be a fighter at a young age. I didn’t like treatment but I understood it was keeping me alive. The chemotherapy left me with lasting side effects later in life. By age 10, I was a full blown fighter. More so than when I was diagnosed. I had fought two years of treatment, and stares from other kids; I attempted to remain a member of my sports teams (softball and tennis), and changed schools from public to private. I also became impulsive and was a walking chatterbox. I was so hyper I don’t know how my teachers managed to keep me in my desk. I look back and it seems like I was born to get knocked around in the ring.

I spent most of my childhood playing in the neighborhood, chasing bugs and snakes, and hitting home runs. One could never know what I had been through. Not even the savviest doctors throughout my life could pick up on any lasting effects. I rolled through junior high and high school still not letting an ounce of what happened in my childhood faze me, despite the fact that I had very few friends who were loyal to me. After junior high, we moved to eastern Nassau County, Long Island and shortly after, more “social” symptoms started to show. I became more awkward and random, in addition to the fact I just didn’t quite get how to socialize with teenagers. To make matters more difficult, my motor skills started to deteriorate, thus I forgot how to play sports. Sports kept me out of trouble. I hung out with the mischievous kids who were your typical 90′s teens. We got into trouble but never anything significant. When the millennium came and it was time for me to graduate high school, I wasn’t even excited.

Years passed after high school. Life had completely changed. My social symptoms were getting worse and I was beginning to get sensory symptoms that would paralyze me. I had a million bad habits to ease the sensory issues and restlessness. All the while, I had no idea what was going on. I was unable to finish my classes and subsequently had to fold my endeavors in college. I returned home to Long Island after spending a few years in Providence. I spent some time working at the Huntington Townhouse before landing a job as a CSR in an insurance agency. It was my lucky break. I learned how to use the traits I had from having Asperger Syndrome to my advantage. High attention to detail was very important in the type of position I held. Sadly, I was only able to work there for a year due to my father’s retirement. New York was too expensive to live on my own; against my desires I moved to Georgia for a bit until I finally decided to return to New York a few months later.

My job, a CSR in a small insurance agency, lasted six months. The stock and housing markets crashed, both of which my industry depended on. I searched for a new job but ultimately failed. My symptoms from Asperger Syndrome were worsening, in addition to the fact that I started getting electric shocks. My whole body was attacking me and I couldn’t communicate to anyone what was wrong. I landed in a hospital for two weeks with exhaustion, and ultimately moved back to Georgia upon discharge. I lived on for another year. I finally got a “break” – one of my legs I had broken in New York the year before suddenly became paralyzed. I had a strange case with spasticity and tremors in addition to everything else. As a result I had to be patient. After two years of social symptoms accompanied with sensory symptoms and neuropathic pain, I finally had answers I had been searching for, for so long. That November I was diagnosed with Asperger Syndrome. In addition to the fact, I was diagnosed with peripheral neuropathy a year to the date my leg became paralyzed.

I’m fortunate enough that the fighter in me never left; she just became dormant in a disease that I nearly lost my life to. I even learned a few things along the way while living in New York. The first thing I learned was from “A Bronx Tale” – “The saddest thing in the world is wasted talent.” The next thing I picked up is the tenacity that New Yorkers’ have. We never give up and we give everything our all. Sounds like a famous New Yorker who just passed recently, George Steinbrenner. The third thing I learned, from a former boss,was to be realistic. The final thing I naturally picked up on – everything happens for a rhyme or reason and often things fall into place.

I realize now a combination of a few things kept me alive, my trials in New York and my tribulations in Atlanta. With that, my personality kept me going all these years. Today, I am far from the person I was two years ago. I could barely keep my head up straight and was going through daily episodes. I take a cocktail of meds that relax my muscles for my peripheral neuropathy.  With hard work I was able to reverse most of the symptoms from both conditions.

I still have more challenges than most to overcome; however, I am proud to say I am a tale of two cities.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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“A Regular Guy: Growing Up With Autism” – An Adult with Autism’s Take

August 5, 2010 1 comment

Two Autism Speaks employees, Ali Dyer and Kerry Magro, recently read Laura Shumaker’s book, “A Regular Guy: Growing up with Autism.” Each wrote a response to the book, unique to his/her relationship with autism. Ali has an adult brother with autism; Kerry, an adult with autism, is a rising senior at Seton Hall University, majoring in Sports Management. Below is Kerry’s response to the book.

This week I had the pleasure of reading Laura Shumaker’s book “A Regular Guy: Growing Up with Autism.” The book gives her perspective about her son Matthew’s journey from early childhood into adulthood with autism.

Before going into the book, I just wanted to say I admire what Laura has been doing to help families with children on the spectrum. I first learned about Laura’s book after she commented about one of my earlier blogs about the Autism Speaks 400 race. It was really great to see that all of this was able to come together.

The best way to describe the book would be a rollercoaster of good times and “learning” times for The Shumaker family. The one main thing that is clear, though, is the loving bond of a mother and family doing everything they can to make sure their son grows up to be okay. Whether it is early on where she is desperately looking for that special “Miracle Cure” or when Matthew gets older and it’s more about accepting him as who he is. This book gives you the whole insight to a mother’s struggle everyday with a child with autism.

Many parents look for answers and Laura’s book is sure to connect with parents with children on the spectrum as it goes through different diagnoses of ASD, school placement, family life, money complications, stress levels, babysitting options, and unforeseen struggles that come often come out of nowhere.

Being diagnosed with autism, I gained a great respect for different individuals with ASD from reading this book. As a young adult on the spectrum it makes me want to learn more about how my early childhood compares to Matthew’s.  It also made me continue to understand that no one diagnosis is the same. Every diagnosis has a different rarity from individual to individual. There are thousands of treatments, yet not one cure.

What we can take from this book in the end, however, is that no one is alone and there is always someone to be there for you – whether it is Autism Speaks’ Family Services, an autism helpline, or even a brilliant author like Laura. Growing up with autism should be an experience of understanding and learning.

(And hey, no one is really “regular” anyway, right?)

Did you read Ali’s post yesterday? If you missed it, you can check it out here.


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The End of the IEP and the Beginning of “Reasonable Accommodations”

July 25, 2010 15 comments

This guest post is by Autism Speaks staffer Kerry Magro.  Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events. It is an exciting and collaborative way for students to raise funds and awareness for Autism Speaks, while supporting their local autism communities.

In June 2007, I graduated from high school. It was an amazing time for me. The majority of my classmates and I were off to great new beginnings. My new beginning began at Seton Hall University. “This is going to be great!” I thought to myself on many occasions before the first day of classes.

Before this day happened however all new incoming freshman had to attend a summer “Orientation Period.” During this period we would have the chance to spend the night in the freshman dorms, receive our laptops and also get to meet several faculty members at the school. In addition to this, I had one additional separate meeting that most of the other freshman didn’t – an accommodation meeting with The Director of Disability Support Services at SHU.  This is when the ball dropped for me.

During the meeting I learned many intriguing and frightening things about how college was going to be a huge difference from high school; the main difference for me was going to be “The IEP.” When I asked what the difference would be, I was told the difference was I would not have one. I can’t believe I was that oblivious that this was going to happen.  Later, I learned that under the Individuals with Disabilities Education Act (IDEA) the IEP only exists K-12th grade. At the college door you get a Section 504 accommodations plan.

In college, you only receive “reasonable accommodations” to help make the classes accessible to those specific students with disabilities. The bottom line: there is no plan for you. The only way to receive what you need is by being independent and advocating for your needs. But what does anyone need? If you are a freshman and have autism how do you explain what you need?

At times, this led to many distractions that never would have occurred when I was younger. Sometimes I thought it was unfair. I had to advocate for my own single room in the dorms due to my social complications, extended time on tests for my reading comprehension, a note taker for my classes due to my lack of motor skills and many other complications. For someone trying to fit in it seemed like it was designed to make you stand out like a sore thumb. It even seemed as if as soon as I accomplished one of these tasks, the next semester would begin and it would start all over again for my new courses which required different accommodations.

When you add this to managing a full course load, trying to socialize with your  fellow peers, along with being involved in extra-curricular activities, it can sometimes feels like you are drowning. I mean, “reasonable accommodations” are supposed to help level the playing field, not hinder you in any way. There isn’t a “reasonable accommodation” for that.

Although getting accommodations sometimes was daunting, I was still able to get by and will be going through the same process again with Disability Support Services come this September in my senior year at Seton Hall. For several semesters now I sit up front and tape most of my classes and download the recordings onto my computer, instead of utilizing a note taker. Never would have thought of that freshman year. For those reading who are younger and not yet in college, my advice is to sit in on as many IEP meetings as you can. Learn and ask as many questions as possible.  The letters after your diagnosis don’t tell you if you need extended time or a note taker, but knowing if you are a visual or auditory learner may. Within this I would also strongly consider letting your parents be involved in some of your early decision making, especially when it includes freshman year accommodations. Independence is not grown over night and we all need that added voice sometimes to make sure we are level-headed and knowing exactly what we are getting ourselves into.

As many say early intervention is the key once first diagnosed, early intervention for those on the spectrum in college (and high school for that matter as well) is the key to ultimate success. What I’ve noticed about autism over the years is that it’s not a weakness unless you let it become one. Don’t let it hinder you. Let the advantages of who you are and what you have to offer be your ability to make it at the college level; just always know what your weaknesses are so you can be ready for whatever is to come next!

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In Their Own Words – What Not to Wear, Autism Style

July 20, 2010 45 comments

This “In Their Own Words” essay is by Laura Shumaker. Laura is the author of “A REGULAR GUY: GROWING UP WITH AUTISM.” Join the discussion about her book on Facebook.

It was 103 degrees, the hottest July 3 on record for our community in Northern California. My son Matthew, who is 24 years old and has autism, was getting ready to go the local saloon with his younger brother Andy to sing karaoke, one of his favorite activities.

“I’m ready,” he said, and as I turned to say goodbye, Matthew stood before me in a long sleeve winter wool plaid shirt, khaki pants and dress shoes.

To top off the look, he had cut his bangs too short and tried to hide the botch job with a comb over. He had patches of toilet paper soaked in blood all over his face from shaving.

He was beaming.

“Matthew,” I said, “you really should change into something cooler. It’s really hot … ”

“I look good!” he argued.  “”I’ve been planning on wearing these clothes all week!”

He did look pretty good, at least better than his standard shorts, t-shirt, dark socks and sandals.

Andy shrugged with resignation in the back ground, but insisted that Matthew clean up the shaving cuts before they left.

I asked parents on my  Facebook page to tell me which battles they’ve given up fighting. Most, as you can imagine, had a hard time picking just one.

I have struggled for years over Matthew’s clothing choices and grooming routine. Thankfully, he’s embraced the idea of the importance of physical hygiene (though a little obsessed with a close shave) but the clothing battle is one I’d given up on. As Matthew walked out the door that night, it occurred to me that it was time to help him work on his image. He was, after all, looking to meet some nice girls. He was going to need all the help he could get. The challenge would be finding a way to get the message across without lecturing him.

An idea came to me.

I got the Halloween box out of the attic and fished out some cheap wigs that we’d collected over the years. I convinced Andy to help me put together some “regular” outfits and some oddball outfits enhanced by a Sony Bono mullet and the Morticia wig.

“We’ll make it a game!” I told Andy, “We’ll ask him to pick the outfit that looks the craziest and the one that looks the most regular. “

“You realize this is going to backfire,” said Andy, “and that he’ll want to start wearing the wigs around.”

And of course that is exactly what happened.

So I’m backing off again. You have to hand it to me for trying. The good news is that Matthew and his social skills counselor are going people watching today at the mall. (Her idea, not mine)

Maybe he’ll get some fashion tips there.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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The Day Joey Testified Before Congress

July 19, 2010 30 comments

This is a guest post by Sharon Rosenbloom. Sharon is a speech and language Pathologist, autism consultant, and author of the award winning book: Souls: Beneath and Beyond Autism. She is the mother of Joey Rosenbloom, a 22 year old with autism. Sharon and Joey, along with their family members Raia and Bob, are passionate advocates for individuals living with autism – especially those with limited access to communication.

On July 15, my son Joey climbed the steps of the Russell Senate Office Building on Capitol Hill, Washington, D.C. Watching him, it struck me that for a person with autism; this was not so much “The Hill” as yet another mountain to be climbed. To the casual observer, those steps looked deceptively easy.  But for Joey, a 22-year-old man with autism, the journey that brought him to Washington, D.C. with the honor of testifying as part of the Advancing Futures for Adults with Autism Congressional Briefing had been a long and arduous one. This was never more evident than as he ascended those steps. Only those of us who live in the world of autism can imagine the amount of effort it took for Joey to simply wear a suit, let alone develop the skills to access a voice, manage crippling anxiety and transcend the abyss from autism to the steps of this historical government building.

As both Joey’s anchor and rudder, I begged my eyes to stay dry and my heart to stop racing, in order to be the calm presence he needed as he viewed this audience of influence seated before him in The Kennedy Caucus Room. On every level of our senses, each of us at that table knew the importance of this unprecedented event: here sat the faces of adults with autism, each one representing a story of relentless effort and unwavering hope. Finally, beyond the statistics and symptoms, those given the label of autism were truly going to speak. I knew all too well that each panelist with autism had spent their entire life being judged for what the textbooks called “idiosyncratic” behaviors. Yet on this day, these remarkable individuals were being given an opportunity to represent the truth about what adults living with autism have the potential to be, and how the ceaseless love and energy poured onto them yielded extraordinary returns on that investment. As Joey fidgeted with the microphone, I was filled with profound respect for him that dropped a blanket of calm over the sharp edges of my apprehension. Overwhelmed by emotion, I took Joey’s hand, and he let me hold it. I found myself replacing that familiar anticipation of stinging public scrutiny with a prayer that those watching might see each panelist with the eyes of their hearts, listen with their minds wide open and ready themselves for paradigms to shift.

As the last thought was shared and the audience rose to their feet, filling the room with applause, I caught a glimpse of something I had never seen: pride, spreading like a smile across my son’s face. It was then I knew I had witnessed a milestone event which had lit a small candle of hope for Joey, and for all those labeled with autism: that by the miracle of human connection they might now be viewed, if for only those brief moments, through a truer lens.

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