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In Their Own Words – Public vs. Private School Debate: Do the Math

September 24, 2010 33 comments

This “In Their Own Words,” is written by Glen Finland. She is the author of “Next Stop,” a memoir about raising her autistic son to adulthood and learning to let go.

Last year my autistic adult son David wrapped up twenty years of education, ten of them spent in private school, the other half in public school. And, hindsight being 20-20, here’s what educating a high functioning autistic son like David taught me. It’s simple mathematics: Send your kid to public school and keep your money in your wallet. You’re going to need it for what happens next—because what happens next is the rest of his life.

Parents of a young adult with special needs face an unending management of another person’s life over the decades ahead: housing, transportation, insurance, clothing, food, job coaching, medical expenses, and, of course, quality of life expenses like entertainment, vacations, and even pets. Think of how far the tuition fee of a single year of private school could go toward taking care of some of these expenses down the road. Now multiply that figure by twenty. The numbers will tell you if it’s a wise investment.

In public school with a good IEP, the services are free. They should be; you’ve already paid for them with your taxes. Your child will also learn in less of an isolated bubble—and yes—be forced to toughen up a bit by facing the real world struggles of life in the quicker moving mainstream. Don’t expect runaway success there. In fact, be prepared for regular bouts of failure. But no matter how painful the lesson, down the road your child will be that much better equipped for the the daily slights he’s sure to incur—those careless, casual assaults on his spirit that he will face simply for being differently abled.

For example, it has come to my attention that my 23-year old son is now a heavy tipper. These days he drives a 54-mile roundtrip each day to his job as a custodian at a federal office building outside the nation’s capital. He’s a good driver, but when he stops off for coffee along the way, he might pull out a $20 bill to pay for a single cup of java, then walk away. His generosity is not because he’s got such deep pockets; it’s because he wants to avoid the impossible math involved in the exchange and, even more, the eye contact that goes along with it. Whose pocket that leftover chunk of change ends up in is totally dependent upon the scruples of the particular cashier. It took me months to figure out where all his change was going and how to remedy the situation with a few five dollar bills, but these are the kind of real world surprises that continue to sneak up on us every day. This reminds me to be careful about who I allow to “keep the change” when it comes to planning ahead for my son’s future.

You know, it’s true what mothers have always said about the time with our children: “The days go by like years, and the years go by like days.” So go ahead and let your child ride the big yellow public school bus for now. It’ll do him no harm. And that way he can count on your really being there for him once school lets out for good.

“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.

The Year that Jack Bauer Saved our Summer

September 11, 2010 3 comments

This guest post 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 July 30, 2006, and the first day of relief from a record breaking heat wave in the San Francisco Bay Area. I stood anxiously by the escalator at the Oakland Airport waiting for my twenty-year-old son Matthew to arrive from Pennsylvania. Matthew is autistic and had been attending a special residential school there since he was 15.

He would be home for a five-week break. Worried that he would be lonely and adrift as in summers past, I hired a companion who worked at his school to fly Matthew home and stay with us for three weeks.

His name was Kim, a twenty-five-year old from South Korea who had joined the staff of Matthew’s school just a year earlier. I had heard good things about Kim, but was nervous because our communication through phone and email, though cheerful, had been awkward. His English was difficult to understand, and I wasn’t sure he understood the notion of “friend to hang out with” rather than “policeman”. Matthew was painfully aware of his disability and need for support, but despite his innate social ineptitude, he craved independence and friendship, and wanted to be viewed by the world as a regular twenty-year-old.

In the past when I had hired “friends” for Matthew, I’d had the benefit of meeting them first in person to see if the chemistry was right. When Kim and Matthew came into view at the top of the escalator, I saw no chemistry. My son, wearing a t-shirt, shorts and sandals, rushed ahead of his smiling companion.

“I’m not with him,” said Matthew, frowning in earnest. “I don’t need a babysitter.”

“He’s not a babysitter,” I said, shaking hands with the stranger in front of me, “Kim is our friend!” Matthew rushed ahead to the baggage claim. “Did you have a nice flight?” I asked Kim, who shrugged and smiled.

It’s gonna be a long three weeks.

The first few days of the visit Matthew avoided Kim, and my husband and I and our other two teenage sons tried manically to make Kim feel useful and at home, talking to him, struggling to understand his English, inviting him for walks and meals, and asking him to help with the dishes. By the third day, I was exhausted from smiling, talking, and suggesting activities for Matthew and Kim that fell flat.

“Do you want to go to the movies with Kim, Matthew?”

“No”

“How about a hike?”

“No hikes.”

Feeling like a prisoner in my own home, I left Matthew and Kim alone together while I took our four-month-old Labrador puppy, Cali, for a walk. When I returned, there was a police car in the driveway.

“He’s stalking me!” Matthew was telling the policewoman who had responded to his 911 call. Kim smiled nervously and paced around, and the officer looked confused. I explained the situation and apologized profusely. She said she thought she’d seen everything till today.

“Look, Matthew,” I sighed, “Kim is our friend. Will you please be nice to him?”

“Probably not,” was his response.

There was no way I could endure this kind of grief for three weeks, and I wondered if I should just pay Matthew’s friend for hire the full amount that I had promised him and put him on a plane back to Pennsylvania. But then I glanced at Kim who was stroking the puppy, and I could see he was a person who smiled even when he was hurt. Somehow I had to make his visit a successful one.

“Matthew has some yard work to do,” I said. “Could you do me a big favor and wear this puppy out?”

Kim nodded eagerly, and the two fled to a walking path around the corner. Later that evening, Kim took Cali for another walk, and came home looking exhilarated. Did we have any movies he could watch on his laptop, he asked? As I was reaching for The Sound of Music, my thirteen year old handed him the first season of “24″, a cult show among teenagers about the dangerous adventures of no-nonsense counter-terrorist agent Jack Bauer. The next morning Kim slept in, and admitted sheepishly that he had been up half the night watching the series.

“That’s OK,” said my thirteen-year-old, “We’re addicted, too!”

By the fifth day of his visit, Kim had settled into a happy routine of dog care and other chores, amiable family dinners and evenings with “24″. On day six, a Saturday, Matthew knocked on Kim’s door, and asked him if he wanted to walk downtown and get some pizza.

“I decided that I might like Kim,” said Matthew when they returned, and I heaved a sigh of relief, grateful that the web of reverse psychology that I had woven out of desperation snagged Matthew. I stopped counting the days until Kim’s departure, as the two bonded over daily walks downtown.

The morning of Kim’s departure, Matthew told him not to be sad-he’d see him in September. But Kim had a hard time saying goodbye to Cali, and knelt down to cuddle her one last time. He was still smiling, but I saw a tear cascade onto the puppy’s shiny coat.

“You are going to miss uncle Kim, aren’t you Cali? Let’s take your picture with him.” As Kim grinned for the camera, I was grateful that the painful scene at the airport three weeks earlier had unfolded so magically. It seemed that by turning our constant focus from our autistic son to the needs of our houseguest, Matthew was free to befriend his friend for hire in his own time and in is own way.

The next morning, an email message from Kim arrived. It remains on our refrigerator along with his picture with Cali.

So much thank you for you, and family, and my niece Cali.
It was a great 3 weeks for me….my best summer in life.
Thanks a lot for giving me such a nice memory.

Kim

Love and Autism: My Progression in Relationships

August 25, 2010 9 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, while supporting their local autism communities.

Ohhh relationships. At the age of 22, I’ve had several relationships throughout my life. I’ve also had several breakups. When I talk to families with children on the spectrum this is usually one of the big subjects, but also one of the most sensitive. How does a child on the spectrum even go about having a relationship while many neurotypicals today, cannot? It’s a difficult road with no clear answer.

Looking back at my experiences, some of my main problems in relationships have been due to “social awkwardness.” This social awkwardness could be attributed to many factors, but for me it was always based on “small talk” and “mind blindness.” With small talk, many times (especially when I was younger) I couldn’t hold a conversation, making any type of interaction awkward in the sense of the silence and long pauses involved. The only way I would be able to keep a conversation going was to change the subject randomly to something that was of interest to me (such as basketball).  This was hard because while I did have friends who play and like basketball, for instance, it’s not something you want to hear about 24/7. How do you make strides without having the capabilities of conversation?

Confidence, as well, became an underlying issue because of these tendencies. These moments, where I wouldn’t have anything to say made people think I was a shy person who wanted to be left by myself (which was never the case). Could you imagine a scenario where you wanted to be talked to, in many cases even loved, and you just didn’t know how to acknowledge it?

Mind blindness, which is typically known as the inability to develop an awareness of what another person is thinking, made for some difficult scenarios for me. The inability to do this, to “put myself in the shoes of another,” limited my understanding of others, and made it difficult to develop anything but basic friendships/relationships. People  in today’s society are are very complex and reading them, not only by a relationship standpoint but to advance in life, whether its through school, employment, etc. is a necessary skill.

At nine, my doctor recommended against mainstreaming me in a public school because she said I would have never understand social cues and worried about me getting beat up.  Granted, I survived those days, a testament to having developed coping mechanisms, splinter skills and/or growing up. The one thing I wish though, looking back, was that I found someone who understood what it was like. Whether it was an intimate relationship or just a friendship, someone who, on the spectrum knows exactly what I’m going through. It’s not the same case as others, where maybe you relate with someone because you both came out of the same background, for example. Being on the spectrum, no one case is the same. Every case is different which means that you would always find something close but not exactly to what you are looking for. Especially on the college level, many students on the spectrum don’t go to college. This is where some of the difficulties lie for those on the spectrum who are having trouble with relationships in college. How do you approach it when you are the minority filled by a majority that may or may not be accepting of who you are?

I leave these questions up for debate but my standpoint on relationships is pretty simple. Whether you are on the spectrum or not, all relationships are hard work. Whether it is within the relationship or not, the best thing you can do for yourself is be who you are and to negate all the negative energy that may come your way. Yes, there is definitely a need to branch out and find what interests you have which can expand the pool of who you may be interested in. Ultimately, we all know the expression; there are many fish in the sea (but not quite as many if you are not looking). This is where relationships begin.

(This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to to this post I can be reached at kerry.magro@autismspeaks.org. Thanks everyone!)

“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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