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Posts Tagged ‘transition’

Back to School – The Conversation Continues!

August 8, 2011 4 comments

This questions comes from Getting Ready for School: Interview with Paula Kluth, Ph.D.

What can parents do to educate “other students” about autism (How to Be a Friend) to help with their child’s transition back to school?

“One of the best ways to educate other learners about peers with unique learning profiles is to build classroom community and teach about differences throughout the year. In the beginning of the year, students might all create “about me” posters, presentations, or books and share them to each other. A student’s autism can be explained as part of these introductions. In talking about a disability in the context of all individual differences, students will see that EVERY learner is unique, not just some! if a student on the spectrum wants to elaborate on his or her specific needs, that learner may be invited to field questions from classmates or to teach a mini-lesson on his or her label, strength, or challenges.

There are also some great pieces of literature that might be appropriate to use in classrooms. For older students, autobiographies of those with autism can serve as tools to discuss the needs of some individuals on the spectrum. For younger learners, books such Ian’s Walk or It’s OK to Be Different (Todd Parr) are nice introductions to the topic. I have just published a new book (with my colleague, Patrick Schwarz) about honoring a student’s fascinations called Predro’s Whale so I have started using that in classrooms as well.”

How have you educated “other students” about autism? What advice would you give other parents on how to accomplish this?

This month’s Community ConnectionsBack to School is aimed at helping families who have a child with autism make a smooth transition back to school. We produce an eNewsletter, a blogs, and a Facebook “Q and A session,” bringing together expert interviews, family experiences and a variety of resources on the topic. Sign up here to receive Community Connections.

Actors Making Connections

A powerful film directed by Emmy Award® winner Janet Grillo, FLY AWAY narrates the story of Jeanne and her autistic teenage daughter, Mandy. Jeanne has cared for Mandy since the day she was born, growing closer every day to a child who is charmingly offbeat one moment and nearly impossible to manage the next. In the dog park, Jeanne encounters Tom, an easygoing and accepting neighbor who sparks a romantic interest, but she finds juggling Mandy’s care and her own career leaves little room for a new man. As the pressures of work and her child’s needs increase, she must decide whether or not to enroll Mandy in a therapeutic residential facility. Over the course of a few weeks, Jeanne is confronted with the most difficult decision a parent can make: to let go, allowing her child to grow, but also grow apart; or to hold on tight and fall together.

Beth Broderick and Ashley Rickards discuss how their off screen friendship and respect created the onscreen intimacy and bond between mother and child.

Here is the theatrical trailor

FLY AWAY’s narration of teenager with autism is relatable for many families. The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.  For more information, visit here.

“FLY AWAY is now available nationally on DVD for sale/rental/streaming, or on VOD.” For info contact http://www.flyawaymovie.com, 10% of proceeds benefit Autism Speaks.

New Video DVD: http://www.newvideo.com/flatiron-film-company/fly-away/

Netflix: http://movies.netflix.com/WiMovie/Fly_Away/70170708?trkid=2361637#height601

iTunes: http://www.iTunes.com/Movies/FlyAway2011

Amazon: http://goo.gl/1uUo7

TimeWarner Video on Demand:http://goo.gl/aykS2



Adults with autism and their families often left without help after high school

February 24, 2011 19 comments

This is a guest blog post by Dr. Paul T. Shattuck. Dr. Shattuck is a national expert on disabilities, specifically autism. He has published a number of articles on the prevalence and course of autism as well as on policies and services for people with autism and their families.


Do the challenges of having an autism spectrum disorder (ASD) and the needs for special supports magically disappear in adolescence? No! But many families are pushed off a cliff when it comes to accessing needed services for their young adults with an ASD.

My team and I used data from a large national survey to look at the use of diagnostic medical services, mental health services, case management, and speech therapy during the first few years after leaving high school. In a report published this month in the Archives of Pediatrics and Adolescent Medicine, we found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management, and 9.1 percent for speech therapy. This compares with higher rates of service use while in high school: 46.2 percent received mental health services, 46.9 percent had medical services, 74.6 percent were getting speech therapy, and 63.6 percent had a case manager.

We also found that 39.1 percent were completely without all four of these essential supportive services. African-American youths and those from poorer households were at much higher risk for this total lack of services.

I was especially troubled by the low rate of accessing speech therapy. Youths with an ASD are especially vulnerable during this period because of their core challenges with communication and social interaction. Succeeding at a job, at school, or in the community depends on being able to communicate with other people. Speech therapy can help with these issues. But many insurance plans and state programs for vocational support or serving adults with developmental disabilities do not reimburse for speech therapy. Building in speech therapy as an eligible expense in adult-serving programs should be an immediate priority for policy improvement.

Why did I ask these questions? Many people who have, or work with, young people who have special needs already know that services drop off after high school. But there are many people and policy makers who have no clue about how dysfunctional these policies are. This study adds hard facts that can be used to educate and raise awareness about how the current system (mal)functions.

The majority of a typical lifespan is spent in adulthood. Yet the majority of what we know about ASDs is based on a lot of research focusing on very young children. I pursued these questions as part of a broader research mission aimed at understanding how to improve life for people with an ASD and their families across the lifespan. Autism Speaks, the Organization for Autism Research, and the National Institute of Mental Health have generously supported this ambitious agenda. I look forward to giving you more updates in the years ahead as we begin to build a stronger evidence base for helping adults with an ASD and their families have brighter futures.

Here is a link to the Autism Speaks Transition Tool Kit, to serve as a guide to assist families on the journey from adolescence to adulthood.

Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.

In Their Own Words – Experience Breeds Ability

February 17, 2011 22 comments

This ‘In Their Own Words’ post is by Susan Senator, a writer, activist, and the mother of three boys. Susan is the author of “Making Peace With Autism,” and “The Autism Mom’s Survival Guide.” Please visit Susan’s website for more of her blog and other resources.

I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat.  Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him.  I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.

We are all really good at shoveling these days.  I pictured handing the shovel to Nat and seeing him push it down and push the snow aside.  No problem. But it used to be.  Such tantrums!  He couldn’t be outside with us.  And if we left him inside, he’d freak out in there, watching us working outside.  The horrible feelings I had, knowing I couldn’t be inside or outside.  There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.

Now he shovels snow willingly and competently.  Yet another skill, another feather in Nat’s cap.  How did this come to be?

We made him do it anyway.  We lived through tantrums.  We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly.  Nat has been exposed to a lot of activities.  It’s as simple — and difficult — as that.  The more Nat experiences, the more he is able to do.  As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places.  It was almost always really, really hard.  We tried a Cape Cod vacation:  terrible.  Each year, not as much.  Stayed with my parents:  it got better.  Switched to the ocean, rather than the bay side and brought boogie boards:  success.  Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it.  Not all of it, but enough.

Challenger T-ball; failed.  A year later we tried Special Olympics gymnastics: success.  But bumpy success.  Nat sometimes slapped people or had tantrums or spaced out.  We stuck with it.  Or rather, Ned did.  I’m the coward of the two of us.  I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch.  I think that even if you are a single parent, you should find a way to have a second person around sometimes.

Vacuuming.  Food shopping.  Parties.  Shoveling.  We took Nat places.  Even for abbreviated visits and outings.  Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire.  Stored data.  Information he could draw on for the next time.  If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter.  And that is the most fertile ground there is.

“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.

“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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