Erie, Pa: On the Cutting Edge of Research in Autism

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I opened my Autism Spectrum Quarterly journal to see an article in the research news

Yes, this is a topic similar to the research that we started conducting at the Barber National Institute in April 2012 with Dr. Josh Diehl and the University of Notre Dame. The collaboration is a project to evaluate the effectiveness of using a robot in clinical therapy for treatment of children with autism. The study focuses on the development of communication and social skills. desk titled “Humanoid Robot Helps Train Children with Autism.”

The journal article discusses the research at Vanderbilt University, which is also using the Nao robot. To date, they have worked with six typical children and six children with autism. They have found that in both groups, the children spent more time looking at the robot than looking at the therapist.

We have had similar results so far — children with autism seem to have a natural interest in technology and are very motivated by the robot to learn new skills. The goal is to have the children generalize the communication and social responses and apply them to real-life social situations.

Josh Diehl, PhD, will be presenting our initial findings in a presentation in September inErie.  Stay tuned for further information!

Learn more about the Robot Research Project by visiting our website at http://www.barberinstitute.org/autism-insight/robot-therapy-research-project.

You can also check out a video on YouTube about our Robot Research Project.

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Autism from a Father’s Point of View

father and sonIn honor of Father’s Day I would like to share with you a beautiful poem by a Dad with a child with autism. http://bit.ly/13H6EwB

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Summer Transition, Tips and Tricks

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Summer vacation is upon us! It’s a time to catch your breath and take a break from the daily grind. However, for parents raising children with special needs, summer time doesn’t necessarily mean “care free.”  Yes, there is no home work, and you don’t need to get your child up by 6 a.m. to meet the bus — but if you are like me, you work at making summer a fun, structured experience for your child.

A few tips and tricks I learned over the years…

  • Maintain structure throughout the day: I began from the time Ryan awakened and continued to bed time. Some families have a therapist or sitter come to the house, other children attend group childcare, and there’s also the option of a day camp. I kept the day structured by having Ryan and a sitter work on academics in the morning and afternoons were spent at the local pool, zoo or beach. Rainy days like today found him at the museum or the Tom Ridge Environmental Center.
  • Have a list with variety of options to choose from: Ryan and I always discussed what the various options were for activities. He had the opportunity to choose within the limits I set, and in that way he felt in charge.  Typically outdoor activities, such as swimming, basketball and bicycling were high on his list.
  • Explore sports and recreational lessons: Swimming is fun, and it’s worth considering swimming lessons. If you think a group swimming class might not work for your child, very often private lessons are available at your local YMCA. This was best for Ryan. At age three, Ryan spent the initial six week session with the lifeguard simply pouring water over his head. Today, he’ll swim laps for 60+ minutes.  He’s so proficient that pool time gives me the opportunity to sit back, relax and read a book. It’s possible for you too!
  • Make time for yourself: Ask your siblings, spouse or friends if they could give you a break for an hour or two once a week. This could be at your home so you can supervise what’s going on, but at the very least, it’s an hour break. It’s time for you to refresh.
  • Prepare for the next school year throughout the summer: I had pictures of Ryan’s new teachers.  We went to school, met with the principal, and located his new classrooms and locker. I hoped to decrease his anxiety by giving him concrete information about the upcoming year. I started this in June and continued until school started. He needed the time to get used to the fact that he’d be with new people in new locations, and it gave him a “heads up” as to what to expect.

I’d love to hear your tips and tricks, and I encourage you to find some time to relax and enjoy summer.  Hopefully the rain will stop, and we can enjoy the fun and sun of summer.

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An Open Thank You Letter to Teachers

SONY DSCThe bell has rung, school’s out, summer fun begins (if the sun shines again in Erie). It’s the time of year when school comes to a close and a sense of change approaches. As I walk the halls of the Elizabeth Lee Black School, I hear many “thank you’s” between parents and teachers, faculty and staff and volunteers. I remember when Ryan’s school year came to a close each summer and sending thank you gifts to his teachers for a job well done. Teaching is challenging. There is no other profession that so directly shapes the world of tomorrow. And there aren’t enough “thank you’s” that can be expressed.

It feels best thanking teachers today. I feel especially grateful to the faculty and staff of the ELBS. The school community at the ELBS and the Barber National Institute is so fortunate to have teachers, therapists, paraeducators, volunteers, nurses, support staff and behavior specialists working daily to provide the highest quality services.

They model patience, honesty, courage, perseverance, humor, responsibility, generosity and a commitment to lifelong learning each and every day. This year was no exception.
I commend their stellar performance. Their concern for making ELBS the very best school was obvious to all who worked and visited this year.

My hope is that many teachers throughout the nation are thanked for their dedication.
I am so grateful for each person in the ELBS and teachers throughout the nation who made dreams come true for children this year! Thank you.

Blackboard with chalk

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ImageIt’s raining in Erie, PA, but the dreary weather cannot dampen the spirit of the Barber National Institute today. At this time each year I’m moved by the strength, resilience, and perseverance of our students and staff as they reach this milestone: graduation.

Graduation for our students is pretty typical. Pomp and Circumstance plays, diplomas passed out, caps and gowns worn and a slide show of photos of the graduates shown.

But everyone in the room feels something extraordinary…

Children, who couldn’t walk when they began school at BNI, walk across the stage.

Children, who couldn’t express, smile as they are recognized.

Children, who struggled each day, breathe in a moment of pure joy.

Tears flow as parents marvel at the accomplishments of their sons and daughters. Cheers erupt as teachers and supporters celebrate the triumphs of the children.

ImageI met many of these young people when they were learning to walk and talk. I feel grateful to have witnessed them grow and mature and become very successful. I’ve had the privilege of becoming friends with many parents for years. We have made the journey together.  I always tell the parents that although we may not see each other on a regular basis any longer, the BNI and I will always be there for you as you continue the journey.

Congratulations to our graduates, their families, caregivers and supporters. And, congratulations to our teachers and staff for your support, effort, and dedication to our students. Dreams are coming true at BNI tonight and more dreams will be fulfilled for the boys and girls who follow in the footsteps of our graduates.

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Fun in the Summertime!

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As summer approaches, I look back to Ryan’s summers growing up. What was true of him at age 3 is true at 19. He LOVES the outdoors. It can be any sport – bicycling, swimming, basketball, walking/running and more swimming – as long as it’s outside!

Finding the right activity or program for your child/family is important. Summer can be tough for many families with a child on the spectrum as the spine of the structure of their lives–the school day—vanishes. I have a few suggestions you might want to consider.at 3 is true at 19. He LOVES the outdoors. It can be any sport – bicycling, swimming, basketball, walking/running and more swimming – as long as it’s outside!

  • Are you interested in a continuation of his/her educational program?  If you are responding yes to this question, you would want to first consider if he/she is eligible for Extended School Year (ESY).  Based upon your child’s IEP, he/she may be eligible for a part-time or full-time program throughout the summer.  Continue reading
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Ready, Set, Ride!

IMG_1414Summer is the season of bike rides! Riding a bike is one of the summertime joys of living in Erie.  We have more than our fair share of great paths and trails around Lake Erie and the northeast region. Riding a bike is a lot of fun and a great exercise for children.  Learning to ride a two-wheeled bicycle without training wheels is also an important milestone for children. To help children develop independent bike riding skills, the Barber National Institute is holding a four-week learn-to-bike program called “Ready, Set, Ride!”

The program is ideal for youngsters and young adults with special needs including autism, Down syndrome, mild cerebral palsy, sensory challenges, or developmental delays.
The “Ready, Set, Ride” program can also assist children having difficulty transitioning to riding without training wheels.

“Ready, Set, Ride!” will be held on Saturday, June 8, 15, 22 and 29 with sessions at 9 a.m. and 10:15 a.m. Continue reading

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Anxieties

child with anxietyDo you have a child who struggles with anxiety?

Many of us have anxieties.

For some it is flying in an airplane. For others, it is heights (that’s me), public speaking, or doing “new” things.

Many children with autism spectrum disorders experience anxiety.

For Ryan, anxiety is brought on by experiences in group settings where he worries about not doing well, and meeting with lots of people. These situations remind him too much of school where he saw himself as being unsuccessful. He becomes very nervous, he talks very fast, and I can tell that he is becoming agitated.

A recent report from the Centers for Disease Control and Prevention found that 1.8 million children 18 and younger currently have anxiety disorders, and as many as 10% of all children suffer from phobias. Unlike the usual fears of growing up, anxiety disorders don’t simply go away, but must be treated.

Some children are treated by seeing a counselor who uses cognitive behavioral approaches to help them manage their anxiety by teaching coping strategies.

Ryan will utilize deep breathing, counting backwards to himself and/or picturing a scene that he finds very calming.

Researchers at the Mayo Clinic and other organizations are finding that slowly exposing children to the things that are most anxiety provoking can, in a short period of time, eliminate anxiety.

I’d encourage you to read “Exposure Therapy.”

There is even an app, the Anxiety Coach, developed by Dr. Whiteside of the Mayo Clinic, to help you manage your anxiety symptoms.

Ryan and I are going to give it a try!

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Coming Soon! Katie Couric Talking Autism on Twitter

katie couricTechnology has drastically changed the conversation of autism, hasn’t it?  Social media outlets such as blogs, Facebook and Twitter provide and instant connection and communication within the vast ASD community.  I must admit, I’m still learning how to keep up with social media explosion.  Even as I write the blog today, I’m watching my twitter feed and am amazed at how quickly the tweets appear.  What a powerful, rapid source of communication!

I also feel encouraged by the avenue that social media provides the ASD community. Twitter is an amazing pathway for all individuals (physicians, parents, community leaders, advocacy groups, legislators and celebrities) to Continue reading

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DSM 5: What’s the Big Deal?

dsm5 2013It’s May 2013 and my copy of the DSM 5 is arriving this week. I remember the feeling of apprehension begin to circulate in conversations regarding the proposed revision to Autistic Disorder.  Questions swirled: “How would the change impact children currently diagnosed?” “Would the change of the eligibility criteria result in less children being diagnosed and receiving treatment?”  Parents and professionals questioned the modification of the diagnosis and I too felt concerned.  60% of the Elizabeth Lee Black School students and the majority of children enrolled in behavioral health services have a diagnosis of autism.

So, what’s the big deal?  Life has taught me that a feeling of uneasiness often accompanies change.  However, it is important to me to help parents and professionals (and myself) grasp clarity of the revision.  After reviewing literature and keeping abreast of updates from reliable sources such as the American Psychiatric Association (APA) and Autism Speaks, here’s my understanding…

Children and adults with a current diagnosis of autism will maintain the diagnosis. This is important to keep in mind because the diagnosis determines eligibility for treatment.  If your child is currently diagnosed and receiving services, then this should continue. Continue reading

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