All About Autism

Are You Ready To Beat The Beast?

Posted on July 17, 2014 by all about autism

Ryan beating the Beast on the Maureen Riazzi Adapted Course last year.

Are you ready to beat the Beast on September 6th? On yesterday’s blog I shared true stories of athletes reaching out to children on the autism spectrum to encourage them to become active in football, hockey, surfing and soccer. These athletes recognize the power of their position and reached out to their own communities to establish relationships with children who look up to them. We are proud that so many individuals from our community and beyond have come together to support children and adults with disabilities by becoming involved with the Barber National Institute’s Beast on the Bay. We too have volunteer athletes who have offered their expertise in providing training for persons participating on the Maureen Riazzi adaptive course. In addition, we have hundreds of volunteers who are helping make this year’s Beast on the Bay a huge success.

The Beast on the Bay is a 10-mile extreme obstacle course on the shores of Presque Isle State Park. Participants will scale walls, trudge through mud and race through wooded trails. With the success of last year’s inaugural race we already have 880 participants from sixteen states including Florida, California, South Carolina and Tennessee. Our oldest competitor is 72 and the youngest is 16. I’m also excited that 48% of the racers are women.

Myself, the Beast and Ryan at last year’s Beast on the Bay

A unique component of Beast on the Bay is a 1.2 mile obstacle course offered for persons with disabilities 16 years and above. Beginning at Beach 1 the course will accommodate ambulatory participants as well as those in a wheelchair or power chair. Six obstacles will be spaced throughout the course and incorporate a variety of challenges. All participants are welcome to have a “course buddy” accompany them free of charge. Watch our video from last year’s Barber Beast on the Bay Adapted Course.

I’m so proud the Barber National Institute began the Beast on the Bay to bring awareness and focus on the capabilities and courage of persons with disabilities.

Posted in Uncategorized | Tagged adaptive course, ADS, athletes, autism, barber national institute, Beast on the Bay, bni, ELBS, special needs | Leave a comment

All Inclusive Sports – Fact or Fiction?

Posted on July 16, 2014 by all about autism

TOPSoccer participant

Who were you cheering for in the FIFA World Cup? Throughout the world, all attention was drawn to the final game. As I watch these elite athletes who have trained their entire lives to have the opportunity to be in this event, I thought about young people with special needs who often enjoy sports, but have limited opportunities to be included. I decided to research what programs are out there. I was pleasantly surprised by the number of programs that I found.

As a St. Mary’s graduate and follower of Notre Dame football since I was three years of age, I was really pleased to hear about how Notre Dame athletes reached out to a 10-year-old boy with autism prior to the start of their summer camp. They visited his home, had dinner and, of course, played football. In

Notre Dame Football Players

addition, they told the coach about the young man and on the first day of camp, the coach introduced himself. The other players greeted him with high-fives, smiles and encouragement. Before this experience, he attended the camp for three summers, but barely talked with the other kids and only minimally interacted with the players and other campers. This year he was proud, excited, happy and interacted with enthusiasm.

Other sports such as surfing, soccer and hockey have also reached out to children with

Surfers Healing

autism. Pro surfer Israel Paskowitz used his unique talents to develop Surfers Healing, a free one-day surf camp in which professional surfers teach children with autism. Three thousand children on an annual basis participate in 22 camps across the country. Although we don’t have a camp in Erie, it would be great to travel to one of their sites to have Ryan participate.

Another program to consider is US Youth Soccer TOPSoccer. A community based training and team placement program for young athletes with disabilities and organized by youth soccer association volunteers. The program is designed to bring the opportunity of learning and playing soccer to any boy or girl who has a mental or physical disability.

In 2012, Kevin Gilroy, a Boston University men’s ice hockey player, founded Athletes 4

Athletes-4-Autism

Autism to help children with autism after his involvement with teaching a local hockey clinic for children with special needs. He worked with The Autism Research Foundation (TARF) to establish an inclusion program that would benefit children with autism by hosting athletic clinics taught by college athletes. “My future vision for Athletes 4 Autism is to have a place where kids can just come and be themselves, with and without disabilities,” Gilroy said. “They learn that just because a kid has autism doesn’t mean that he can’t play hockey or he can’t play sports. Everybody can play.”

I’m planning to share my blog with the directors of the local college athletic programs, as well as the Erie Seawolves and Bayhawks. Perhaps they would be willing to explore similar programs using these models. I’d encourage you to investigate the opportunities in your community and share these success stories, which promote an inclusive sports environment.

Posted in Uncategorized | Tagged asd, Athletes 4 Autism, autism, bni, ELBS, FIFA World Cup, inclusive, inclusive sports, Israel Paskowitz, Kevin Gilroy, notre dame, Notre Dame football, special needs, sports, Surfers Healing, TARF, The Autism Research Foundation, TOPSoccer | Leave a comment

Ready, Set, Go! New Study About Running and Helping Children with Autism

Posted on July 10, 2014 by all about autism

Ryan and I running together during a Mother’s Day run.

In past blogs, I discussed the importance of intense physical activity for children with autism and special needs. That’s why I was excited to read about a study with the Achilles International and Cigna Foundation to evaluate how running can help children with autism. Although it is in its early stages, it is hoped that the research will yield insights into how physical activity can improve certain symptoms of ASD.

Achilles International, founded in 1983, is a group that allows people with all types of disabilities to participate in mainstream athletic events. Initially serving adults with physical disabilities, today Achilles Kids offers running, walking and rolling programs for children with autism and cognitive disabilities.

The Achilles Kids: Races and Workouts program provides training activities that integrate free-play, games, and nutritious snacks to make the experience fun. In New York, children with disabilities are given the opportunity to compete alongside able-bodied children in the Road Runners Club’s Pee Wee races.

I was also fascinated to read about OLYMPUS DIGITAL CAMERA Achilles Kids: Run to Learn program, which was developed in 1995 by Achilles International. The program consists of a series of physical and educational activities that integrate educational challenges and games with running, walking, rolling, or other forms of movement to encourage and motivate children to participate in regular physical activity.

It is based on a real 26.2 mile marathon, but done virtually. In a year-long gym activity, children do a number of laps each week. The laps are counted and converted into miles, and then charted as a 26.2 mile route on a map of their town. While the children are tackling the long-term accomplishment of completing the marathon, they are also realizing short-term achievements based on meeting weekly goals. In addition, it also incorporated math, English, science and nutrition.

achilles 2 Achilles Kids: Run to Learn is currently in over 150 schools in the U.S. with approximately 3,500 kids participating. I am requesting more information about the program. Perhaps we could establish a Run To Learn at the BNI.

To request more information about the Learn to Run program or find a Achilles International program near you, visit Achilles International‘s website or call 212-354-0300 x305.

Achilles Internationals programs are a great tool for breaking down barriers and raising awareness.

Posted in Uncategorized | Tagged Achilles International, asd, autism, bni, CIgna Foundation, disabilities, ELBS, physical exercise, Races and Workouts, Run to Learn, running, running programs, special needs | Leave a comment

“My Job Chart”

Posted on July 8, 2014 by all about autism

All of us hope our children will have a strong work ethic. When Ryan was a toddler I would sing the “Clean Up” song to remind him that play time was over and he needed to put his toys away. Regardless of his age, he always had a list of “jobs” that were his responsibility to complete. Today, he continues to assume responsibility for various jobs within the house: watering the plants, sweeping, emptying the dishwasher, making his bed and taking out the trash. His days are full with two jobs — working in maintenance at Bello’s Grocery Store and BNI. He tells me he wants to work hard so that he can earn money for movies, skiing, golf, LECOM and other fun activities. His work ethic is admirable and he receives praise from his supervisor for his dedication and hard work.

Ryan using the computer as a reinforcer.

One of the tools I had used to encourage his compliance with chore responsibilities was a job chart, which is why I was intrigued when I recently came across MyJobChart.com. This online tool provides an interactive “chore” system that teaches children the concepts that promote independence. The parent identifies the jobs to be completed, assigns points for each job, and, with their child, establishes rewards. The child then logs on with his/her own password and selects the job to be completed. Once completed, the child receives points that can be converted into dollars that are saved, spent or donated to charity. The parents are also notified when the child has completed the task and has selected a reward.

With over 687,000 members, My Job Chart has shown itself to be the modern equivalent of an old fashioned sticker chart. We know that our children enjoy using technology, and this site not only engages them, but teaches them responsibility, accountability, money management and problem solving — essential skills for individuals of all ages. This site is free for families and can be used with Apple and Android apps.

Try it and let me know if it works for your family.

Posted in Uncategorized | Tagged asd, autism, bni, chores, ELBS, jobs, My Job Chart, rules | 2 Comments

Fireworks and Safety – Can the Two Go Together?

Posted on July 3, 2014 by all about autism

Last year, my July 4^th blog offered you tips for an autism-friendly Independence Day. This year I’m discussing safety. As with all holidays, there are many activities, but with the 4^th of July we think immediately of fireworks.

However, many community firework displays are being eliminated or cut back due to economic conditions, and families are purchasing fireworks for their own backyard celebrations.

Each year thousands of children and teenagers continue to be injured while using fireworks. Some guidelines to follow:

Keep back a safe distance away when fireworks are being used.
Keep water or a garden hose available and ready to use.
Do not buy fireworks for your children and NEVER let them light the fireworks.
Even sparklers require direct adult supervision as sparklers can get up to 2,000 degrees Fahrenheit, equivalent of a blow torch.
Teach your children to have a healthy respect for fireworks.

Safety is always my number one priority. Make sure it is yours as well so that you and your family can have a safe and fun 4^th of July. I wish you a very Happy 4^th of July.

Posted in Uncategorized | Tagged 4th of July, autism, bni, children, ELBS, fireworks, independence day, July 4th, respect for fireworks, safety, special needs | Leave a comment

To Fly or Not To Fly – That Is The Question

Posted on July 1, 2014 by all about autism

child-in-flight As we begin the month of July I’m sure that many of you are planning your annual summer vacations. As I think back to our vacations, I recall how I initially approached flying with Ryan with trepidation. Would he remain calm passing through security? How would he deal with the crowds in the airport? How would he react to sitting on an airplane for a few hours? I knew that up until he got on the plane he would perseverate on flying, his way of dealing with the unknown. We did social stories and traveled to our local airport and watched the planes coming in and out. We also talked about how much he would enjoy his first airplane trip… and he did. Fortunately for both of us, his first flight was a success and I could look to future trips without a sense of foreboding.

However, for many families, airline travel is not a positive experience. That’s the reason child and airplane Wings for Autism was created in 2011 by the Charles River Center in Massachusetts and Massachusetts Port Authority. Wings for Autism provides families with the opportunity to practice entering the airport, obtaining boarding passes, going through security and boarding a plane. Also, the program gives airport personnel an opportunity to observe and interact with children with disabilities and their families. Today, Wings for Autism has expanded to a number of cities including Seattle, Anchorage and Tulsa. Another program that I found is AIR – Helping Families Soar.

What can you do to bring such a program to your community? I am

Contacting the Airport Authority to make them aware of these programs and determine steps to initiate the program locally
Contacting the airlines that fly out of Erie, PA
Contacting Wings for Autism and AIR – Helping Families Soar

I will give you an update on my progress. Wouldn’t it be great if every community with an airline had such a program for children with special needs? Let’s make that our goal!

Posted in Uncategorized | Tagged AIR Helping Families Soar, asd, autism, bni, Charles River Center, ELBS, flight, flying, rehearsal, special needs, Wings for Autism | Leave a comment

The Impact of One

Posted on June 26, 2014 by all about autism

Jeanne and I at one of Ryan’s first runs.

Tomorrow marks the last day of one of our long term employees, Jeanne Baker.

Thirty four years ago she began her Barber National Institute (BNI) career as a behavior specialist in our Adult Services. However, Jeanne has worn many hats in her tenure. Many of her assignments were related to the initiation of new programs. She lead the development of our Intermediate care facility (ICF/MR) in Erie, a new residential program with lots of medical related requirements which were all new to all of us.

When the Secretary of Welfare (DPW) asked Dr. Gertrude Barber to provide ICF/MR services to Philadelphia, Dr. Barber called upon Jeanne to lead this charge. Jeanne was on the road to Philadelphia so much that she commented that she had to stop and think when she woke up, “What city am I in?”

The early 1990’s saw the development of Behavioral Health Services with Jeanne at the helm. This was the beginning of the tsunami of children with autism. We reviewed the research, acknowledged that Applied Behavioral Analysis (ABA) was the preferred treatment and began sending staff for training. The BNI became well known for its expertise in working with children on the spectrum.

Jeanne bringing smiles and laughter to the students at ELBS.

Next was the development of the Pittsburgh Residential Services, again a request from DPW because of our expertise in working with families whose sons and daughters had been institutionalized. After a brief stint as the Director of Compliance (a position that Jeanne did not favor as she preferred working with the children and adults), she joined the Children and Youth Services as administrative director, where she has served the last 10 years.

As each of us looks back over our careers, and the persons who have worked so closely with our children, I am sure that most of you had a Jeanne Baker in your life. The name will be different but a similar person whose life was dedicated to seeing that all children and adults with disabilities had every opportunity to grow and develop to their fullest. Thank you Jeanne for sharing your life work with us and making dreams come true for our children and their families.

Posted in Uncategorized | Tagged adults, asd, autism, barber national institute, Behavioral Health Services, bni, children, dpw, Dr. Gertrude Barber, ELBS, Jeanne Baker, Pittsburgh Residential Services, Secretary of Welfare, special needs | 2 Comments

Autism Research Embraces Technology

Posted on June 24, 2014 by all about autism

Autism Speaks recently announced that they are collaborating with Google to transform genomic research on ASD. This is a very complicated, scientific concept so I have been researching it further to ensure that I understand what this means. What I’ve learned is:

For the first time ever researchers have analyzed the entire DNA sequence (whole genome) of individuals with ASD and were able to link autism symptoms to specific genetic changes in half of the families studied.
Autism Speaks will use the Google Cloud platform to manage, analyze and share this information.
The goal is to sequence the whole genome of 10,000 individuals with ASD living throughout the world. Upon completion this collaboration could lead to the identification of various subtypes of autism.
“Whole genome sequencing has shown its potential to fundamentally transform the future of medical care for people with autism,” said Autism Speaks Chief Science Officer Rob Ring.

So now that I understand the impact of this research I decided to investigate how you and I can participate. The site that I found most helpful was Interactive Autism Network.

I’d encourage you to consider registering with this network. Wherever you live you can make a difference by participating … and it only takes 10 minutes.

Posted in Uncategorized | Tagged asd, AUT10K, autism, autism speaks, bni, ELBS, genome sequencing, Google, IAN, Interactive Autism Network, research, special needs | Leave a comment

A Tribute to Dianne Winiecki

Posted on June 19, 2014 by all about autism

Dianne Winiecki

This weekend saw the passing of our dear friend and colleague Dianne Winiecki. We are sad to lose her but know that she has gone to her Lord and will no longer suffer the challenges that she has experienced the last two years.

I first met Dianne during the summer of my freshman year when I began to work as a classroom aide at the Barber Center. My past experiences included volunteering for Center activities, so this was going to be my “first” real job. I was nervous, as I had no idea what to expect in my role as classroom aide. Mrs. Pascarella assured me that she would assign me to the best teacher that they had, Dianne Winiecki. It was truly a learning summer and I found that I thoroughly enjoyed working with the children.

Throughout my college years, summertime found me back to the Center continuing my role as a classroom aide. These experiences led me to pursue a Master’s Degree in Special Education. I returned to the Center after working as a special education teacher in the Erie School District. Now in my new role as a supervisor, I would assign Dianne to mentor new teachers and assistants. Every teacher wanted to work with Dianne as she was so fabulous with the children. She retired in 2012 because, as she told me, “I can’t keep up with the kids so it is not fair to the teacher or the children.”

My personal friendship with Dianne began 18 years ago when Ryan was two and a student in the Happy Hearts childcare program. I was concerned, as he was experiencing developmental delays in language. I turned to Dr. Barber for advice and she called upon Dianne for a special favor to work with Ryan. Although she only worked with Ryan for nine months, they established an unbreakable bond. Easter, Christmas, Halloween and birthdays were occasions to visit, go on trips to the Peninsula, see movies and take car rides. This continued until her illness prevented their get-togethers, but we continued to mail a monthly card to update her on our activities and let her know that she was loved and missed.

Dianne was the very definition of “making dreams come true” for all of our children. Thank you for your 48 years of service to the Barber National Institute.You will truly be missed.

Posted in Uncategorized | Tagged asd, autism, bni, Dianne Winiecki, ELBS, special education, special needs, teacher, tribute | 6 Comments

In Memory of Lorna Wing – A Pioneer in Autism Research

Posted on June 17, 2014 by all about autism

Lorna Wing

“Her life was a gift for people with autism across the world. She has left a huge legacy behind” ~ Patricia Howlin

Lorna Wing, one of the pioneers of autism research, passed away June 6^th. She worked at the Institute of Psychiatry in the MRC Social Psychiatry Unit in the 60s, 70s, and 80s and conducted landmark studies of autism that changed many conceptions of the disorder. She also introduced the concept of autism as a spectrum disorder that affected children and adults of all ages and abilities.

With other parents she founded the National Autistic Society in the UK in the early 60s, which established the first specialist schools and later adult services for people with autism. As a mother of a daughter with severe autism, her work throughout her life reflected her understanding of the challenges parents’ experience of raising a child with autism.

In 1981 she introduced Hans Asperger’s work to the English-speaking world. Few at this time knew that an Austrian pediatrician, Hans Asperger, had published a paper in the early 1940s about his observations of four children who had difficulty integrating socially, had normal intelligence but lacked non-verbal communication skills. We owe our thanks to Lorna Wing for discovering this work.

Although at the time I was not familiar with Lorna Wing’s work in the UK in the US we were relooking in the early 80s at some of our children who were diagnosed with intellectual disabilities with “autistic tendencies.” We began to acknowledge that children with autism required instructional strategies different from children with intellectual disabilities. Faculty traveled to the University of North Carolina to learn about T.E.A.C.H. model. Others travelled to California and learned from Ivar Lovaas, a clinical psychologist and founder of ABA (applied behavior analysis). Both models are still used at ELBS today.

I am saddened by her passing but know because of the work of Lorna Wing, children and adults with ASD have every opportunity to be successful members of their communities.