All About Autism

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.

Posted in Uncategorized | Tagged aba, applied behavior analysis, asd, autism, autism pioneer, bni, ELBS, Hans Asperger, Institute of Psychiarty, intellectual disabilities, Ivar Lovaas, Lorna Wing, National Autistic Society, Patricia Howlin, special needs, T.E.A.C.H., UK | Leave a comment

Remembering My Father’s Lessons

Posted on June 12, 2014 by all about autism

MBC's Father & Dr. Gertrude Barber as children (cropped)

Photo Credits: (Front Row L-R) Maureen’s Father with his sister, Dr. Gertrude Barber

As we approach Father’s Day I think back to my father who passed away 40 years ago. No matter how many years go by each of us has very special memories of our dad. For me I think how my father served as a role model throughout my life. He always encouraged me to reach for the sky. Challenges were opportunities for us to grow.

As I reflect on my life as a parent, teacher and administrator I have used his lessons to guide me on my journey. It has led me to dreams not only for Ryan but for the hundreds of families that I have had the privilege of getting to know and serve. By following my father’s advice I have helped make dreams come true for Ryan and the children and families at Barber National Institute.

As I think about my father I recall a quote that I truly believe. “The most important … work you and I will ever do will be within the walls of our own homes.” ~ Harold B. Lee

What Makes a Dad
God took the strength of a mountain,
The majesty of a tree,
The warmth of a summer sun,
The calm of a quiet sea,
The generous soul of nature,
The comforting arm of night,
The wisdom of the ages,
The power of the eagle’s flight,
The joy of a morning in spring,
The faith of a mustard seed,
The patience of eternity,
The depth of a family need,
Then God combined these qualities,
When there was nothing more to add,
He knew His masterpiece was complete,
And so, He called it … Dad
~Author Unknown

Posted in Uncategorized | Tagged advice, asd, autism, bni, dad, dads, dreams, ELBS, father, fathers, fathers day, lessons, memories, special needs, strong, thank you, thankful | 2 Comments

httpwww.autismjobboard.com - Shannon Nash with her son Jason, who helped inspire her to launch Autism Job Board, a new website for job seekers with autism spectrum disorder.

Shannon Nash with her son Jason, who helped inspire her to launch Autism Job Board, a new website for job seekers with autism spectrum disorder. Photo credit: http://www.huffingtonpost.com/2014/06/02/autism-job-board_n_5418880.html?utm_hp_ref=autism

In a study published yesterday in the JAMA Pediatrics journal, we learned that autism is one of the costliest disabilities: $2.4 million across the lifespan if the person also has intellectual disabilities. Not surprising is that 79% of that cost is due to services such as medical care, home health care, special education and after school care. What is surprising is that 9% is due to wages that caregivers give up to care for a family member with autism. Overwhelming? Yes, but it serves as a call to action for all of us to bring down the cost of autism for families and society.

Knowing that early identification leads to better outcomes in our children we need to educate our legislators about the importance of funding early intervention programs.
Parents often decrease their working hours because of the difficulty in securing quality childcare. Encourage businesses to offer family friendly workplace policies, which might enable more parents to stay working.
Advocate for businesses to hire individuals with autism and intellectual disabilities like Shannon Nash did by launching the Autism Job Board website. It’s a win-win situation for both the employer and individual.
Expand residential living options for adults with ASD. Too often I hear from parents that their son or daughter is living in their basement unable to afford an apartment but wanting to live independently. Their ongoing question is, “what can we do?”

I believe that we need a comprehensive, strategic plan to address these critical issues. I certainly don’t have all the answers to this problem that is facing society. I would like to hear from you on what do you think we could do.

Posted on June 10, 2014 by all about autism | Leave a comment

004 The sun is shining on our students who are graduating this evening from the Elizabeth Lee Black School. I’ve know some of the children since they began as infants in our Early Intervention Program. I met others when they turned 3 and started preschool.

But tonight is special. We have 45 students graduating into kindergarten in their neighborhood school, elementary school or BNI Adult Services. I look back and reflect upon their extraordinary accomplishments. Children who did not talk when they started school are now having conversations; children who did not walk are now running across the playground. Their confidence and self-esteem blossomed as they acquired new skills, friends and lots of supporters among our faculty.

We deeply believe that we have a responsibility to each of our students to provide them and their family with every opportunity to grow and develop to their fullest potential. John V That is what I will see tonight – 45 children and their families who’s “dreams have come true.”

If you have graduation pictures that you would like to share I would love to see them.

Posted on June 5, 2014 by all about autism | Leave a comment

Wandering Our children are excited as they approach their final countdown to summer vacation. We as parents have probably been planning our children’s vacation schedule since the beginning of April. I know I always did. Summer is a time when we are vacationing at the beach, visiting amusement parks, out and about and having fun. Even though summer is a fun and exciting few months, it is also a worrisome time because our children may have opportunities to wander.

As June is National Safety Month I hope to update everyone and increase awareness about this critical safety issue. Since I wrote my previous blogs (Children with ASD and Wandering, Safety Measures for a Wandering Child, Planning and Prevention Tips for Children with ASD and The Search for Avonte) on wandering there have been a number of new supports that have become available to decrease the dangers of wandering.

Why do children wander?

Goal directed wandering: wandering with a purpose of getting something he/she wants
Bolting / Fleeing wandering: running away out of fear, anxiety, excitement or stress
Wandering due to boredom, confusion or simply becoming lost

What can you do as a parent to be prepared?

National Autism Society has a Big Red Safety Toolkit that provides you with caregiver checklists, sample family wandering emergency plan, information sheet for first responders.
They also have a toolkit for First Responders, which includes a checklist, resources and tips
Tracking Devices: There are a couple of varieties. GPS depends upon satellites to provide positioning and navigation information. Project Lifesaver, CareTrak and LoJack SafetyNet are typically facilitated by local law enforcement and use radio frequency.
GeoFencing: a feature in a software program that uses the global positioning system (GPS) or radio frequency identification (RFID) to define geographical boundaries. A geofence is a virtual barrier.
Tracking devices alone should not be relied upon as the sole source of your loved one’s security. Close adult supervision, home security measures and other safety precautions should always be taken and routinely reassessed for updated when necessary.
Teach your child to swim. Many YMCAs have swimming lessons for children with special needs. It is recommended that the final lesson should be with clothes and shoes on.

As we gear up for all of the fun activities I wish you a safe and happy summer. Ryan and I will be swimming, playing tennis, golfing and kayaking. I’m tired already.

Posted on June 2, 2014 by all about autism | Leave a comment

Dr. George provided walkers to two boys who sat on the floor all day long. Like typical boys, they even learned to run using the walkers. One boys legs have developed enough and is now able to walk unassisted. (Photo Credit: http://www.nspreschurch.org/india.html)

It was 1990 and David Householder of the North Sewickley Presbyterian Church recommended to Dr. V.C. George that he come to Erie for on-the-job training at the Dr. Gertrude A. Barber Center. At that time he was a manager of a program for adults with disabilities in India. Dr. George spent four months with us learning about everything we did for children and adults with disabilities in our school, with our adult services and in our residential programs. He returned to India to begin his mission.

He came back to Erie in the late 90s and early 2000s many, many times, always committed to learning the state-of-the-art programs. One summer, our physical therapist, Tom Hudson, returned to India with him to spend six weeks assisting Dr. George with establishing his programs for children and adults with disabilities. In 2008, Dr. George dedicated his school for children with disabilities. A few years later he began a small center for adults with disabilities. Dr. George currently serves as Clinical Psychologist/ Administrator of Vadaketh Development Center, Miraj, Maharashtra, India and is President of the Indian Association of Clinical Psychologists.

Vadaketh Center in Miraj, Maharastra, India

In addition to providing these direct services, Dr. George has been able to help at least two other village schools begin to serve children with disabilities. Also, he is a voice for these children at the national level in India and is influencing the priorities and services India offers persons with disabilities.

Photo Credit: L – R; Maureen Barber-Carey, Dr. V.C. George, Irene George, Bridget Barber, John Barber

Today, 24 years later, he has returned to the Barber National Institute to offer us an update on the Vadaketh Development Center and to learn from us what is current that is practiced in the field of disabilities. Dr. George frequently comments that he has established a Gertrude Barber Center in India. I look forward to his visit and will share his comments in future blogs.

Posted on May 29, 2014 by all about autism | Leave a comment

Break the Stigma!

Posted on May 27, 2014 by all about autism

mental-health-month As we focus on May as Mental Health Awareness Month, we know that there is a great deal of misunderstanding about mental illness. Unfortunately, negative attitudes and beliefs toward people who have a mental health condition are common. Although 1 in 4 people have some form of a mental health disorder, a recent study found that in Europe and the United States up to 75% of those affected don’t receive the treatment they need.

Too often people are reluctant to seek help because of the stigma attached to mental illness 1 in 4 mental illness and are afraid to let anyone know they have an issue. Those most affected by the stigma are young people, those from minority ethnic groups, members of the military and healthcare professionals.

What can you do? Take the pledge to break the stigma. People across the country are finding innovative ways to start the mental health dialogues in their communities. In Charlotte, event organizers arranged a flash mob, photography, documentary video, and a pledge to break the stigma. For more information visit the National Institute of Mental Health website.

After you check out the videos below I think you’ll be willing to take the pledge.

For more resources:
National Alliance on Mental Illness
Creating Community Solutions
The Civic Commons

I encourage you to join them on FB and Twitter and help break the stigma.

Posted in Uncategorized | Tagged 1 in 4, autism, bni, Break the Stigma, ELBS, mental health, mental health awareness, special needs, Take The Pledge | Leave a comment

Bridging The Digital Divide

Posted on May 23, 2014 by all about autism

I was fortunate to attend Tuesday’s “Bridging the Digital Divide: A Forum on Using Technology in Early Childhood Education” sponsored by the RAND Corporation and PNC Grow Up Great. This was an excellent opportunity to hear from education experts and network on this important policy issue. Knowing that eighty percent of four year olds receive regular care from someone other than their parents and three quarters of these children attend a preschool program, a quality early childhood education (ECE) is essential. We know that increased higher education graduation rates, good jobs, higher earnings and greater self-sufficiency come from quality ECE. Unfortunately, too many disadvantaged children are behind their peers in technology, access and use. The question remains can technology and ECE reduce this digital divide, as well as, provide opportunities to build cognitive, social and motor skills.

A two prong approach is needed that supports access to devices not only in schools but also in households in low income areas. Too many preschools do not have computers, adequate bandwidth and appropriate software. As I listened to the presentations, I was heartened that BNI had made a significant commitment to ensure that the infrastructure that we needed was in place. Today our school is wireless; we have two desktop computers per room and 70+ iPads. Yet computers and iPads remain only one tool in a teacher’s tool kit.

I was excited to hear about Message From Me, a new system of communication between pre-k children and their parents to improve school and home consistency. Funded through a grant from The Grable Foundation and PNC Grow Up Great, preschool children are able to take digital pictures, record audio messages and send them to their families via email and cell phone technology. The outcomes are many: increased self-esteem and independence, enhanced communication and social skills. What parent would not enjoy receiving a message from their child at school? Currently in the pilot phase, I learned that an app should become available in September.