All About Autism

The impact of technology on communication and mobility cannot be underestimated. Doors have been opened that ten years ago would have remained closed. I’ve touched upon the use of the GoTalk devices in our school in an earlier blog; today, I thought I would explore the impact of technology on mobility.

A student uses a gait trainer

Movement is a freedom that many people take for granted. Yet, in our school we have over 30 children who have a physical disability in addition to other developmental challenges. For them, movement is encouraged though the use of gait trainers, a device that is used in the classroom and in therapy and that supports walking. Prone standers offer standing and weight-bearing opportunities for children that are not able to take steps. The benefits of devices such as this include maintenance of bone density, improved organ function, joint alignment, and increased socialization.

One of the earliest existing images of a wheelchair

We have come a long way since the earliest modern-day wheelchair, invented for King Phillip II of Spain in 1595! The earliest found image of a wheelchair is from the 6^th century, carved in stone on a Chinese sarcophagus. Today, wheelchairs are individualized by the student. They can have specialized head rests, lateral support, backs, trays, etc. Some are electric, and can be powered through the use of a joystick. Typically they are used for around 3 years.

I’d like to share with you the story of one of our students. Enji arrived in Erie two years ago from Iraq. She had been in a refugee camp in Turkey for two years. Enji, who has cerebral palsy, was carried into our school by her mother on the first day. She did not have a wheelchair, she had never been to school, and she did not speak English. Through working with our team, Enji now has a specialized wheelchair, gait trainer, and stander. She receives speech, PT, and OT every week, and she has an iPad. And yes, she speaks English today!

At the BNI, we are committed to developing the most innovative, creative ways to make every child and family’s dream come true… It continues to amaze me how great the impact of technology has been on meeting this goal!

Enji uses a gait trainer

A prone stander helps Enji complete schoolwork

I decided to do my post today instead of tomorrow because today is “Spread the Word to End the Word” day, a day dedicated to eliminating the use of the R-word. Last year, I talked about what led up to creation of the day, so today I thought I would focus on some stories that were posted on the official site. To me, they spoke to the significance of why we must work to change people’s perception and language about children and adults who are differently abled. There are many stories listed, but I found these to be especially poignant. See what you think:

“I began my involvement with Special Olympics Southern California over three years ago and began teaching early childhood Special Education to children with Autism Spectrum Disorder for what will soon be two years. These little ones have become the grace and teachers in my life. In years past and up to present day, I cringe every time someone uses the “R-Word”. It is such a downgrade and so extremely hurtful for the individuals who have changed my life. Therefore, every time I hear the “R-word”, I ask the person to think about what they have just said. I tell them my story and who this word affects. How it gives any individual with special needs such a negative connotation. How it is not a funny slang word, but offensive and demeaning. How by speaking kindly of others could give hope for a more positive future, and an end to the R-word.”

“I am a camp counselor at a summer camp for children and young adults with disabilities. To me they are the smartest, happiest people. It breaks my heart to hear of stories they tell me about people who call them names or bully them. I have banned using the R-word in my dorm room. Words hurt remember a human is a human despite a disability or culture. “The only disability In life is a bad attitude” – Scott Hamiliton. Get to know people with disabilities you will see that they are some of the most inspiring people ever.”

Read these and more here.

Do you have a story that you wish to share with us? I would love to hear it!

One of my favorite children’s authors is Dr. Seuss. Many years ago, we began celebrating Dr. Seuss Week in our school. We invite community leaders to join us and read their favorite Dr. Seuss book. In addition, each day we have a special theme, such as Red Shirt Day, Crazy Hair Day, or even Crazy Socks Day! The children and staff “love” the opportunity to dress up!

A little bit of information on Dr. Seuss: Theodor Seuss Geisel, born March 2, 1904, was an American writer and illustrator best known for authoring popular children’s books under the pen name Dr. Seuss. His work includes several of the most popular children’s books of all time, selling over 600 million copies and being translated into more than 20 languages by the time of his death.

His last book, What Pet Should I Get?, was just published last year, nearly two decades after his death. Dr. Seuss knew how to make learning to read an adventure. In this day of high technology, X-Boxes, and iPhones, we shouldn’t forget about the enjoyment you can get form simply reading a book… or reading a book to your child!

Ryan and I have a fun game that we play about Dr. Seuss. Whenever he is going to eat something unhealthy, such as ice cream, brownies, or a cookie, he’ll say to me: “Would you eat this ice cream in a tree? On a house? In the rain? On a train?” And I always reply: “No, no, no! Never in a tree, on a house, in the rain, on a train!” Perhaps I read Green Eggs & Ham to him too many times! It’s no wonder it’s my favorite Dr. Seuss book!

Read more about Dr. Seuss here: http://www.drseussart.com/bio/

For Dr. Seuss activities you can do at home, visit: http://www.seussville.com/Educators/educatorClassroomResources.php?id=printables

In Tuesday’s blog, I shared my thoughts about In A Different Key: The Story of Autism. Today, I wanted to take a moment to dig deeper into one of the most remarkable stories from the book. Do you know who the first person to be diagnosed with Autism was? I had no idea. It was Donald Gray Triplett, born in 1933 in a small, rural town known as Forest, Mississippi. He was first seen by psychiatrist Dr. Leo Kanner in 1938 at Johns Hopkins Hospital. Dr. Kanner was baffled by the boy’s symptoms and was initially unable to diagnose him. However, in Dr. Kanner’s 1943 paper, “Autistic Disturbances of Affective Contact,” Donald Triplett was referred to as Case 1, Donald T.

Donald lived with his parents most of his life in Forest, and was widely accepted by the community. He attended the local high school and later went on to receive his undergraduate degree from a college in Jackson. He later returned to his hometown, where he worked at the bank owned by his family. Throughout his life, Donald was able to learn to drive and traveled abroad extensively.Today, Donald is 82 years old, and continues to live in Forest.

I hope my brief introduction whets your appetite to picking up a copy of In A Different Key: The Story of Autism and learning more about Donald and his incredible journey!

Photos of Donald Triplett, the first person diagnosed with Autism.

Sunday afternoon typically finds me perusing the New York Times book reviews. In A Different Key: The Story of Autism, of course, caught my attention. Reading the review, I knew it was a book I wanted to purchase and ordered it. However, the next day I received an email from friend Scott M. sharing that his daughter Shannon, a former intern at BNI, was working as a publicist in NYC for Penguin Books and was helping to promote the book In A Different Key: The Story of Autism. Later that week, I received a copy in the mail from Shannon!

While I certainly knew a great deal about the history of Autism, reading it in its entirety was another experience. This book actually conveys the faces and the struggles of all the moms and dads who refused to accept an institution as the only opportunity for their child. We learn how in the 1950s, the medical community blamed “refrigerator mothers” for causing Autism. Refusing to accept this, parents advocated for scientists to delve deeper into the causes and treatments for Autism. Certainly, the advancements we see today can be attributed to the determination and persistence of these parents, even in the face of adversity.

Of course, there have been many controversies surrounding the treatment of autism, and many mistakes were made… from Facilitated Communication, to feeding children LSD, and even shock treatments. The book documents these controversies well; it is obvious that it was meticulously researched. I must say that I was stunned reading about some of these treatments – to think that they would even be approved!

This is a book that should be read by everyone. Yes, it is part textbook because it is the definitive history of autism. However, the gripping personal stories take this book to another level. Many times, I did not want to put the book down, as though I couldn’t wait to find out what happened next.

This book has laid the groundwork of what has happened to-date with Autism. It will be up to future parents, advocates, scientists, and researchers to determine what happens next!

Did you know that this Wednesday was Digital Learning Day? This day is a nationwide celebration that encourages the use of technological devices to improve children’s learning experience in schools. The goal is that all students will have access to high-quality digital learning opportunities, regardless of where they reside.

Nao Robot

Started in 2012, Digital Learning Day has provided a great opportunity for schools to showcase their innovative technology programs and share all of the creative ways they use technology in the classroom. More than just a chance to celebrate technology, it’s a chance to celebrate learning.

At ELBS, we celebrated with a technology showcase. There were six stations, each designed to share with visitors a particular technology and how we use it in our classrooms. The tables included Technology Accessories, the Speech department’s use of Compass and GoTalk communication programs and devices, the TapIt Interactive Computer, Social Skills and video modeling, and the Nao Robot Therapy program.

A student uses the TapIt

We are also hosting a free 30-minute digital yoga class. Our preschool yoga experts will lead the room in a series of beginner-level animal poses, all projected from an iPad to the screen!

Not only ELBS school faculty, but all BNI staff had an opportunity to participate in the showcase.

The final portion of the showcase was sharing where the future of technology may take us: virtual reality, smart homes… who can say? Tune in next year to DLD 2017 to see where it may go!

To take a look at the Digital Learning Day’s interactive map of activities, including our very own, visit: http://www.digitallearningday.org/Page/423

Ryan and I have been talking about how we are going to participate in the #RAK16. We decided that every day, each of us will do a special act of kindness and at the end of the day share with each other what we did. In fact, this morning I witnessed a random act of kindness… for Ryan. He was running on the track at the gym, and his shoelaces had come loose. He asked a woman jogging by him if she would tie his shoes very tight for him. She stopped in the middle of her workout to do so. Moments like that are so touching!

As I thought about the topic of kindness, I began to consider how kindness is taught. The rampant problem of bullying in our schools underlies a deeper issue – are we teaching our children to be kind?

According to a recent study, about 80% of interviewed youth said their parents were more concerned with their achievement or happiness than whether they cared for others. The interviewees were also three times more likely to agree that “My parents are prouder if I get good grades in my classes than if I’m a caring community member in class and school.”

I think we can all agree that that’s not good. So the question becomes, “What do we need to do differently?”

It’s never too early for children to hear from parents that caring for others is a top priority. A big part of that is holding children to high moral standards, such as honoring their commitments. I recall how as a youngster I signed up to play tennis, only to find that it wasn’t the right sport for me. However, my parents insisted that I continue for the season, as I had made a commitment to the team to play.

Learning to be caring is like learning anything else: it takes practice. Lots of it. This begins with the parents. Children need to hear their parents address each other as well as others in a respectful manner. This can be as simple as being polite to the waiter taking your order. Make sure your child understands that there is never an acceptable time to be rude to another person.

It’s easy to foster a caring attitude toward family and friends, but it can be more challenging to teach a child how to extend that to an unfamiliar person. Even though technology makes it appear that we are more connected than ever, the reality can be that there is a disconnect behind the computer screen. While the internet is a great platform to learn more about our globe and its challenges, it’s important to take this to the next level. I have always encouraged Ryan to learn more about and be open to different cultures and communities other than his own, but also to ask, “What can I do to help these people in need?”

Parents are a child’s first teacher. We have an important role to play as a mentor and role model. Even when you’re not aware, your child is observing you and seeing how you manage problematic or stressful situations. The way you respond is the way they will respond.  Ask yourself: “Is this how I want my child to behave?” When I’m in a stressful situation, I find it helpful to take deep breaths. I have been teaching Ryan the same technique whenever he becomes anxious and overwhelmed.

This week is a wonderful reminder to all of us to be kinder to people and the world around us. Our world can always use some extra kindness!

Last year, I reflected on some of the Presidents who played a significant role in improving the lives of children with disabilities (read the blog here). I thought this year I would share some information on the Every Student Succeeds Act (ESSA) that was recently passed by our current administration. As President Obama commented:

“With this bill, we reaffirm that fundamentally American ideal—that every child, regardless of race, income, background, the zip code where they live, deserves the chance to make of their lives what they will.”

President Obama signing the historic ESSA on December 10, 2015.

ESSA was signed on December 10, 2015, and represents good news for our nation’s schools. This bipartisan measure reauthorizes the 50-year-old Elementary and Secondary Education Act (ESEA), the nation’s national education law and longstanding commitment to equal opportunity for all students.

The new law builds on key areas of progress in recent years, made possible by the efforts of educators, communities, parents, and students across the country.

For example, today, high school graduation rates are at all-time highs. Dropout rates are at historic lows. And more students are going to college than ever before. These achievements provide a firm foundation for further work to expand educational opportunity and improve student outcomes under ESSA.

The previous version of the law, the No Child Left Behind (NCLB) Act, was enacted in 2002. NCLB represented a significant step forward for our nation’s children in many respects, particularly as it shined a light on where students were making progress and where they needed additional support, regardless of race, income, zip code, disability, home language, or background.

ESSA includes provisions that will help to ensure success for students and schools. Below are just a few. The law:

• Advances equity by upholding critical protections for America’s disadvantaged and high-need students.
• Requires—for the first time—that all students in America be taught to high academic standards that will prepare them to succeed in college and careers.
• Ensures that vital information is provided to educators, families, students, and communities through annual statewide assessments that measure students’ progress toward those high standards.
• Helps to support and grow local innovations—including evidence-based and place-based interventions developed by local leaders and educators—consistent with our Investing in Innovation and Promise Neighborhoods
• Sustains and expands this administration’s historic investments in increasing access to high-quality preschool.
• Maintains an expectation that there will be accountability and action to effect positive change in our lowest-performing schools, where groups of students are not making progress, and where graduation rates are low over extended periods of time.

It will now be the responsibility of each state to step forward with their plans for implementation of ESSA. I am hopeful and will be watching and sharing my thoughts with you as it unfolds.

Scientists and researchers are constantly uncovering more information related to autism, offering insights into the origins, possible causes and even at times potential cures. I come across dozens of articles on a weekly basis, some of which seem more important than others. I thought I would share stories that caught my eye on a monthly basis.

 ~ Maureen

Autism-Linked Protein Lays Groundwork for Healthy Brain

A gene, known as MDGA1, is now linked to mental disorders helps lay the foundation for a crucial brain structure during prenatal development. These finding reveal new mechanistic insights into the gene.

Read the full article here.

Scientists Find New Vessel for Detecting Autism

Evidence of autism may be found in the composition and malfunction of the brain’s blood vessels, a team of scientists has found. Their research sheds new light on the causes of autism, which previously had pointed to neurological make-up rather than to the vascular system, and identifies a new target for potential therapeutic intervention.

Read the full article here.

Untapped Region in Brain Cell Offers Goldmine of Drug Targets for New Autism Treatments

Scientists have discovered that an overlooked region in brain cells houses a motherlode of mutated genes previously tied to Autism. The finding could provide fresh drug targets and lead to new therapies for the disorder.

Read the full article here.

Tune in next month for an update on autism research!

I recently read the article “How School Systems Create *That* Parent for Children in Special Education.” I’m sure that some would have considered me *that* parent at one time. What does *that* parent look like?

Here she is: a parent who establishes goals for her child, goals that she believes are reachable. She is not discouraged by those that say, “your son will never do that.” She is determined to get the very best programs available for her child. “Appropriate” programs are not enough. In her mind, she is not demanding, she is determined. She is not annoying, she is persistent. However, in the eyes of some *that* parent is demanding, annoying, unrealistic, and unreasonable.

At the Barber National Institute, I encourage our faculty to actively engage their students’ parents. Find out what the parent’s hopes and dreams are for his or her child. Establish a plan to assure ongoing communication between home and school. I remind them that often, lack of communication or miscommunication is the root of misunderstandings that lead to labels such as *that* parent.

Undoubtedly, the journey many parents take to get their children the support and services they need can be an arduous one. And yes, parents must be their child’s greatest advocates. At times, they may need to stand up for what they believe their child needs. From my perspective, it’s great to have the parent’s input and active participation on the team. Together we will accomplish so much more for our children. Let’s hope that in all our schools will adopt a welcoming attitude, erasing the need to be *that* parent.

Read the original article here: http://www.huffingtonpost.com/laurie-levy/how-school-systems-create_b_8806948.html