All About Autism

Did you know that April is National Volunteer Month? Volunteering is essential to a healthy community – it creates ownership, builds relationships, fosters civic responsibility and fulfills vital needs. Thousands of people in the Erie community have given the gift of themselves by choosing to volunteer. While the Barber National Institute thrives from dozens of volunteers on a daily basis, I thought I would ask two of our long-time volunteers and friends a few questions about their love of volunteering. 

To all of our loyal friends, thank you for all you do each and every day to make the dreams of children and adults of the Barber National Institute come true!

~ Maureen

How long have you been volunteers?

We have been volunteers most of our adult lives. Judy started in the schools our two sons attended in Ohio, then with the local hospital auxiliary, on church committees and at the local library. She met Dr. Gertrude Barber when we moved to Erie in 1996 and she began volunteering at the then-Barber Center and is in her 20th year.

Jim’s volunteer career began in earnest when we moved to Lewistown, PA in 1981, where he was a member and, at the time, chair of the boards of the local hospital and economic development corporation. Since living in Erie he has volunteered as a board member with United Way, VisitErie, Erie Regional Chamber and Growth Partnership, Athena, Erie Together, and most recently, Erie Arts and Culture.

Judy and Jim share two other volunteer activities. They are both members of the Erie Regional Library Foundation board and are eucharistic ministers at St. Jude the Apostle Church.

What inspired you to begin volunteering?

We are both inspired by the belief that we have a responsibility to help those in need and to give back to the community that enabled us to earn a living. Judy likes to look where there is a need to fill a spot not covered by staff. Jim is inspired by the challenge of helping bring people together to build organizations devoted to the community’s greater good.

What do you look for when selecting a place to volunteer with?

When we look to volunteer, we first decide what interests us, and more importantly, what moves us when we see a need. Then we talk to friends who might know something about where our time and talents might fit best. Reaching out to places that might be a good fit for them and us as volunteers, we then explore what needs to be done, and how that matches our skill sets and available time.

What have you learned as a result of being a volunteer?

Both of us have learned that there are so many caring people, both staff and other volunteers, in the organizations where we choose to volunteer our time. We also know that we get back far more than we give in our volunteer services. For example, at the Barber National Institute Judy enjoys seeing that what she does as a volunteer pleases and makes things easier for the staff she works with. And Jim, who tutors in the Adult Basic Education classes at the Barber National Institute, gets as excited as his students when they succeed in the classroom and are able to carry that success into their everyday lives.

What is one thing you wish more people understood about volunteering?

We wish more people, including retirees like ourselves, realized how easy it is to volunteer. You can decide how little or how much time you want to spend, and you will be welcomed. The need for volunteers always exceeds the supply, And we promise that when each time you volunteer comes to an end, you will feel good about being able to give back to others and that what you have contributed in time and talent has made a difference.

This Saturday, I’ll be walking in my 16^th annual walk for Autism. When I started, Ryan was in first grade. He received a diagnosis of autism when he was 18 months old. When I heard about the first walk, I knew that Ryan and I would definitely be there. I wanted to walk:

• In encouragement of Erie’s children and families impacted by autism
• In appreciation for the outstanding services available for children with autism
• To expand awareness of autism
• To let parents who just received an autism diagnosis know they are not alone
• In thanks for the overwhelming support I have received from my friends and family
• To help boost autism research
• To express my gratitude to the many individuals who have helped Ryan

Ryan at one of his earliest walks

Amazingly, after 16 years, on Saturday I will be walking for these same reasons. However, I do have some new additions:

• In honor of the thousands of adults with autism graduating from school and entering the world of work
• To enlighten employers of our community on how employees with autism can become wonderful assets to their companies
• To reacquaint myself with children and families who once attended our school and have now moved on to exciting new educational opportunities but are always a part of the Barber National Institute family

This day, along with dozens of others across the country, is a strong statement to the world of the compassion, conviction, and commitment of individuals from many walks of life to autism.

To register for the 16th annual Autism Society of NWPA’s Walk, visit:

http://nwpa-asa.org/events/walk-information/

As we mark Autism Awareness Month this April, there is great hope that 2017 will become a banner year for adults on the autism spectrum.  The optimism arises from the draft budget that Gov. Tom Wolf has submitted to the Pennsylvania Legislature, which includes significant changes to two major sources of government funding for individuals with autism and their families.

The funding is described in legislation known as a waiver, specifically the Person/Family Directed Services waiver and the Consolidated waiver.  Historically, this waiver funding has only been available to individuals with intellectual disabilities.  When children with autism turn 21 years of age and graduate from school, they are no longer eligible to receive any government-supported sources of funding.   In other words, young adults are not eligible to receive most services that would help them train for and locate a job, live independently or even receive vital therapies or other supports. As autism has become the fastest growing disability in America, this means that thousands of young adults suddenly find themselves without the help they need.

The changes Gov. Wolf has proposed for these waivers, and the funding they provide, would expand the eligibility for services to include people with a diagnosis of autism who do not have an intellectual disability.

In essence, the waivers work by enabling Pennsylvania to receive federal funds that will match the amount designated by the state. This funding can then be used by the individuals and their families in numerous ways, whether by covering the costs of a job coach, of residential living arrangements, community-based services, and much more. Now, not only will people with an intellectual disability be eligible for this funding, but individuals with autism will as well.

You might be thinking that this change will affect only a small percentage of our state’s citizens, but what Gov. Wolf has tapped into is, in fact, a national issue. Currently, 3.5 million Americans are diagnosed with ASD; an estimated 40% – 50% of these individuals do not have an intellectual disability that made them eligible for services under the current waivers.

I applaud Governor Wolf’s inclusion of these waiver expansions in his budget; he is blazing a trail I hope the rest of our nation will follow. Make no mistake, the efforts required to continue down this path are enormous. On one hand, we must strive to search for and make the most efficient use of our scare societal resources. However, we must continuously seek to grow and expand these resources as we prepare for the thousands of children with autism in our country who will soon be entering adulthood.

Being prepared to meet this need will require some creative and, more importantly, collaborative thinking across services and sectors in various service systems.  One such example is Gov. Wolf’s proposal to create a Department of Health and Human Services that will combine the departments of Human Services, Health, Aging, and Drug and Alcohol Programs to streamline services and hopefully reduce costs.

Gov. Wolf’s budget will move Pennsylvania forward in this critical social issue, supporting individuals and families with autism, and leading to a real difference in the opportunities they will have in our state. Let’s show the governor our support by contacting our local legislators and encouraging them to vote “Yes.”

As a parent of a child with a disability, one of the thoughts I had throughout Ryan’s educational career was, “Will he be prepared for life after school?” Thinking back, Ryan was seven years old when my brother, pediatric neurologist Dr. Joe Barber, said: “It’s important to begin planning for transition now, and not to wait until he’s in high school.” At first, I was taken aback; but the more I thought about this concept, I knew he was right. So, at each of his IEP meetings I would always preface the discussion by saying, “What we are planning today needs to address what he will need when he turns 18.” I do believe that Ryan was better prepared than most because of my continued focus on preparation.

The recently published findings of a 2012 study, exploring the characteristics and experiences of 13,000 students between ages 13-21, suggest
some disturbing facts surrounding this issue:

• Youth with an IEP are more likely than the
  ir peers to be socio-economically disadvantaged and to face problems with health and communication
• This same group is also more likely than any other youth group to struggle academically, yet by contrast, they are less likely some form of school-based support
• Five groups – Youth with autism; intellectual disabilities; multiple disabilities; deaf/blindness; orthopedic impairments – appear to be at a higher risk than all other youth for challenges in making successful transition from high school

What is most startling to me is that for many years we have drawn attention to the importance of transition for students with disabilities, yet these statistics would indicate that our success has been minimal.  Is this occurring because we have insufficient funding? Perhaps we have not dedicated sufficient focus to the policies that would have decreased, if not eradicated, this problem. Whatever the underlying issue, we must renew our attention to this important area to provide greater support to these students.

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 on a monthly basis stories that caught my eye.

~ Maureen

Wearable camera captures eye contact in children with autism

A camera embedded in a pair of eyeglasses can reliably gauge a child’s tendency to look another person in the eye. A tendency to avoid looking at others’ eyes is a hallmark of autism and may appear in infancy — years before clinicians can diagnose the condition. Recordings from the new device may eventually help clinicians spot toddlers at risk for the condition.

Read the full article here.

Brain Stem Size May Predict Aggression in Those with ASD

Biological differences in the brain could explain why some with autism display problematic behavior, researchers say, and pinpointing the root of such issues may lead to interventions. In a study looking at magnetic resonance imaging, or MRI, scans of kids with and without autism, researchers found a correlation between brain stem volume and a child’s propensity for aggression. Those with a smaller brain stem were more likely to have difficulty controlling themselves, according to findings published this month in the journal Research in Autism Spectrum Disorders.

Read the full article here.

Landmark autism genetic study seeking participants

Families affected by autism are invited to a special on-site registration and data collection event for the nation’s largest-ever autism research study. The research project, called SPARK (Simons Foundation Powering Autism Research for Knowledge), aims to uncover causes and treatments for autism by collecting behavioral information and saliva DNA samples from 50,000 individuals with autism and their biological family members.

Read the full article here.

In trials, repurposed drug shows promise for autism

A drug used to treat excessive swelling seems to ease autism features in some children on the spectrum, according to results from a trial in France. Clinicians prescribe the drug, called bumetanide, to relieve fluid retention after heart failure and in people with liver or kidney disease. The drug is also used to lower blood pressure. In the brain, it affects a chemical messenger, gamma-aminobutyric acid (GABA), thought to be important in autism.

Read the full article here.

World’s Largest Autism Genome Database Shines New Light on Many New “Autisms”

Latest study from the Autism Speaks MSSNG program identifies 18 new autism-linked genes, deepening understanding of autism’s broad spectrum. What’s more, 80% of the 61 gene variations discovered through the program, to-date, affect biochemical pathways that have clear potential as targets for future medicines.

Read the full article here.

Tune in next month for an update on autism research!

In honor of Down Syndrome Awareness Day, I asked one of our faculty if she would be willing to share her personal experiences as a mother of a child with down syndrome – I am so glad I did! I hope Devon’s sweet story inspires you as it inspired me. 

~ Maureen

Devon Mellin has been a Special Education teacher to high school-aged students at the Barber National Institute for the past 7 years. She has been married for 15 years to her high school sweetheart, Garrett, and is the mother of three delightful, energetic and amazing children: Broc (11 years old), Addyson (9 years old) and Harper (5 years old) and the newest addition, Chloe (a 1 year old boxer). She graduated from Edinboro University with a degree in Elementary and Special Education, and has been teaching for nearly 15 years. 

My husband, Garrett, and I had our middle child in 2007.  We welcomed to the world a baby girl named Addyson Mae. As any parent, we knew our lives would change, but we were not expecting the news we received that day in the hospital.  We had chosen not to participate in any of the prenatal tests beforehand. We knew we would love our baby unconditionally. Addy, as we call her, was born with an extra 21^st chromosome – she had been diagnosed with Down Syndrome (DS). Each year, 1 of every 700 babies is born with DS in the United States. Many people may not know that there are three types of Down Syndrome: Standard Trisomy 21, Translocation, and Mosaicism. Addy was diagnosed with Trisomy 21. With this type of DS, there is an extra copy of chromosome 21 in every cell. 95% of babies born with DS are diagnosed with Standard Trisomy 21 Down Syndrome.

We spent the first three years of Addy’s life working with therapists through the Barber National Institute and researching everything we could about Down Syndrome to help Addy accomplish her milestones. When I look back at those days, I have to laugh. She was so hard to motivate during her therapy sessions… until I pulled out the ice cream! Addy did not really care for toys, but she would do anything for ice cream!! Addy flew through her milestones with hard work from Addy and dedication from me and other family members working with her on her daily exercises.

Addy is currently in 4^th grade at Fairview Elementary School. She participates in a regular education classroom most of her day with the support of a paraprofessional. She is not a fan of math. That Down Syndrome stubbornness comes out for sure, but these days she’s a little easier to motivate with high fives, clapping and praise. Her love of books and reading has helped her be successful in Reading classes at school. Addy reads anything she can get her hands on and is reading on grade level. Addy loves school and loves learning new concepts. My husband and I are very fortunate that she is so successful in her education and loves to be at school so much. At the end of this year, another milestone will take place for Addy as she leaves the elementary school and heads off to middle school, with all new staff to attend to her. Is it scary? I will not lie, Garrett and I are frightened for this change, but at the same time we have confidence in Addy that she will fight hard and succeed.

As a family, we thought it was important to get Addy involved with community based programs just as we have done with our other two children. She participated in dance classes through the Dance Vibe Studio since she was four years old, dancing hip hop and ballet. She has even competed at large dance shows doing solo ballerina performances, at the Bayhawk’s half time shows and other community dance competitions. She has no fear! Addy also played soccer for three years – until she decided there was way too much running involved. This year Addy has chosen to start gymnastics. She had her first show recently and has shown a love for the sport.

As a parent of a child with Down Syndrome, it is my mission to educate others about the accomplishments and abilities of children with Down Syndrome.   These children have a potential to be successful when the right support system is put into place. These children do have futures! Unfortunately, at the moment 90% of babies diagnosed prenatally with Down Syndrome in the United States are aborted. WHY!? It is one of my goals and the goal of our local Down Syndrome Group, LEADS, (Lake Erie Area Down Syndrome group) to educate pregnant mothers, OBYGYN offices and hospital personnel about the wonderful things a baby with Down syndrome can bring to parents, family members and the community.   Our group also sets up informative meetings and playdates for our children to work on interacting and social situations. Hearing the diagnosis of DS can be scary, but at the same time it is extremely rewarding. We believe our motto: EDUCATE.  ADVOCATE.  ENJOY. My daughter is a blessing to our family, and we would not be the same without her sense of humor, stubbornness and unconditional love.

Happy Down Syndrome Awareness Day!

Created in 1996 by Camp Fire, Absolutely Incredible Kid Day, held this year on March 16^th, is a day focused on letting children know how much they are appreciated. To honor the day, adults write letters of encouragement and inspiration to the incredible kids in their lives.

Why should we do this?

A parent is a child’s first teacher and arguably the biggest influence on their children. Children who feel positively about themselves are better at handling conflicts and resisting negative pressures. Studies also show that children who feel important are well-rounded, respectful and excel in academics, extracurricular activities and hobbies and develop healthy relationships with their peers.

Even if you are not a parent, you certainly may have an incredible kid in your life. It only takes a few minutes to write a letter such as this, but the ripple effect is nearly endless.

I’d like to share with you my letter to Ryan, in the hopes that it will encourage you to write one of your own.

Dear Ryan,

I am writing to tell you what an “awesome” young man you are. I look back to when you were three years of age and so eager to learn that we worked hours at a time on our ABA drills. I was proud of you then and I continue to be proud of you today. You have grown into an independent young man who has an outstanding work ethic and an enthusiasm for being physically fit. Every day, you perform acts of kindness as you help me and others. Your dedication and efforts on a daily basis serve as a model for your peers. You have helped me to grow as well, by teaching me the importance of taking it one day at a time, of setting goals, and to always reach for the stars.

My hope for you is to continue to grow to be the best person you can possibly be. Please know that I will always be there to help you make your dreams come true.

Love, Mom

March is Women’s History Month. There are certainly numerous women throughout history that are worthy of a moment’s recognition. In the world of children and adults with special needs, I’m grateful for the contributions of these four women below, who truly have made history.

Dr. Gertrude A. Barber

Gertrude began her career as an educator and administrator in the Erie City School District. Frustrated by a lack of options for children with intellectual disabilities, Dr. Barber, along with a small group of local teachers and parents, opened a one-classroom school in the local YMCA. Today, the Barber National Institute serves over 4,000 children and adults with disabilities throughout Pennsylvania.

Helen Keller

Although an illness left 19-month-old Helen deaf and blind, she overcame these enormous challenges and went on to become a world-famous speaker and author. She is remembered as an advocate for people with disabilities, amid numerous other causes. She was a suffragist, a pacifist, and a radical socialist. In 1915, she and George Kessler founded the Helen Keller International (HKI) organization. This organization is devoted to research in vision, health and nutrition, with a mission to save the sight and lives of the most vulnerable and disadvantaged.

Eunice Kennedy Shriver

A longtime advocate for children’s health and disability issues, Shriver was a key founder in 1962 of the National Institute of Child Health and Human Development (NICHD), a component of the National Institutes of Health. In 1968, Shriver founded the Special Olympics, for which she is perhaps best known. She has also assisted in establishing numerous other health-care facilities and support networks throughout the country, including the Eunice Kennedy Shriver National Center for Community of Caring at University of Utah, Salt Lake City.

Temple Grandin

Diagnosed with autism at age 2, Grandin is a prominent and widely cited proponent of the rights of persons with autism and of animal welfare. Based on personal experience, Grandin advocates for early intervention to address autism and supportive teachers, who can direct fixations of the child with autism in fruitful directions. She is the best-selling author of many books and was the subject of HBO’s 2010 documentary, “Temple Grandin.” Most recently, Grandin was named to the Women’s Hall of Fame.

Are there any special women in history that you would add to the list?

Did you know that yesterday was “Spread the Word to End the Word” day? Begun as a website by the Special Olympics in 2008, this grew to a nationwide campaign involving schools and universities across our county, all with the goal of ending the use of the R-word in everyday language.

Many people may not consider the R-word to be a slur, but to millions of individuals with intellectual and developmental disabilities, that is what it can feel like. Language can have a huge impact on attitudes and actions.  By eliminating the R-word from regular speech, we can work on creating more accepting attitudes and communities for all people.

In 2010, President Obama signed “Rosa’s Law,” which was inspired by a Maryland woman with an intellectual disability. The bill garnered unanimous support in passing both the House of Representatives and the Senate. Rosa’s Law was commemorated in a White House ceremony with an 11-member delegation of Special Olympics athletes, leaders and self-advocates present to celebrate the milestone. Starting that year, federal agencies dropped the terms “mental retardation” and “mentally retarded” in federal health, education and labor laws and replaced them with “intellectual disability” and since then, almost every state has passed similar legislation.

By challenging others to talk, think and write with respect, we are making a noticeable and sustainable impact in ending the use of the R-word. TV networks have now banned the use of the word, and public figures are speaking out against those who might use the word.

Read some of the inspiring testimonials that were shared, or share your own, here: http://www.r-word.org/.

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 on a monthly basis stories that caught my eye.

~ Maureen

Brain scans may forecast effectiveness of autism treatment

Patterns of activity in the social brain predict how much a child’s autism features will improve after a behavioral therapy called pivotal response treatment, according to a new study. The study is small, but the findings hint that brain scans, or an equivalent technology, could help clinicians select the most promising treatment for a child with autism.

Read the full article here.

https://spectrumnews.org/news/brain-scans-may-forecast-effectiveness-autism-treatment/

Robots spark social play in children with autism

In the past couple of years, dozens of children visiting the Yale Child Study Center have played with a green and wide-eyed robotic miniature brontosaurus called Pleo. These are children with autism, who normally have tremendous difficulty communicating with other people — but they eagerly interact with the robot.

Read the full article here.

https://spectrumnews.org/news/robots-spark-social-play-in-children-with-autism/

Study links heightened stress reaction to autism-related GI problems

Chronic gastrointestinal problems are unusually common among people who have autism. Now, researchers in the Autism Speaks Autism Treatment Network report evidence that these painful issues correspond with a heightened hormonal reaction to stress. While more study is needed, the finding raises hope for more effective treatment options.

Read the full article here.

https://www.autismspeaks.org/blog/2017/01/10/study-links-heightened-stress-reaction-autism-related-gi-problems?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+AutismSpeaksBlog+%28Autism+Speaks+%7C+Official+Blog%29

Rapid brain growth in infancy may signal autism

The faster the brains of children with autism grow in their first year of life, the more severe their autism features are likely to be at age 2, according to a study published today in Nature. This rapid growth can in fact predict whether a child will later be diagnosed with autism. The findings point to a possible biomarker that could help doctors identify autism in infants —two to three years before the typical age of diagnosis.

https://spectrumnews.org/news/rapid-brain-growth-in-infancy-may-signal-autism/

Tune in next month for an update on autism research!