All About Autism

I am sure that all Moms must ask themselves occasionally: “I wonder why my child does that?” But for those of you who are the parent of a child on the spectrum, it is a question that we frequently ask ourselves… I know I do.

That is was why I was excited when I read a review of The Reason I Jump, which is written by a then-thirteen-year-old boy with autism, Naoki Higashida. Naoki uses an alphabet grid to construct phrases and thoughts that he previously was unable to express.

“Great,” I thought, “I might get some insight into why Ryan exhibits some of his behaviors. Perhaps, there might be some similarities.”

So, I read the book and found it fascinating. The format of the book is that Naoki answers questions he is frequently asked about autism. Some of the questions which were very relevant to me included:

Why do you do things that you shouldn’t even when you’ve been told a million times not to?

Naoki explains that often he has forgotten about being reprimanded about topic previously and feels terrible that he has, yet again, done what he’s been asked not to do.

I see the same pattern with Ryan. At times, he will exhibit behaviors that he knows are not acceptable, but repeats it again and again. He knows he should not, and he is remorseful that this has occurred.

What are flashback memories like?

Naoki tells us that he has lots of pleasant memories, but flashback memories are always bad ones. Out of the blue, Naoki may burst into tears or start panicking, which he explains is because the memory causes him to feel the same helpless feeling that he experienced then.

Recently, I wrote a blog asking Ryan the question: tell me what you remember growing up. Ryan related many negative memories and, in fact, no positive ones. I couldn’t understand why he only focused on the negative, but reading this answer gave me great insight.

Naoki says in his Afterword that he used to ask himself: what will happen to me if my autism isn’t cured? Although he used to worry quite a bit about his future, today he says: “If all of you can grasp the truth about us, we are handed a ray of hope. However hard an autistic life is, however sad it can be, so long as there is hope we can stick at it. And when the light of hope shines on all of this world, then our future will be connected with your future. That’s what I want, above all.”

That, too, is what I want, for Ryan as well as for all children and adults with disabilities.

Today is a special day at the Barber National Institute. We are celebrating Founder’s Day to commemorate the legacy of our founder, Dr. Gertrude A. Barber, and our enduring mission.

Dr. Barber’s dream in 1952 was that children and adults with disabilities would be able to learn and grow in their own community, in which they would find acceptance and opportunity. This vision has positively changed the lives of thousands of children and adults over the last 64 years and has opened doors and minds by promoting these ideals.

 I recently found a memo written by Dr. Barber in the early 90s that reflects her commitment to these principles.  I wanted to share some excerpts here; who better to tell you of our mission than Dr. Barber herself?

“I believe a leader’s role is one needing to work with legislators, schools, local, state, and federal governments. In doing so, we were able to expand community programs in Erie County, beginning a Franklin Terrace, YMCA, Boy’s Club, Hamilton School, and finally, at Lakeview Hospital.

We recognized the need and importance of establishing a linkage with media to inform the community about the growth and development of the Center. By personally working with the Department of Public Welfare and the Department of Education, we were able to show them our innovative and creative programs, which were on the cutting edge of technology.

These accomplishments were the result of acquiring an excellent staff, seizing the needs of the moment, and being prepared and knowledgeable in finance, programming, etc. I believe a good leader has the ability to foresee the needs of the present and future as it relates to the past.

Our focus has continued to be a mission of faith, hope, and love – to open the doors where they were closed – to bring sunlight where there was darkness – faith where there was despair.

Let’s always lead with a mission to open doors.”

Dr. Gertrude A. Barber, 1995

As we enter our second week of school, I find myself a bit nostalgic as I think back to Ryan’s time in school. It’s hard to believe that it has been five years since he graduated high school! I truly believe that one of the reasons he was successful in his school career was my willingness to commit to working with his teachers.

What do I mean by that? We began each new school year by scheduling a meeting with the principal to walk through his new school and/or new classroom. We took pictures of the various rooms in the building so that he would have a frame of reference when he imagined what the first days of school would be like. This was helpful because Ryan was always very anxious about change. During the first week of inservice, I would meet with Ryan’s entire team. When he was in elementary school, few children with autism were enrolled in the “typical” classroom. I saw this meeting as an opportunity to educate staff; not only about Ryan, but about autism as well.

I provided a fact sheet, “Tips about Ryan,” which identified the essential information that each teacher would want to know. For instance, very loud noises are troublesome to Ryan. He would pay attention to the sound, place his hands on his ears, and be oblivious to everything else going on in the room. In addition, I was always sure to emphasize that because Ryan’s brain functions differently than the teacher’s or mine, this impacts how Ryan would respond to classroom instructions. It’s my belief that these tips helped to make the day much smoother for both the teacher and Ryan.

I also believed it was important to meet weekly with the teacher(s) to discuss his progress and challenges. This assured consistency between home and school – a critical variable for Ryan. Looking back, I drove to his school in blizzards as well as frightening early morning meetings at 7:00 AM! I was fortunate that my best friend, Jeanne, attended as Ryan’s advocate. She was great support. I would encourage all parents to take a friend to team meetings. So much is being discussed and it’s helpful to have someone taking notes.

Whether you wish to hold weekly meetings, write letters, or any other strategy, I can’t stress enough how important it is to maintain open lines of communication with your child’s team. Because you know your child best, you are the most important member of that team.

I wish you all a great school year!

It’s hard to believe that another school year is already here. Where does the time go? Last week was a sort of “soft start” to the year, as all our staff return for a week of inservices. We were excited to introduce to them a new program for this year, Positive Behavior Interventions and Supports (PBIS). Designed to be school-wide, this system of support applies to both students and staff and works by helping individuals to use proactive strategies for defining, teaching, and supporting appropriate student behaviors to create positive school environments. As we begin to implement this with our staff, we are focusing on a trifold matrix: Be Kind, Be Safe, Be Independent. We are excited to see what impact this focus will bring, and I wanted to share with you the thoughts I read to our staff on their first day back.

~Maureen

Welcome back to the start of this 17-18 school year! Judging by the smiles on your faces, I’m sure that you all had a great summer. I’m really looking forward to the positive changes that our PBIS team will bring about this year, and I wanted to share a few thoughts of my own.

Some of you may have heard the story of how the Elizabeth Lee Black School began, but for those of you that haven’t, it began in 1952. My aunt, Gertrude A. Barber, was a psychologist for the Erie School District. It was her job to tell parents that their children could not come to the public school – their options at that time were either institutionalization or to keep their child at home. As you can imagine, neither Dr. Barber nor the parents were satisfied with these being their only choices. So, they started a single classroom for children with special needs. The teacher was a volunteer – no funding was available to pay anyone. Over the course of the next decade and beyond, this one room has expanded dramatically into many classrooms serving dozens of children.

You may not know that I began my career here in the school as a classroom aide; so I truly understand each of your roles. It is because of these first-hand experiences that I know how valued each of you are to our team.

Whether you are a therapist, a teacher, a paraeducator, or support staff, you make a significant contribution to the vision and success of our school. I hope that you believe this and feel this each day as you walk through the doors. You should be proud of your work here with us.

It was my aunt’s mission then as it is my mission today to provide the highest quality services available to these individuals. You are an integral part of that high standard – our work together ensures that we will be successful in making dreams come true for our children and their families. I encourage you to always come to me with your successes as well as your challenges. I know we are already off to a great start of the year!

Today’s blog was written by friend and colleague Luciana Randall, Executive Director of Autism Connection of PA in Pittsburgh. Lu started her career as an art education major and found many students with disabilities were included in her classrooms. Wanting to know more about how to help them, she went on to get her Master’s in rehabilitation counseling and has remained in the field ever since. She has been teaching and training professionals about autism, the brain, behavior, and communication since 2002. 

I hope you find her blog as insightful and enjoyable as I did!

~Maureen

New TV series about autistic characters are all the rage. My autistic friends and autism parents are so “over it” already. “Who is going to make a show about my son who is 11 years old, still in pull-ups, not talking, and stimming?” or “Where am I – an autistic, female, degreed professional?” Current shows tend to feature talking, white, heterosexual, young adult males – leaving out a huge chunk of our population who then feel further marginalized and unrepresented. To help prevent this, we can try every day to put autistic people in the driver’s seat, or in this case, the writer’s or director’s seat, in showing and telling their own narrative.

Lu teaches about autism as part of her role as Executive Director

Recently I’ve been given a soapbox (idiom alert! – a location from which to speak about what’s on my mind to a large group of people*) at the Barber National Institute, to talk about autistic culture and help workers do their best with this population. I always feel a lot of pressure to do right by autistic people. Instead of searching Google for articles to prepare my talk, my very first request was to my autistic colleagues – “I want to represent you correctly. Please send me your favorite videos about autistic culture.” Everything they sent me was first-person video. Nothing came from popular media! You can see these on the links below. But to summarize:

Autistic people** want to convey some important aspects of their culture. They are:

1. Autism is a natural occurrence, not a disease, and not always causing disorder
2. Society creates disabling conditions when it cannot or will not accommodate differences. “Disabled person” can be one acceptable term, because it tells that people are disabled by outside forces; they are not inherently flawed.
3. Autistic people manage their bodies and their stress in unique ways. Some cover their ears if things get too loud, other flap their hands to express excitement or nervousness, others type or sleep or hum or talk to themselves, or hang out with their cats or stuffed animals – self regulation and self-soothing take many forms. Neurology and brain part shapes and sizes vary widely in autistic brains, which result in behaviors that may look unusual but are perfectly normal. As long as the behavior is not hurting anyone, allowing expression is the most respectful thing in the world. Imagine being home in your pajamas with one leg thrown over a chair, watching TV. What if someone constantly said “BOTH FEET ON THE FLOOR” “STOP TWIRLING YOUR HAIR” “STOP CHEWING GUM!” all day and night? That would be so offensive and belittling. So let’s try to let autistic people “be” in their own homes, for starters.
4. If we are non-autistic, our inability to understand autistic body language or sounds could easily be seen as our disability! Not understanding an autistic person’s thinking can be a theory of mind deficit on the part of non-autistics. But we always make it the other way around. Is that really fair? I don’t think so.

Let’s try to meet in the middle, putting autistic people** in charge of teaching and telling, not relying on a TV network or a scientist’s article, and learn awesome new things about others, and ourselves. Here are the recommended videos to get you started: (yes, popcorn may be required for your viewing pleasure). Enjoy!

*When communicating with autistic people, be aware of your use of confusing figures of speech like this one. It’s okay to use them, but give the definition.

** The use of the term “autistic person” may seem different to you especially if you were trained in helping professions or journalism and were forced to use “person first” language. For most autistic adults, this is their preferred term. So I tend to use that.

Links referenced above:

How to be an ally to autistic people: https://www.youtube.com/watch?v=JsllOQeWqNg

What is stimming? https://www.youtube.com/watch?v=WexCWZPJE6A

https://www.youtube.com/watch?v=ysdPfRHE7zw Autism as a language, no words until translation and captions are at 3:14.

As this past Sunday was Friendship Day in the US, I wanted to share a few of my thoughts about friendship. Friendship can be a challenge for children on the spectrum. From my personal experience, Ryan sadly had no friends during his years at school. I often thought, “Wouldn’t it be wonderful if someone would invite him to their birthday party?” Unfortunately, that never happened. Ryan preferred the company of adults. I think that was because the adults would take the time to listen to him when he would speak in a rapid manner and would wait patiently for him to him to formulate his thoughts. I think that these adults recognized the importance of kindness more so than Ryan’s peers.

In a perfect world, parents and teachers would emphasize the importance of being kind, particularly to peers who may seem “different.” Truth be known, children are more alike than they are different, regardless of their disability. Since Ryan graduated, I do think there is much greater emphasis in the schools and in the community on acceptance of children with disabilities. We have come a long way, but I know the journey continues!

If you are the parent, educator, or even an acquaintance of someone with disabilities, you can support that person in their quest for friendship in a number of ways.

• Be patient when the person speaks. It may take him/her longer to express a complete thought. Auditory processing difficulties are present in many children.
• If you are the parent of a typical child, it’s essential to have conversations about some of the specific characteristics of a child with a disability and that there’s no reason to be fearful of him or her.
• Communicate clearly, in short sentences, with a reasonable pace and volume. If the child is non-verbal, you may want to use a picture or a communication board.
• Try to create social opportunities for your child by inviting others to his or her preferred activities
• Investigate the Best Buddies program. If there is not a chapter at your school, consider working with administration to start one. Ryan participates in ebuddies, and thoroughly enjoys emailing his buddy. In fact, emailing is his preferred method of communication with others, and he has quite a few “conversations” going at any time!

Any tried and true tips you’d like to share? Send them my way!

It was July 26, 1990: At the invitation of President George H. Bush, Dr. Getrude Barber had traveled to Washington, DC to witness the signing of the Americans with Disabilities Act (ADA). This was a momentous occasion for her because she remembered well the year 1952 when no services were available for people with disabilities and they were relegated to institutions across the country. That year, when she started the first program, she served 15 students. As of today, the Barber National Institute serves 5,300 children, adults and families with special needs!

President Bush signs the historic ADA.

Over the years, she was a strong advocate for inclusion of persons with disabilities in the community, in schools, and in all aspects of life. She shattered numerous “glass ceilings” in her lifetime, but July 26^th was the pinnacle of her efforts. Little did she know, her great nephew would be born in 1993 with autism. He would become the beneficiary of many programs and services that were developed as a result of her advocacy.  I can’t imagine what Ryan’s life would have been like without these supports.

For me, the anniversary of the ADA signing is also a day that I reminisce about the many outstanding accomplishments of my Aunt Gertrude. I’m continually awed by how much she was able to achieve in a very short period of time. She would be pleased to see Ryan’s many successes as well as the on-going growth and progress of the Barber National Institute!

I recently read an article in which a young man with autism discussed what he’d like other people to know about autism. I wondered if I posed that question to Ryan, what would he say? What surprised me were his responses. It started in a manner that I expected; his first comments were about stimming. Children with autism like to stim, and Ryan is certainly no different. He described how he waves his fingers as a stim that allows him to relax and feel calm. He could even recall that he began this stim at three years old, which I thought was remarkable.

From there, he turned to school – admittedly, this was a difficult time for us both. He did remember a principal from middle school who was exceptionally kind to him. However, I did not expect him to focus on many of the challenges he’s faced. Some were so long ago, even I had forgotten them! Yet he remembered the date, the location, and exactly what occurred. Frankly, I have always thought he’s had many, many more accomplishments than difficulties.

I am first and foremost a believer in the power of positivity. I strive, both at work and at home, to create a positive atmosphere and deal with challenges in a positive manner. This conversation reinforced my belief that each of us should strive to make every interaction, when possible, a positive one. We never know how strongly, or how lasting, an experience can be for a person emotionally, whether they are typical or not.

I am grateful for this (unexpected) lesson from Ryan… and amazed at how much he teaches me every day!

Ryan, at a Notre Dame game in Sept. 2016

Recently, I gave a presentation to our board of directors on our Adult Basic Education (ABE) program. The board was so interested in learning about the program that I wanted to share with my readers, as well! As the only special needs program of its kind in Pennsylvania, our ABE program offers essential and basic skill development for adults 18 and older with intellectual challenges and learning disabilities. Because the program is grant funded through the PA Department of Education, students are able to attend at no cost to them.

Personally, I believe that what makes the program so successful is its individualized approach to meeting each student’s vocational, social, professional and/or educational goals. After enrolling, teachers and coordinators in ABE work with a student to provide orientation, counseling and assessment services that help determine the appropriate level and type of instruction that will most benefit the student. The math and reading curriculums used in the classroom offer a variety of levels to not only begin at the right level but also to help the student continue to develop his or her skills.

This includes a literacy program, which focuses on helping students learn to read. Additionally, ABE helps adult learners become more successful in the workplace by collaborating with job trainers and supervisors.

The classroom is run as a centers-based environment; teachers set up “centers” around the classroom, each one focusing on a different component of that day’s lesson. For example, on a “Reading day” the centers might be: fluency, comprehension, spelling, technology, and a reading skill. This one-on-one learning helps to ensure that the student is fully successful.

Technology is also widely used in lessons via online educational programs as well as iPads, which help to expand and maintain educational skills.

When it fits in with a lesson unit, ABE will frequently ask members of the community to come in and present an informal lesson on the subject. Visitors have included a local weather forecaster presenting on weather and seasons, and a credit union representative discussing budget and finance.

Meet the Students!

Walter

Walter is in his early 80s and originally from Mississippi. When he first came to the ABE program in June 2015, he was lacking any type of formal education. He enrolled because he wanted to be able to write his granddaughter a letter.  Using ABE’s assessment tools they determined he was at a Fluency level 3.5 and a Comprehension level 3. By June 2017, Walter had risen to a Fluency  level 4.5 and a Comprehension level 7!! Walter not only achieved his goal of writing his granddaughter a letter, but also got his first cell phone, learned how to use a calculator and a computer, and successfully completed the softball umpire exam and his umpire registration!

Chris

Chris, who is in his early 20s, became part of the ABE program during the 2015-2016 school year. At that time, he had a comprehension level 4; in a little over a year, Chris was learning at comprehension level 6! Not only did Chris make significant academic gains he has also joined the work force and is now an employee of Giant Eagle.

The Annie E. Casey recently published its 2017 Kids Count Data Book, an annual review of how America’s children and families are faring across the United States. The study uses four indicators, economic wellbeing, education, health, and family/community, to measure the status of a child’s overall wellbeing. The results are a state-by-state report and ranking.

I, of course, was mostly interested in Pennsylvania and our ranking. Overall, we rank better than the nation in the metrics of economic wellbeing, including children who live in poverty, children who live in a household with a high housing cost burden, and number of teens who are not in school nor are working. We are also at or below the national averages that measure health; which includes the number of children without health insurance and child/teen deaths.

Although we remain below the national averages for both education and family/community, our rank has declined (albeit slightly). All in all, Pennsylvania is ranked as 18^th out of 50 states.

Top 5 ranked:

1. New Hampshire
2. Massachusetts
3. Vermont
4. Minnesota
5. Iowa

Bottom 5 ranked:

46. Arizona
47. Nevada
48. Louisiana
49. New Mexico
50. Mississippi

Obviously there are distinct regional patterns that emerge from the state rankings. Northeastern states compose half of the top ten, while states in the south east, south west, and Appalachian have the bottom rankings. Perhaps one of the most important correlations in mapping this out is that these low ranking areas are also where states have the lowest household income.

Intrigued by these statistics, I dug around for some numbers for Erie. I was shocked by my findings, to say the least. According to the most recent statistics available, the city of Erie’s poverty rate for children was 38.2% – for children younger than 5, a staggering 46.7% live in poverty.

The Casey foundation suggests a strong push towards eradicating child poverty, stating: While all indicators are important, the child poverty rate demands immediate action given the role that economic hardship plays in nearly every other indicator.”

Certainly, Erie’s numbers reflect the need to make this a priority as well. With the mayoral race this November, I plan on contacting the candidates to urge them to speak out about their plans to eliminate poverty in our community. Regardless of where you live, this is a serious issue that demands national attention. In past blogs, I’ve talked about how by investing in our children today we are investing in our country’s future – lower poverty rates are directly linked to decreased health and criminal justice expenditures and increased economic output. Working together, we can change the outlook for America’s children.