All About Autism

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.

Recently, Ryan and I had plans to fly to Chicago for my nephew’s wedding. I was concerned because Ryan had not flown in 15 years. How would he do? The long security lines, loud noises, tight spaces, and of course, the inability to leave on time… all of this had me worried, to say the least. Fortunately, he did great! He watched out the window the entire time we were in the air. However, I know air travel is problematic for many families.

I recently came across an article regarding how airports are making travel easier for autistic passengers. Sensory rooms and the ability to get on the plane last are great additions to airports and their practices. I learned that the ARC, an international group representing people with intellectual disabilities, have been working with airports around the globe to make air travel easier for these individuals. Chicago, Atlanta, Shannon, Vancouver, and LaGuardia are just a few of the airports that now offer these opportunities. At the Atlanta airport, Delta even has mock flights so passengers may simulate the experience to help them prepare. There is even an event called “Wings for Autism,” which works with airports, airlines, and transportation security administration to allow planes to taxi with participants with special needs on-board. Why is this important? Being prepared and familiar with the setting is key for individuals with special needs to having an easier travel experience.

I’d encourage you to investigate if there is a “Wings for Autism” chapter in your community and/or work with your local ARC chapter to help ease air travel. I’m going to write to our local airport municipal authority, as well as the airlines that service Erie, to see what we can do to bring these same services to our community. Why don’t you do the same?

PS – now that I know Ryan can fly, who knows what our next destination might be!!

As school starts to let out, I’m sure many of you are considering how the transition from school to summer will go. This can be a challenging time for some families – it was certainly a challenge for Ryan and I! What I learned over the years was that structure is essential and a day full of planned activities was best. To facilitate this, we would look at the calendar at the beginning of the summer and count the number of days for summer vacation. Then, we would add our activities to each day. This way, Ryan could look ahead and see what day he was going to be golfing, or going to the amusement park, or just beaching it on Lake Erie. Having a schedule helped to reduce his anxiety about what he would do the following day and reassured him that he would be having lots of fun throughout his summer vacation!

Some other tips I would recommend to help make the transition an easy one:

• Include lots of physical activity. Students get weary by the end of the school year from sitting at a desk day in and day out. Help them to release all their bottled up energy by playing outside, jogging, or engaging in team sports. Plus, it’s good for their health! We are so fortunate to have Presque Isle State Park so close to us. Nature walks, swimming, and pontoon boats are just a few of the “free” activities to enjoy.
• Communicate by talking about the changes that will be occurring soon and even consider starting a countdown to the first day of summer. The more time you give your child to prepare, the easier the transition can be. Likewise, as August neared I reached out to the school to schedule a time for Ryan to visit, meet his new teachers and see his new classroom. Giving him time to prepare and reminding him that the change was coming ensured a smoother start to the new school year.
• Although Ryan didn’t participate in any of the traditional summer camps, today there are so many more opportunities to consider. The best way to find out what’s available is get on the internet and google summer camp options in your area.

If you are looking for some additional fun ideas, two GREAT websites to take a look at are:

https://www.autismspeaks.org/blog/2015/06/11/10-fun-summer-diy-sensory-games-kids

http://www.friendshipcircle.org/blog/2012/06/20/82-summer-activities-for-families-with-special-needs/

In this graduation season, there will be many commencement speeches made around the world. I always find this time particularly uplifting – a call to look to the future, to work hard for your dreams, and to never stop trying to achieve them. Recently, a friend sent me the transcript of Emory College’s keynote address, given by renowned epidemiologist William Foege. I was so moved by it that I wanted to share a briefer version of his incredible insights with you.

~Maureen

“Lessons I am Still Desperately Trying to Learn”

Chapter 1: Obituaries

Every day we edit our obituaries. It’s not until you get older that you realize how good a life has been. Consciously, edit your obituary each day so you may realize that sooner; edit with care and gusto.

Chapter 2: Life Plans

50 years ago, everyone’s advice was to develop a life plan. Times have changed. My advice? Avoid a life plan. You enter a world of infinite possibilities, confusing ideas and continuous changes. A life plan will only limit your future.

Chapter 3: Instead of a life plan, develop a life philosophy

And then you will have tools to evaluate every fork in the road. What is truly important to you?

Chapter 4: Integrate your world of knowledge

Become globalists, concentrated on the needs of the group rather than your own needs. Be good ancestors – remember the children of the future have given you’re their proxy and are asking for you to make good decisions. Because each of us can do so little, it’s important we do our part. It may be a little contribution, but we each have to make that contribution.

Chapter 5: Actively seek mentors

Identify people who have the traits, ideas, and philosophies you want and get their help, always asking “how best to live?” Borrow their wisdom. I’m in my eighties, and I still seek mentors. Many of them much younger than me.

Chapter 6: The world is expanding

For all the problems of the world, I tell you there has never been a better time to be alive and enjoy that. An example: you have been exposed to as much knowledge in one year of college as Aristotle was in his entire lifetime.

Chapter 7: Seek equity

I avoided dying of tuberculosis, food poisoning, toxic water because of a government and much more – not because I deserved it but because of a coalition of government, religious institutions, and public and private groups all conspiring to help me, born in this country. And your story is the same. So what can we do? Seek equity and justice so others can tell that story someday.

Chapter 8: Seek serendipity

We often think of serendipity as a random good fortune, but the original story tells about three men, finding small clues that other people missed, figured out where the lost camel of Serendip (now Sri Lanka) was. We are told this can be learned by living in the moment and looking for connections. Thoreau said: “It’s not what you look at that matters, it’s what you see.”

Chapter 9: Civilization

We like to feel we are civilized, but how do we measure that? All usual measures (science, wealth, education) fail, except one. How people treat each other. Kindness is the measure of a civilized person, of a civilized university, of a civilized state. It is the measure of a civilized nation. How you treat people is the healing force in the world.

And finally, Chapter 10: Finding our way home

In the book “Cutting for Stone,” there is an unforgettable line, and may this phrase stick with you forever: “Home is not where you are from. Home is where you are needed.”

As I congratulate you on what you have done, I also hope we all find our way home.

Read the full transcript here.

Congratulations to all of the 2017 graduates!!

Last night was a momentous evening at the Barber National Institute! We celebrated the 2016 graduation with over 70 preschool, elementary, and high school students. Each of our students comes to the stage and receives their diploma. A representative from the local school district presents their official diploma to the high school graduates. We close the program with our school song, which was written by one of our teachers (Julie) and her husband Chris, members of the band Tennessee Back Porch when Dr. Gertrude Barber passed away. It has been sung at every graduation since! There were only a few dry eyes in our crowd of 400 family members and friends of our graduates!

Celebrate What’s Different, By Chris & Julie Moore

There’s a light on the shore of Lake Erie

Through the fog of ignorance it shines

Where a future awaits every child

Yours and mine, yours and mine

Building on the dream of Gertrude Barber

That for everyone there is a place

Knowing the light is always there to guide us

On our way, on our way

And we’ll celebrate what’s different

Knowing we’re all the same

The dream of school and family has come true

You will learn from me, and I will learn from you

And we’ll spread the light to others every day

And the Barber National Institute’s the way

Certainly, no one would argue that a healthy lifestyle is an important goal for all individuals, both young and old. This National Physical Fitness & Sports Month is a great time to renew your commitment to a healthy, active lifestyle. Children with special needs in particular benefit from having a healthy influence in all aspects of their life: social, physical, and mental. The participation of children with disabilities in sports and recreational activities promotes inclusion, minimizes negative behavioral incidents, optimizes physical functioning, and enhances overall well-being. Despite these benefits, children with disabilities are more restricted in their participation, have lower levels of fitness, and have higher levels of obesity than their peers without disabilities.

Four years ago, I came across an article that mentioned a program aimed at teaching adults with disabilities how to ride a bicycle. I was unaware that many adults with disabilities were never presented with the opportunity to learn this skill many of us take for granted as children.

Thus, “Learn to Ride” Bike Camp was born. This Barber National Institute camp is a four-week program designed to help children develop skills to ride bicycles independently. Bike Camp is open to any youngster in the community who is able to pedal but who has not been successful riding without training wheels.

Going into our fourth consecutive summer, it has been wonderful to see such tremendous results. Nearly all students who participate in our bike camp are able to ride their bikes independently by the end of the four weeks – those that do not have still made remarkable progress towards reaching that objective.

Not in the Erie area? This blog post from 2015 does a wonderful job of sharing some pointers for teaching your child how to learn to ride a bike:http://www.huffingtonpost.ca/joanne-giacomini/special-needs-bike_b_8312246.html

Interested in starting your own “Learn to Ride” bike camp? Contact me for tips and plans on how!