All About Autism

“We mark this year’s International Day of Persons with Disabilities in the wake of the adoption of the ambitious 2030 Agenda for Sustainable Development. This global blueprint for action summons us to ‘leave no one behind.’”

These powerful words by the Secretary of the U.N. serve as the framework for the 2015 International Day of Persons with Disabilities, recognized this past Saturday. My initial thought was: how does sustainable development relate to persons with disabilities? Doing a bit of research, I found that there are three dimensions of sustainable development – environmental, economic, and social. It’s in the social dimension that most of us think about inclusion.

Sustainability goes hand-in-hand with inclusion; you can’t have a truly sustainable society while excluding some from this equation. 60 years ago, persons with disabilities had no place in society. Today, while their voice is heard in all aspects of life, there is certainly room to grow.

A truly sustainable society is one in which all individuals are empowered, enabling them to take advantage of opportunities, which in turn allows them to become active and contributing members of society. It’s our responsibility to assure that all of our citizens have access to employment, health care, education, and safe housing – in other words, as our founding fathers said: life, liberty, and the pursuit of happiness for all.

What can each of us do?

We can promote awareness and support and strive to spread this positive message of empowerment throughout each of our own communities. As Van Gogh said: “Great things are not done by impulse, but by a series of small things brought together.”

One of the more recent traditions added to the Black Friday Weekend is Giving Tuesday, celebrated the Tuesday following Thanksgiving. Giving Tuesday was initiated in 2012, marking a day after Black Friday and Cyber Monday that shifts the focus from consumerism to philanthropy. The 92^nd Street YMCA in New York City, in partnership with the United Nations Foundation, established the day to connect diverse groups of people and organizations to celebrate and encourage all forms of giving.

As Americans mark this year’s Giving Tuesday on Nov. 29, students and adults at the Barber National Institute will be “giving back.”

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Adults in Barber National Institute day programs and students in the Elizabeth Lee Black School are volunteering at several organizations on Giving Tuesday, as part of a year-round focus on being active members of the community through volunteer activities.

Today, a group of middle and high school age students from the Elizabeth Lee Black School will be at senior center Brevillier Village, where they visit twice a month to play bingo and duck pin bowling with residents of the facility.  Other organizations where student volunteer include the Salvation Army, Second Harvest Food Bank, and the Soldiers and Sailors Home.

I’m so proud that developing a sense of commitment to our community is a priority in our school and in our organization, and that we foster the concept of “giving back” daily with our students and adults.

We are truly grateful that our organization receives tremendous support from the community. Because of this generosity, we are able to carry out our mission to make dreams come true for children and adults with disabilities. We hope that through our volunteer efforts, we pay this kindness forward – not just for one day, but all year long.

Thanksgiving is about gratitude. It’s about gathering. It’s not about wrapping and/or unwrapping presents. It’s about being present in our loved ones’ lives. It’s also such a uniquely American holiday. I’ve often had people at my table who weren’t born here, and who weren’t raised on this holiday, but who have come to love it because it’s about being welcomed to the table. It’s about acceptance. It’s about being invited in. That’s powerful.                                      

 ~Maria Shriver

These powerful words really spoke to me this past weekend. So, I began considering everything I have to be grateful for. I started making a list, and the list kept growing…and growing, and growing, and growing! I wanted to share a few of these thoughts with you.

• The selfless staff members who, regardless of the struggles they may experience, return day after day to support our children and adults
• The children and adults themselves, who remind me every day that life is precious
• My family and friends, who support me through good as well as challenging times
• My son Ryan, who has helped me to grow in so many ways and has taught me to look at my life as always “half full” and never “half empty”

I’d bet that if you begin making your own list of what you have to be grateful for, you too will find that your list will grow and grow as mine did!

Epilepsy is the 4th most common neurological disease after migraine, stroke, and Alzheimer’s disease, affecting about 2 million people in the United States. Characterized by recurrent and unprovoked seizures, epilepsy remains misunderstood and discriminated against by the general public, and underfunded in research initiatives.

It is estimated that as many as 1 in 3 individuals with autism spectrum disorder also have epilepsy. Experts propose that some of the brain abnormalities that are associated with autism may contribute to seizures. These abnormalities can cause changes in brain activity by disrupting neurons in the brain.

Although epilepsy can occur at any age, the condition is more likely to begin among children less than 2 years of age and adults older than 65 years. As do many who live with other chronic disorders, those with epilepsy often face challenges related to managing epilepsy treatment, symptoms, disability, lifestyle limitations, emotional stress, and stigma.

There are numerous support and research groups on epilepsy. One of the most prominent is the CDC’s Managing Epilepsy Well (MEW) Network. MEW Network members, including representatives from U.S. universities, community-based organizations, and CDC are working together to develop and test self-management programs and tools that help people with epilepsy better manage their disorder and improve their quality of life.

Each community chooses to recognize Epilepsy Awareness Month differently. In Erie, we have Paint Erie Purple, #AJO project, and Noble Night, a fundraiser by our local non-profit The Epilepsy Project.

Be sure to look for our school-wide “purple picture” on November 30th, when we will all wear purple in support of this important movement!

For more information on how you can get involved, visit these sites:

The Epilepsy Project: http://www.theepilepsyproject.org/

MEW Network: http://web1.sph.emory.edu/ManagingEpilepsyWell/

CDC: http://www.cdc.gov/epilepsy/index.html

Epilepsy Foundation of Eastern PA: http://www.efepa.org/get-involved/neam/

A mistake that is made by many who are not familiar with children and adults with disabilities is to discuss their challenges in front of them. The perception is that if someone doesn’t speak, or if someone has intellectual disabilities, they won’t understand what is being said. Very often, this is definitely not the case.

As I have discussed in the past, Ryan has had challenges with his behavior over the years. I’ve been in numerous situations with a variety of professionals who have asked me, with Ryan present, “Tell me about Ryan’s issues.” Of course, Ryan’s ears immediately perk up. He gets a grin on his face and he waits to hear what I have to say. At this juncture, I suggest to the professional that it might be best for us to discuss these issues without Ryan present. It’s not until I suggest this that the person fully understands the ramifications of talking about him in front of him.

I was reminded of how upsetting this can be to parents when I came across this article in Autism Speaks: http://bit.ly/2ffbu2d. There are some very good recommendations included here.

Both professionals as well as members of the community at large need to re-think their generalizations about people with disabilities. It’s always good to remember: when you know one person with autism, you know simply one person.

Last week was my annual PNC Grow Up Great meeting in Detriot, MI. I am honored to serve on the advisory board of this great initiative. It’s truly amazing what they have accomplished:

• More than $109 million in grants awarded since the program’s inception
• 600,000 volunteer hours in the community and a “Great Day” at PNC where over 50,000 employees participate
• Acknowledging the critical importance of vocabulary development in young children’s lives, PNC Grow Up Great partnered with Sesame Workshop to launch their Reading Adventures Digital Storybooks: Words are Here, There, and Everywhere!
• One of my favorite ventures was “We are Amazing, 1,2,3!” a story that introduces a new character Julia, a young girl with autism, into the neighborhood
• Many new projects are on the horizon as PNC Grow Up Great looks to the future

Although I can’t share any details just yet unfortunately, I am particularly excited about an upcoming project of the Sesame Street workshop that happens to dovetail with an initiative of our own this year. I look forward to being part PNC Grow Up Great as it moves ahead, expanding initiatives for young children.

I find these resources to be so helpful. Best of all, they are free to all! Please check out their many tools below and share!

https://www.pnc.com/en/about-pnc/corporate-responsibility/grow-up-great/sesame-street-learning-resources.html

Click to access words_activity_cards.pdf

Click to access WAHTE%20Final%20Cards.pdf

October is an important month – it is National Bullying Prevention Awareness Month. While it is encouraging to see communities take a stand against bullying and to make people aware of the issue, the unfortunate reality is that one out of every four students report being bullied during the school year. And while this isn’t an issue that affects only children with disabilities, studies show that these children are two to three times more likely to be bullied than their nondisabled peers. Being bullied may also lead to problems later in life; children who experience bullying are at increased risk for anxiety, depression, and other mental and behavioral health issues. (Source)

There is no doubt that these statistics are upsetting; however, there is much that we can do to bring an end to bullying!

In your community, consider planning or taking part in an event that celebrates Unity Day. Held this year on Wednesday, October 19^th, Unity Day is a chance for communities to stand united for kindness, acceptance and inclusion. Participants wear orange as a way of visually demonstrating solidarity. You may also choose to hold a local walk or run in your town. This is a wonderful, family-friendly way to show your community’s commitment to keeping students safe while at school, in the community, and on-line. The event can be accompanied by pre-and post- activities such as games for kids, speakers, music, prizes and dance.

Both at home as well as at school, you may decide to share some resources with your children to help them understand what they can do if they see bullying occur. There are a number of wonderful resources online – here are just a few to choose from!

• “You Are Not Alone” Toolkit http://www.pacer.org/bullying/yourenotalone/event-toolkit.asp
• gov offers a series of fantastic cartoon videos designed for children to learn about bullying: https://www.stopbullying.gov/kids/webisodes/
• “Project Connect” http://www.pacer.org/bullying/classroom/schoolwide/project-connect.asp
• Safe Schools’ Bullying Prevention Toolkits http://www.safeschools.info/bp-toolkit-guides

At the Elizabeth Lee Black School, teachers do a wonderful job of incorporating anti-bullying lessons into their plans during October. Students also participate in a state-wide Anti-Bullying Poster contest. This year, three of our students were the lucky recipients of the first, second and third place awards for their posters! They are on display in the Rotunda room at Capitol Hill!

Did you realize that yesterday was World Mental Health day? I did not until an email came across my desk. The overall objective of the day is, perhaps to no surprise, raising awareness of mental health issues around the world. While knowing the signs and symptoms of mental or emotional health issues is of course critical, equally as important is knowing where to get help. How common are mental health issues?

At some point in their lives, nearly half of all Americans will have a problem that affects their mental or emotional well-being. Depression, stress, and anxiety are common issues. Unfortunately, there is still reluctance to seek professional help because of the stigma attached to mental illness. However, with the right support, most people learn how to healthily manage their symptoms, successfully complete treatments, and lead a happier, healthier life overall.

In the Erie community, the Barber National Institute has helped individuals with intellectual disabilities to improve and enrich their lives for over 60 years. This commitment to quality care has become a standard of excellence the community knows they can rely on to meet their needs. This year, the Barber National Institute has expanded their continuum of care to offer a new resource for all individuals with mental health needs, the Barber Behavioral Health Institute (BBHI) Outpatient Clinic.

BBHI offers services for all children and adults with mental or emotional health issues, not just those with intellectual disabilities. These issues may include depression, anxiety, stress, bipolar disorder, panic disorder, postpartum depression, and coping with traumas or serious medical illnesses/diagnoses. Some of these services include comprehensive assessments to evaluate the individual’s needs and goals; counseling and psychotherapy; and even medication therapy that is prescribed and monitored by licensed practitioners.

If you would like to learn more about Barber Behavioral Health Institute, you can check out our webpage or contact us at 814-871-4725. For those of you not in the Erie area, this link is a great starting point to finding the best options in your community: http://www.mentalhealthamerica.net/finding-therapy.

It’s too easy to be a negative thinker these days. The headlines of the newspapers often focus on controversy and conflict in the United States and overseas. Page after page of troubling stories can make you think, “There’s nothing happy in the world anymore.” Unfortunately, turning on the news programs shows much of the same. So, what can we do?

In honor of Positive Attitude Month this October, I want to share some tips (one article referred to them as “secret weapons,” a term I love). Because being positive can improve our health and relationships with others, among other things, it certainly seems like a worthy endeavor!

• Take time to help other people, whether it is volunteering at a community organization or simply helping your neighbor. Helping others enables you to see how you personally are able to have a positive impact on the world. I can promise you that you’ll feel good after!
• Positive Thinking. Thinking positively can actually change what is possible for you …really! Replace negative self-talk with positive affirmations, for example: “I hate getting up in the morning” with “I am grateful for a new day.” Eventually changing our self-talk can lead to changes in our behavior and attitude.
• Surround yourself with positive people. You read everywhere that whom you surround yourself with will directly impact your attitude… and it’s true!

At ELBS, we’ve been embracing the Positive Attitude month as more of a year-long theme. Emotional well-being of our faculty and students is our first priority. We brought in a guest speaker to help us begin this journey. Our next step is to develop a school-wide Positive Behavior Supports plan. I’ve also begun emailing staff bi-weekly with a short note that shares a resource, quote, a book, etc., that has inspired me to work on positivity and kindness.

As we continue to dig deeper into this idea, it’s refreshing to see how many resources such as books, blogs, etc. exist to help you look on the bright side more often and more automatically. Yes, we face many challenges in our world today, but one person, one positive action, can make a difference!

Here are some great resources for Positive Attitude Month:

http://www.prweb.com/releases/2005/10/prweb302342.htm

https://www.verywell.com/make-the-most-of-positive-attitude-month-3144434

As I read that September is National Preparedness month, I began thinking about what parents of children with disabilities should be thinking about and planning for in the event of an emergency. Certainly, there are lots of different types of emergencies. One immediately considers natural disasters such as hurricanes, tornadoes and flooding. But even smaller scale events can have the feel of an emergency if you aren’t prepared. For example, often our power goes out during a thunderstorm. If it’s dark outside, the house becomes pitch black in an instant. Candles aren’t a consideration, as they are too easily knocked over. So I went out and purchased some battery-operated lights that I keep in all of our rooms. This way, instead of panicking in the dark, I am prepared.

So I thought I would share some basic tips to help families prepare and plan for “the unpredictable.”

Make a Kit – Many people may think of having emergency kits on hand at home, but it’s also good to have one at work and on for your car while on the road. Stock your kit with essential items which may include medical supplies, assistive devices, food for your specific dietary needs, prescription medicines, diabetic supplies, hearing aid batteries, battery-operated phone chargers and other medical equipment and mobility devices you may need to maintain your health, safety and independence.

If your child is sensitive to loud sounds or highly stimulating environments, you may want to include handheld electronic devices loaded with movies and games (and spare chargers), headphones to decrease auditory distractions, and comfort snacks and toys.

Medication – Aside from emergency stores of medication that you may have in your kit, make sure you have at least 3-5 days of prescription medications on hand in the event you are unable to get a refill.

Make an Evacuation Plan – If you should need to leave your home, make a plan for how to safely exit as well as where you will go.

Fire Safety – This is something that Ryan and I have discussed multiple times. He knows the old saying: “Stop, Drop, and Roll!” by heart. He also knows two ways out of every room in case of fire.

Communication – Be sure your family knows your emergency plans, including a place to reach you if you’ve left your house. Maintain a list of your essential contact numbers, not just on cell phone. Take the time to sign up for emergency emails and text messages on your cell phone from your local government alert system.

You may be thinking, “Why bother? We don’t live in an area with hurricanes/tornadoes/blizzards.” But that’s all the more reason that you should be prepared. That way, you can feel calm and in control of the situation. If you’re calm, your child will be calm.

I encourage you to watch a great video about preparedness for families who have children with disabilities as well as review other resources here: https://www.ready.gov/individuals-access-functional-needs.

I’ve also touched on other aspects of Emergency Preparedness in previous blogs that you can read here and here.