All About Autism

As December comes to a close, I always enjoy looking back at the research developments of the year. I thought I would share with you what I found to be some of the significant findings throughout 2016.

~ Maureen

In previous blogs, I’ve discussed the challenges Ryan experiences with anxiety, so I was especially interested in learning that anxiety affects those with autism differently than the general population. It’s excellent to now have a resource for physicians to aid them in diagnosing and treating anxiety in individuals on the spectrum.

https://www.autismspeaks.org/blog/2016/04/26/your-atnwork-recognizing-anxiety-children-and-teens-autism

Many of our students are prescribed Risperdal to reduce severe irritability, agitation, and aggression when behavioral therapy is not successful. Unfortunately, a common side effect is significant weight gain. This year, research revealed that a common diabetes drug can mitigate the weight gain effect of both Risperdal and Abilify.

https://www.autismspeaks.org/science/science-news/diabetes-drug-counters-weight-gain-associated-autism-medicines

Although I have reviewed the possible link between Vitamin D deficiency and autism spectrum disorder, a newly released article not only solidifies these findings but also suggests that vitamin D3 supplements may significantly improve autism symptoms such as hyperactivity and social withdrawal.

https://www.sciencedaily.com/releases/2016/11/161121110956.htm

When Ryan was first diagnosed with autism, I worked with therapists to develop and implement ABA programs in our home. Ryan worked with staff during the day, and I would implement the same programs in the evenings. I truly believe this structure and continuity 7 days a week is the reason he was able to make such great progress and thrives today. Thus, I was very pleased to see throughout the course of the year increased emphasis on parent preparation and teacher training for those who support individuals with autism.

https://spectrumnews.org/news/parent-training-may-lead-lasting-gains-autism-features/

Very often, the determination of the severity of autism is based upon the child’s verbal skills. Recent research suggests that nearly half of children with autism who speak few or no words have cognitive skills that far exceed their verbal abilities. The findings call into question the widespread assumption that children with autism who have severe difficulty with speech also have low intelligence.

https://spectrumnews.org/news/words-say-little-cognitive-abilities-autism/

Most people are aware that many people with autism report heightened sensory perception. They may be acutely aware of sounds or of people or objects touching their skin. Researchers have theorized that this feeling of sensory overload might make social situations overwhelming and challenging to navigate. A new study in mice supports this thinking and suggests that sensory sensitivity directly drives social difficulties. It also hints that treatments aimed at the peripheral nervous system — the set of neurons that connect the brain and spinal cord to limbs and organs — could ease this sensitivity and possibly even social problems and anxiety.

https://spectrumnews.org/news/autisms-social-problems-may-stem-from-sense-of-touch/

Also throughout 2016 were numerous research articles on mutations within genetic makeup that may cause autism as well as various symptoms of autism. As this research continues, I anticipate that 2017 will bring us even more remarkable findings in gene mutations that may cause autism and possible treatments.

https://www.geneticliteracyproject.org/2016/07/21/autism-in-our-dna-slew-of-studies-points-to-genetics-as-main-driver-but-there-is-no-autism-gene/

By keeping a pulse on research trends throughout the course of the year, I find that not only am I able to take what I learn and apply it to our daily practice, both at the BNI and with Ryan, but also I’m constantly made aware of how much effort and commitment our nation gives to the study of autism. When I think about the advances made in the past decade and its resulting impact on the services provided, I only wonder where we will be ten years from now. I have a feeling it’s going to be even more remarkable than the past decade!

This poem is so moving that I wanted to share it with all of you this holiday season. I hope you have a safe and wonderful holiday season!

One of our parents asked me about how to figure out what to give to a three-year-old child who has autism, and know that it will be his favorite? I thought back to my years when Ryan was a preschool child. Right from the beginning, we always said: “Jesus received three gifts from the Magi,” so he would also get three gifts from Santa, as well. I would scour the catalogs, looking for those three great gifts. The first few years, I was excited to watch him open gifts that I was sure were perfect – only to find that he was definitely not as excited as I was!

I finally came to the realization that whether I spent $500 or $5, what was essential was to identify his likes and dislikes to help guide me in picking the “right” gifts, often not the “hot toy” of the season. Twenty years later, this still rings true as I thoughtfully consider what to get Ryan. I’m thinking about a ski pass, water world pass, and …???

My advice to this parent was that the key is to figure out what your child is interested in and use that as your guide to purchasing your gifts. Of course, there are also a few sites out there that provide recommendations for parents of children with autism. I’ve included the links to some below. Any other great ideas? I’d love to hear them! Happy Shopping!

http://naeyc.org/ecp/resources/goodtoys

https://www.nationalautismresources.com/autism-toys-gifts/

http://www.cbsnews.com/media/top-10-toys-and-gifts-for-children-with-autism-picked-by-parents/

“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!