All About Autism

Are you an avid reader? If you are like me, one of your favorite activities on a quiet day is sitting down with a good book; or as I should say nowadays, sitting down with my iPad and iBooks store! So, it should be no surprise that I was thrilled to learn that May is “Get Caught Reading Month,” a nationwide campaign to remind people of all ages how much fun it is to read! Get Caught Reading began in 1999 to encourage people of all ages to read – and that reading can be fun!

Unfortunately, 44 million adults in the US can’t read well enough to read a simple story to a child. And literacy is directly tied to success later in life: children who have not developed some basic literacy skills by the time they enter school are 3 to 4 times more likely to drop out in later years.

I started reading to Ryan when he was only two days old. As he grew from an infant to a toddler, he too had his favorite books that we read so frequently the pages were scotch-taped together!

Here at the Elizabeth Lee Black School, we celebrated National Read-a-Thon day by having our early childhood students join together in the library to read The Doorbell Rang. One of our teachers read, while another signed the story. It was certainly a fun time for all! If you are interested in participating in Get Caught Reading month, here are just a few ideas:

• Dedicate a half hour each day to reading and call it “Get Caught Reading Time.”
• Set up a Get Caught Reading event in your community, and invite local radio and television personalities and other community figures to read aloud to children.
• Set up a club where children and adults read the same book and compare their feelings on it

If you have other creative ways to get involved, I’d love to hear your ideas!

Some people think of the lazy days of summer, but at the Barber National Institute, we’re actually busier than ever! Over the years, we have initiated a number of programs during the summer to ensure that educational opportunities don’t end on the second week of June for children with special needs.

Happy Hearts Childcare

Working moms and dads don’t have the summer off to play with their children. Happy Hearts offers childcare early morning through late afternoon for ages 3-5. Weekly fieldtrips, swimming, and lots of fun activities ensure kids have a great time!

Early Intervention

Ideally, children with developmental delays benefit from year-round education. At BNI, we offer a summer component with short breaks so that the children do have a “summer vacation” but not the traditional 3 months of summer. The children continue to receive education, speech therapy, physical therapy, or whatever service they need while in session.

Extended School Year (ESY)

For children 5-21 with disabilities, a summer program is offered during the month of July to assure that children do not lose skills that they have spent the whole school year building. Whatever services are requested on a child’s IEP are continued throughout ESY.

Camps

BNI offers three distinct camps:

Camp Connections is a full-day camp for children with a diagnosis of autism who struggle with social skills among peers.

Camp Shamrock focuses on development of recreational skills for children with disabilities.

Expanding Social Opportunities (ESO) Camp is similar to Connections, but is offered to young adults 18 and over with intellectual disabilities.

Did you know that May is Mental Health Awareness Month? It was surprising to me to learn that one in four Americans live with a mental disorder. Fortunately, today’s society is more aware and accepting of mental health issues than ever before. Still, greater support is needed. President Obama’s recent statement reflects this sentiment:

“During National Mental Health Awareness Month, we recognize those Americans who live with mental illness and substance use disorders, and we pledge solidarity with their families who need our support as well. Let us strive to ensure people living with mental health conditions know that they are not alone, that hope exists, and that the possibility of healing and thriving is real. Together, we can help everyone get the support they need to recover as they continue along the journey to get well.”

Providing mental health services benefits not only individuals but also the workplace. A recent example stated that depression costs over $50 billion in office absenteeism. This statistic tells us the importance of wellness programs in the workplace. Accessibility to such programs, as well as feeling comfortable and supported in the workplace is a win-win situation for both employee and employer.

I’m pleased to announce the opening of the Barber Behavioral Health Institute
at Northgate Commons in Erie, PA. The Institute is designed to offer services to all children and adults for mental and emotional health issues, including depression, anxiety, bipolar disorder, panic disorders and phobias, and more. The range of services includes comprehensive assessment, counseling and psychotherapy, and medication management.

Recognizing that nearly half of all Americans will have a problem affecting their mental or emotional well-being at some point in their lives, we are pleased to provide quality support to help people learn how to manage their symptoms and successfully complete their treatment.

Last week, I had the opportunity to visit our Corry Pre-K Counts program, which is located at the Corry Primary School. We are fortunate that we have been funded for the last several years to offer a Pre-K Counts program in both the cities of Erie and Corry, PA. Pre-K Counts, established by Governor Rendell in 2007, offers quality pre-kindergarten opportunities to at-risk children and families across the commonwealth.

The decision to offer this program was a strategic one. We know that a good quality of life, high-quality jobs and a strong economy requires a strong early education foundation. Early education can open the doors of opportunity for every child to do well in school, in the workforce, and in life. Our own statistics support this theory.

I’m constantly reading research and articles that support this approach and only wish that funding was available to expand Pre-K Counts opportunities for all young children. Initiatives supporting quality early childhood education are surfacing across the country. I recently learned that Cleveland has developed a comprehensive plan to transform the district delivers education to its 40,000 preschool children.

As with any major policy shift, we must generate support from the all stake holders: the community at large, business leaders, policy-makers, and legislators to make this happen. Pennsylvania has begun this process – let’s continue to move ahead to ensure quality childhood education for all our children!

After reading Maria Shriver’s touching Mother’s Day tribute I began to reflect on what, exactly, “Mother’s Day” means in the year 2016. I think we could all agree that the days of June Cleaver and the nuclear family have evolved into something much more complex. Today, we have single moms, two moms, dads acting as moms, and women who don’t have children but are considered a mother to many. Regardless of how we define this relationship, the love between “mother and child” is deep and unconditional.

With this last description, I think mostly of my Aunt, Gertrude Barber. Although she never had children, she saw herself as a mother figure to hundreds of children who passed through her doors at the Barber Center. Certainly, Mother’s Day had a special meaning for her.

Long before Ryan, my own mother always surprised me with a Mother’s Day gift because I was helping so many children. I’ve continued that tradition with Aunt Jeanne, a long-time friend and former colleague who has been Ryan’s special aunt and advocate since the day he was born.

I know we all recognize that it’s not the card or the gift that makes Mother’s Day special for each of us – it’s the love that we share with our children.

Happy Mother’s Day!!

PS – Ryan’s 2015 mother’s day poem still brings tears to my eyes! I read it each year!

May is Children’s mental health month, a time to shine a light on mental health and mental illness, as well as treatments and services that are available in your community.

At the Barber National Institute, I consider one of our greatest mental health resources the children’s partial hospitalization program. Back in 1998, we realized that a number of our children had both intellectual disabilities as well as mental health disorders. We determined a program was needed that could help to reduce challenging behaviors through a combination of behavioral treatment, pharmalogical management, and changes in environmental structure.

We planned to provide functionally-based intensive intervention in the areas of communication, self-help, and social and emotional skills, thereby facilitating age-appropriate interactions. We would also provide parents with information in training in the effective methodologies to minimize the impact of the disorder on the family. We applied and secured our initial license to offer a children’s acute partial hospitalization program, becoming one of the first school-based partial programs in Pennsylvania.

Our current program serves students who are enrolled in our approved private school. Following referral and acceptance into the program, a psychiatrist observes the student and consults with staff on a weekly basis. A clinical psychologist and mental health specialists are also part of the classroom team. Every 15 days, the psychiatrist and team members meet with families to update them on the student’s progress as well as to discuss any concerns in the home. When the student has met the treatment goals, a discharge plan is developed with the family to assure the continuity of supports, both in the school and at home.

This program has made an invaluable difference for both our children and our families. In most cases, in-patient treatment is avoided and the children are able to remain at home with their families. Although our numbers are small (only 20 children are served at any given time through MH Partial) the intensity of the services yields very positive results. We plan to continue this component of our approved private school program as long as the need exists.

As you continue through the month of May, know that there are resources available to you or a loved one, both in your community and online. Below, I’ve shared some great tools from the National Council of Behavioral Health. Please share other great resources you may have below!

http://www.thenationalcouncil.org/mental-health-month/

In Erie, May is usually when we start to believe spring is really here. After the last few weeks of temperatures in the 30s every morning, I can’t wait! As we were having dinner last night, I commented to Ryan that “FINALLY, we’re beginning to see buds of future leaves on the trees in our backyard!”

Spring is much more than warmer temperatures and blooming flowers. I think we all find ourselves reflecting on the idea of “new beginnings” this time of year. There is something about looking outside and seeing new life that makes each of us want to reorganize, recommit, and refocus on growth.

As I take the month of May to reflect on areas in my life I want devote focus and energy to, I can’t help but think of Maria Shriver’s recent blog, “The Power of Internal Strength.” In it, she shares her powerful message that right now her focus in life is to “build herself up from the inside out.”

My challenge to you this month is to join me as I focus on my internal strength, not just in my body, but in my mind and in my spirit as well. As Maria says, “If you are strong on the inside, you can be a better person, a better parent, a better professional. You can give back because you have given to you, and now you can start from a place of strength.”

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

Recognizing Anxiety in Children and Teens with Autism

Research has long shown that people with autism have high rates of anxiety disorders. Research also suggests that anxiety tends to have different causes and symptoms in those affected by autism than it does in the general population. For these reasons, the Autism Speaks ATN prioritized the development of the diagnostic and treatment guidelines that became part of a special ATN/AIR-P supplement to the February issue of Pediatrics.

Read the full article here.

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

Brain Scans Could Diagnose Autism Sooner

                A study has found that brain scans may soon be able to assist in earlier diagnosis of autism in boys.  Researchers have been able to identify signs of autism in the images – which can be used to diagnose the disorder and measure its progression. They found boys with autism have changes in the part of their brain that controls social perception – that is, being able to understand a person’s facial expression and tone of voice. In future, the scans could diagnose children at an earlier age, providing treatment when it is most effective.

Read the full article here.

http://researchautism.net/news/article/10489/

Autism Costs More than Double with Age

State spending on adults with autism is dramatically higher than for children, according to a new analysis that may offer hints of what’s to come as more people on the spectrum grow up. In a study looking at per-person spending on autism services in California, researchers found that the state is shelling out roughly $26,500 on average for each adult annually. By comparison, costs for those under age 18 are averaging about $10,500.

Read the full article here.

https://www.disabilityscoop.com/2016/04/19/study-autism-costs-double-age/22200/

Prevalence of Autism Spectrum Disorder Unchanged in New CDC Report

A new CDC report finds the prevalence of autism spectrum disorder largely unchanged from two years ago, at one in 68 children. Rates have been rising since the 1960s, but researchers do not know how much of this rise is due to more children being diagnosed with ASD or if actual cases are increasing, or a combination of both. The CDC’s first prevalence report, which was released in 2007 and was based on 2000 and 2002 data, found that one in 150 children had ASD.

https://www.sciencedaily.com/releases/2016/03/160331154247.htm

Tune in next month for an update on autism research!

Dr. Gaston has been visiting the Barber National Institute for over 3 years. He consults with various classrooms to assist in problem-solving adaptation issues. Sounds great, but what does that mean? Dr. Gaston works with each of our students with physical challenges to help them be as independent and mobile as possible. He does this in a variety of ways. For example, Dr. Gaston may position students in chairs to maintain posture or add a wedge beneath a student’s arm or head to improve eye-hand coordination, just to name a few of his many techniques. These adaptations may seem small, but they enable the student to complete worksheets, use the iPad, work on puzzles, etc.

What’s fun about his visit is that he stops by to introduce us to his new products. He is more than willing to allow us to try out his new items, and he gives us samples of any product we request. Additionally, Dr. Gaston will consult with teachers and therapists on how a piece of equipment that has already been integrated into a classroom is developing and if we need to consider a next step.

Learn more about Grip Solutions at his website here.

Products from Grip Solutions

I was thrilled when Senator Bob Casey agreed to be a guest blogger for Autism Awareness month during his recent visit to Erie and the Barber National Institute. His tireless efforts in the Capitol have made such a wonderful impact. I’m honored to share his words with you today. 

~ Maureen

Eight years ago, a group of parents came to Congress, asking for help with a pressing issue- adequately saving for their children’s future.  Among these parents was a gentleman named Steve Beck, who knew firsthand the challenges many families face when a loved one has a disability.  Faced with a lifetime of extraordinary expenses, parents are told not to save or put assets in their child’s name. Thanks to Steve and other countless parents, we were able to change this dynamic with the passage of the ABLE Act.

Senator Casey

This law will impact many individuals. One person is a woman named Sara Wolff. Sara is from my home county of Lackawanna County. She is someone who has a disability but is very able. She is a law clerk, a well-known speaker and a dynamic person who is an inspiration to many, including me. And in this month, when we celebrate Autism Awareness Month, I want to commend the dedication and commitment of people who are, to borrow a phrase from the Bible, like ‘laborers in the vineyard’ fighting battles on behalf of those who have disabilities.

Throughout my time in public office I have worked to improve and expand opportunities for people with disabilities, and to support those with disabilities such as Autism throughout their lives.  In caring for and supporting people with disabilities we must ensure they have access to support services and a health care workforce that allows them to achieve everything they wish to and can achieve.

Thanks to the continued hard work of disability advocates and families, we are seeing widespread adoption of state implementing legislation—the vast majority of states have enacted laws to pave the way for the opening of ABLE accounts. I’m especially pleased that the Pennsylvania General Assembly passed and the Governor recently signed implementing legislation so that families across the Commonwealth can soon begin to open ABLE accounts. Shortly before the ABLE Act was passed by Congress in 2014 Steve Beck passed away suddenly and unexpectedly. The progress of the ABLE Act in so many states is a testament to his vision and tireless advocacy.

The ABLE Act is grounded in a simple but vitally important belief—that people with disabilities have a lot of ability. That they can not only contribute substantially to our quality of life and the success of our nation, but if we give them some tools, they can lead as full a life as possible. That’s the belief that has guided us in this effort.

Autism Awareness Month stresses the need to recognize, understand, and study autism. We need to continue our research efforts to understand the causes of autism and look at ways to help individuals reach their full potential. I look forward to joining you in those battles along the way.