All About Autism

October is National Physical Therapy Month! As I considered possible blog topics, one of our physical therapists, Christina Gross, PT, MS, forwarded me an excellent article about the current research regarding physical activity and children with ASD. The article reviews recent evidence that suggests that childhood obesity is increasing among children with developmental disabilities, including ASD.

Some key points include:

• There are 3 potential factors contributing to obesity in children with disabilities:
  • Low physical activity – Children with disabilities are less likely to engage in and sustain in exercise, when compared to their typical peers. However, limited physical activity levels can also be attributed to their impairments in their communication, sensory, and behavioral domains.
  • Poor nutrition – Children with ASD demonstrated a more limited food repertoire and may have oral, olfactory, and gustatory hyper-sensitivity, leading to aversions of foods of certain textures and smells.
  • Medication use – Some psychoactive drugs, including anti-psychotics, anti-depressants, anti-anxiety drugs, and stimulants, often lead to weight gain.
• Children and adolescents with ASD may not understand long-term risks associated with obesity. Their parents, often burdened by the challenges of autism, may neglect physical activity and nutrition.

For a more in-depth analysis of their findings, read the full research article here.

Health, wellness, and a fitness regime are essential components of all children’s lifestyles. Physical therapists are integral members of the team when developing these programs for children with disabilities. We are so lucky to have our physical therapy staff:

Chris Gross, P.T., M.S.

Vincent Massella, P.T.A.

Marsha Nevinsky, P.T., B.S.

Thank you all!!

Next Wednesday is Unity Day, a chance for schools and communities around the country to come together to take a stand against bullying. I have shared some startling statistics on bullying in the past (see: cyberbullying and unite against bullying), but unfortunately bullying continues to be an issue, in schools and online. Bullying does not target only certain types of people – on the contrary, bullying can affect both men and women of all difference races, nationalities, shapes or sizes.

Recently, Senator Bob Casey wrote:

According to the Department of Education, nearly one in three students between ages 12 – 18 are affected by bullying and harassment. Studies show that the effects of bullying have long-term consequences, including decreased concentration in the classroom, increased absenteeism and lower student achievement. While the federal government supports states and school districts in promoting school safety, there is no current federal policy that comprehensively and explicitly addresses issues of bullying and harassment.

During floor consideration of the Every Child Achieves Act in July, Senator Al Franken introduced the Student Non-Discrimination Act as an amendment. The amendment sought to protect students from discrimination and harassment on the basis of actual or perceived gender identity and to provide protections for LGBT students similar to those that already exist regarding discrimination based on race, religion, and gender. Unfortunately, the amendment did not receive the 60 votes necessary for passage.

Introduced on January 29, 2015, the Safe Schools Improvement Act would require schools and districts receiving designated federal funds to adopt codes of conduct specifically prohibiting bullying and harassment, including conduct based on a student’s actual or perceived race, color, national origin, sex, disability, sexual orientation, gender identity or religion. The Safe Schools Improvement Act would also ensure that schools and districts implement programs to prevent and respond to incidents of bullying and harassment.

It is encouraging to know that our government is working to address this issue, but it doesn’t have to end there. Unity Day represents something important – a chance for people to stand up and work together as a community to bring an end to the cruelty and harm of bullying.

At ELBS, our high school students will recognize this day by taking part in various activities that illustrate how to identify when a person is being bullied, peace makers and peace breakers, and positive things to say to a friend. We will also be encouraging students and staff to wear orange in honor of Unity Day.

For more information, visit the National Bullying Prevention Month website here, and consider signing up to take part in Unity Day in your community as well!

As October is National Down Syndrome Awareness month, I thought it would be the perfect time to share some of the many resources available to our communities. Take a look and share – together we expand awareness and understanding!

• Down Syndrome Information Alliance – http://downsyndromeinfo.org
• National Down Syndrome Congress – http://www.ndsccenter.org/
• National Down Syndrome Society – http://www.ndss.org/
• Global Down Syndrome Foundation – http://www.globaldownsyndrome.org/
• Down Syndrome Group of Erie County – http://downsyndromeerie.org/
• Lake Erie Area Down Syndrome Society – https://www.facebook.com/Lake-Erie-Area-Down-syndrome-Society-LEADS-1515245758730241/timeline/

Each of these groups has a plethora of resources, events, and other information about how to get involved and stay informed. Anything I’ve missed? Please feel free to share below!

This Saturday, October 10^th, we will be observing World Mental Health Day, with the theme of “Dignity in Mental Health.” The World Health Organization is be raising awareness of what can be done to ensure that people with mental health conditions can continue to live with dignity, through human rights oriented policy and law, training of health professionals, respect for informed consent to treatment, inclusion in decision-making processes, and public information campaigns.

The BNI Elizabeth Lee Black School began serving children with mental health challenges and intellectual disabilities in the early 90s. We had identified the need for expanded psychiatric services as well as the addition of a mental health component in some of our classrooms. We applied and were approved for a license to serve 20 school-aged children with dual diagnoses of an intellectual disability as well as a mental health disorder.

This is a challenging population to serve, especially in the areas of coping skills and social skills. These students are often the most behaviorally and emotionally challenged, and have not succeeded in their home school district as a result.

Students enrolled in our Approved Private School participate in our Mental Health Partial Hospitalization program if their Individualized Education Plan indicates this level of need. In addition to their classroom program, the children receive psychiatric services, intensive ABA behavior support, and an extensive physical health and fitness program.

Over the years, the BNI has expanded services in the area of behavioral health for both children and adults. Some of the other services include:

• Blended Case Management – help to access resources in the community
• Behavioral Health Rehabilitation Services (BHRS) – change problem behaviors in the home, school & community
• Family Based & Structural Family Therapies – work to stabilize family environment and improve family communication and structure
• Childhood Trauma – treat behavioral problems relating to traumatic events, grief and loss
• Connections Camp – summer program for children/teens with high-functioning autism
• Social Skills Training – strategies for building social communication skills

To meet the ever-increasing need for mental and behavioral health services, the BNI is planning to open an outpatient clinic, Barber Behavioral Health Institute, in the Spring of 2016. We are excited for this venture, and hope that it will meet the needs for so many more in our community.

As I was reading some articles about World Teachers’ Day online, I stumbled upon this article below. I was simply overwhelmed by what I saw. It’s one thing to read about cultural and economic differences in schools, but it was much more powerful to actually see a picture. As they say, “A picture is worth a thousand words.” These photos certainly highlight the privileges that children in the United States enjoy. We can get so caught up in focusing on the areas in education we should improve upon that we take for granted what we already have that others do not. I hope you find the article – and photos – as fascinating as I did.

Read the full article here: http://bzfd.it/1VDcNm0

~ Maureen

Vietnam

Afghanistan

Pakistan

Afghanistan

Burundi

While perusing some articles, I came across this very compelling story. I had several initial reactions. The first was my concern for the mother and son who were placed in this unfortunate situation. Secondly, I felt sincere shock that a situation like this is still occurring in 2015. As actor Kelvin Loh says himself: “…When did we as theater people, performers and audience members become so concerned with our own experience that we lose compassion for others?”

Of course, parents are having similar experiences in many venues, church, the grocery store, amusement parks… the list is endless. I, too, have been the mom who felt pressured to quickly exit a room full of people who were staring at us, all because of Ryan’s perceived “disruptive” behavior.

There’s a lot of talk about inclusion, being judgement-free, being patient and understanding, but articles such as this lead me to ask – are we really practicing what we preach? I have mentioned before our joy over the Erie Playhouse’s sensory-friendly theater performances, which are wonderful platforms for local families. But eventually, most of us will be faced with social interaction that is not customized. What then?

Actor Loh says that he feels that the mother of this son was brave to be willing to bring her son into the theater, and I couldn’t agree more. My call to action is to ask the audience members to be brave, too. Whether it is standing up for a family being treated unfairly, or being patient in a public place if you notice there is a family having a struggle. Showing consideration and understanding in the situation can lead to a change in perception. One person can lead to tens to hundreds. Stand up for this cause!

News from Home device

News from Home is a communication program that ELBS has recently integrated into its curriculum. In March of 2014, we sent families a survey to gauge their interest in utilizing a device that would facilitate communication between school and home regarding their child’s therapy sessions, daily events, or other activities.

Of course, there was a great deal of interest, and that year we had 25 students participate in our first News from Home program. Today, 86 children and their families are using News From Home!

Student Angelina loves News from Home!

To explain how this works, students use a single hit, pre-programmed device (see picture above) to help their therapist, teacher, or other classroom staff record a short message about the student’s day or therapy session. In return, a parent or other family member records a message about how the evening at home.

News From Home is often used during circle time, morning meeting, or other group activity setting. It is yet another way for the students to engage socially with their peers. You should see the smiles on the children’s faces as they listen to the message from their parent! For children who are verbal, this is also a great way to work on their language skills.

Teacher Julie Moore comments:

News from Home is one of the favorite activities for both students and staff. As 90% of our students are nonverbal, it is such a wonderful way for them to share what they did the night before. As a teacher, I personally love this because it expands the communication between home and school, an integral part of a child’s education.

We also have great positive feedback from our parents:

Nick excitedly listens to a message from home.

News from Home is a wonderful addition to the already excellent communication flow between BNI and teachers/therapists and parents. We are able to ask the boys “What did you do at school today” or “What did you do in OT today?” They are able to answer us now, with the push of a button. We look forward to it every day. (Hayley, mom of 2 ELBS students)

Parents are essential member of a child’s team. As a result of including them in our daily communications, we have only strengthened our ability to “make dreams come true” for our students!

This Saturday is the 19th annual Family Health & Fitness Day, a national health and fitness event for families. Always held on the last Saturday in September, this day is a national holiday dedicated to promote family involvement in physical activity and healthy living.

Family Health & Fitness Day was conceived, in part, as a response to the U.S. Surgeon General’s Report on Physical Activity and Health. This landmark report made it clear that health benefits can be obtained from moderate physical activity on a regular basis. In addition, the Surgeon General’s Report stated that the majority of Americans, and especially children from 12 to 21, are not exercising nearly enough.

The obesity rate for children with disabilities in the United States is 38% higher than for children without disabilities. Unfortunately, multiple barriers may stand in the way of fitness for children with disabilities. Many parents are apprehensive to encourage their children to become involved because of the range of obstacles they may encounter. However, children with disabilities want to have friends, enjoy activities, have a break from parents, and be included like everyone else.

Though the exact amount of exercise will vary depending on your child’s abilities, it is recommended that most children get 60 minutes of activity a day. By engaging your child in an active lifestyle you help him or her to burn calories to promote a healthy weight, improve sleep patterns and self-esteem, and decrease repetitive behaviors that may be caused by stress.

Exercise is a daily routine for Ryan and me. It’s not new; we began when he was seven with running around the block. I knew he would never be able to play on a team, so I introduced activities that he could do on his own early on. Today, he is so programmed to exercise before going to work that he wakes me up at 5:30 to say, “It’s time to go to LECOM!” And if I’m not feeling well, he is genuinely disappointed that he can’t go. Once at the gym, he heads to a treadmill and runs for an hour, paying no attention to what I’m doing. It’s a great break for him, and me.

Here are some fun ideas that I’ve tried to get active this weekend:

• Compete in an Obstacle Course in Your Backyard
• Go Apple Picking or Walk Through a Pumpkin Patch
• Organize an Outdoor Scavenger Hunt
• Bike, Hike, or Jog on Presque Isle Trails – it’s beautiful in the fall!

What are some of your favorite activities to do to promote family health and fitness? I would love to hear from you!

National Direct Support Professional Recognition Week, September 13th – 19th, 2015, is a great opportunity for organizations and communities to honor the direct support workforce and the tremendous difference they make each day in the lives of millions of Americans with disabilities.

You’re probably thinking: “What is the role of a direct support professional?” since this job title is relatively new. 20 years ago, a person might have been called “Aide” or “Paraprofessional.” Today, they are most commonly referred to as “Direct Support Professional.” Regardless of their title, the job description is typically the same:

A direct support professional is a person who assists an individual with a disability to lead a self-directed life and contribute to the community, assists with activities of daily living if needed, and encourages attitudes and behaviors that enhance community inclusion. (Source)

At the Barber National Institute, Direct Support Professionals are an integral part of our team. They support our fundamental belief that learning is a lifelong process, and that all individuals should be provided the opportunity to reach their greatest potential.

To honor our DSPs, we created banners for the day programs, sent cookie trays to each of the programs and entered each staff member into drawings for gift cards.

People who need support are more likely to fulfill their life dreams if they have well-trained, experienced, and motivated people at their side in long-term, stable, compatible support relationships. These are the people who we hire as Direct Support Professionals. They are truly “Making Dreams Come True!”

Resource: National Alliance for Direct Support Professionals: https://www.nadsp.org/

Let the festivities begin! Yesterday, we celebrated Founder’s Day, held each year on the birthday of Dr. Gertrude Barber. When this day comes around, I always like to look back and reflect on her accomplishments, which in turn allowed us to become the Barber National Institute.

The year was 1952, and Gertrude Barber was a psychologist with the Erie School District. It was her responsibility to tell parents of children with disabilities that they could not attend school. At the time, the two options were to remain at home or go to an institution, typically far away from their families. She, along with many parents, wanted something better for their children. Thus began the search for donated space and volunteer teachers to create the first classroom.

Erie’s first group home.

There was no funding in the early years. The program was supported by ice cream socials, card parties, and raffles. Dr. Barber used to say that all of their money could fit a cigar box – and it did!

It wasn’t until the mid-60s that state funding finally became available through the MH/MR Procedures Act, as well as the Department of Education. Fortunately, our programs were already in place and could be immediately funded. We were many years ahead of others in the field.

The 70s was a decade of huge growth for us. We were now an Approved Private School, serving children whose school districts could not offer an adequate education.

Dr. Barber discusses operations in Philadelphia.

Additionally, we established several community group homes and satellite programs in Girard and Corry. We had a groundbreaking ceremony for our new therapeutic swimming pool and our physical and occupational therapy facilities.

In the 80s, we established an adult rehab, employment, and training center, added more classrooms to our school, and initiated an Inclusive Day Care program and a Child Development Center. At times, it seemed as if our facilities could not grow fast enough to meet the needs of community. By the time the 90s rolled around, we were ready to expand across the state and opened residential services for adults in Philadelphia. Not too long after, we opened the same services in Pittsburgh.

Groundbreaking ceremony from Project 2000.

Project 2000, Dr. Barber’s ultimate quest, was our first major capital campaign since 1966. Our goal was that this funding could provide a new school and training center. $7 million later… Dr. Barber announced the Project’s success and broke ground! A few weeks later, Dr. Barber passed away as she traveled to Florida for her first vacation in many years. Most of you know the rest of the story, but I wanted to share the stories of our history, so you can celebrate Founder’s Day along with us!