All About Autism

As you’re getting ready for Halloween this Saturday, you’re probably thinking about how best to prepare your son or daughter for an event-filled evening. Thankfully, there are a lot of resources out there today. Much different than even 5 years ago! So I decided to share with you some of those resources, as well past Halloween blogs. I still enjoy looking at pictures of Ryan’s first Halloween as Superman, and his preschool rendition of the Tin Man from Wizard of Oz.

Today was our annual Halloween parade. 150 children dressed in elaborate costumes and paraded through our halls, all while we were experiencing a monsoon outdoors! You’ll enjoy seeing some of their pictures, I’m sure!

PS – Yes, Ryan’s favorite Halloween activity is the Haunted House. He went to 2 this year!

5 ways to help your special kid love Halloween as much as you do!: http://bit.ly/1PUTZzl

Top 10 Strategies “To Ensure Halloween is Healthy and Stress-Free for your Family” from Autism File Readers: http://bit.ly/1vIVQut

Blog Links:

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In honor of National Down Syndrome Awareness month, I asked colleague and good friend Rhonda Schember if she would do me the honor of writing a blog. In her words:

“Rhonda and Joe Schember live in Erie and are the proud parents of Jaime, Joe and Jodi.  Rhonda is a semi-retired writer/volunteer and Joe is an executive at PNC Bank.  Jaime, 32, lives in San Francisco, CA and works for Google ATAP… Joe, 30, lives in Albany, NY and works for Mohawk Fine Papers…and Jodi, 30, lives at home and is the President and CEO of Club Jodi!”

I so appreciate Rhonda sharing her story with us, and I hope you enjoy it as well.

~ Maureen

The journey from childhood to adulthood is seldom simple…or straightforward. As each child matures, the “learning curve” changes.

But when a child is born with special needs, that learning curve doesn’t go away. Rather, it’s adapted to include changes through every stage of development. All children can learn – some just learn differently.

Luckily, when our daughter, Jodi, was born with Down syndrome, she arrived as part of a rare package deal. She had a twin brother, Joe. She also had a two-year old sister, Jaime, who immediately considered the twins HER babies.

Together, as a family, we embarked on a journey into unfamiliar territory. We had a lot to learn about Down syndrome – the sooner, the better!

Admittedly, with three children under three, we were in survival mode most of the time. But we experienced an important lesson during those early years. Simply put – we could do this.

Through the combined efforts of therapists and educators, physicians and caseworkers, Jodi made progress. But we never lost sight of the fact that she had a secret weapon at home. She had a twin brother…and an older sister.

As one therapist pointed out, Joe would become Jodi’s best teacher. When Jodi couldn’t roll over or stand, Joe would do it first. If she took too long to copy him, Jaime would push her over or lift her up…and I would hold my breath!

Eventually, Jodi got the idea. There was always someone there for her to watch and imitate. She also had a cheer leader and coach just 2 years older.

Never was that more evident than when the kids were watching Sesame Street one morning. Jodi was still non-verbal at this point and the “word” of the day was not particularly easy. But Joe kept repeating it for her. When she didn’t reply, he jumped up, took her cheeks in his hands and firmly said, “Jodi say IDEA.” And she did…as clear as day…IDEA! No Mama or Dada, her first spoken word was IDEA!

Joe helps Jodi say her first word.

Joe had stumbled into that teachable moment. I sat there in tears and Jaime jumped into Mommy mode – making them repeat it, over and over, until Daddy came home!

Despite the detours and challenges of parenthood, we discovered that those unexpected triumphs can ultimately direct a child’s path to success. They give us hope and determination, but it’s often the siblings who provide the inspiration.

We’re reminded of that every day when Joe and Jaime call from opposite sides of the country to check in on their sister. After 30 years, the love they share is priceless…the bond, unbreakable…and the journey, far less frightening.

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. After the positive response I received when I posted Top Research Stories of2014, I thought I would share on a monthly basis stories that caught my eye.

~ Maureen

Apple Lends Hand to Autism Research

Apple is teaming up with autism researchers in an effort to assess whether the iPhone could be used to help identify young children who may be on the spectrum through an app called “Autism & Beyond.” The app includes a parent questionnaire as well as a series of short videos for the child to watch, which are designed to elicit various emotions. Using the iPhone’s camera function, analytical software within the app will assess the children’s facial responses. Researchers hope to collect information from children 1 to 6 years three times each over the course of six months.

Read the full article here.

Many Kids with Mental Health Issues See Only Pediatricians

Using data from a national survey, the researchers found that about 35% of children receiving mental health care in the past year had appointments only with their primary-care physicians, compared with about 26% who saw only psychiatrists and 15% who saw only psychologists or social workers.

Read the full article here.

Wide awake: Why children with autism struggle with sleep

Ruth O’Hara, associate professor of psychiatry and behavioral science at Stanford University in California, is leading a study to understand why so many children with autism have so much trouble sleeping. Sleep disturbance impacts cognition, mood, and behavior — domains that are also affected by autism. By improving sleep, symptoms in these areas may also improve.

Read the full article here.

Tune in next month for an update on autism research!

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!